Six Months Post Transplant

Carol,

Mike's plate is very full for all the follow up. I will be thinking of you both and sending positive vibes for your days of peace and love that all goes well.

You both have gone through so much since you started posting over a year ago. I and all the rest here have been cheering you and Mike on.

Will look forward to good reports from Miami.

Best,
Emma

Carol . . I hope all goes well with your trip to the hospital/doctors. I know what you mean about having to move the car down there!! i love that you keep us posted with what is going on, I hope to be posting post transplant messages in early 2012!!

Have a great trip and lots of positive vibes are comin at ya for good news while you are there.

I hope Mike can golf again . .and soon!!

Debbie

My transplant took place almost 30 months ago. I've had a couple of setbacks; kidney stones and then Lyme Disease last summer. I began interferon/ribavirin therapy 13 months back to preclude any damage to my new liver. So far it's 4 months of negative viral load, so I'll stop the treatment in a couple of months. To sum it up; I've been told by my doctors that I was within 1-2 weeks of death, so any post transplant, minor glitches don't mean much in the scheme of things. There have been mostly great days since July 2009. Before the transplant, I spent almost 8 years of feeling lousy.

Carol, We are thinking of you both and thanks so much for sharing all the info for those of us that might be traveling this path after Mike. Hubby had 3 glorious days of feeling well and thinking well, now back into pain and HE. :( Your posting helps me understand what would be coming with possible transplant. Hope all goes well with upcoming appts for Mike. Angie1953

Today was Mike’s 7 month post transplant check up. He is seen in the Post Trasplant Clinic to monitor anti-rejection meds, etc.   He is on a 2 months cycle.   His blood work is pretty good.   They are adjusting his blood pressure meds again.   His BP today was 205/94.   I guess he was nervous. Usually it isn’t so high.   The only thing they are ever worried about are his kidney tests – BUN and Createnine have been too high all along.   Drink more water they say.   He’ll float away if he drinks much more. I think it is the meds, not the drinking water.   The best news today was that he can discontinue the finger sticks and intermittent insulin injections. Since he has Hep C, he has a consutation with Hepatology every two months also.   Hep C can return post transplant and does with some and not others. It works its magic much more quickly than on the original liver.   Where it took Mike 41 years to become totally decompensated, it can do the job on the transplanted liver in 5-7 years.   Some centers treat Hep C patients routinely after transplant, often very soon after transplant.   Our center does not treat until or unless the patient is symptomatic.   This is not the same as having a high viral load (which Mike does – was 50 Million and is now 37 Million).   It means if and when the liver function tests go up, they will they do a CT scan and liver biopsy to see what is cooking.   If it is a rejection episode, they will deal with that.   If   it is the Hep C causing scaring, they recommend treatment at Stage 2 cirrhosis. Regarding new drugs post transplant. They are not using the new drugs post transplant here because of the effect they have on the antirejection meds. I may have this wrong, but Incivic can make the Prograf 700 times more potent. That would be a lot of tremors, and high blood pressure, and high blood sugar, and crappy renal function!!!!!   So Miami is taking a wait and see attitude and hopes yet another new generation of drugs will work better. Should Mike have Stage 2 cirrhosis before a new generation of drugs is available, they could use the Incivic and switch his antirejection meds to cyclosporin, which does not have as serious a multiplyer effect, or so the research indicates.   But, trust me, if you say they use the Incivic WITH the Interferon, you might have a fight on your hands with Mike!   He had a really bad reaction in 2003. The U Miami Hep said they have done something like 1600 liver transplants here in recent years, about 1000 of them had Hep C. And though they are conservative in their post transplant Hep C treatments, their center is not FULL of folks decompensated again!   So, no real research, but it gives credence to their conservative approach…not everyone gets Hep C back really bad. He gave us some their protocol post transplant for other things: ·          Colonoscopy every 5 years, as cancer stats are higher post transplant ·          Have dermo consult regularly, as skin cancers are very common ·          Follow up with oncology as HCC can recur, but at a high percentage ·          Bone scan every 2 years, as osteoporosis more prevalent post translant ·          Add Vit D and 500 units of Calcium to daily routine ·          Get a flu shot annually ·          Get a pneumonia shot every 5 years for those on antirejection meds lose immunity ·          Mike also needs a transthorasic echocardiogram and a carotid artery u/s annually for his cardiac issues.  

We just got back from Oncology.

His abdominal MRI was fine. His chest XRay shows something weird on the right side. Not a tumor as that is not visible on teh MRI, just that the the lungs are pushed up on the right side for some reason...maybe how they put the liver in?

They will repeat both in 4 months...

Tomorrow is ortho...he has those partial tears in the shoulder. Just one more thing. Likely just a cortisone shot for now.

In all, no news this week, but he is exhausted from sitting around getting poked.

Carol

Post Edited (MamaLama) : 12/2/2011 4:05:48 AM (GMT-7)

Hi Deb.

Bum shoulder slowing the golf game dream. He has January in mind for his first tee time! We have friends coming from the UK and want to show them a good time! He'll at least ride along for sure.

Thanks,
Carol