The best news I received on the 19th of February was that my insurance company approved the use of Bortezomb! I am SO blessed...most companies would just say "that's experimental for lung transplants so no coverage" Not my insurance -- they just asked for letters & info as to why Duke wanted to give this stuff to me. Then they said yes!
I started the first of four doses of Bortezomib on the 22nd of February. It was very fast and I was done with the first treatment in no time. Side effects were hard to figure out...it took me two doses before I realized that it makes me really tired and dizzy and feeling sort of sick to my stomach. The good thing is that the tiredness lets up a bit and so does the dizziness. The stomach stuff is just a little wierd.
I've been having weekly blood tests to look at my platelet count. I had one yesterday and don't have the results back but I'm sure it's just fine. The test last week showed the platelets in the normal range.
I have one more treatment - next Monday - and then I don't know what will happen next. I'm not even sure the docs know what will happen next since they don't have any history to follow protocol. I guess we are making up the protocal as we go along ;-)
I've asked several times how long it will take before we see any results (reduced antibodies) but no one has given me an answer. I don't know that the team knows! I hope they get some results soon because between the IV treatments and the blood tests my arms are a roadmap of bruises. It's not a really good look - especially because they've started poking my hands now. That doesn't feel good and it too bruises.
I'll let you all know when they find some results.
Now on to other news...
- my friend Susan (transplanted in early Jan) was released to go home. She lives in North Carolina (about 3 1/2 hours from Duke). Susan is doing super! I miss visiting with her - and her husband Don - but once transplanted Lee and I can go visit them! They'll have dinner with us when they need to come back for checks at clinic. Susan had high antibodies too. Her's were around 70 and they found a perfect match for her! There is hope!!!
- my friend Karen was just called for her transplant on Tuesday. She too had antibodies and they also found a match for her! Karen is still in the hospital but she was up and walking on the day after surgery!
- I'm starting to feel a little down because everyone is being transplanted but me. Duke has transplanted over 50 people since Lee and I got here in late September. I just want to be next!!! Okay, I know that sounds really selfish - and it is - I'll suck it up and get over this feeling. In reality, Lee and I are grateful to be at Duke because the CA hospitals would have likely have given up after rituximab didn't work, if not sooner. I would have been sent home to die ;-( I know that doesn't sound nice but it is reality! Given that scenario...I'm so glad Duke is still trying and I know for a fact that they are as anxious as we are to get me transplanted!!!
- Sheila (rehab - transplant liason) told me about one patient that had higher antibody numbers than me. This was before the days of rituximab. The patient lived in South Carolina and after four months the team felt bad that she was having to spend all the out of pocket costs to wait for a transplant that might never happen. Her husband had needed to go back to SC for work and it was just she and her daughter at Duke. The team told her that she might not live long enough to get a "perfect match" so if she wanted to just go on home they would respect that. The patient said she would stay at Duke. It took quite a while but she did get her match and is still doing fine! THERE IS HOPE!!!!
- It snowed again this week - Ugh! I wonder when Spring will hit here. I think we've had more snow than rain...that's weird.
- I've been embroidering some orders - b-ball caps and burp cloths. That's always fun!
- Did I already tell you guys that we found a new church to attend? It's really nice and - very important - the people are really nice!
- Lee and I miss our friends and family in CA and wish they could all come out to visit! We have a queen sized air mattress and a couch for sleeping! We'd love to see our CO family out here too!
- I'm heading to a weekend scrapbook crop with Amy. For the last two years I've been flying out to go to it so this will save some money. It's really fun and I'd love for Vanessa and Sue - and any other scrapbookers - to come next year! We could have our own table! I have more pics but I'll show them in another post.
Love you guys,
Lee, Wendy and Missy