Hi friends, just waking up from a great sleep, the nights are getting longer for me as I scale back the Prednisone, which is welcomed and needed. That said my big week has taken its toll a little, so I have very little planned for today. As you know I had a great clinic visit yesterday, for many reasons actually, all of which I will highlight now.
Throughout the past several weeks my brain has been gearing up to return home, perhaps more accurately I have been thinking about my return and my next several months, with regards to personal expectations and lifestyle. Thus upon entering clinic yesterday I had a ton of questions for my Doc covering everything from my bone marrow test to lifestyle ‘rules and regulations’.
As you know I did have my final bone marrow test yesterday, and ideally I won’t hear a thing until next clinic visit, as they will only call if there are problems. All things from my blood work look positive which is a good indicator that all things with my marrow will be positive as well. Assuming things go well, which they will, next clinic visit will provide a fairly clear picture as to when I can return home. Doctor K. is very hesitant to place any dates on the table, which I am completely comfortable with, but ideally after clinic I will have a rough idea of how my progress home will flow. I use the term “cautious optimism” to describe the situation, I do so because the risk curve for my Graft Versus Host Disease(GVHD) ‘involvement is skewed to the right, i.e. I am at greater risk now then I was immediately after leaving hospital as I didn’t have GVHD upon leaving the hospital, it flared in the following weeks. This is the 3 month period that I have referred to so often, and in actual fact 3 months is only a ballpark, but realistic none the less. So while we don’t expect any complications, such as a flare in my rash or a drop in my liver functions, they are distinct possibilities. What does that mean? I need to use my head, that’s all, and as I have said my drugs are being scaled back thus everyday I have without further ‘involvement’ is a big step towards home.
Rules and Regulations: A quick picture of my next several months. While my Prednisone is being scaled back I will probably be taking it for the next couple of months, which is going to be interesting as my little belly is not so little anymore. In addition my Cyclosporin will be on my list for the next several months as well, which is something I was aware of, although the way Doctor K. was talking yesterday I may not be on it as long as I originally thought, maybe discontinued within the first 6 months. Much preferred! I am expected back at PMH at the 6 and 12 month marks for check-ups to ensure things are going well, and I believe after that it will be annual for a few years. During the next 6 months my lifestyle will have some quirky twists as a result of the transplant, no exposure to new pets, no pets are best but new ones are especially dangerous, as are babies! I will be allowed in their presence for brief periods but absolutely no touching and holding, they are cute but also full of germs. No Sun for a year. I am under strict instructions to stay out of the sun, and to cover up at all times as the sun can cause GVHD flares, especially in my case as I had the most severe GVHD in my skin. My energy expectation is an individual thing, I will have good days and bad days, my mental and physical energy will fluctuate with no real relation to anything as far as I can tell. Standard issue is not to work for a minimum of 6 months post-Transplant but I am in a little different situation as I can work my own hours. This is a wait and see situation, however Doctor K. did mention that my concentration and focus will be a challenge over the next 6 months. I am to avoid big crowds in the hundreds/thousands and basically use my head always, which really hasn’t been that hard so far. I can be around lots of people, but anyone who is sick or has a virus, such as chicken pox, cold sores, etc. is a danger.
There are a few rules in there, but nothing too limiting basically just common sense when you consider what I have been through. But in talking with my Nurses prior to leaving hospital a surprising number of patients have trouble living by those rules and they pay for it as any kind of serious infection can really set back your progress. As you all know I’m focused and not about to take any unnecessary risks as we have the lead and I like it that way.
Have a great day and you’ll hear from me sometime throughout the week. Those who asked questions they have been good ones, those who haven’t feel free as I have certainly been in a writing and reading frame of mind lately.
Take care,
Geoff
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