Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

It's finally hit me


  • Please log in to reply
12 replies to this topic

#1 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 18 April 2010 - 06:30 AM

Well, it took five weeks after the kidney transplant but it's finally hit me and the adrenaline rush is over. The kidney is doing fine, that is the best thing, but this week I have been exhausted. I haven't slept trough the night in 5 weeks as I wake up every hour to pee. I've had diarrhea for weeks, probably a side effect of the meds. My doctor tested my stool and it came back negative so he sent me to my gastro who ordered more tests. I had to fill up 4 jars this weekend! In the meantime my doctor told me I could take Imodium and that helps. My gastro gave me a prescription but my doctor isn't sure about it's interactions with the other meds so I am not taking it. My doctor told me I should be taking it easy so I started taking naps in the afternoon. Friday I slept almost all day. I feel a little better now that I've had some rest.

The good new is my incision healed and I don't have to wear a bandage anymore. It is a job managing the pills and the weekly changes. I was put on Magnesium Oxide, anyone else taking it? One of the side effects is diarrhea! All in all, it is better than dialysis. My doctor thinks I am doing very well. So far I am accepting the kidney and that is the most important thing.

miocean
ISN Artist

#2 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 18 April 2010 - 12:02 PM

Hi Miocean ,

I like news that makes me smile. Sorry to hear about the chronic diarrhea but glad you're not rejecting the kidney. I will continue to keep you in my thoughts.

Take care, Everyone.
Margaret

#3 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 18 April 2010 - 03:01 PM

Miocean,
I'm so glad that things are going well with the kidney transplant! yeh - I can imagine that anything is better than dialysis. Sorry about the gi problems. Have you checked out the medication that your GI doctor on drugs.com to see if it does interact with your other meds? If it might help your situation I would do a little more research and ask you GI doctor about it. Do take it easy and I hope you feel better every day.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Cheryle

Cheryle

    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Atlanta Area

Posted 19 April 2010 - 03:42 AM

Miocean,
I hate to see you not take a medication that may be benefical. For the possible medication interaction, ask your pharmicist; they are the experts, (more so than the doctors) or you can check out some sites on the web like Drugs Interaction Checker at drugs.com.

#5 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 19 April 2010 - 05:31 AM

Hi Miocean,

It's nice to start off a new week hearing (mostly) good news! I'm glad your incision has finally healed and your new kidney is settling in happily.

Give yourself a break with the exhaustion and other problems - a kidney transplant is a lot more serious surgery that getting your tonsils out and will take longer to recover from. I know if it were me I'd want to immediately start rushing around doing all the things I hadn't been able to, but that's not the way it works!

I hope that the peeing gets onto a daytime schedule soon and you get to sleep through the night and also the diarrhea gets under control.

Warm hugs and continuing best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 19 April 2010 - 09:41 AM

Hi You,

Please make sure you pace yourself and rest. xoxo
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 19 April 2010 - 11:57 PM

Hi Miocean,

I am glad to hear your body is accepting its new resident! About your diarrhea, I am taking Cellcept (which was actually mainly used as an anti-rejection drug before it was discovered that it also helps with sclero lung and skin symptoms). I have had the problems with chronic diarrhea ever since starting it, BUT proton pump inhibitors are also a culprit of diarrhea as is sclero's gastrointestinal involvement itself, so it is hard to tell where it comes from! I am glad Imodium has helped you. I also started some heavy duty probiotics and it has helped with the lower abdominal cramping.

I wish you all the best and do take it easy although I know that is hard to do sometimes!

#8 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 22 April 2010 - 09:15 AM

Hi Miocean,

Thanks for updating us on your progress post-transplant. As you are discovering, the first few months post-transplant really are the worst, as there is still so much recovery to do, complications, and of course the whole medication routine to get used to.

I thought we'd go nuts the first little while, as it seemed like every few days the lung transplant center would change Gene's dose of Prograf (an anti-rejection drug) and also his Warfarin. We'd have just neatly counted out everything for the week, and have to go back and pick out pills or add them for each dosing time.

The good thing is, that settles down after a few months. The doses level off, the complications get quelled, the drainage holes heal...you have a lot to look forward to, as it really does get better and better.

And then there is so much more to appreciate because it is so fresh in your mind how bad things were just a few days or weeks ago! And your time is gradually more your own.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 22 April 2010 - 05:11 PM

Well, unlike your situation which is not of your own making, I do identify with the peeing every hour thing. I decided to take a cranberry supplement to help prevent any urinary tract infections I THOUGHT I might be having. After a few weeks of more and more having to get up each hour to pee, I made an appointment with my doctor, who blithely said, "You know that's a diuretic, don't you?" Well no I didn't. I stopped the pills and stopped having to get up 7 or 8 times a night.

But I remember it was so difficult to get through a day with no sleep behind me, that I truly sympathize. I hope it resolves itself soon.

#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 23 April 2010 - 03:26 AM

Okay, Enjoytheride, I am going to chalk that one up as my good belly laugh for the day! :lol:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 miocean

miocean

    Senior Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 23 April 2010 - 03:44 AM

Thanks everyone. Things have become a little better. The diarrhea has mostly stopped and I am getting more sleep earlier in the morning. Naps or just laying down help too. It is confusing keeping up with all the changes in meds.My Prograf levels fluctuate, they dropped to 7 so my doctor raised my dose and they went up to 16. Normal is 11 or 12. He said I must be very sensitive to Prograf and is still trying to get the dose right. Then every week my Prednisone is lowered by 5 mg and will continue until I am down to 5 mg and I will stay there. And new things are added, and things are taken away. I am doing my best to keep up with it.

As difficult as things are, I really can't complain. I have another two weeks in isolation then a month of avoiding crowds. I've been lucky with my blood work. I used to be a very hard stick when my skin was so hard but now that it has softened some I am much easier. So far only one person has had trouble getting me and they aren't using a butterfly any more. The twice weekly blood work was one of my biggest concerns because for years they took blood from my catheter. The doctor told me I can bend and lift now but to be careful. My breathing has improved and I am not using oxygen anymore. So things are improving. Thanks for all your concern.

miocean
ISN Artist

#12 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,003 posts
  • Location:Pennsylvania

Posted 23 April 2010 - 04:37 AM

Hi Miocean ,

Thanks for the smiles today. Glad to hear your doing well.

Take care, Everyone.
Margaret

#13 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 23 April 2010 - 03:33 PM

Hi Miocean,

Glad you're doing better--hang in there! It's great that you're off the oxygen, too. :emoticons-yes:

Big hug,

warmheart