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Day 50 – Encouragement for Everyone

First off I would like to express a note of encouragement to everyone to keep or establish communication from your side as I have not heard from many of you for quite a while and am wondering how things are going on your end. Remember this isn’t just a one-way flow of info, unless that is how you are most comfortable. No pressure to write, but please do if you feel the need or desire.

Now for the encouragement for me. Yesterday I received lots of it as I had my best clinic visit yet!! It was the one that snuck away from me last week. My liver function tests have come back to “normal”, or within acceptable ranges, so my Prednisone has been scaled back. As of yesterday I was taking 110mg X 2/day, morning and evening, but starting last night I have begun to scale back the evening dose by 10mg/day, which is a nice positive. Especially since the major side affects of Prednisone – increased appetite, and trouble sleeping – have started to take their toll on me. Good news. In addition to that I have been dropped down to a “once a weeker”, as in I don’t have to make a trip to the hospital until this time next week. While still under strict instructions of when to report back, at the first sign of headaches, stomach pain and a couple of other things, the next week has the potential to be my longest time away from hospital since XMAS, maybe even since I have been diagnosed. (I haven’t done the math) Remaining very cautiously optimistic, as I prefer to do, I am still taking everything one day at a time as we are still in a high “unknown” time frame. My doctor couldn’t stress enough the importance of this time, but more importantly what I take from that is each day I finish fever and infection free is a MAJOR step towards the ultimate goal.

Speaking of the ultimate goal I haven’t been able to help but think of attaining it, more than usual lately. So you know, this little Newfoundland boy has never spent this much time, consecutively, away from his beloved Rock before in his life. And while I can honestly say that it isn’t as hard as I thought, I am really looking forward to many of the regular things that we all take for granted so often. Now that I say that I will also admit that many of the things I can’t wait to do are not so much related to Newfoundland but more so to my lifestyle, which as you can imagine, and know for that matter, has been dramatically altered over the past 7 months.

Feeling and Procedure Update: The old head is still pretty fuzzy but it is something that I am getting accustomed to, almost like learning to balance yourself all over again. The Dilantin, which is the cause of my fuzzies, is measured in my system as a level and controlled according to readings in my blood as is my Cyclosporin (immuno-suppressant). Not as a regular “dose” of medication like the rest of my drugs. Which means my current level of Dilantin is appropriate and will hopefully serve it’s purpose without further complications. No talk of when I’ll be taken off the drug but if yesterday was any indication, with the Prednisone being dropped down, it will hopefully be in the next week or two as the primary purpose for me to take Dilantin is to prevent potential seizures from high, long doses of Prednisone. Ironic that it is a drug designed to prevent the side affects of a ‘required’ drug that is giving me the physical side affects, not a drug that I ‘need’ per se. The other big news to pass along is that my Doc, Dr. Kawashima and I discussed me having my “Day 60″ bone marrow test in a week, which would be Day 59 post-Transplant. This is a standard procedure, which I have had done several times and to my knowledge is performed to confirm that my marrow is in fact “clean” and all things look well. No solid appointment has been scheduled but I am hoping things continue in their present direction and that I can get that next big step out of the way next week. Again, a cautiously optimistic view has been adopted and we shall progress a day at a time and look forward to my next clinic visit.

I think that is everything from here. Know that my spirits are at an all time high as yesterday marked the next big step since being removed from isolation and discharged from hospital. I feel well and have been increasing activity fairly consistently although with the new appetite you’d never know it, ha ha! I am weighing in at 89 kg, which is as heavy as I’ve been for quite a while and my physical condition is by far the worst it has been since November. You would be amazed what a difference it makes for me living in a building as opposed to a house. The little things like tackling the stairs and walking around the house really make a difference. Quirky fact: I have only walked a flight of stairs 4 times in the last 2 months, which I make sure to do each time I visit clinic. Stairs, who would have thought you would miss the stairs?
What a learning experience.

Stay in touch you guys, write if you wish and have a great day.
Geoff
#4

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