Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Happy Anniversary


  • Please log in to reply
9 replies to this topic

#1 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 11 May 2010 - 05:16 AM

It's my kidney's two month anniversary today! I am happy to say it is doing well and so am I. My doctor is pleased with my progress. I have experienced mild side effects from the medications, diarrhea and tremors, but those I can deal with. I still have to go for labs twice a week because my Prograf (anti-rejection med) levels keep fluctuating. My prednisone is down from 60 mg to 12.5 mg and gets lowered weekly until I am down to 5 mg. My bladder has it's days and nights mixed up, I get up every hour at night and head to the bathroom. Do you go at night too? How many times? Restrictions have been lifted, I am no longer in isolation and am looking forward to seeing my friends. I have to avoid crowds and cannot eat food that has been sitting out or fast food. I am able to do a little bit every day and have been working on my closet and drawers. It is a good feeling to finally get some things done.

Over the years I thought the scleroderma was what was making me so tired and depressed. Now I know that was part of it but it was dialysis that was zapping the energy out of me. I don't miss it at all, especially the fluid restriction. I don't know how I ever did it! The sclero is still there, of course, and the secondary conditions that go along with it are the worse things I am dealing with. My breathing is better and I am not using oxygen but my blood pressure is high and its probably from the pulmonary hypertension. My sclero specialist wanted me to start Letairis but the transplant came along and I couldn't. I have read that it causes liver damage. If you have PH what do you take? I go for a pulmonary function test next week and a six minute walk test in June so I will know more then. The calcinosis on my buttocks has been the worse thing I am dealing with and is very painful. I made an appointment with my dermatologist to see what she has to say.

Thanks for being with me on this journey.

miocean
ISN Artist

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 11 May 2010 - 05:47 AM

Hi Miocean,

Congrats on reaching the two-month mark post-transplant. I'm glad things are gradually improving for you!

My husband Gene just had his four-month-aversary since his lung transplant, last Friday. Like you, he has been getting progressively better. It's such a joy every time they lower a med dose or allow more privileges, isn't it?

I'm really glad you are already at the point of wondering how you ever managed when you were on dialysis. I know it was a big risk for you and I'm glad you found the courage to go for it.
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.

#3 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 11 May 2010 - 11:20 AM

I'm happy for you Miocean! Sounds like things are slowly progressing for the better for you, as they should!
Sending good wishes your way!

#4 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 11 May 2010 - 02:53 PM

Hi Miocean and Shelley ,

I just want to add that I am happy for you and Gene. I love *Happy news*!!!

Take care, Everyone.
Margaret

#5 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 11 May 2010 - 03:13 PM

Hi Miocean,

You sound so upbeat and positive. I'm so thrilled things are going along smoothly! Keep up the good work!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 11 May 2010 - 09:04 PM

Miocean I am so happy for you that things are continuing to improve for you.

Do take care
Buttons

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 12 May 2010 - 10:30 AM

Hello Miocean

Welcome to the world of the active bladder...it bites! Congrats on month 2 and feeling better and better and long may it continue!
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#8 miocean

miocean

    Senior Gold Member

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

Posted 13 May 2010 - 10:08 AM

Thank you everyone for all your kind words. I got good news again today. I went to my psychiatrist and when I told him how much better I felt he took me off Lexapro. I am still on Wellbutrin, but he added Lexapro a couple of years ago when I told him I was very depressed. One less pill is fine with me.

Shelley, Thanks for sharing Gene's transplant story with all of us. When he had his transplant I knew I was getting close and I was scared. Hearing about his experience helped me with mine.

I guess I'll be standing in line for the Ladies Room!

miocean
ISN Artist

#9 CarolineC

CarolineC

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 17 May 2010 - 05:02 PM

Hello Miocean,

Many congrats to you and your new kidney! You inspire me! I, too have Scleroderma, PH, and CKF. I'm currently on peritoneal dialysis as well as Flolan. As you can imagine, I kind of remind myself of Frankenstein.

I turned in my kidney transplant application almost two weeks ago. I'd love to hear more about your story if you are willing to share. I've searched and searched for someone in my same boat, but no luck until now!

Caroline

#10 KayTee

KayTee

    Senior Bronze Member

  • Members
  • PipPipPip
  • 84 posts
  • Location:Northern California

Posted 25 May 2010 - 01:01 PM

Congratulations of all your progress.
Lots of warm and positive thoughts coming your way. :flowers:
Kay Tee