My sister was in from San Diego for last week's holiday weekend and to help celebrate my 100+ days since transplant. She informed me that I have not been “ending my blogs.” I have been telling you all about my trials and tribulations but have not been following up on the status of some of the issues. I just move on to the next issue. So today I will try to do a bit of back tracking to let you know the status of some of the past issues. There is a lot to add and read so take your time and please let me know if you have questions. I will not cover all the issues, just some of the bigger and on-going issues.
- Hands – These guys have been an on-going issue for some time. They are by far the most annoying issue for me. I have been dealing with the loss of my finger nails and continued nerve ending pain. Most of the pain is in my finger tips which, as you can imagine, makes daily activities difficult. I have started a new medication, Neurontin, that is supposed to help with my nerve endings. This med has some strong side effects and takes about a week at full dosage to even see if it will work. For now, I am slowly building up to the 900mg dosage, it will still be a fun week before I get to that amount and then we can see how much it will help. Anyway, as far as hands go they are still a major issue.
- Feet – This is the next major issue. I have a great deal of continuous pain coming from my feet; especially from my heals. This part of my feet had a particularly bad episode of GVHD awhile back and it has never really come back to even close to normal. I do what I can to make the pain less, keeping my feet elevated helps as part of the issue is increased swelling in my feet and legs. At times, I have to wear special socks to help keep the swelling at bay, I always have shoes (with extra-cushy inserts) or slippers on to try and help . This foot issue creates problems of its own, like walking... which makes any real exercise difficult. The best I have been able to do is a few ½ mile walks and then they require help from additional pain meds. I tend to pay a bit for these walks, but I feel they are necessary. As many of you know, an important part of my life is hiking and I need to know that I can return to this activity ASAP.
- BK Virus (peeing issues) – This one has been under control for a few weeks now, but has just recently come back in the last few days. We are not really sure why (as usual) but things in general have had a turn for the worse in the last 2 weeks or so. Most of the old GVHD locations have been the hardest hit. The doc's are not very concerned at this point, they have seen this in the past with other patients and feel these reoccurring issues can still be affects from the chemo and meds I received in preparation for the transplant. The reason this is now coming about is likely due to the steady but slow reduction in steroid medication. You see, I am in a catch 22 again, the more we reduce my steroids, the more I become susceptible to any virus and germ issues. Yet I need to get off the steroids to enable my new immune system to begin to try and take over. While I am on these steroids, my body (and mind) do not feel they need to create and work on my own immune system. So we are working a strange balancing act to try and get my immune system to starting “working” and keep me from being debilitated from this BK Virus.
- Lungs – I have not talked about this in the past but I have needed to wear a mask any time I stepped outside. This restriction has been lightened in the past few weeks, but I still feel the need to have one on or close by. I am just so susceptible to everything, construction dust with just a bit of mold in it or an unexpected sneeze from someone passing by could pass some simple bacteria that would not effect a normal person but could put me back in the hospital.
- Food (eating restrictions) – This one has been a bit of a success. At this point, I am able to eat just about anything - fruits or vegetables must be cooked but everything else is OK to eat. Not as far as taste; I am still experiencing an extreme saltiness to everything. We do what we can to reduce salt in everything I eat but I just can't get the taste out of foods. The doctors say this to shall pass but they do know when.
Alright that is enough for now. I hope this helps you all understand how things are progressing. I know it all sounds a bit negative but from what I am told this is what we can expect. The doctors have admitted that I did/do have a bit of an extreme case of GVHD and other side effects but not something that we can't work through. So that is what we are doing, “working through” this...
Tony
