I can't believe how long it has been since my last post. I just decided I wouldn't make myself post when I didn't really feel like it. After all, this blog was about me dealing with my PKD and planning for transplant, not about being accountable. Today I feel like posting.
I feel mostly normal. I'm not really in shape still, but I'm back at the gym and getting in better shape every day. I haven't lost all of the post-transplant weight, but it'll happen gradually (just about 15 lbs to go.) The bummer is that I don't fit into most of my clothes and I don't want to shop for a bunch of new stuff. I'm on a 6-week plan to get back into them.
Otherwise, I am having some mild side effects. Insomnia and "intestinal problems" (if you know what I mean.) A lot of the latter. If you can believe it, my transplant coordinator suggested I take citrucel or the like to "add bulk." Why would you prescribe more fiber that is typically for folks with the opposite problem to someone with this problem? I am a vegetarian besides so my diet is full of "bulk." I have a call out to my doctor to get further advice. From what I read, it's bad to have diarrhea in the long term because it causes dehydration and, as you know, dehydration is no good for the new kidney. I'm drinking as much as I can to counteract the dehydration.
They gave me Ambien for my insomnia, but after being on it for a few days, my blood tests showed some elevated liver readings - which didn't necessarily proving any causation -- The doctor suspected the Prograf telling me that Prograf in high doses can damage the liver. The following week, my blood tests showed my liver was just fine - the numbers were back down to normal. They want to keep watching it and not make any medication changes. After that happened I decided only to take the meds I absolutely have to take. I just stay up as late as I want until I am truly exhausted so I fall right asleep. After about a week, I think I am finally adjusted to going without the Ambien. The thing is that the Prograf causes my hands to shake and my mind races...I get fidgety and can't chill. It's a bummer.
One more thing. I mentioned I'm a vegetarian, but I do eat eggs and dairy. Not a lot, but I do eat them. Anyhew, my latest blood tests included a cholesterol test. I apparently have high cholesterol: 220 total, 141 LDL and 59 HDL. The transplant coordinator told me that the Prograf can also cause elevated cholesterol levels. DUDE! I'm now trying to minimize my dairy and egg consumption since that's the only cholesterol I consume. I'm limiting myself to 1 egg per week maximum and will cut back on dairy. My only sources of dairy are whole cream in my daily coffee, low fat yogurt 2-3 days per week, cheese 3-4 times per week and occasionally I'll have sour cream with my Mexican food or cream cheese on a bagel. Not much, but I'm going to cut back anyhow. I really don't want to take a pill for cholesterol, but I will if I have to. We'll see.
2 comments:
It's good to hear your doing well! We are getting closer to my dad's transplant. We had another family member come forward to donate. My dad is trying to think of things to occupy him while he's off work. He thinks he will get bored quickly. I hope all he has to worry about is occupying his time!
To all PKD patients,
I know that you are suffering from PKD. I am writing to you because that I am suffering from “PKD” too. I am not a PKD patient, none of my family member is. I am a PKD researcher. In the work, I found out that some of the important data which were published and used by the laboratory to apply for NIH（National Institutes of Health）grants were falsified and fabricated. I presented the evidences and made complaints to the principle investigator of the laboratory and the officials in the institute. However, I was retaliated against for my whistle blowing and was asked to leave my position. If the research misconduct is covered up, millions dollars of taxpayers' money could be in danger of being wasted, the health of patients like you could be in danger of unprotected, and the truth would be buried by the lies. The adverse impact to PKD family is obvious.
I found the falsification and fabrication on PKD research were extensively spreading in the field. It is ridiculous and astonishing. Among all the false papers published, the cilium story is the most egregious one. I have plenty of evidences and reasons to say that most of the papers about the PKD and cilium were fake.
Meanwhile, I would like to say that it is like emperor’s new clothes, only kid like me (in Science) spoke up.
Is it hard to believe? Contact me for details, if you are interested.
In the end, I sincerely wish you and all PKD patients would obtain real cure sooner.
Linc
lincbacon@yahoo.com
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