Thursday, June 4, 2009

Being pissy

I was in a pissy mood last time I wrote. Once in a while I do get pissy, but usually I don’t share it with everybody. I had been to an eye specialist and found out I have to have eye surgery. Scleroderma has given me glaucoma because my veins are too small to relieve the pressure in my eyes. I have lost 95% of the vision in my right eye and a little in my left eye. The first surgery is to cut a window in my right eye and punch a hole in it. Then sutures put the window back and fluid can go out the punched hole. The doctor has to remove the sutures in such a way as to control the fluid so that my eye doesn’t deflate or whatever it would do. The surgery is July 13th and I have about 11 appointments over the next few weeks after the surgery. My doctor wants to do laser surgery on my left eye to reduce the pressure in it. This is not laser surgery to correct vision though. He will only do a partial laser correction of the pressure since there is no protocol for scleroderma and laser surgery. We are flying blind here, pardon the pun. I currently take two types of eye drops to help relieve the pressure in my eyes, but apparently, they aren’t enough. That’s why I was pissy that day...
I should have been pissy yesterday, but I was more resigned. I have congestive heart failure, which is why I take prednisone and letaris. One is to help the lung fibrosis and the other to help the pulmonary hypertension, high pressure in my heart. I am also on oxygen. I saw my heart doctor yesterday and the letaris isn’t helping my heart so I am going on viagra (aka revatio) also. Viagra relieves pulmonary hypertension related to pulmonary fibrosis. It does this by relaxing damaged blood vessels allowing them to widen. This makes it easier for the blood to be pumped through the heart and for the lungs to receive oxygen. My blood ox was in the low 70’s and I now have to be on oxygen all of the time. My heart doctor is not too confident that viagra, along with letaris will help me. I see him again in six weeks and then we will decide if I should go on IV therapy with either Flolan or Remodulin. It is not something I want to do since there are a lot of complications with this type of therapy. I told him that and he told me this was my last option. I cannot have a transplant because I have so many problems that would affect a transplant. Pulmonary hypertension prevents me from having a stem cell transplant. My doctor admitted that if IV therapy worked, it would only buy me some time. It is a tough decision and I have a lot of thinking to do. Quality of life is important to me and if I am miserable, why extend the misery? I also worry about Brian. He would be devastated if I died because of his love for me as his wife. He also depends completely on me for his care and doesn’t like me out of his sight at all. I have to face the reality that I am dying from congestive heart failure brought on by scleroderma. I try to make light of the situation when I talk to him about it because it upsets him. I honestly don’t know what will happen to him or how he will handle it.

1 comment:

Brian said...

Wow Dee Dee, so much is going on here. I can't even wrap my head around all of the medications you are taking or have to consider. Viagra, wow! What an odd choice, but I guess it makes sense, seeing as it just makes blood flow better, as a far as I understand.

You are right about quality of life though. I think that's got to be the most important thing. What's probably important for you is how you are living, and also how much you can still be there for Brian. I guess we all have to face the fact that we will die someday, somehow. It's not a pleasant thought, for sure. But I think you have the right perspective on what's important right now. What else do we have but the people we love and that love us?

Speaking of that, it was so good to see you this past weekend! Glad you managed to stay on all four wheels at the wedding, despite Kevin's wheelies. Good to see you writing a lot again on here too! :)