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Sick Again

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I am sick again. I’m not quite sure if it is a cold or something else. I have had a fever for the last day, on and off. It’s actually really weird, my body can’t seem to regulate my temperature. I go into a cold room and my temperature drops to 96 and if I go into a warm room I get a fever. That just isn’t normal! I also have a sore throat, stomach pain, headache and a runny nose. I’ve also been battling some SERIOUS fatigue. It is extremely frustrating because I am supposed to be all healthy and happy now (well, I’ve ALWAYS been happy!) and I am so tired all the time. Coleman tells me all the time that I went through two huge surgeries but it’s been 4 months already, I want to feel human! I really hope it gets better, everyone says the first year post-transplant is really rough and from there on it gets easier (and those people only had one transplant).

I called the on-call transplant doctor last night because I had a temperature of 101. She said that I am ok for now, as long as my fever doesn’t go higher or my symptoms don’t get worse. I’m glad I didn’t have to go to ER (the symptoms I was having last night fit into the category of possible organ rejection). I need to go get my prograf levels drawn to make sure everything is fine. Other good news? Coleman comes home tonight!!

Bella-Grace Update
Bella-Grace was taken to Oakland Children’s hospital yesterday after being in the hospital in Reno for over a week, with pneumonia and on oxygen because she is having trouble breathing. They might need to put a feeding tube in her (she aspirates every time she eats, and it gets in her lungs and thus makes it hard for her to breathe). They will be running tests over the next few days to determine if there is anything else that can be done instead of a feeding tube! We are hoping and praying they figure something out and she is home for Christmas! Please keep her in your prayers, she is an absolute doll!

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One response »

  1. Dear Kortni,

    I’m wishing you the best of luck. My girlfriend also has cirrhosis and she is on a transplant list. I still pray every night that she will get better without one though (and so I follow all the newest developments in the current research and treatments of cirrhosis rather religiously, too).

    Her doctors told us that there is nothing they can do nor recommend in the meantime. So, as a Chemistry major with a minor in biochem and nutrition, I took the initiative to “prescribe” her some safe nutritional supplements that I felt might delay the progression of her fibrosis, boost her immune system, and reduce her ascites (ie: water “bloat” due to portal hypertension).

    I can safely recommend milk thistle, resveratrol, and vitamin C at dosages of up to 500mg (daily). Smaller dosages of zinc and selenium (50 mg) every second day help with immunity. I also rotated in some relatively low doses of beta carotene and vitamins A and E (2-3x / wk).

    Aloe juice is also very good for helping to soothe and heal varices. We add turmeric to our meals whenever we can, and try to avoid trans and saturated fats while increasing our omega 3’s. Eating raw broccoli and cruciferous veggies (cabbage, etc), and eliminating as much salt as possible really helps too. Chili peppers and cayenne are also good (capsaicin!) if you like spicy foods. BCAA’s (from the bodybuilding store) can also help you with fatigue, and the taste is (almost) palatable in a berry/pineapple smoothie.

    It’s been six years since she was diagnosed, and her doctors had predicted she’d be lucky (50% chance) to still be alive in two, so I’m guessing that my Rx may have actually helped, (and/or that my prayers may have actually been heard as well, since she doesn’t always follow my Rx’s as closely as I’d like, and stubbornly refuses to consider quitting smoking despite her doc’s advice!!)

    Anyways, in the course of our many visits to the hospital we’ve had occasion to meet some transplant recipients. One woman we met got hers around 25 years ago. She’s now in her 50’s and says she feels great. She did say that the first couple of years were kind of rough though, but to hang in there because it gets much, much better after the first five.

    I’m hoping that sharing this with you and your readers may help serve as an encouragement to remain positive, and to continue to have Faith. – Best regards, Roberto (& Sonja)

    Reply

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