Danny was discharged this past Friday after the GI and Infectious disease docs felt comfortable that they had ruled out or at least submitted the blood work for bacterial infections. They feel like it must be a virus that will need to run its course. The heart transplant team now believes Danny's body is rejecting one of the anti-rejection medicines. He has had some stomach problems each time they've increased the dose of this particular medicine, but nothing like what he has been experiencing the past few weeks. The onset of the severe diarrhea began about the same time he was completely weaned off of pain medicines. We didn't realize that connection until this past hospital stay. Apparently narcotic pain medicines have a natural side-effect of causing constipation, which counteracted the diarrhea. Crazy!!
The plan is to taper off of the Cellcept for a little while and then give him a huge dose when the doctors (more likely the clinical pharmacist) say it's time. They explained it to Danny like shocking a swimming pool with chlorine. They will try to shock his body into submission. I don't know what the plan would be if his body continues to reject (by getting rid of) the important. As far as I know, there isn't an alternative to this particular medicine.
It's Tuesday night, and I don't see an improvement in his diarrhea yet. He appears weak and tired to me. I don't see how he isn't completely dehydrated. At one point he was told to take Metamucil, but he needs to call the nurse to find out how much to take.
It's hard to watch him feel so yucky. He had blood work done today and I don't know the results yet other than he can go down a little bit more on the Prednisone. That's great because they want him completely off the Prednisone before doing the hernia surgery, which will hopefully be in December.
I highly highly suggest getting your husband tested for Lyme Disease and Coinfections via Igenex Labs, as it is highly sensitized and typical testing for Lyme Disease tests false negative 70% of the time. Vectors carry OTHER disease and Lyme Disease is a stealth infection. It can dwell for years causing numerous vague symptoms that turn serious. There's a chance this could be why he's not feeling tip top yet. If you need help finding a physician, you can email me and I'll help you find one in your area. You'll want to see an LLMD for testing ONLY.
ReplyDeleteI came across your blog after seeing his image on google image and thinking "he looks like he has lyme." It causes the insane muscle wasting, and you can't even smile because you're just so sick and sad.
My email is a d a r a l e a @ y a h o o . c o m without the spaces.
For more lyme info, watch the film Under Our Skin on Netflix or Hulu (free). Lyme CARDITIS is the most common symptom of the illness. But it causes up to 120 other systemic symptoms.
With love,
from someone who has survived it.