Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 Well, my brother finally went in for his transplant eval the last week of March. I was so not prepared for how exhausting it was going to be. We were happy with most of the staff & doctors. Wasn't real thrilled with the hep doc. All the testing went well. He got a clear bill of cardiac health from the cardiologist. His PFT test revealed he is only using approximately 75% of his lungs (but lets keep in mind these are general percentages-cause well the tallest person they have these results based on was 6'2 " -and well my brother is the jolly yellow giant at 6'10 " ) But it does certainly explain some of the shortness of breath. He is going to need to have some dental work done, but his nurse cord. wasn't overly concerned, just some fillings, that we will start working on. They are putting his initial MELD at 19. His nurse cord is hoping to have all the testing & x-rays back in time to present his case to the board this week, if not it will be at the end of the month. He has an A+ blood type, which is the most common, so we shall see. He had a follow up appt. with his local doctor here last week, so I tattle tailed on the hep doc in San . Told his doctor that he didn't give me with warm fuzzies, and that his bedside manner was less than desirable. (The hep doc made us feel as if he was more concerned and interested in " managing " Dusty's PSC than seeing to transplant). I asked his doc here if that isn't what we had been doing. The hep doc wants to an MRCP & try an ERCP cause he feels that he can stent him (hello, he has already had 2 doc's tell him that stenting is not a real possibility anymore-too much scarring). So, his doc here said that he would call and chat with him and give him a history lesson. I told him I wasn't opposed to putting him through necessary procedures, but invasive procedures done in cockiness was not something I was interested in. The risks are not worth it. I can see doing the MRCP, that will at least give them a visual of what is going on, but the ERCP-eh I'm just not sold on. He agreed. So hopefully with the hep doc talking with is doc maybe the next time we see him, there can at least be some easiness. He is scheduled to have his yearly colonoscopy next month. His ammonia lvl's increased allot this past month, jumped up to 67-so he is starting back on the Lactulose. His bili was holding steady at 15 though-yeah normal for him these days. We are 1 month sick free. Woo hoo. Of course tomorrow is Tuesday so I will hold my breath. He likes to get sick on Tuesdays, I don't understand. We always joke that if he gets a transplant it will be on a Tuesday (it is his " server " day)-lol. Just thought I would update everyone on the happenings here. Will let you know when we hear from SA about presenting and listing. in Texas Brother, , 30, UC & PSC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 ,I will also be praying for you and that all will happen in a timely manner.Please keep us posted.LeeHe is scheduled to have his yearly colonoscopy next month. Hisammonia lvl's increased allot this past month, jumped up to 67-so heis starting back on the Lactulose. His bili was holding steady at 15though-yeah normal for him these days. We are 1 month sick free. Woohoo. Of course tomorrow is Tuesday so I will hold my breath. Helikes to get sick on Tuesdays, I don't understand. We always jokethat if he gets a transplant it will be on a Tuesday (it is his"server" day)-lol.Just thought I would update everyone on the happenings here. Will letyou know when we hear from SA about presenting and listing. in TexasBrother, , 30, UC & PSC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 ,I will also be praying for you and that all will happen in a timely manner.Please keep us posted.LeeHe is scheduled to have his yearly colonoscopy next month. Hisammonia lvl's increased allot this past month, jumped up to 67-so heis starting back on the Lactulose. His bili was holding steady at 15though-yeah normal for him these days. We are 1 month sick free. Woohoo. Of course tomorrow is Tuesday so I will hold my breath. Helikes to get sick on Tuesdays, I don't understand. We always jokethat if he gets a transplant it will be on a Tuesday (it is his"server" day)-lol.Just thought I would update everyone on the happenings here. Will letyou know when we hear from SA about presenting and listing. in TexasBrother, , 30, UC & PSC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 ,I will also be praying for you and that all will happen in a timely manner.Please keep us posted.LeeHe is scheduled to have his yearly colonoscopy next month. Hisammonia lvl's increased allot this past month, jumped up to 67-so heis starting back on the Lactulose. His bili was holding steady at 15though-yeah normal for him these days. We are 1 month sick free. Woohoo. Of course tomorrow is Tuesday so I will hold my breath. Helikes to get sick on Tuesdays, I don't understand. We always jokethat if he gets a transplant it will be on a Tuesday (it is his"server" day)-lol.Just thought I would update everyone on the happenings here. Will letyou know when we hear from SA about presenting and listing. in TexasBrother, , 30, UC & PSC Quote Link to comment Share on other sites More sharing options...
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