Discharged! (Part 2)

Posted: September 29, 2017 in The Battle Against MDS

On Day +17 the doctor lifted isolation. Of course, on Day +15 my wife was sick and we couldn’t risk her bringing the kids to the hospital to see me (outside of my wing, of course, since the kids aren’t allowed in that wing of the hospital). But she was better the next day, and we gave it another day to be sure it was completely gone and not contagious, she brought the kids to the hospital on Day +18, a Sunday. We had a great reunion! Amazing hugs. And a really fun time in the 14th floor lounge that we pretty much had to ourselves.

On Day +19 I was discharged from the hospital. It had to be some sort of record because I was informed by the 15th floor doctor that I could be in there for six weeks. And even when I checked in I was told 26-40 days. In all it was 24 days.

I was lucky (knock on wood). So far (knock on wood) I have been at the happy end of every window they gave me. I had an 80% chance of a fever a couple of days after the transplant (didn’t happen). The blood counts would start to rise between Day +14 and Day +21 (it was Day +14). I would get mouth sores (oral mucositis) between Day +7 and Day +10 and it would last until the counts started going up (I got it Day +10 thanks to frequent frequent mouth rinsing). Only once out of about 100 temperature measures did I reach the 37 degree mark, peaking briefly at 37.5. Otherwise it was always 36.xx degrees even to this day. I never lost my appetite (though with the mucositis I was unable to eat – I still wanted to). I never vomited. I was told I would lose my hair between Day +11 and Day +18. It started Day +18 and I never did lose my eyebrows.

 

So what’s ahead?

Right now I’m going to the hospital twice per week for blood checks. So far so good. They even reduced my magnesium to three pills per day and the cyclosporine to four per day. I asked again about my three-year survival rate, but an updated one based on my current date. Doc just said to take it milestone by milestone. Milestones are: Day +30, Day +60, Day +100, Day +180 and 1-year.

My three biggest risks, as I see it, are (in order):

  1. Infection. I was told about a guy last year who was fine until the six-month mark, then he caught an infection and was dead in a couple of weeks. I can fight most infections (more, as time goes by) with the help of the hospital. But not all of them. Right now my immunity is strong for bacteria, but still very week for viruses and fungi. My immunity is like an infant. So I need all my shots again (gradually). After a year, I’ll be mostly out of the woods for this risk. Though anything can happen.
  2. Cancer, the return. This one, if it happens, mostly likely happens 4-6 months after the transplant but is a risk all the way up three years and beyond. Though the longer it goes, the better the odds that it won’t return. Fighting it again – I could go through the same process, or I could do clinical trials. Depends on when it returns. The longer it takes to return, the more likely I would just do the same process (hey, if it bought me five years…then doing it again to buy me another five sounds good).
  3. Graft vs. Host disease. I need this, to some extent. I need some minor battle between my cells and my donor’s. But it can’t be too much. Too much would lead to side effects ranging from rashes to serious infection. Too little could lead to the cancer coming back. So I guess this kind of relates to 1 and 2 above.

I also have some rules that I need to follow/things that I must give up for now:

  1. Driving. Just until I’m done with the cyclosporine (about two months).
  2. Drinking. After I’m done going to the hospital twice per week and I’m down to once per week, I will allow myself a beer or two on a Saturday night. But for now I can’t mess with the blood counts (specifically liver).
  3. Raw food. Again, just for a couple of months. No dipping eggs. No medium-rare steak. Those are the two things I miss the most.

Well, that’s my update. It’s great to be home and see the kids and hang with the wife. It’s great to be back at work, too.

 

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