It has been a week since I have updated my journal. Day 57 on the transplant list. We had a crazy weekend up at Mosses this past weekend. I actually got to go fishing for a while!!! However, Lizzy got bit by Bucko and our fridge went out when we came back. But all is well with LIzzy and our new fridge looks great! Other updates are that Dane passed his boards and is searching high and low for a job. I found out that once I go on long term disability from my job I will not get my job back at my current employer so that is hard to deal with. I feel like I have worked so hard to get where I am with my career and to have to start over with my company is depressing.
My eye situation….I saw the eye doc last Thursday and he said he didn’t think it was MS which was good. I had hoped for a FOR SURE answer. But he told me it probably would resolve and it happens sometimes but to call if it got worse. Well the last few days it has gotten worse and I also have a constant flashing area in my eye (which makes for frequent headaches). Kind of like a strobe light. I went back to the eye doctor today and he said there was more swelling and my blood vessels were enlarged to try to deal with the swelling. He said they have leaked fluid into my eye and that is also causing some of the blindness. He thinks it is autoimmune. To which I say…..How can one person be so unlucky to have an atuoimmune disease that attackes the hair, fingernails, and eye, AND have a congenital heart problem!!!?? Seriously something is going on. The treatment for my eye is prenisone, however too big of a dose could cause me to have worsening heart failure. For now I have eye drops to help with the pressure in my eye and he prescribed the prenisone but I am going to make sure it is ok with my heart doc before I start anything. They eye doc could not guarentee that I would get my sight back but said he hoped the medication would work.
Besides all of that I have been doing fairly well on the energy and heart end. My weight is still low but I have an appetite which is good. I have been getting more involved with things like insurance calls, some shopping, and having visitors. I have started cardio rehab as well. The U of MN has not done any adult transplants still….and it seems that most of my issues (alopecia, eye, etc.) will be solved by the transplant and the meds I would have to take so I am even more impatient for the transplant. I have heard that around July 4th is a good time for transplants as there are alot of donors (I don’t know how else to say that respectfully). I can only hope that the waiting is for the perfect situation and the perfect time. I have to think that or else nothing else makes sense.
Hope all is well with everyone. Please excuse mis-spellings as I am working with one good eye.