GREAT NEWS!!! this is the latest from my friend john kark, after his stem cell transplant…
I got released from the hospital a little over a week ago and everything is going better than expected. The stem cell transplant went pretty smooth. The transplant itself probably only took about 40 minutes. The transplant team came into the room with a bag of frozen stem cells, thawed them out in warm water and transfused them into me. The process was very basic like receiving a bag of blood. They just hang it, wait and watch. An interesting side note is that everyone’s stem cells smell exactly like cream corn. I would smell it coming out of people’s rooms as I would walk the halls. I always loved cream corn but don’t know if I will ever eat it again.
The day of the transplant is called day zero. From day zero they want the blood counts to continue downward which eliminates the current immune system. As those counts proceed down towards zero, the new stem cells start replacing what is no longer there. The counts rise and when they reach fairly safe levels then the doctors are willing to discharge the patient.
I told my doctors that I would be discharged on Day 15 and they laughed at me and told me not to get my hopes up because I could be in there a lot longer. Only one person has ever been discharged on Day 15 and he was his own donor which presents much fewer complications than my transplant.
I had good and bad days after the transplant. When my counts dropped I contracted mucositis in my throat which is an extreme inflation that makes it impossible to eat and difficult to even drink water or talk. They had to switch all of my medications from pill form to IV or liquid. I had a suction tube attached to my bed for when I would wake up in the night because it was hard to breathe, I would stick the tube down my throat to clear the passage. As bad as that sucked, no pun intended, I would always remember the smell of cream corn coming out of the other rooms and know how rough some of those people had it. Someone always has it worse than you.
I was lucky because I was younger and went into the hospital strong and in good shape except for the whole Leukemia thing. The extra weight that I put on right before going in for the transplant helped too. I was committed to staying active on a daily basis walking a mile around the chemo ward every morning and hitting the bike sometimes at night. I tied power bands to a body crain that hung above the bed and created a makeshift home gym to do a full body workout and preserve what little muscle mass I had left. I am a firm believer that when you feel bad the best thing that you can do is change your physiology by getting active. It works. I did not get released on Day 15 but did get my walking papers on Day 19 which was more than acceptable.
So now I have just been taking a lot of meds, eating, sleeping and hiking with my dog. I take a pile of pills everyday to primarily prevent graft vs. host disease. I go to the hospital once a week for tests and have a home nurse that comes and takes blood during the week. I just had my pic line removed from my arm on Tuesday. Now I can lift real weights and start hitting the bags to rebuild what I lost. They said the next 100 days are the “critical days” that will show whether the transplant is a success. I expect it to be. Time for the comeback.
I want to thank everyone for your positive thoughts. They are obviously working.