Wednesday late night post...Don't jump to any conclusions before reading the whole thing....
Since we seem to be in a less critical spot than earlier this week, I will be a little more reflective tonight. Maybe that will help put me to sleep, so I can get my best night's sleep in a while.
Perception is everything. Treat me like a king and I will believe I am a king. Treat me like I am dieing and I will die. It's been interesting that the nursing staff has treated Trish more like a hospice case than someone who has a chance since we came back from the ER and CVDL Saturday afternoon. Last night, Trish's siser Kath and I were sure we were witnessing Trish dieing as we held her hands and she coughed up flem. I have held Trish many times when she looked like crap and vomitted or coughed up bloody chemo filled flem, never before did I hink she was one her last stand. The way the nursing staff has prepped us this week, we were convinced that the only way this could end was in death. While Trish receives the sacrament of the Annointing of the Sick each time she is admitted to the hospital. She has received what sounds much more like the "last rites" (old name for the same sacrament) three times in the last four days.
All talk was focused on pain reduction and dieing. Along comes our favorite fellow -- who was slowed down by her own flu earlier this week (Dr. Griffiths)...Now we are reducing pain meds to find a happy medium between conscious conversation and pain reduction. I think we have indeed found that happy place on the pain meds and Trish is once again visiting with us and enjoying it. Previously she was just out like a light with occasional lucent periods.
They also took an ultra sound today in hopes of seeing if there was any other intervention necessary to restart the kidneys. Basically as a result of the internal bleeding, Trish had major system failures including her renal system (kidneys). Her kidneys which were susceptible to damage during chemo, have never been affected or harmed along our two year journey and before Saturday were chemically sound. Now they are the system of the most concern, Trish needs to purge a lot of crap in her bod and needs her kidneys to start functioning big time. If they don't start the docs can offer dialysis -- hopefully as a one time intervention to clean things out and than with less overwhelming conditions her own will kick in and help return the whole body to normal.
Speech and memory appear to be also affected by the truama of the lost blood pressure and bleeding. This may just be temporary until the toxins in her body can be purged or it could be the sign of damage due to oxygen loss from the trauma.
We are still in a very precarious spot and if Trish pulls off yet another recovery, from yet another set back, I will be more amazed than ever. It will also mean that we will likely be here well past our original go home date of November 9th.
A few days before this incident occurred, I called Trish my Timex. A very old commercial for the "affordable" watch featured John Cameron Swayse. He would show the watch in a rough condition, like on the bow of a motor boat, pull the watch off and put it on his wrist showing that it was still working. The tag line was " Timex. Takes a licking and keeps on ticking." That's my Trish. Dr. G has shared with the medical team that she is a like a cat and has nine lives. By my count, these are the lives she's redeemed so far: 1) Vesivegal on her second night of chemo in Oct 2005, 2) sedated fall and hematoma in January 2006, 3) cerebellar toxicity and fall in April 2007, 4) Constipation which was really an infection which led to a hyterectomy in May 2007, 5) Bone Marrow Transplant in July 2007, 6) Graft versus Host Disease worse than anything else she has experienced in August/September 2007, 7) The great gelato incident of 2007 leading to removal of her gall bladder......that leaves only two lives left for her to work with and I am hoping that she will use one up here.
Please continue with the praying and positive thoughts. They can and will make a difference. It will still be a very steep climb for Trish to come out of this place we find ourselves, but with all of us by her side I am confident she will not let us down. I pray that her body is still strong enough to complete the journey.
Thanks to everyone for your continued support, your calls and emails and everything.
Wednesday, October 31, 2007
2:29pm Wednesday.
One more shot at a miracle. Dr. Griffiths came by and asked them to lessen her pain meds in hopes that her pressure would come up more naturally and with less help from the NEO drugs. They will also do an ultra sound to determine if there is any intervention that can be done to return her kidney functions (most likely draining fluid pressing on them). So there is a possibility - it however remains small. Still giving us reason to hope and pray.
One more shot at a miracle. Dr. Griffiths came by and asked them to lessen her pain meds in hopes that her pressure would come up more naturally and with less help from the NEO drugs. They will also do an ultra sound to determine if there is any intervention that can be done to return her kidney functions (most likely draining fluid pressing on them). So there is a possibility - it however remains small. Still giving us reason to hope and pray.
Tuesday, October 30, 2007
6:40pm Tuesday.
Trish's latest chemistries are showing signs of weakness. Her kidney enzymes and liver enzymes are elevated. The "NEO" - the med used to raise her blood pressure - started this morning at .9 and is now running at 3.6, significantly higher showing that she needs some extra help maintaining her pressure. Her hematacrit is holding in the 30's still showing signs of no or reduced internal bleeding. We are in a day to day mode. Staying up with her last night really depleted me and I have asked her sister Kath to spend the night with us tonight so we can alternate being with Trish. While there is always still room for a miracle, she is showing signs of weakness. Her chest is starting to hurt feels like heartburn she says.
Trish's latest chemistries are showing signs of weakness. Her kidney enzymes and liver enzymes are elevated. The "NEO" - the med used to raise her blood pressure - started this morning at .9 and is now running at 3.6, significantly higher showing that she needs some extra help maintaining her pressure. Her hematacrit is holding in the 30's still showing signs of no or reduced internal bleeding. We are in a day to day mode. Staying up with her last night really depleted me and I have asked her sister Kath to spend the night with us tonight so we can alternate being with Trish. While there is always still room for a miracle, she is showing signs of weakness. Her chest is starting to hurt feels like heartburn she says.
10:29am Tuesday.
News from rounds this morning. Trish's crit is good and holding, this is encouraging, but we are far from the miracle we are all hoping and praying for. Dr. Jones says Trish's billirubin is down as well - that's also good. As for Trish's swelling legs he says that's normal for the current condition and it will self-correct if she continues to get better. They tried to reduce the pain med to find a better medium between conscious conversation and pain relief, but Trish said she was starting to feel some pain, so they went back up. We will likely try again. If Trish continues to show signs of improvement they will begin nutrition in a day or two. She asked me this morning if she had epilepsy -- I think she knows that her speech and mind are slow right now (mostly from the pain meds we all think) and because of that she thought she might have epilepsy...I explained to her about the bleeding in the belly and she seemed to understand it. We can still go either way and you can still pray strong for that miracle, the doctors still feel it is possible and as you know -- the definition of a miracle is that it is something impossible.
News from rounds this morning. Trish's crit is good and holding, this is encouraging, but we are far from the miracle we are all hoping and praying for. Dr. Jones says Trish's billirubin is down as well - that's also good. As for Trish's swelling legs he says that's normal for the current condition and it will self-correct if she continues to get better. They tried to reduce the pain med to find a better medium between conscious conversation and pain relief, but Trish said she was starting to feel some pain, so they went back up. We will likely try again. If Trish continues to show signs of improvement they will begin nutrition in a day or two. She asked me this morning if she had epilepsy -- I think she knows that her speech and mind are slow right now (mostly from the pain meds we all think) and because of that she thought she might have epilepsy...I explained to her about the bleeding in the belly and she seemed to understand it. We can still go either way and you can still pray strong for that miracle, the doctors still feel it is possible and as you know -- the definition of a miracle is that it is something impossible.
7:38 am Tuesday.
Trish was up a lot last night. She could carry on a conversation. Sometimes they made sense, sometimes not. Dr. Matias Holdoff just came in, he's a fellow from Hamburg, Germany who worked with us during Trish's original chemo rounds. He told me that the bleeding appears stopped, Trish's Crit held again overnight. She still needs blood pressure meds to keep her pressure up. Her belly remains swollen with the leaked blood. Her legs are also swollen. She is coughing flem this morning for the first time, but she is able to cough and than I use the suction wand to get it out of her mouth. We continue to hope for a not so ordinary miracle today.
Trish was up a lot last night. She could carry on a conversation. Sometimes they made sense, sometimes not. Dr. Matias Holdoff just came in, he's a fellow from Hamburg, Germany who worked with us during Trish's original chemo rounds. He told me that the bleeding appears stopped, Trish's Crit held again overnight. She still needs blood pressure meds to keep her pressure up. Her belly remains swollen with the leaked blood. Her legs are also swollen. She is coughing flem this morning for the first time, but she is able to cough and than I use the suction wand to get it out of her mouth. We continue to hope for a not so ordinary miracle today.
2:00 a.m. Tuesday. The rest of the family left about 10pm today. Andy came back for a short visit at about 11pm. Trish slept most of the day today, but has been quite restless in the time since Andy left. Just when I think she wil rest and I get comfortable in the chair, she'll call out my name and ask for some help. Because of the sedation or maybe her weakness or both it is not always easy to understand her. I remember talking to my grandmother after a stroke and having trouble understanding what she wanted to say or my neighbor with muscular dystrophy. This is so much harder for me tonight. I find myself calling the nurse in to help with things I have easily done before. Trish platlets and crit appear to be holding as of the just past midnight labs. Her legs are swelling with fluid. Her jaundice from the GvHd liver damage looks much better in her skin and eyes. She still has her big beautiful grin and it still warms my heart. She appears to be resting again now and I will try again to sleep.
Monday, October 29, 2007
3:26 pm Monday. Trish received some platelets today. So far her crit and pressures are holding. Her kidneys appear to be functioning today. They have always been perfect, but the trauma of the internal bleeding reduced her kidney function until today. Condition remains guarded, but she does appear to be stable and potentially recovering. The docs say they have never seen anything like this. The surgeons review the case each day to see if any surgical intervention is needed and so far it is not. No one is confident how this will end, but there is still reason to hope and pray, so please continue to do so. Thank you for your increased support at this toughest hour of our two year journey.
Expect and Pray for a miracle
Late tonight Trish's blood pressure is holding steady without the help of drugs. We are waiting to see if her crit is holding. While far from out of the woods, we can still pray for and expect a miracle.
Sunday, October 28, 2007
9:25pm Sunday.
Trish is resting comfortably. She wakes up every so often and talks to us. The blood products have stopped and we are just waiting. We are all here with her and we know that that "we" extends out to so many people -- life long friends and people we have never met and many more in between. All of you have made our two year journey easier. Trish is an amazing lady. Many of you have told me how much she has taught you by her example in her journey.
Trish is resting comfortably. She wakes up every so often and talks to us. The blood products have stopped and we are just waiting. We are all here with her and we know that that "we" extends out to so many people -- life long friends and people we have never met and many more in between. All of you have made our two year journey easier. Trish is an amazing lady. Many of you have told me how much she has taught you by her example in her journey.
I wanted to make a post to answer some questions we have received. Trish is resting comfortably and getting blood products in hopes that her leaks will clot. It's a quiet time as the boys and her Mom and sister get some rest and I am alone with her.
Trish was doing so well. Friday we went shopping and she ate and drank as normal. What happened overnight or Saturday morning was like you or I having a heart attack. It wasn't directly related to the Leukemia or GvHd, but by all means it was made worse as a result. On Saturday they repaired a leak in an artery (I think it was the hepatic artery - the one that brings blood to the liver), but they also noticed several anuerisms in other vessels in the same area.
The leak could have been caused by the gall bladder surgery, GvHd or simply an existing anuerism in a newly more weakened vessel as a result of GvHd. The area and Trish are too fragile to try any other sugical interventions to make repairs. The miracle we pray for is that the blood and other meds clot the leaking vessels and it would truly be a miracle if this happens.
We were so looking forward to returning home in about a week. Nothing could have foretold what happened yesterday to change our hope into despair. The doctors have done everything they could do. There are other issues too like nutrition, other systems slowing down, she is very frail.
Please keep praying.
Trish was doing so well. Friday we went shopping and she ate and drank as normal. What happened overnight or Saturday morning was like you or I having a heart attack. It wasn't directly related to the Leukemia or GvHd, but by all means it was made worse as a result. On Saturday they repaired a leak in an artery (I think it was the hepatic artery - the one that brings blood to the liver), but they also noticed several anuerisms in other vessels in the same area.
The leak could have been caused by the gall bladder surgery, GvHd or simply an existing anuerism in a newly more weakened vessel as a result of GvHd. The area and Trish are too fragile to try any other sugical interventions to make repairs. The miracle we pray for is that the blood and other meds clot the leaking vessels and it would truly be a miracle if this happens.
We were so looking forward to returning home in about a week. Nothing could have foretold what happened yesterday to change our hope into despair. The doctors have done everything they could do. There are other issues too like nutrition, other systems slowing down, she is very frail.
Please keep praying.
The prognosis is not good. While they were initially able to stop Trish's internal bleeding yesterday, they believe it started again last night.
Trish's Mom and Sister and our youngest son Matt arrived last night around midnight. Andy our oldest arrived this morning, leaving from a debate tournament in Gainesville. Everyone is having a good visit with Trish. She slips in and out of consciousness, but still has her sense of humor and trademark smile.
The doctors have told us that she may pass between the next few hours or few days. I will insure updates are made by someone if I can't make them.
Trish's Mom and Sister and our youngest son Matt arrived last night around midnight. Andy our oldest arrived this morning, leaving from a debate tournament in Gainesville. Everyone is having a good visit with Trish. She slips in and out of consciousness, but still has her sense of humor and trademark smile.
The doctors have told us that she may pass between the next few hours or few days. I will insure updates are made by someone if I can't make them.
Saturday, October 27, 2007
Please Pray for Trish Tonight
This is Brian Harrington posting tonight for Chip.
Today started out "normal" for Chip & Trish, but after she passed out twice, she was taken to E/R. She had internal bleeding from her gall bladder surgery. A procedure was done to stop the bleeding; however, she remains in guarded critical condition.
Trish needs our prayers tonight. "Where two or three are gathered in My name, there I am also"
Today started out "normal" for Chip & Trish, but after she passed out twice, she was taken to E/R. She had internal bleeding from her gall bladder surgery. A procedure was done to stop the bleeding; however, she remains in guarded critical condition.
Trish needs our prayers tonight. "Where two or three are gathered in My name, there I am also"
Friday, October 26, 2007
Friday Update
Trish and I were up early this morning (Friday), she had ECP (photo pheresis) this morning. Her liver functions were better today, but not quite as good as they had been before yesterday. If you miss the update, always check he counts. I update that as soon as I get them from the nurses, even if I don't get around to posting an update.
We have the day off tomorrow (Saturday) and will head up to Aunt Mary's and will likely check out of the patient house on Monday. Trish will have an IPOP appointment on Sunday to prep for ECP on Monday. She should have a Mon-Wed-Fri IPOP schedule through our departure and next week will be her last week of two per week ECP treatments. The following week I have one appointment her at Hopkins and we hope to start 1 a week at Memorial West in Pembroke Pines the following week. Keep your fingers crossed and hands crossed in prayer that no hiccups emerge that keep us here beyond our current plan.
Just to get a taste of "normal" today. Trish and I went to Costco and had lunch at Chick-Fil-A -- She ate a grilled chicken patty and tomatoes (basically their grilled chicken sandwhich without the bread). Tonight we cooked a healthy pasta and shared with another couple here at the house. They bought a pizza and Trish was yearning a piece so bad, she took one bite of mine. The stomach ache she got after that should cure her of satisfying those cravings till her digestion gets better post surgery.
I'm tired and have a lot of packing to do tomorrow, so I'm going to get some sleep now, go get a gelato and enjoy your night or day....
We have the day off tomorrow (Saturday) and will head up to Aunt Mary's and will likely check out of the patient house on Monday. Trish will have an IPOP appointment on Sunday to prep for ECP on Monday. She should have a Mon-Wed-Fri IPOP schedule through our departure and next week will be her last week of two per week ECP treatments. The following week I have one appointment her at Hopkins and we hope to start 1 a week at Memorial West in Pembroke Pines the following week. Keep your fingers crossed and hands crossed in prayer that no hiccups emerge that keep us here beyond our current plan.
Just to get a taste of "normal" today. Trish and I went to Costco and had lunch at Chick-Fil-A -- She ate a grilled chicken patty and tomatoes (basically their grilled chicken sandwhich without the bread). Tonight we cooked a healthy pasta and shared with another couple here at the house. They bought a pizza and Trish was yearning a piece so bad, she took one bite of mine. The stomach ache she got after that should cure her of satisfying those cravings till her digestion gets better post surgery.
I'm tired and have a lot of packing to do tomorrow, so I'm going to get some sleep now, go get a gelato and enjoy your night or day....
Thursday, October 25, 2007
The ride continues
You remember a few weeks (or maybe days ago) -- I seem to have lost the ability to know what time/day/date etc it is -- there was a roller coaster somewhere that got stuck. They were able to get the ride down, lowering the car into the station, but after the call arrived in the station, the hydraulic lines exploded and poured hydraulic fluid over all the riders.
That's kind of what today feels like for me.
We woke up after sleeping in and headed over to IPOP. Trish had a good night and was feeling good this morning. She looked good too. We were excited to begin the process of recovery to get home. Her platelet account was low and she was scheduled to get platelets today. I ran errands and worked while she was in IPOP.
Two roller coaster corkscrews came our way during this time. Trish (and most patients) get pre-meds before platelets -- it is usually Benadryl. Usually the side effect is sleep. Occasionally the side effect is anxiety -- you feel like you are wound up and jumping out of your skin. Usually Trish only gets this when they give her more than a dose of 37.5 (I forget the units). For some reason, when her nurse was about to give her 37.5 of Benadryl, Trish stopped her and said just give me .25 and go up if needed. Boy was it a good thing she said this....If she had gotten 37.5, she would have been a whole lot sicker. She got .25 and got the anxiety side effects. To counteract this, they give vitamin A -- Ativan (not really a vitamin folks). This of course makes her sleepy and now she is groggy instead of awake and happy as she started the day, her speech is slurred and she is resting.
This was the more mild of the two curves we rode today. The bigger and scary curve came when the nurse printed Trish's lab reports for us. Her liver function tests, if the lab test is accurate, have worsened. The billirubin is up about 10 points to 51.5. The ALK and AST also rose significantly (click on the counts link n he left column to see these and read the post from earlier this week for an explanation). This is scary stuff. We are all hoping that this is more lab error than anything else. The nurse did mention that the lab said the blood samples were clotting and difficult to test. Let's all hope and pray that's the primary issue and these counts are really lower. It seems everytime we get excited about a significant move forward, we get kicked down a few notches.
In other news, Dr. Bolanos-Meade made a special trip to talk to us today and let us know that he, Dr. Jones and Dr. Griffiths had tea this morning and all agreed that Trish should continue ECP at least once a week, once she is home. So I have already started the wheels turning to make thise appointments. This also means that we will leave Trish's catheter in place, until her body recovers to the point where she might prefer being suck with a needle weekly instead of having the catheter.
Folks, we are still far from the safe zone and today's labs serve as a reminder of that and spook us into less happier moods than we have known in the days since her gall bladder removal. Please continue to pray, send good cheer and root Trish on to success.
We will likely move back to Aunt Mary's this weekend. We have been residents of the Hackerman-Patz house since August 7th when Trish was discharged from the actual transplant and we are looking forward to actually being in a home again.
That's kind of what today feels like for me.
We woke up after sleeping in and headed over to IPOP. Trish had a good night and was feeling good this morning. She looked good too. We were excited to begin the process of recovery to get home. Her platelet account was low and she was scheduled to get platelets today. I ran errands and worked while she was in IPOP.
Two roller coaster corkscrews came our way during this time. Trish (and most patients) get pre-meds before platelets -- it is usually Benadryl. Usually the side effect is sleep. Occasionally the side effect is anxiety -- you feel like you are wound up and jumping out of your skin. Usually Trish only gets this when they give her more than a dose of 37.5 (I forget the units). For some reason, when her nurse was about to give her 37.5 of Benadryl, Trish stopped her and said just give me .25 and go up if needed. Boy was it a good thing she said this....If she had gotten 37.5, she would have been a whole lot sicker. She got .25 and got the anxiety side effects. To counteract this, they give vitamin A -- Ativan (not really a vitamin folks). This of course makes her sleepy and now she is groggy instead of awake and happy as she started the day, her speech is slurred and she is resting.
This was the more mild of the two curves we rode today. The bigger and scary curve came when the nurse printed Trish's lab reports for us. Her liver function tests, if the lab test is accurate, have worsened. The billirubin is up about 10 points to 51.5. The ALK and AST also rose significantly (click on the counts link n he left column to see these and read the post from earlier this week for an explanation). This is scary stuff. We are all hoping that this is more lab error than anything else. The nurse did mention that the lab said the blood samples were clotting and difficult to test. Let's all hope and pray that's the primary issue and these counts are really lower. It seems everytime we get excited about a significant move forward, we get kicked down a few notches.
In other news, Dr. Bolanos-Meade made a special trip to talk to us today and let us know that he, Dr. Jones and Dr. Griffiths had tea this morning and all agreed that Trish should continue ECP at least once a week, once she is home. So I have already started the wheels turning to make thise appointments. This also means that we will leave Trish's catheter in place, until her body recovers to the point where she might prefer being suck with a needle weekly instead of having the catheter.
Folks, we are still far from the safe zone and today's labs serve as a reminder of that and spook us into less happier moods than we have known in the days since her gall bladder removal. Please continue to pray, send good cheer and root Trish on to success.
We will likely move back to Aunt Mary's this weekend. We have been residents of the Hackerman-Patz house since August 7th when Trish was discharged from the actual transplant and we are looking forward to actually being in a home again.
Wednesday, October 24, 2007
Quick Wednesday Update
Trish is undergoing ECP at the moment, but I'll pick her up shortly and we will head back to her room to be discharged.
Her first IPOP appointment is tomorrow at 11am. We hope to be in IPOP only for about two weeks and than on our way home - finally.
As always though, everyday is its own reward and challenge. We won't know we are really going home until we get in the car and start the journey, but we are closer than we have ever been.
So it is probably a good time to say thank you. This has been an amazingly tough two years, filled with unique challenges that have tested not only our family, but our friends and the medical team as well. So many of you have helped us along in this journey and in so many ways. We are eternally greatful to each and everyone of you. May God Bless you and may you know the Peace of God which is beyond all human understanding.
Her first IPOP appointment is tomorrow at 11am. We hope to be in IPOP only for about two weeks and than on our way home - finally.
As always though, everyday is its own reward and challenge. We won't know we are really going home until we get in the car and start the journey, but we are closer than we have ever been.
So it is probably a good time to say thank you. This has been an amazingly tough two years, filled with unique challenges that have tested not only our family, but our friends and the medical team as well. So many of you have helped us along in this journey and in so many ways. We are eternally greatful to each and everyone of you. May God Bless you and may you know the Peace of God which is beyond all human understanding.
Tuesday, October 23, 2007
Tuesday Update
Tuesday passed without major incident. They removed Trish's pain pump today and she ate and walked some more. I cleaned up the apartment so that it is ready for her to get out tomorrow. The plan is that she will be discharged tomorrow and I alread setup her first IPOP appointment for Thursday at 11:30am....Our goal is to spend two weeks in IPOP and go home.
We had an interesting conversation with Dr. Jones tonight. Dr. Jones actually took the call from Dr. Fu to admit Trish back in Ocober 2005. This is the first time we actually met him -- he is the director of bone marrow transplants for Hopkins.
I asked him about Trish's liver function and the fact that two of the three liver function enzymes were nearly normal and the ALK was not descending with much enthusiasm and neither was the billi. He explained that this is a good sign and normal. The AST and ALT enzymes coming down, show that Trish's liver is functioning. The ALK and billi staying high are indicative of the fact that the liver was damaged by GvH. Together it is indicative that the GvH is no longer attacking the liver (they'd all be high and climbing if she was still under attack).
We asked him about ECP and how often Trish should continue it once we are home. He originally earlier in the conversation said Trish should continue the FK506 (Tacrolimus) and ECP when home, than he said that there really is no known proof that immune therapies are prophlylactic for GvH. Evenually all GvH stops, the goal of treatment is to stop it before it kills you -- especially in acute GvH. Since Trish's GvH is by all indications stopped, she may not need intense ECP anymore. It was originally started to help stop the ECP from causing liver failure. Now that the liver biopsy shows it is stopped, we may not need to continue it.
We will likel continue it until we come home and I'd say there is a good chance we will continue i at home, just very likely at a less frequent pace. This will be my ever nagging question over the next two weeks. Trish and I are looking to visiting Aunt Mary this weekend and possibly moving back to her house on Tuesday next week when our current payment at the patent house runs out....I feel like we will need a hyperbaric chamber to help us adjust to being home. It seems like home and the rest of our life is so disconnected to the life we have been leading since February.
We had an interesting conversation with Dr. Jones tonight. Dr. Jones actually took the call from Dr. Fu to admit Trish back in Ocober 2005. This is the first time we actually met him -- he is the director of bone marrow transplants for Hopkins.
I asked him about Trish's liver function and the fact that two of the three liver function enzymes were nearly normal and the ALK was not descending with much enthusiasm and neither was the billi. He explained that this is a good sign and normal. The AST and ALT enzymes coming down, show that Trish's liver is functioning. The ALK and billi staying high are indicative of the fact that the liver was damaged by GvH. Together it is indicative that the GvH is no longer attacking the liver (they'd all be high and climbing if she was still under attack).
We asked him about ECP and how often Trish should continue it once we are home. He originally earlier in the conversation said Trish should continue the FK506 (Tacrolimus) and ECP when home, than he said that there really is no known proof that immune therapies are prophlylactic for GvH. Evenually all GvH stops, the goal of treatment is to stop it before it kills you -- especially in acute GvH. Since Trish's GvH is by all indications stopped, she may not need intense ECP anymore. It was originally started to help stop the ECP from causing liver failure. Now that the liver biopsy shows it is stopped, we may not need to continue it.
We will likel continue it until we come home and I'd say there is a good chance we will continue i at home, just very likely at a less frequent pace. This will be my ever nagging question over the next two weeks. Trish and I are looking to visiting Aunt Mary this weekend and possibly moving back to her house on Tuesday next week when our current payment at the patent house runs out....I feel like we will need a hyperbaric chamber to help us adjust to being home. It seems like home and the rest of our life is so disconnected to the life we have been leading since February.
Monday, October 22, 2007
My apologies for not getting around to posting the last 48 hours...here is an update....
I know that a number of you have been clicking away looking for an update since the good news Saturday post and have been worried because there has been no news.
Well someimes you just get carried away with stuff that needs to be done, sometimes you just get too tired. Please know that we appreciate your support and concern. There indeed continues to be good news.
Despite the lack of updates, you may have noticed that the Counts page has been updated and Trish's liver enzymes are nearly normal and her billi dropped significantly today. She was able to convince the docs to remove her nasal feeding tube this morning and has been eating ok today. I think the feeding tube was helpful. She is still dramatically underweight, but her legs, arms and face have filled out and she looks more normal now than she had looked in recent weeks.
She is slated to be discharged sometime after Wednesday. We will likely do at least two weeks of IPOP as an outpatient and than head home. I purchased tickets tonight, while we still have insurance. If we get to come home on the date I bought the ickets for -- we will leave on Friday Nov. 9 and be home around 2pm on Nov 10th. Don't count your chickens quite yet....we are still in day-to-day mode, even though it is starting to look real good.
It's interesting how things can change here. Our own story has had its ups and downs. From uncertainty over Trish's liver status to hope that things are going well. In recent weeks, we've been frustrated seeing people who were much sicker than Trish getting discharged and going home. We're not jealous, just frustrated. Now it looks like we will finally get our turn in a few weeks to be discharged, we will leave so many people behind who have been struggling for their own miracle. Hoping that they can be next. Hoping that they will not receive a set back. That they can move a step closer to freedom. To be disease free.
While you spend many hours praying for Trish. Trish and I spend our time praying for those who have become friends fighting cancers and other diseases along side of us. Do me a favor today, please remember our friends in your prayers today.
Well someimes you just get carried away with stuff that needs to be done, sometimes you just get too tired. Please know that we appreciate your support and concern. There indeed continues to be good news.
Despite the lack of updates, you may have noticed that the Counts page has been updated and Trish's liver enzymes are nearly normal and her billi dropped significantly today. She was able to convince the docs to remove her nasal feeding tube this morning and has been eating ok today. I think the feeding tube was helpful. She is still dramatically underweight, but her legs, arms and face have filled out and she looks more normal now than she had looked in recent weeks.
She is slated to be discharged sometime after Wednesday. We will likely do at least two weeks of IPOP as an outpatient and than head home. I purchased tickets tonight, while we still have insurance. If we get to come home on the date I bought the ickets for -- we will leave on Friday Nov. 9 and be home around 2pm on Nov 10th. Don't count your chickens quite yet....we are still in day-to-day mode, even though it is starting to look real good.
It's interesting how things can change here. Our own story has had its ups and downs. From uncertainty over Trish's liver status to hope that things are going well. In recent weeks, we've been frustrated seeing people who were much sicker than Trish getting discharged and going home. We're not jealous, just frustrated. Now it looks like we will finally get our turn in a few weeks to be discharged, we will leave so many people behind who have been struggling for their own miracle. Hoping that they can be next. Hoping that they will not receive a set back. That they can move a step closer to freedom. To be disease free.
While you spend many hours praying for Trish. Trish and I spend our time praying for those who have become friends fighting cancers and other diseases along side of us. Do me a favor today, please remember our friends in your prayers today.
Saturday, October 20, 2007
Saturday and the numbers are dropping big just like the Gators should drop Kentucky (I hope)
The Gators return to play this week after two discouraging loses and Trish is back with a vengeance as well. Two of the three liver enzymes have dropped so significantly over night that they are within 30 points of NORMAL for the first time in about two months. Additionally, the billirubin has also dropped. Her skin continues to look close to normal and her eyes remain a tad yellow (they are the last to change). If you haven't checked out the counts page in a while, now would be a good time. Look for the link on the left (Other Links, The Counts).
Folks things are truly looking up for the first time in a long time. Yet we both know that we are far from out of the woods yet.
The surgeons came by this morning and removed the surgical drian and her foley catheter was removed last night. She feels pretty good getting up and going to the bathroom now.
They ran the tube feedings last night at 10cc's an hour -- don't think they chose that to commemorate the band with the same name. That rate seemed too much for Trish and made her bloated. They stopped it and just resumed it around 11am today at 5cc's an hour. So far, that is working better. She wants to eat, so the tube feeding is really to help jump start her nutrition, while she eats things like cream of rice and wheat and jello -- not a lot of nutrition there. I may stop by Pitango's later today and pick up some sorbet for her. I think it will be a long while before we try any gelato (too high fat for a gall bladder-less person).
Celebrate our good news today, be nice to your liver, eat some gelato. Say a prayer of thanks. Breath deeply and enjoy the sun, the warm or cool breeze. Hug your son, daughter, mother, father, sister, brother, husband, wife, significant other or hell, just find a willing stranger. Don't take the gifts of life or the gift of life for granted this weekend. Then, say another prayer of thanks. Amen.
Folks things are truly looking up for the first time in a long time. Yet we both know that we are far from out of the woods yet.
The surgeons came by this morning and removed the surgical drian and her foley catheter was removed last night. She feels pretty good getting up and going to the bathroom now.
They ran the tube feedings last night at 10cc's an hour -- don't think they chose that to commemorate the band with the same name. That rate seemed too much for Trish and made her bloated. They stopped it and just resumed it around 11am today at 5cc's an hour. So far, that is working better. She wants to eat, so the tube feeding is really to help jump start her nutrition, while she eats things like cream of rice and wheat and jello -- not a lot of nutrition there. I may stop by Pitango's later today and pick up some sorbet for her. I think it will be a long while before we try any gelato (too high fat for a gall bladder-less person).
Celebrate our good news today, be nice to your liver, eat some gelato. Say a prayer of thanks. Breath deeply and enjoy the sun, the warm or cool breeze. Hug your son, daughter, mother, father, sister, brother, husband, wife, significant other or hell, just find a willing stranger. Don't take the gifts of life or the gift of life for granted this weekend. Then, say another prayer of thanks. Amen.
Friday, October 19, 2007
Friday Update
Trish continues to recover from the surgery. Her fetynol is on continuous flow still, but she hasn't pressed the button for a needed exra push all day. I suggested to her that she ask about ending the continuous flow and put it just on push as needed. She did two laps on one walk around the nurses station today -- that was great, I really didn't expect her to do more than one and the nurses yesterday were impressed when she did one full lap. They only expected her to go to the corner of her row and back. Trish likes pushing the envelope, doing a little more than required to get by. Excelling with all her might. This is what has gotten us this far and what will see us through this challenge. Only things out of her control can stop her.
We are waiting for Trish Uncle Charlie and Cousin Sandy to visit. Trish is pretty tired so I hope they ge her soon. This will be a great visit that Trish is looking forward too, so I hope she is up to it.
Her next ECP treatment is Wednesday and we hope that they will discharge her by the end of next week. Tonight they expect to start feeding her via the nasal tube they inserted during surgery. The tube runs from her left nostril to her intestine. The thought is that feeding her this way will be easier on the liver, than TPN (IV feeding) and give her more nutrition than she can eat by mouth at the moment.
Hope everyone has a great weekend. We will be doing laps.
We are waiting for Trish Uncle Charlie and Cousin Sandy to visit. Trish is pretty tired so I hope they ge her soon. This will be a great visit that Trish is looking forward too, so I hope she is up to it.
Her next ECP treatment is Wednesday and we hope that they will discharge her by the end of next week. Tonight they expect to start feeding her via the nasal tube they inserted during surgery. The tube runs from her left nostril to her intestine. The thought is that feeding her this way will be easier on the liver, than TPN (IV feeding) and give her more nutrition than she can eat by mouth at the moment.
Hope everyone has a great weekend. We will be doing laps.
Thursday, October 18, 2007
Thursday Update
Trish is mostly resting today, but she has spoken to a few folks on the phone. The nurses turned her bed into a chair so she could sit up for a while. After that she went for a lap around he nirses station. The one nurse walking with her said that she started slow and took off real fast for the rest of the lap. That's our Trish.
She plans on doing another lap later tonight. They are expecting to pull out the nasal feeding tube soon and have her focus on food by mouth only. This was a battle between the surgeons and the bone marrow team and I guess since the bone marrow team owns her, they won.
She is still in a lot of pain and presses the PCA every so often, but she is starting to move around. We are hoping to see the liver function numbers get better soon. Please keep praying for that turn around. Trish is still determined to get home before Matt's birthday on November 18th.
She plans on doing another lap later tonight. They are expecting to pull out the nasal feeding tube soon and have her focus on food by mouth only. This was a battle between the surgeons and the bone marrow team and I guess since the bone marrow team owns her, they won.
She is still in a lot of pain and presses the PCA every so often, but she is starting to move around. We are hoping to see the liver function numbers get better soon. Please keep praying for that turn around. Trish is still determined to get home before Matt's birthday on November 18th.
Wednesday, October 17, 2007
Trish resting back in her room in Weinberg
Trish is resting back at Weinberg now. She survived the very long hike from Blalock 7 to Weinberg 5B. She is using her PCA for pain as needed, but she still only rates he pain about a 5. The surgeons and the BMT docs debated putting a feeding ube in and the BMT didn't want it and he surgeons did. Since the surgeons owned her while she was under, she woke up with a feeding tube in her nose. We'll see if they use it or just pull it out in a few days. Trish would love to rest than eat. Her skin seemed a whole lot less yellow after surgery, so hopefully the liver will get on to the business of recovering now.
I unplugged her room phone and cell phone and will likely keep it unplugged for the next day. Recovery from this surgery is supposed to be about a week, I know my wife, she will find a way t o kick it much quicker than that. It's just how she does it. I have never known anyone who can face adversity quite the way she can. I am not even half as strong as her when it comes to that -- though I'd like to think I have other qualities that have helped her persevere. We are a well matched team.
If you are looking for something specific to pray for, wish for or will to happen, please focus on Trish's liver. That it can and does recover from the GvH damage and with the ugly gall bladder out of the way it finds a way to thrive.
I unplugged her room phone and cell phone and will likely keep it unplugged for the next day. Recovery from this surgery is supposed to be about a week, I know my wife, she will find a way t o kick it much quicker than that. It's just how she does it. I have never known anyone who can face adversity quite the way she can. I am not even half as strong as her when it comes to that -- though I'd like to think I have other qualities that have helped her persevere. We are a well matched team.
If you are looking for something specific to pray for, wish for or will to happen, please focus on Trish's liver. That it can and does recover from the GvH damage and with the ugly gall bladder out of the way it finds a way to thrive.
Just spoke with Trish
I just left recovery. Trish is looking good. She just rated her pain a 4 and told me the pain was a little better than with the hysterectomy.
They said she is doing so well that they will keep her in recovery till about 3pm (which is longer than normal), but than they will move her back to her room in Weinberg rather than sending her to ICU.
Aunt Mary, John and I will go get some lunch now and see her after that.
They said she is doing so well that they will keep her in recovery till about 3pm (which is longer than normal), but than they will move her back to her room in Weinberg rather than sending her to ICU.
Aunt Mary, John and I will go get some lunch now and see her after that.
Spoke to the doctor....
Trish is done and we are waiting for someone to let us know that she is doing well in the recovery/ICU area. They expect that to take about an hour. The doctor said the gall bladder was pretty large and adhered to most surfaces, but they were able to safely remove it. I asked him about the liver and he said that it looked pretty beat up, but they didn't damage it during this procedure.
9:48 - just got a call from the OR
and they are closing now. The doctor will be out shortly with an update, but all appears to be well. More after we speak with the doctor.
Just got a call from the OR
They just called from the OR at about 8:05am to tell me that they just started the procedure.
Surgery Update-a-thon
Welcome to gall bladder removal day....at least the third surgery that Trish has had in her struggle with AML and all of its effects.
I woke up early this morning (really I did), Trish called my cell a few times while I was in the shower to tell me they were coming at 6:30 instead of 7, but I was in her room by 6am and they didn't come till closer to 6:45.
Trish received a ton of platlets last night. They brought her platelet count up from 48 to about 122. Her INR (the bleeding coagulation time) was at 1.0 which is an improvement over the last time they had of 1.3. Dr. G told us that this is also one of the measures they look at to determine liver failure -- so o know that this improved and IS in the normal range is a good thing.
They wheeled Trish from Weinberg into Blalock, the original surgcal center on the 7th floor. I was kind of hoping they could do the surgery in the Weinberg surgical center -- it's newer, has a prep room before surgery and a better waiting room for me. BUT as this was a last minue scheduled procedure we had to settle for Blalock -- there's more operating rooms.
This time the let me wheel into the OR area with Trish and I was able to wait outside the OR with her before they brought her in to prep. At about 7:30 they brought her in to start the prep. They likely won't start the operation until 8:30 (afer the prep work is done and she is put to sleep). The nurse will let me know when the start the procedure, but for now I am in the waiting room.
I'll post updates as I get them. Trish is expected to be in surgery till about 11am or so and she will stay in the surgical ICU tonight. the nurse says she will have an intermediate care bed in the ICU -- this means that they don't expect her to need very critical care and the ICU stay is more precautionary. By morning, they should move her back to her room in Weinberg 5B.
Stay tuned. Keep praying. Thank you.
I woke up early this morning (really I did), Trish called my cell a few times while I was in the shower to tell me they were coming at 6:30 instead of 7, but I was in her room by 6am and they didn't come till closer to 6:45.
Trish received a ton of platlets last night. They brought her platelet count up from 48 to about 122. Her INR (the bleeding coagulation time) was at 1.0 which is an improvement over the last time they had of 1.3. Dr. G told us that this is also one of the measures they look at to determine liver failure -- so o know that this improved and IS in the normal range is a good thing.
They wheeled Trish from Weinberg into Blalock, the original surgcal center on the 7th floor. I was kind of hoping they could do the surgery in the Weinberg surgical center -- it's newer, has a prep room before surgery and a better waiting room for me. BUT as this was a last minue scheduled procedure we had to settle for Blalock -- there's more operating rooms.
This time the let me wheel into the OR area with Trish and I was able to wait outside the OR with her before they brought her in to prep. At about 7:30 they brought her in to start the prep. They likely won't start the operation until 8:30 (afer the prep work is done and she is put to sleep). The nurse will let me know when the start the procedure, but for now I am in the waiting room.
I'll post updates as I get them. Trish is expected to be in surgery till about 11am or so and she will stay in the surgical ICU tonight. the nurse says she will have an intermediate care bed in the ICU -- this means that they don't expect her to need very critical care and the ICU stay is more precautionary. By morning, they should move her back to her room in Weinberg 5B.
Stay tuned. Keep praying. Thank you.
Tuesday, October 16, 2007
Update - Surgery times confirmed
Trish's surgery is scheduled for 7:30 tomorrow Wednesday morning. The OR is booked from 7-11:30am, though they are not expecting it to last that long. She'll spend most of the rest of tomorrow in ICU and than come back to her room on Weinberg 5B to continue recuperating.
A decision has been made!
We are stil waiting for a confirming CT to know that nothing else is going on, but the surgeons are looking at putting Trish on the emergency schedule for gall bladder surgery first thing in the morning.
We expect the CT to confirm that the gall bladder is bad and nothing else is wrong and that Trish will be in surgery first thing tomorrow morning.
They are expecting to perform the surgery "open" the old fashioned way instead of laproscopically. The reason is that it will be safer for Trish and easier to repair anything else that might be an issue or go wrong during the procedure.
Everyone expects that the removal will put Trish back on the track to recovery from the GvH and allow her to eat again.
The only down side to the open surgery is that recovery times goes from 2-3 days to at least a week. But than we should be able to move forward to get her liver back o regeneraing and coming home.
They will pump her platlet levels up to over 100 tonight (they are currently at 59. As much as we dread surgery we all feel this is Trish's best chance to get back on track to recovering her liver after GvH and Dr. Huff reiterated that it is possible that her liver can make a comeback after she can eat again.
YOOO HOOO!!!
We expect the CT to confirm that the gall bladder is bad and nothing else is wrong and that Trish will be in surgery first thing tomorrow morning.
They are expecting to perform the surgery "open" the old fashioned way instead of laproscopically. The reason is that it will be safer for Trish and easier to repair anything else that might be an issue or go wrong during the procedure.
Everyone expects that the removal will put Trish back on the track to recovery from the GvH and allow her to eat again.
The only down side to the open surgery is that recovery times goes from 2-3 days to at least a week. But than we should be able to move forward to get her liver back o regeneraing and coming home.
They will pump her platlet levels up to over 100 tonight (they are currently at 59. As much as we dread surgery we all feel this is Trish's best chance to get back on track to recovering her liver after GvH and Dr. Huff reiterated that it is possible that her liver can make a comeback after she can eat again.
YOOO HOOO!!!
Tuesday morning post
Well rounds just left and here's he scoop. Dr. Huff thinks that by the end of the day we should have an answer on surgery. They are having the surgeons and the GI team come by today to review the case and bang heads at a high level to make a call. All signs point to surgery to remove the gall bladder. They may still scope her stomach out before the final decision is made. Today should be a pretty quie day with a few visits from surgeons and such, tonight we should have a more substantiative update.
The covering resident surgeon did come by last night and she was very nice and very informative. She said from the records she reviewed it was definite that Trish had colesystitis (sic, bad gall bladder). She said that sometimes they can wait up to six weeks to rest a sick gall bladder before removing it. Hopefully Trish's 1 1/2 weeks of gall bladder rest was good enough. Based on imaging it might have been.
Look for an update late today.
The covering resident surgeon did come by last night and she was very nice and very informative. She said from the records she reviewed it was definite that Trish had colesystitis (sic, bad gall bladder). She said that sometimes they can wait up to six weeks to rest a sick gall bladder before removing it. Hopefully Trish's 1 1/2 weeks of gall bladder rest was good enough. Based on imaging it might have been.
Look for an update late today.
Monday, October 15, 2007
OK so here it finally is, an update with a few teeth....
Ok, we do have an update and it has only a few teeth, but by the end of the week we should have a good plan.....
So here is the story:
Sunday we had the HIDA scan....the tech and radiologist said the liver took up the dye right away and the gall bladder remained "cold" - not visible - for the whole hour she was scanned.
They took her down for another picture this morning and never called her back for the second picture this afternoon that they told us they wanted when we spoke to them yesterday.
When Dr. Huff came in this evening to talk to us, she told us that the final report from nuclear medicine said that the scan was inconclusive.....that was kinda annoying. We related what the conversation was on Sunday and that the team Sunday thought that the scan supported an issue with either the gall bladder or the duct between the liver and the gall bladder.
Dr. Huff believes in her medical heart of hearts that Trish's issue is her gall bladder and that she can regenerate her liver if the rest of her is healthy. Her symptoms are digestive, it hurts when she eats and no more. The liver's only role in digestion is the production of bile -- which Trish has plenty of, so again it appears to be something effecting digestion, not the liver damage that is her root problem.
The nuclear med doctor was way more helpful on Sunday than today, Dr. Huff is trying to get with them again. She is also bringing in the surgeons again tomorrow morning and the GI team. By the end of the week we should have a definite plan, but it is looking likely to include removal of the gall bladder despite the image tests. They may still scope out Trish's stomach to insure there is nothing there that needs attention, but the focus is starting to form around the gall bladder (are you happy yet, Mike).
Trish had an ultra- sound right before starting ECP (about 3 weeks ago) and the tech asked her if she had eaten because her gall bladder looked like she had, but she hadn't. I think the gall bladder has likel been bad for a while -- quite possibly because of GvH. I am hopeful that this is the conclusion of the doctors. It really is a best chance out of the tunnel.
Hopefully we will have more frequent and good updates the rest of the week. Pray hard and thank you.
So here is the story:
Sunday we had the HIDA scan....the tech and radiologist said the liver took up the dye right away and the gall bladder remained "cold" - not visible - for the whole hour she was scanned.
They took her down for another picture this morning and never called her back for the second picture this afternoon that they told us they wanted when we spoke to them yesterday.
When Dr. Huff came in this evening to talk to us, she told us that the final report from nuclear medicine said that the scan was inconclusive.....that was kinda annoying. We related what the conversation was on Sunday and that the team Sunday thought that the scan supported an issue with either the gall bladder or the duct between the liver and the gall bladder.
Dr. Huff believes in her medical heart of hearts that Trish's issue is her gall bladder and that she can regenerate her liver if the rest of her is healthy. Her symptoms are digestive, it hurts when she eats and no more. The liver's only role in digestion is the production of bile -- which Trish has plenty of, so again it appears to be something effecting digestion, not the liver damage that is her root problem.
The nuclear med doctor was way more helpful on Sunday than today, Dr. Huff is trying to get with them again. She is also bringing in the surgeons again tomorrow morning and the GI team. By the end of the week we should have a definite plan, but it is looking likely to include removal of the gall bladder despite the image tests. They may still scope out Trish's stomach to insure there is nothing there that needs attention, but the focus is starting to form around the gall bladder (are you happy yet, Mike).
Trish had an ultra- sound right before starting ECP (about 3 weeks ago) and the tech asked her if she had eaten because her gall bladder looked like she had, but she hadn't. I think the gall bladder has likel been bad for a while -- quite possibly because of GvH. I am hopeful that this is the conclusion of the doctors. It really is a best chance out of the tunnel.
Hopefully we will have more frequent and good updates the rest of the week. Pray hard and thank you.
Just a quick note
My apologies to all of our friends and family who have been clicking frequently the last 24 hours looking for an update.
We have no NEWS yet. Trish did get the HIDA scan yesterday and it indicated a possible issue with the gall bladder. The wanted another scan today to confirm the situation and they took that scan early today. They thought they may need another scan tonight, but Trish said the were happy with the scan from this morning and wouldn't need another scan.
We are hoping to have some news tonight, but it may be tomorrow. Trish is feeling well and trying to progress her diet. She's hoping for a dry baked potato for dinner. Thanks to all of ou for caring and checking in and sorry to keep you worried. I'll post something tonight or tomorrow with any news we get. Keep praying.
We have no NEWS yet. Trish did get the HIDA scan yesterday and it indicated a possible issue with the gall bladder. The wanted another scan today to confirm the situation and they took that scan early today. They thought they may need another scan tonight, but Trish said the were happy with the scan from this morning and wouldn't need another scan.
We are hoping to have some news tonight, but it may be tomorrow. Trish is feeling well and trying to progress her diet. She's hoping for a dry baked potato for dinner. Thanks to all of ou for caring and checking in and sorry to keep you worried. I'll post something tonight or tomorrow with any news we get. Keep praying.
Saturday, October 13, 2007
Saturday second update
Just a quick update....Trish will get a HIDA scan tomorrow (Sunday) at about 10am....rish is also feeling a lot better tonight and has progressed her diet. She ate some jello at about 6pm and later ate some farina (cream of wheat). I am excited to report that all has stayed safely in her digestive tract. YEAH! Hopefully she will feel well after the scan tomorrow and have some more.
Saturday - No ordinary miracles today
Today was not the bright hopeful day we expected after the last two days. Trish's night was less than spectacular. She woke up tired and headachey and nauseous. They are trying a new nausea medicine today. It's supposed to work well and last several days on one dose.
Trish is feeling better now (about 6pm) and ate some jello, it appears to be staying down. There is so little in her stomach, that she says she can feel it (the jello) making its way down. We may try some farina before bed tonight. They are trying to schedule a modified HIDA scan for tomorrow (Sunday).
It was a big bummer for Trish and I to have a bad day today after a great 3 days and a nice two day visit with Joe and Cathy, but one day does not a trend make. Tomorrow could be the day to turn it all around.
Trish is feeling better now (about 6pm) and ate some jello, it appears to be staying down. There is so little in her stomach, that she says she can feel it (the jello) making its way down. We may try some farina before bed tonight. They are trying to schedule a modified HIDA scan for tomorrow (Sunday).
It was a big bummer for Trish and I to have a bad day today after a great 3 days and a nice two day visit with Joe and Cathy, but one day does not a trend make. Tomorrow could be the day to turn it all around.
Friday, October 12, 2007
Friday Night Update
Trish and I have really enjoyed our visit with Cathy & Joe these last two days. Trish looks and feels great -- that's what everybody else says when they visit her.
Today, the docs shared some results from the liver biopsy with us. The good news is that it appears the Cytoxan treatments have stopped the GvH and there appears to be no "active" GvH in Trish's liver. The not so good news is that Trish's liver was pretty "beat up" by the GvH before it was stopped.
So what does this mean? No one really knows. The liver is the only organ in the body that can regenerate itself. You only need about 15-25% of it to be good to regenerate. Regeneration can take months. People can live for months with a bad liver. Any infection or agitation can cause a setback to liver regeneration. There are optimists and pessimists on the doctor team treating Trish -- but no one really knows what will happen.
The goal is that they will stabilize her and that she will be able to eat a low fat diet to sustain her nutrition needs. Today was a jello only day and she did fine. Tomorrow we will add soft cereal. and build up through the weekend to regular low fat foods. The focus is still on getting us home by the second week of November.
We can still beat this thing, but it is pretty much anyone's guess on how things will unfold and we may not beat it despite all of our efforts.
I guess the thing we need most is a lot of prayer, love and friendship. Maybe even a little luck.
Today, the docs shared some results from the liver biopsy with us. The good news is that it appears the Cytoxan treatments have stopped the GvH and there appears to be no "active" GvH in Trish's liver. The not so good news is that Trish's liver was pretty "beat up" by the GvH before it was stopped.
So what does this mean? No one really knows. The liver is the only organ in the body that can regenerate itself. You only need about 15-25% of it to be good to regenerate. Regeneration can take months. People can live for months with a bad liver. Any infection or agitation can cause a setback to liver regeneration. There are optimists and pessimists on the doctor team treating Trish -- but no one really knows what will happen.
The goal is that they will stabilize her and that she will be able to eat a low fat diet to sustain her nutrition needs. Today was a jello only day and she did fine. Tomorrow we will add soft cereal. and build up through the weekend to regular low fat foods. The focus is still on getting us home by the second week of November.
We can still beat this thing, but it is pretty much anyone's guess on how things will unfold and we may not beat it despite all of our efforts.
I guess the thing we need most is a lot of prayer, love and friendship. Maybe even a little luck.
Cathy & Joe
Thursday, October 11, 2007
Thursday - no news is no news, right?
Sorry to those who may have been clicking away today hoping for some news. Pretty much we have no new news.
Trish remains an inpatient. She remains NPO (no food). They want to continue to rest her gall bladder and try food again soon. They are also considering TPN (IV food) for her. They are trying not to stress her liver, while starting to help the rest of her functions become normal again.
They consulted three surgeons. One wanted to take it out, one didn't want to and the other was on the fence. So no surgical procedures are scheduled.
Trish had her fourth ECP treatment today. No way to really tell if it is working or not or when it will produce a result we can be excited about. Her next appointment for ECP is Monday.
One of Trish's best friends from high school, Cathy, is visiting today and tomorrow, it was a great visit today and more of the same is expected tomorrow. Cathy filled in my role as Dr. Huff stopped by the room, she did a great job asking all the questions I would have asked, but really nothing new to report.
To top off the perfect day, Dr. Griffiths stopped by before the end of her moonlighting shift of being on call till 11pm. We had a great conversation and she said Trish looked good and that the one element that they look at to see if the liver is dying wasn't that bad at all. One of the things we really like about her is that she doesn't hide behind the numbers and she tells us straight. Good or bad.
I'm not sure when I will have something significant to report , but the thinking is to try and let Trish eat and maybe discharge by Monday.
I'll keep you posted, but you may need to have more patience. I know I am learning to have some.
Trish remains an inpatient. She remains NPO (no food). They want to continue to rest her gall bladder and try food again soon. They are also considering TPN (IV food) for her. They are trying not to stress her liver, while starting to help the rest of her functions become normal again.
They consulted three surgeons. One wanted to take it out, one didn't want to and the other was on the fence. So no surgical procedures are scheduled.
Trish had her fourth ECP treatment today. No way to really tell if it is working or not or when it will produce a result we can be excited about. Her next appointment for ECP is Monday.
One of Trish's best friends from high school, Cathy, is visiting today and tomorrow, it was a great visit today and more of the same is expected tomorrow. Cathy filled in my role as Dr. Huff stopped by the room, she did a great job asking all the questions I would have asked, but really nothing new to report.
To top off the perfect day, Dr. Griffiths stopped by before the end of her moonlighting shift of being on call till 11pm. We had a great conversation and she said Trish looked good and that the one element that they look at to see if the liver is dying wasn't that bad at all. One of the things we really like about her is that she doesn't hide behind the numbers and she tells us straight. Good or bad.
I'm not sure when I will have something significant to report , but the thinking is to try and let Trish eat and maybe discharge by Monday.
I'll keep you posted, but you may need to have more patience. I know I am learning to have some.
Wednesday, October 10, 2007
HIDA - No, LP - No, Surgery maybe
So this morning they prepped Trish for the HIDA scan (nuclear medicine view of the gall bladder), than they took her over t he scan. She did remember to mention that we had read that the billi needed to be below 20 for the test and the doctors said they wanted to try the test anyway. Apparently they didn't check with the nuclear med doctors.
Trish was wheeled in and wheeled out without having the test done. Nuclear med wouldn't do it with her billi so high.
The docs also cancelled the LP (lumbar puncture/spinal tap) they had scheduled for Noon today. They were going to use it to see if Trish had something in her spinal fluid responsible for the headaches. But the headaches are better since she hasn't been eating.
However, she just called me (I'm back at the apartment washing clothes) and told me that the surgeon just stopped by. He is on the fence whether they should drain the gall bladder or remove it. It's pretty enlarged and they may not be able to remove it laproscopically (i.e. they may have to cut her open to get it out). Their other choice, to drain it, would require it to be drained over several weeks. That would definetly postpone our return home. Regardless of what they do, it is likely to drain our insurance, patience and test us to new levels. At this point we both just want to get home.
The surgeon wasn't optimistic that the gall bladder issue is the problem with the billi being so high. He thinks that the billi is high due to GvH and that the gall bladder inflamation is due to Gvh too.
The are likely to make some sort of decision today and we'll keep you posted.
Trish was wheeled in and wheeled out without having the test done. Nuclear med wouldn't do it with her billi so high.
The docs also cancelled the LP (lumbar puncture/spinal tap) they had scheduled for Noon today. They were going to use it to see if Trish had something in her spinal fluid responsible for the headaches. But the headaches are better since she hasn't been eating.
However, she just called me (I'm back at the apartment washing clothes) and told me that the surgeon just stopped by. He is on the fence whether they should drain the gall bladder or remove it. It's pretty enlarged and they may not be able to remove it laproscopically (i.e. they may have to cut her open to get it out). Their other choice, to drain it, would require it to be drained over several weeks. That would definetly postpone our return home. Regardless of what they do, it is likely to drain our insurance, patience and test us to new levels. At this point we both just want to get home.
The surgeon wasn't optimistic that the gall bladder issue is the problem with the billi being so high. He thinks that the billi is high due to GvH and that the gall bladder inflamation is due to Gvh too.
The are likely to make some sort of decision today and we'll keep you posted.
Tuesday, October 9, 2007
Late Night Tuesday Update
Sometimes the treatment is a bigger problem than the problem. Trish had her ECP treatment today (that wasn't a problem at all). In fact, she looked a lot better curled up in the ECP chair than she did curled up in her hospital bed. I truly think she has developed a mental allergy to being "in" the hospital. An allergy that triggers nausea and vomitting.
Today she looked pretty good, though she was a bit yellow. She was hungry all day today. She had jello for lunch and than during rounds she was made NPO -- no food, no drink, nothing. Tomorrow she is scheduled for a nuclear medicine test a HIDA Scan. The HIDA is designed to look for issues in the liver and gall bladder. However, one article I read says that if he Billi is higher than 15-20 the test is inconclusive. I told Trish to ask the docs about that if they come in before I get there to take her off to the test.
Dr. Griffiths came by around 1pm to do the LP (spinal tap). we were of course at the ECP session. She says she'll be back at Noon Wednesday -- so I guess the good news is she will do it and the bad news is -- it isn't optional.
Trish is wanting to eat pretty bad tonight and there in lies the problem. She has the desire, but isn't allowed to act on the desire that we have all longed to see in her. Ugh this really stinks.
So some options of what they might find.....
Damage in the gall bladder, damage in the liver, GvHd, etc. One thing that we are pretty sure of is that they won't find obstruction of the bile ducts, as all other imaging has been negative for this. Hopefully they will be able to come up with a quick plan to solve this issue. Hopefully once they solve the issue with the gall bladder, Trish's billi will continue downward and she will be good to go.
We expect to run out of insurance very shortly now, between the ECP treatments and the current hospitalization. Hopefully billing will be quick enough as not to create another problem (loss of HIPPA protection). I emailed the Hopkins financial folks o insure this isn't an issue.
Don' expect a post on Wednesday till late in the day.
Today she looked pretty good, though she was a bit yellow. She was hungry all day today. She had jello for lunch and than during rounds she was made NPO -- no food, no drink, nothing. Tomorrow she is scheduled for a nuclear medicine test a HIDA Scan. The HIDA is designed to look for issues in the liver and gall bladder. However, one article I read says that if he Billi is higher than 15-20 the test is inconclusive. I told Trish to ask the docs about that if they come in before I get there to take her off to the test.
Dr. Griffiths came by around 1pm to do the LP (spinal tap). we were of course at the ECP session. She says she'll be back at Noon Wednesday -- so I guess the good news is she will do it and the bad news is -- it isn't optional.
Trish is wanting to eat pretty bad tonight and there in lies the problem. She has the desire, but isn't allowed to act on the desire that we have all longed to see in her. Ugh this really stinks.
So some options of what they might find.....
Damage in the gall bladder, damage in the liver, GvHd, etc. One thing that we are pretty sure of is that they won't find obstruction of the bile ducts, as all other imaging has been negative for this. Hopefully they will be able to come up with a quick plan to solve this issue. Hopefully once they solve the issue with the gall bladder, Trish's billi will continue downward and she will be good to go.
We expect to run out of insurance very shortly now, between the ECP treatments and the current hospitalization. Hopefully billing will be quick enough as not to create another problem (loss of HIPPA protection). I emailed the Hopkins financial folks o insure this isn't an issue.
Don' expect a post on Wednesday till late in the day.
Tuesday
Well the liver function numbers are mixed. Trish had a better night than the night before and she seems better this morning than yesterday. But her numbers are not significantly better and bulge in her belly is still there to some degree and the doctors are not that happy with her progress to date.
They didn't want to restrict her diet too sternly, knowing that she needs to keep her nutrition up, but today they are putting her on a "cold turkey" diet -- no not cold turkey, the meat from the bird. No food or drink, period.
They will also limit her narcotics, as this can cause the gall bladder to contract as well. If it were up to Trish, they would just rip the thing out. Bu they are being careful and cautious and trying to do the job medically and as surgery free as possible.
They have also ordered a special type of x-ray to take another look at the gall bladder and may do a spinal tap as well -- we put in our request for Dr. G to do the puncturing if it must be done.
We have ECP at 1pm and will get ready for that shortly. Trish is getting a little bummed over these latest developments - so some good cheer woudl be a good thing. Best address is the Hackerman House address and since she is more awake, I have plugged her phone back in today.
It seems everytime we take a big step forward towards the finish line, we take a giant step back. We continue to pray and be hopeful that the gelato euphoria we felt on Friday will come back our way again and linger a lot longer this time. Thanks for your continued support, prayer and friendship.
They didn't want to restrict her diet too sternly, knowing that she needs to keep her nutrition up, but today they are putting her on a "cold turkey" diet -- no not cold turkey, the meat from the bird. No food or drink, period.
They will also limit her narcotics, as this can cause the gall bladder to contract as well. If it were up to Trish, they would just rip the thing out. Bu they are being careful and cautious and trying to do the job medically and as surgery free as possible.
They have also ordered a special type of x-ray to take another look at the gall bladder and may do a spinal tap as well -- we put in our request for Dr. G to do the puncturing if it must be done.
We have ECP at 1pm and will get ready for that shortly. Trish is getting a little bummed over these latest developments - so some good cheer woudl be a good thing. Best address is the Hackerman House address and since she is more awake, I have plugged her phone back in today.
It seems everytime we take a big step forward towards the finish line, we take a giant step back. We continue to pray and be hopeful that the gelato euphoria we felt on Friday will come back our way again and linger a lot longer this time. Thanks for your continued support, prayer and friendship.
Monday, October 8, 2007
Welcome to Monday
The great eat a low fat diet experiment did not go so well. They are putting Trish back on clear liquids. It's a tough balancing act -- she needs to eat, she needs hydration -- but if they over do it, it comes with its own issues as well as rewards.
Trish had a bad night last night, vomitting and severe headaches. This is a lady that has had headaches her whole life and has a great tolerance for headache pain, but her current 8 on a scale of ten headaches are bringing her down. Heck headaches she rates at 5, are like a 20 for most people.
Some good news is that she hasn't lost any weight. Neither of us can figure this out, but we'll accept it. I made her a bowl of Farina this morning (Cream of Wheat to the non-Italians) and mixed in some dried Rasberries. She enjoyed it until the docs came in and told her she should go back to liquids.
The docs expect a 14 day regimen of the antibiotics. Hopefully they are not the cause of the pain - cause if they are it will be a long 14 days. She shouldn't have to be in the hospial that whole time. I'm hoping not, 'cause I was hoping we would be home before we ran out of insurance and it is getting closer each day.
Speaking of going home...We are still targeting the second week of November, barring any new unforseen circumstances. I posted a page with some do's and don't's for Trish's return (like get a flu shot, but not the nasal kind , still no live flowers please and more).
I have unplugged her room phone and cell phone while she is sleeping, so don't panic if you don't get an answer. Feel free to call or email me for an update.
Trish had a bad night last night, vomitting and severe headaches. This is a lady that has had headaches her whole life and has a great tolerance for headache pain, but her current 8 on a scale of ten headaches are bringing her down. Heck headaches she rates at 5, are like a 20 for most people.
Some good news is that she hasn't lost any weight. Neither of us can figure this out, but we'll accept it. I made her a bowl of Farina this morning (Cream of Wheat to the non-Italians) and mixed in some dried Rasberries. She enjoyed it until the docs came in and told her she should go back to liquids.
The docs expect a 14 day regimen of the antibiotics. Hopefully they are not the cause of the pain - cause if they are it will be a long 14 days. She shouldn't have to be in the hospial that whole time. I'm hoping not, 'cause I was hoping we would be home before we ran out of insurance and it is getting closer each day.
Speaking of going home...We are still targeting the second week of November, barring any new unforseen circumstances. I posted a page with some do's and don't's for Trish's return (like get a flu shot, but not the nasal kind , still no live flowers please and more).
I have unplugged her room phone and cell phone while she is sleeping, so don't panic if you don't get an answer. Feel free to call or email me for an update.
Sunday, October 7, 2007
Sunday update
Trish is tired today. I'd like to think she is depressed over the Gators loss at the end of a game they unexpectedly dominated, but I know that's not true.
Her potassium dropped low again last night. I knew this as soon as I walked into the room. They had an EKG machine in the corner. It was off and she was unhooked, but it was on and she was attached earlier. You see (and I had no clue until Trish got sick) potassium regulates the heart beat. Your body's potassium levels should be between 3.5 and 5.1 mEq/L. Trish's must have hit a 2.something to bring out the EKG machine.
Her billirubin is continuing a downward trend. YEAH! She will likely be in the hospital until at least Wednesday. Which means she will get her ECP treatment Tuesday as an inpatient.
She's feeling pretty weak, but hard to feel otherwise when you haven't eaten real food in a few days. The will put her back on a regular - fat free diet today.
Her hospital room number is 410-502-0322, if you want to say hi.
Her potassium dropped low again last night. I knew this as soon as I walked into the room. They had an EKG machine in the corner. It was off and she was unhooked, but it was on and she was attached earlier. You see (and I had no clue until Trish got sick) potassium regulates the heart beat. Your body's potassium levels should be between 3.5 and 5.1 mEq/L. Trish's must have hit a 2.something to bring out the EKG machine.
Her billirubin is continuing a downward trend. YEAH! She will likely be in the hospital until at least Wednesday. Which means she will get her ECP treatment Tuesday as an inpatient.
She's feeling pretty weak, but hard to feel otherwise when you haven't eaten real food in a few days. The will put her back on a regular - fat free diet today.
Her hospital room number is 410-502-0322, if you want to say hi.
Saturday, October 6, 2007
Quick Saturday Update
Have you had your gelato yet?
It is only one day after the start of antibiotics and already we have some pretty good news....Trish's billirubin dropped from 34 to 31 today.
That's the most significant one day change in her billi in a long time and it is in the right direction. Alleluia. Amen.
Trish is sleeping. The pain from her enflamed gall bladder made for a rough night last night. If you wanted to call I would suggest calling late in the day. She is sleeping off the pain meds today. This is a great sign and should keep us on target for Trish's personal goal of coming home the second week of November.
It is only one day after the start of antibiotics and already we have some pretty good news....Trish's billirubin dropped from 34 to 31 today.
That's the most significant one day change in her billi in a long time and it is in the right direction. Alleluia. Amen.
Trish is sleeping. The pain from her enflamed gall bladder made for a rough night last night. If you wanted to call I would suggest calling late in the day. She is sleeping off the pain meds today. This is a great sign and should keep us on target for Trish's personal goal of coming home the second week of November.
Friday, October 5, 2007
The Gelato that may save my wife's life
Click on the logo above to find out about the greatest little gelato shop on the face of the planet earth. Here's how they accidentally saved my wife's life.Trish had a tough time this week. She woke up every morning with headaches and nausea. Whenever she ate her stomach would hurt and she would feel full regardless of how little she would eat. No one knew what to do for her. Her biggest health problem has been her elevated billirubin -- a result of her GvHd we all thought.
Last night I was tired, but Trish had some energy and really had a craving for some gelato. Last week we went to lunch with her Uncle and Aunts and stopped by Pitango's for gelato and sorbet (in Fells Point, Balimore). Trish had their sorbet. It tasted a lot like the homemade sorbet that Trish makes when we are home. Cold, with simple fresh goodness and no crap. She said it was the first time she had relief from her chemo induced dry mouth in weeks.
Back to last night. Trish was feeling pretty good and wanted to get out. I was tired and wanted to fall asleep watching TV. This was the first time in a very long time that she wanted to do something and it was a simple request -- a cup of gelato. How could I deny her that?
I headed into the hospital to pick up the car. Waited at security to get an ID badge, pasted the five stickers I needed to the parking ticket to get our car out of the garage ($20) and made my way back to the Hackerman house to pick Trish up.
We parked at Fells Point right across from the shop and walked over. My decision was easy -- Chocolate Hazelnut. Trish couldn't decide what flavor she wanted and I think they gave her two flavors mixed and she asked them to be less than generous with the portion, because she knew she wouldn't eat it all. They even gave us a friendly discount on hers since it wasn't a full serving.
We went back to the car and ate. We than headed to Safeway to buy some groceries. In the last few weeks when Trish accompanied me shopping, she usually sits at the in-store Starbucks while I shop. This night she walked the whole store with me. She really felt good.
We headed home. All of a sudden Trish was in pain. She was doubling over and lying in a fetal position with severe stomach pain. We called into the hospital and they told us to come right over.
After getting a CT scan this morning, they concluded that Trish had an infection of the gall bladder -- no gall stones, just an infected gall bladder. They began treatment with antibiotics. If it wasn't for Trish's craving and the fat in the gelato aggravating her gall bladder this might never have been discovered until it got very badly infected.
Here's another funny thing. Last week Trish got an ulta-sound of her liver and she was told to fast after midnight the night before the ultra-sound, which she did. During the imaging session, the tech asked us again if we were sure she didn't eat, we said yep - absolutely nothing. She peaked our interest and we asked why she asked repeatedly. She explained that the gall bladder looked contracted, the way it would have looked if Trish had recently eaten. That ended the discussion and I am sure she just t hought that we had lied about fasting. So I guess we did have evidence of an issue early, it just wasn't enough to do anything about and an ultra-sound is not as conclusive as a CT scan.
So, thank God for small cravings. Thank God for the gall bladder aggravation caused by the best gelato we have ever eaten. Thank God for a tired husband, who wouldn't stand in the way of his wife's cravings. Thank God for a positive CT scan, that may have revealed another cause for an elevated billirubin level.
Say a prayer of thanks and eat some gelato today.
Happy Anniversary, but did we have to celebrate this way!?!?
>>If you haven't read the post before this one, you may want to read it first<<
I titled this post Happy Anniversary - because it is. It is the 2nd anniversary of Trish's first admission to Hopkins. Now, why she had to celebrate by getting readmitted is far beyond me.
We now know why Trish felt pretty good after IPOP yesterday and REALLY BAD after we had some gelato. She has an enflamed gall bladder. They will treat her with antibiotics today and hopefully release her sooner than later. The fat in the gelato iritated her infected gall bladder, which may also be the source of her high billirubin -- which means once the infection is taken care of her billi should get back to the business of dropping. No guarantees, but we are hopeful.
Once again though her medical care, has put her on a diet that is contradictory to her need to gain weight. She is on a clear liquid diet. Jello, broth and drinks only. Had she not been feeling better and wanted the gelato, we may have never gotten the diagnosis she needed so it is a good thing I guess.
Dr. Griffiths came by and said Trish looked great! and she does, really....One of the many things we like about Dr. G is that she doesn't hide stuff, candy coat stuff. She just tells it like it is -- simple honest truth, just the way Trish likes it -- warts and all if need be. So we knew she wasn't just trying to cheer us up. She was also very happy to know Trish had a gall bladder infection, that could be why we haven't seen the improvements we were expecting to see.
More later....
Well it was a good night.....
Trish felt pretty good this afternoon. She ate, I worked and washed clothes, she read a magazine...Later she asked me if we could go out for some gelato. We found a really good gelato store in Fells Point when we had lunch with her Aunts and Uncle. We went for gelato and than to Safeway for some groceries.
She was doing pretty good. Around 10 her stomach started to hurt real bad and she vomitted. Trish is funny she always says she feels better after throwing up and after she eats a lot -- she always says I will feel better if I throw up.
I also gave her a fetynal lollipop for the pain and called into the IPOP on-call number. The doctor thought it best we came in to get some imaging and antibiotics. Whew...
Everytime things start to get better we find the pot hole in the road.
I'll stay with her tonight until the doctors get her history, etc. Than I'll go back and try/pretend to sleep. I probably won't have anything new to post until mid to late afternoon. Hopefully this will be a 24 hours and out. Hopefully it will be treatable and not too serious.
More later....
She was doing pretty good. Around 10 her stomach started to hurt real bad and she vomitted. Trish is funny she always says she feels better after throwing up and after she eats a lot -- she always says I will feel better if I throw up.
I also gave her a fetynal lollipop for the pain and called into the IPOP on-call number. The doctor thought it best we came in to get some imaging and antibiotics. Whew...
Everytime things start to get better we find the pot hole in the road.
I'll stay with her tonight until the doctors get her history, etc. Than I'll go back and try/pretend to sleep. I probably won't have anything new to post until mid to late afternoon. Hopefully this will be a 24 hours and out. Hopefully it will be treatable and not too serious.
More later....
Thursday, October 4, 2007
So much for a day off....
Trish woke up with a headache and nausea again today. We rolled across the street to IPOP.....We're not really sure if ECP is causing the headaches, if they are just a common migraine or the result of something else. They are taking her ammonia levels today. Apparently wih a high billirubin you can have high levels of ammonia in your blood and his can cause headaches.
We did get some good news in that they have had a cancellation in the ECP world and Trish is set for two treatments next week (Tuesday and Thursday). Now we can't say it didn't work because of the one week that she only got one treatment....
More later.....
We did get some good news in that they have had a cancellation in the ECP world and Trish is set for two treatments next week (Tuesday and Thursday). Now we can't say it didn't work because of the one week that she only got one treatment....
More later.....
Wednesday, October 3, 2007
Wednesday - ECP on the march
This week has had its surprises. Trish slept well after the biopsy yesterday and she felt fairly well. This morning she is a little sore in the liver area. She woke up this morning with nausea and headaches again. So she had some ativan and fluids this morning. They also sent us for a head CT, to make sure nothing was going on up there. She sleeping now as she starts cycle 5 of her ECP treatment. Next week we could only get one ecp treatment scheduled. I wish we could get two and still hope Tom will call us with a cancellation.
Trish's billirubin was up today, but not by much. They also increased her prograff dose -- again -- 3 pills, twice a day now. Tom the ECP manager just told me he wished Trish's T-Cell bag was not so green....why?... the machine would work better if it weren't so green.....He we need the machine to help us get rid of that green....
I don't know how this all will end, all we can do is keep placing one foot in front of the other and hoping for the best. Thanks for your support.
Trish's billirubin was up today, but not by much. They also increased her prograff dose -- again -- 3 pills, twice a day now. Tom the ECP manager just told me he wished Trish's T-Cell bag was not so green....why?... the machine would work better if it weren't so green.....He we need the machine to help us get rid of that green....
I don't know how this all will end, all we can do is keep placing one foot in front of the other and hoping for the best. Thanks for your support.
Tuesday, October 2, 2007
Tuesday late afternoon post
((Read first Tuesday post first if you haven't already))
Dr. Bernstein came by and said the procedure was easy and accurate. Took about 20 minutes. Trish confirmed that she didn't feel a thing. She's very sleepy in recovery and will stay there till about 6pm. I have come back to the house to wash her sheets before she gets home.
Tomorrow is regular IPOP appt and 2nd round of ECP.
Tuesday Mid-day Update
I thought today might be easy...just a long annoying procedure for Trish and we both could sleep in till about 10am, head over for the procedure and I could work for several hours while she was prepped and had her liver biopsy. That's what I thought would be the start of our day.
Instead, Trish woke up with a headache she rated 7 on a scale of 10. She was nauseous and vomitting. We headed over to IPOP to have them check her out and clear her for the procedure. Her temp was good 36.2 cent., but she did feel warm to the touch. They told me to give her .5 of ativan and when we arrived they gave her another .5 via IV. They hydrated her and she felt better. We headed over to CVDL on Blalock 5 for the liver biopsy. Trish slept (from the ativan) through much of the consent and prep stage. They took her in just before 1pm. The doctor from CVDL we spoke to Friday night is doing the procedure. I felt good about that -- he seemed conscientious and caring.
I am waiting for her to get to recovery, when they discharge her I'll take her back to the apartment to sleep. It was anything but what we expected this morning. The nurses just feel that she was dehydrated post the pheresis treatment yesterday. While most of her liver enzymes are still trending down. Her billirubin hit an all time high today - 34. This is a bummer after a few days of small trends down. But we didn't expect a miracle after only one ECP treatment. Her next treatment is tomorrow afternoon at 1pm.
Look for a short update after she is discharged from the procedure late this afternoon.
Instead, Trish woke up with a headache she rated 7 on a scale of 10. She was nauseous and vomitting. We headed over to IPOP to have them check her out and clear her for the procedure. Her temp was good 36.2 cent., but she did feel warm to the touch. They told me to give her .5 of ativan and when we arrived they gave her another .5 via IV. They hydrated her and she felt better. We headed over to CVDL on Blalock 5 for the liver biopsy. Trish slept (from the ativan) through much of the consent and prep stage. They took her in just before 1pm. The doctor from CVDL we spoke to Friday night is doing the procedure. I felt good about that -- he seemed conscientious and caring.
I am waiting for her to get to recovery, when they discharge her I'll take her back to the apartment to sleep. It was anything but what we expected this morning. The nurses just feel that she was dehydrated post the pheresis treatment yesterday. While most of her liver enzymes are still trending down. Her billirubin hit an all time high today - 34. This is a bummer after a few days of small trends down. But we didn't expect a miracle after only one ECP treatment. Her next treatment is tomorrow afternoon at 1pm.
Look for a short update after she is discharged from the procedure late this afternoon.
Monday, October 1, 2007
Monday Update
Happy Monday... Trish didn't sleep too well last night, she must have been missing Aunt Mary's even after just one night. We woke up early and headed out to IPOP. Trish really has been eating well and the payoff came this morning when she weighed in with a two pound gain.
There was a mess up with the blood bank this morning and IPOP was only able to give Trish one of the two units of red cells that she was supposed to get this morning. They wanted her hematacrit to be at 38, because her weight was low. She is currently on collection 5 of 6 of the ECP treatment as I am writing this update and after the six collections, they will inject the photo-sensitive drug into her collected t-cells and re-infuse them.
Everyone remains hopeful that this will do the trick. Trish got a little nauseated right before we left IPOP and they gave her ativan right before we left, so Trish is sleeping through the process, mostly, between Tom (the pheresis tech) and I waking her up to check on her...
More news later...
There was a mess up with the blood bank this morning and IPOP was only able to give Trish one of the two units of red cells that she was supposed to get this morning. They wanted her hematacrit to be at 38, because her weight was low. She is currently on collection 5 of 6 of the ECP treatment as I am writing this update and after the six collections, they will inject the photo-sensitive drug into her collected t-cells and re-infuse them.
Everyone remains hopeful that this will do the trick. Trish got a little nauseated right before we left IPOP and they gave her ativan right before we left, so Trish is sleeping through the process, mostly, between Tom (the pheresis tech) and I waking her up to check on her...
More news later...
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