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alb123 
5:42pm, April 24, 2009
Well, I've received word that my insurance will no longer be covering my Cellcept - an important immunosuppresant that I've been taking since my transplant. Apparently, the patent expired in May this year and of course a generic drug has been developed. Unfortunately, my liver team is completely against my taking of the new generic, but, financially I will be left with no choice. I'm not exactly looking forward to being a guinea-pig for a medication I need to keep my liver functioning - especially considering the challenges and problems I've already faced with another anti-rejection medication (toxicity from Prograf).
Also, I got back from yet another trip to the Lahey clinic today - I've met with yet another rheumetologist. The tendons in my elbows, knees and achillies area feel like they're about to burst. I'll be fitted for all sorts of braces and supports next week - I'll probably look like RoboCop by time they're done with me. But, I'm not going to be able to move if these areas on my body don't heal...So...I gotta do what I gotta do...
Headaches have started coming back with a vengence. I pray its not a response to my immuno's ... ::SIGH::
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Yesterday, May 28th, I went to the Lahey Clinic for my first checkup in 2 months. Besides the on-going pain in my joints that still hasn't been figured out, things are looking good. My blood tests are great and my doctors said I can start going for bloodwork once a month now instead of once every two weeks. One of the surgeons on the transplant team is going to get me a referral to see one of the rhuemetologists at Lahey because so far, my local rhuemetologist just hasn't been able to really do much for me. I know that he does not have much experience dealing with liver recipients and therefore he's not able to try a lot of medicinal therapies for my condition. Hopefully, whoever I see at Lahey will be able to be a little more aggressive with the aid of my transplant team to get to the bottom of this.
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Well, today I was discharged by my visiting nurse. I am now 117 days post liver transplantation and doing "okay". My bloodwork comes back with very good levels and I'm starting to feel a little more comfortable with the whole situation. Its been scary, the memories of the illness, the hopeless thoughts, the strain I placed on loved ones...But I am alive and technially healthy. I have ridiculous joint pain since the surgery, but my doctor raised my prednisone intake from 5mg/daily to 20mg/daily to try and help with the inflammation (arthritis) that has developed. Its been about 3 days now, on 20mg, and I think there is some level of pain reduction in the ankles and knees. Its still extremely painful in the elbows, fingers and shoulders tho. Time to start working on accomplishing new goals! Mainly getting off of the dilaudid pain medication. I can't imagine having to deal with this pain without it. It hurts bad enough WHILE taking it. We shall see...
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I wish you all the luck in the world alb123... your story has really inspired me....
Hello my friend,Watch out for those metal detectors!!!! giggle Hope the braces are only temporary,but we learn to deal with a lot of things in life,if need be. I hate to hear about the medicine change. Hubby once was on a medication that was like a miracle durg for his diabeties,but it came out that it was causing more problems health wise than helping for a lot of people. For hubby it was wonderful,but they stopped marketing it and he had to change and although it was bad trying to find something that worked,he did,and everything turned out fine. Lets keep good thoughts that you will find something that will work well for you(and prayer,I find does great too!)
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