Almost 5 years post Liver transplant

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MamaLama
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Date Joined Oct 2010
Total Posts : 4794
   Posted 1/28/2016 9:45 PM (GMT -6)   
Mike is going to TP Clinic twice a year now. He had a great meeting with his coorrdinator and Hepatologist at Jackson at U Miami TP today.

They plan to spend 2016 pulling his Prograf back a bit each quarter until he is at .5 mg once a day. Of course the moment his lfts go up, they will increase the Prograf again.

It seems his kidney numbers are not where they'd like them (Createnine, BUN, and GFR). The prograf can be a problem. I hope he does well on the new regimen.

They are changing his BP meds too...Diovan will be replaced with Clonadine as Diovan too can mess with kidney function.

There is a discussion ongoing about not starting a statin though his cholesterol is climbing at each visit...but the cardiologist (who prescribed) and Hepatologist have to duke this out. Hep wants to drop the osteopenia meds also and is calling for a new bone scan.

Now that people are getting treated we have fewer post t.p. members here, but I would love to hear from others who are a few years out.

BTW, the doc suggested that since Mike has not relapsed after Hep C treatment, he didn't expect that to recur unless he was infected AGAIN. And that isn't gonna happen on my watch!

Hope all is well at your house,

Hugs, ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 1/29/2016 3:28:48 PM (GMT-7)


HepCFree
Regular Member


Date Joined Jan 2016
Total Posts : 28
   Posted 1/28/2016 10:17 PM (GMT -6)   
I wish your partner all the best ML.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 1/29/2016 11:06 AM (GMT -6)   
My docs took me off prograf a few months back, as it was messing up my kidneys. Now I'm doing 1,000 mg. cellcept twice daily, with 10 mg. of prednisone per day. No problems so far. My transplant was 6 1/2 years ago. I dislike prednisone, but it is a minimal dose and I don't notice any side effects from it.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 1/29/2016 4:30 PM (GMT -6)   
Thanks HepCFree and David. Glad to know Mike is not the Lone Ranger in the Prograf vs Kidneys area. I guess it is quite typical. Have a great weekend.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 1/30/2016 9:23 AM (GMT -6)   
Glad to hear Mike's visits with his Hep and coordinator are going well.
I hope his Hep wins out over the cardiologist in the "statin standoff".
I've never liked the statins and over the years I've learned to hate them, but I'll bite my tongue now since I promised myself I wouldn't rant...lol

Best of luck with Mike's kidneys. Too often treatment is walking a tightrope...like my internist says..."Well, now we have to prescribe a second poison to counteract the toxic effects of the first one we prescribed". I love that man!
And after many years in anesthesia, I know this too well since anesthesia is really a blend of art and science of very carefully administered poisons.

Are they wanting to start a statin solely on the basis of Mike's "cholesterol"? Does he have any documented coronary artery disease?...or do you think it is more medical opinion that a statin would benefit him?

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 1/30/2016 9:38 AM (GMT -6)   
Hepcsurvivor, thanks for your post.

Mike has bp that is hard to control and takes 3 types of meds for that. He is post Aortic Valve Replacement and his cholesterol # are climbing. He has had 2 caths in the past 5 years and has no blockages or plaque. There is partial occlusions of the carotid arteries, but nothing that needs attention at this moment. They started him on Crestor a year ago and he hated how it made him feel, so he just stopped it and didn't tell the doc.

Now the cardiologist wants to add it again, a less toxic one I think. But TP doesn't see the need. TP is calling for a more complex analysis before he will go along with the meds. Now the docs have to duke it out.

The post TP folks take so many meds already, it would be great to NOT add another.

Hugs,
Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 1/30/2016 7:55:40 PM (GMT-7)


rkayne
Regular Member


Date Joined Jan 2014
Total Posts : 93
   Posted 1/31/2016 3:02 PM (GMT -6)   
My honey is 2 yrs out and kidneys aren't the best but her prograf doesn't seem to make much difference. They monitor but they seem to be holding steady at 'just ok.' Thing is, she is pink, eats food and is here ;) Lately a lot of people been going off on LOTTERY, WANT TO WIN! And yano what? I kinda looked at them all funny and stated, 'Already won.'

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 1/31/2016 5:29 PM (GMT -6)   
A transplant, no matter how successful is still going going to leave you with side effects. You are so right, we hit the lottery. I'd have died in 2009, without a transplant.
nullum beneficium impunitum...

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 2/7/2016 6:52 PM (GMT -6)   
rkayne, so glad to have you pop in, we think of you and that frantic time often. your honey was really in a bad way. I love that line:

she's pink, eats food, and is here

Boy ain't that the truth! Some days I still can't believe Mike is here with us. His friends tell me all the time he looks great....even tooo great, if you get my meaning....every pound I have lost being ill, he has gained. Not good for him. But...he is him and I am me...he has to do what he has to do...same as with the booze from the OLDEN days. Only now I have the wisdom to know what I can control and what is in His Higher Power's hands.\

Hugs, Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

retired12
Regular Member


Date Joined May 2013
Total Posts : 52
   Posted 2/8/2016 9:55 PM (GMT -6)   
Hi MamLama and everyone,
I'm almost 2 years out, working 2 jobs, feeling great. Every now and then I get some bad pain in my stomach but it just last a short time. I'm taking 250 mg of cellcept twice a day and 2mg of program twice a day. My blood test are once every two months, and I have annual check up in May. I really fell like a new man. I loving working again. I'm Driving a bus from 12p to 830p Monday thur Friday. When I'm not driving the Bus, I'm on call for towing vehicles. 7 days per week. I guess I'm trying to catch up with all my lost time. I know it been awhile since my last post. sorry. I'll try better in the future.
Transplanted May 10, 2014

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 2/8/2016 10:45 PM (GMT -6)   
Wow, retired 12, you are doing creat, back to work, feeling well. Keep up the good work. Glad to see you post in. HUGS. ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Kierstin
Regular Member


Date Joined Nov 2009
Total Posts : 79
   Posted 2/19/2016 3:18 PM (GMT -6)   
I can't believe it's been 5 years since Mike had his transplant!

Congratulations to You both, I hope all his issues are worked out soon.

-K
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