Three Years and About 3 Months (+1207)
It has been about 3 months since the last update. I don't do these very often because I doubt anyone reads them any more. But just in case there is someone out there still following I'll continue to update from time-to-time.
Over the past three months Jackie has continued to have a lot of ups and downs. Most of the problems have come from her GvHD. It continues to attack her skin and gut. To combat the problem she takes two-sessions-once-per-month of photopheresis at the Mayo Clinic. This seems to have helped her scleroderma symptoms with minor benefit to her GvHD skin issues. Her skin has become thinner and some of the splotchy patches have improved. It remains to be seen how long she will need to continue these treatments. She continues to have problems with small skin cancers and warts due to her weakened immune system. It seems that each month she needs some type of minor surgery to deal with these problems. It is amazing how fast something as simple as a wart will grow without a healthy immune system to keep it in check. Minor problems can become major problems in as little as one month.
Since the last update she was hospitalized for about one week due to a leakage from her stomach/gut into her bloodstream. This allowed e coli to pass into her bloodstream making her quite ill. Fortunately IV antibiotics put her on the road to recovery within about 24 hours. We were lucky we were able to get her to the doctor at the Mayo in short order. Within minutes of seeing her he diagnosed the problem and had her the antibiotics within the hour. I really think had we waited another 6-8 hours and the outcome might not have been good.
The latest hammer to drop has been a recent problem with shingles (Herpes zoster). About 6 weeks ago she was having an outbreak of GvHD. Without warning she began experiencing excruciating and debilitating pain. Of all the issues she has dealt with the shingles episode has been the most painful! The problem is slowly improving but there is still a lot of pain. It is not something to be taken lightly. The standard pain meds of Oxycontin and Oxycodone have little or no effect on the pain.
There continues to be no sign of the original disease; CLL. Her blood counts continue to be completely normal. Hopefully she will be able to decrease the steroid and anti rejection meds and still keep her GvHD under control. The big goal now is to get her on the smallest possible doses of immunosuppressive agents. The doctors say that over a period of five years GvHD usually improves naturally. At 3+ years post transplant we certainly this to be true. It continues to be a long road and a difficult journey.
Bruce and Jackie