Trials and tribulations of a patient in search of a bone marrow transplant

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Sunday, May 25, 2008

ICU Update

Steve was better last night. Tremors and wild jerking almost gone and he slept deeply, if briefly. He hasn't really slept for over a week. Still some confusion, but could carry on a pretty logical conversation, if you could understand him because of the mouth sores. He is trying to eat very small amounts, but that mouth is painful.

BUN is at 70, down from 96 but of course should be between 7-18. The Prograf level had fallen to 14. They will give him lower doses of the Prograf, trying to keep it around 10 and monitor carefully now that they know he is so sensitive to it. Liver and sugar numbers still high. Still very swollen feet and legs, bruised all over.

They have sitters with him 24 hours a day. Interestingly, the sitters all told us that it had been more than two years since they were called over to the bone marrow transplant hospital. Steve must have been extra wild with his "chemo brain".

And his blood counts have started coming up. Which should help heal his mouth and intestines Hopefully it's his donor's cells. We will know that in about 10 days.

Phone calls would still be difficult as Steve is almost impossible to understand right now. That should improve in a couple of days with the white cells.

I've got to say, this guy has real guts. And courage. He is taking all this misery without a complaint. He can still laugh. He talks about getting back to work. He actively joined a conversation I had with a sitter about car insurance. He expressed interest and questioned me thoroughly about our aunt who is sick. And the sitters say he keeps making order in his room. The room is miniscule and he doesn't have much in it, but he wants it just so. Seems to give him a sense of controlling something.

Friday, May 23, 2008

End of Week Two

Steven was taken to the ICU yesterday. His kidneys and liver are not functioning properly which results in a build-up of the medications they are giving him, mainly Prograf (Tacrolimus), an anti-rejection transplant med. This has caused massive confusion and constant twitching/jerking added to sleeplessness, a condition charmingly called "chemo-brain". In the ICU, they can watch him more closely since he is pulling at his lines and readjusting the controls on his pumps (freaks out the nurses) to make them stop beeping, stepping on his lines when he gets up, etc.

This reaction is not totally unexpected, although Steven seems to have it very badly. They don't see many patients who have had to undergo the number of chemos Steven has which probably has made him more susceptible. The doctors think they can reverse the situation and will do dialysis if necessary.

The move from one room to the other was upsetting to Steve. He didn't like other people touching his things and making disorder. Once I arrived, as quickly as possible, we went through every single thing and made order, with me going back to the old room to recuperate phone and computer cords and Steve's television remote and such. Again, he is hanging on to his sanity by making order and he remembered every single thing.

Steve's blood counts should start coming any day now. That would start the healing of the mouth, throat, stomach and intestinal problems.

For the moment, visits would not be a good idea, nor even phone calls. Steve has trouble reaching the phone and is strictly not allowed out of the bed, which has an alarm on it. We will let you know when this phase has passed.

Sunday, May 18, 2008

One week out from Transplant

Steve is having a pretty rough time of it at the moment. Not totally unexpected, but hard to watch. They have him on oxygen and feeding tubes and a huge tower with numerous pumps. He is very confused. His neck and face are swollen because of the steroids. He can't swallow because his whole GI tract has been ravaged and his throat and mouth and tongue are solid blisters. It is hard to understand him as he can't speak clearly. He is shaking like a leaf all the time, drops everything he tries to pick up. Every few minutes his whole body does an involuntary spasm. I can only say we hope this phase passes quickly.

Here is a photo of Steve taken last Sunday, two days post transplant. All things being relative, he was doing well at the time. He is quite bald, and remember the swelling of face and neck comes from the steroids, but you can see he still has a good attitude. We all marvel at Steven's strength, both physical and mental. I cannot imagine surviving even a tenth of the indignities his body has suffered.
My brother and I went to the hospital on Saturday for a five hour series of classes addressing many of the post transplant concerns in depth, taught by Dr. Berryman (who was at med school with Steve's brother) and other key members of the transplant team. It was well done, with a lot of specific information which may help down the road. There were many transplant survivors attending, at varying stages post transplant. It was interesting to hear their take on the journey and to see how very differently each one of them has progressed. They stressed that each patient will find their "new normal".

One of Steve's colleagues from Fidelity visited the other day bringing a set of poster boards done by people at work with their photos and little notes from each person. Very cheerful and sweet. We taped them up all around Steve's little room. His Saturday nurse, who had Steve for the first time, saw the posters and asked if Steve worked at Fidelity. Then she asked if he knew several different people, all of whom he did. Then she said that one of them was her fiancé. How small is this world?

Friday, May 9, 2008

Transplant Day Report

Well, it's done! The transplant itself was indeed uneventful but emotions ran high. It is bizarre that such a huge event could be so banal. Lisa, my brother Dick and his wife Susana and I were all in the small room with Steve at 3:30PM when the nurse arrived with a tiny little bag of red fluids and began to hook it up. First the nurse gave Steve Benadryl and Cortisone to offset any immediate allergic reactions (he had already started anti-rejection drugs yesterday). Then we watched as the lifegiving stem cells began their journey down the tubing and into Steve's arm. He kept having to run to the bathroom thanks to all the recent chemos. The nurse finally knocked on the bathroom door and admonished him to lie flat as much as possible so that the transfusion would go smoothly and she could keep checking his vitals. Halfway through, he began some serious yawning!

As for technical information, the nurse wouldn't tell us much. She obfuscated and gave incorrect information when questioned about details of the donor's draw. When she left the room, I checked the bag and all the information we had asked about was there. The draw was completed by 12:50PM on May 8. Which means they were able to complete the draw in one session (I am happy for the wonderful donor on that). Additionally, I found out that Steve's donor lives in Central Time Zone, which we were not supposed to learn. But hey, if you leave the bag right there in the room, inquiring minds want to know. Steve's new blood type will change to A Positive from his old B Negative. Because of the mismatches in the donor antigens, the stem cell donation was processed to remove as many red blood cells as possible to minimize any immediate reaction. They assured us that tiny bag was packed with millions of stem cells.

So now the serious business of getting well begins for Steve. Up until now, the goal has been to keep him alive until a donor could be found and he could receive the transplant. We all feel that we have turned a corner and our new goal is to manage the inherent dangers of the transplant and build Steve back up to return to real life. I can only imagine how surreal this all seems to Steve, who with the exception of a couple of weeks of limited liberty, has been in isolation in a hospital room since last November.

During today's process, Steve was surrounded with love and all the healing energy we could give him. All of our cell phones were ringing at the same time and constantly with friends and family checking in. I returned home to find at least a hundred e-mails from all over the world from friends wishing Steve all the best. E-mails from Hong Kong, Korea, India, Ireland, Djibouti, France, Italy, Germany, Canada, Argentina and every corner of the US. It is amazing how many of you, friends, family and co-workers, are supporting Steve and his family. We are all so appreciative, even if we haven't had time to answer each and every one. Please know how important you are to us and to Steve.

With great pleasure, I saw Steve's fellow transplant patient L today and gave her a huge hug. Her case parallels his closely. She managed to leave the hospital the other day only two and a half weeks after her transplant, probably a record. She was back for a check-up, full of good spirits and energy.

Again, may I express our deep gratitude to Steve's donor. One day, I hope you will be able to read this blog and know how much we thought of you these last weeks. You will literally become a part of Steve and we will think of and bless you every day for the rest of our lives.

The transplant took less than two hours, at the end of which a very sleepy Steve indicated he would be pretty happy if we would all just go home and leave him in peace. May the healing begin!

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Transplant Day!!!!!!!

It's here! Transplant Day! It's exciting and scary and holds so much promise. I spent yesterday sending blessings to his donor, the hero who is giving Steve a shot at getting his life back. Everyone who loves Steve thanks this "for now" anonymous man for his generosity and dedication to help a total stranger. I hope the week of growth hormone shots was not too hard for him and that the stem cell draw went seamlessly. There are no words profound enough to express the depth of my gratitude. We appreciate this man from the bottom of our hearts and hope to have the privilege of meeting him one day. That is not allowed by the NMDB for at least a year.

Steve made it through these last three chemotherapies better than anyone expected. The last one is called "Rabbit" and is really nasty for most patients. Many, indeed every single one I spoke with, end up in the ICU from it's effects. The test dose three days ago caused fevers and a very elevated heart rate, causing concern to Steve's nurses. But he soldiered through and is in pretty good spirits, if quite swollen. Today they started him on anti-rejection drugs. If you read the papers the doctor gives him on all of these drugs and their possible side effects, you really wonder how anyone survives them. I credit some of Steve's success this time to dark chocolate therapy! His stepfather and stepmother in New Orleans sent him a tower of chocolate boxes which he took with him back to the hospital and has devoured. Must mention that to his doctor.

One of the activities I have done with Steve these last few months is to stop at Blockbusters and choose a movie in a phone consultation with him, then take it to the hospital and watch it together. There were several we watched of which he has no memory. Last night's choice was The Golden Compass, a beautiful little film about courage and bravery and loyalty. It was a good choice and Steve was able to enjoy it. Since he read a book a day last week, I also took him a new science fiction anthology. He is all in all very calm and positive.

We haven't yet heard what time they will do the transplant. It all depends on whether they needed the extra day to do a second draw on the donor or not. The nurses said it would be 2PM or later as the lab has to process the cells when they arrive by courrier. It is a non-event in that it will be given as a transfusion and nothing will happen for quite a while. Lisa will go early and spend the day with Steve. She asked someone from her church to come and bless the transplant. Several family members will go, as well as some of his friends. Since they will give him Benadryl and such with the transfusion, the nurses said he might sleep through the whole thing.

One day soon it will be Steve posting here. As we all know him so well, it is almost impossible to imagine that he has not so much as taken his computer out of the drawer in about 6 weeks.We do tell him about your e-mails and they mean a lot to him. Please send out all your most positive thoughts in Steve's direction today.

Saturday, May 3, 2008

Back to the hospital, again, Day -6

Steve had a week of freedom. He worked hard at walking and trying to put a few pounds back on. He saw some progress by the end of the week. Steadier on his feet. He went three days without throwing up, although still having a problem with nausea. A blood transfusion on Wednesday did perk him up a bit, helped with the dizziness. Thursday and Friday were relatively good days for Steve.

Friday, he checked back into the hospital, again 4th floor Collins. They started the transplant countdown yesterday morning, so this is day -6. After a dose of the first chemo in this series, they gave Steve two units of blood and a unit of platelets.

His cousin Jim from Galveston, born the same night Steve was, came for a quick visit. It was good to see them and hear them talk about their college days. A bit of normalcy.

Steve can have visitors, as long as they are not sick and wash hands carefully before entering the room. It would be good for him. We don't know how thess chemos will affect him, but for now he's OK for company.

We have become friendly with several transplant patients there. L, who has the same diagnosis and was diagnosed at the same time, is two weeks out from transplant and was looking much better yesterday than last week. M, who had a cord blood transplant less than two months ago when they couldn't find a matched donor, had a failure of the new system to take hold, so is scheduled for another transplant early June. By huge luck, a donor showed up on the lists in the meantime. We are rooting for both of them.