It has been four and a half months since my transplant and while I am especially grateful to have had the transplant I am having difficulties getting used to the side effects of the medications I take daily. I am very concerned over some of the things that have happened that I have no control over. Specifically my two hospital stays that I have had since my transplant. Both have been caused by my weakened immune system. I understand why I have to take the immunosuppressant and cortico steroids that I need to take daily, but the problem is that as a result I am susceptible to all kinds of bugs and infections that, under normal circumstances, my immune system would kick out of my body. That is what happened with both my parotoid gland issue and my cold that became pneumonia and led to six days in the hospital. My main concern is that this situation is delaying and/or could prevent my returning to work. I had hoped to go back to work by the middle of August, which was extremely optimistic, but now I don’t know when/if I will ever make it back.
Yesterday (Tuesday, July 21) I stopped by the Council Office where I used to work and visited with several people I used to work. It was nice to see people and to be seen as well, but it just makes me want to return to work all the more. I talked with my Scout Executive in May and he told me that the BSA was looking at a part-time professional position. He didn’t then have any real details but we talked about how that might be good for me when I return and that we would talk more about this over the summer. I wasn’t able to talk with him for any length yesterday but plan to get back to him after I see my doctor. I may have to relocate when I eventually return to work as I can’t guarantee a job at the Council I was with prior to my disability. My council and my supervisors at the time was very understanding and with the exception of the whole ‘reasonable accommodation’ concept they treated me well, but that does not guarantee a position will be available at the time I am able to return. If I can’t get ahead of this whole immune system issue, I may not be able to go back into the field with the BSA. I am sure my Doctors won’t want me camping, visiting program events with hundreds of youth and adults and training courses at council camps are all places where all kinds of bugs/viruses fester. I may have to leave the BSA and that is very frightening – I have no idea of what else I could do and don’t know how to even look for a job anymore as I’ve been with the BSA since 1988. I am seeing my nephrologist tomorrow and plan to discuss with him my return to work, as well as my whole immune system problems and if I can get my prescriptions under control.
The summer that started with Carolyn’s return from Spain in late May, followed by Kate’s Wedding in June has only about a month left. Meg returns to work for the next school year around August 19th and Carolyn returns to Ithaca for her Junior year of College. Meg and I are hoping to get to West Virginia to see her brother and sister and discuss the sale of Meg’s mothers house. We are hoping to get a couple of days of vacation on the way and are planning a couple of stops in Virginia and at Shenandoah National Park. This trip is still tentative for me until I can get the clearance from the Transplant Center. We also are planning a weekend trip with Carolyn to visit Kate & Kenny in MA and maybe all go to Providence for a Water-Fire Night. It has been a great summer, if you discount the time I was in the Hospital and recovering from the hospital and some of the oppressive heat, and hopefully this last month will be exciting as well.