Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


One Year Anniversary

  • Please log in to reply
11 replies to this topic

#1 miocean


    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 920 posts
  • Location:NJ

Posted 11 March 2011 - 12:47 PM


Today I am celebrating the one year anniversary of my kidney transplant!



Every day is a celebration as a year ago my life changed for the better due to the gift of a kidney by my donor and his family. It's difficult to realize that a year has passed, and the journey I traveled to get here. I feel so much better and am just beginning to understand how vey sick I was. Denial is a very interesting thing, it actually helped me move through the past six years of dealing with scleroderma and the related kidney failure.

I lost many things I loved, teaching art to little kids, creating art on my own, the ability to run and swim, even walk distances, but gained so much also. The support of my husband has been incredible and without him I don't know if I would have made it. He did everything for me, especially boosting my spirits with his sense of humor. My family, which enlarged immensely when I married, has been so supportive and encouraging. My friends have stayed with me, scheduling activities around my dialysis days so I could participate and keeping in touch via email. My circle of friends has expanded through my involvement with a non-profit and planning my high school reunion has reunited me with people from my past. This forum was a blessing during the long period of "lurking" and then actively participating. I don't know what I would have done without all of you and your insight and sharing. I've learned that the people in your life are the most important thing, and that you should help others in whatever capacity you can.

My days are filled with activity once again, helping to make sick children's dreams come true, creating the eNewsletter for the ISN (with Shelley's help), and participating in a Dialysis/Transplant Support Group. My creative skills are being put to use via technology, my latest venture video editing. We are traveling and just returned from a long awaited trip to our favorite destination, Cabo San Lucas, Mexico.

I will always have diffuse scleroderma and the damage it has brought to my organs. Fortunately, the transplant has also brought an improvement in many functions on my tests. Unfortunately, my lung fibrosis has increased. However, my diffusion rate has increased and the medicine they would treat my lungs with is the same I am on for rejection of the kidney so I am in a holding pattern. I am now suffering with the loss of a joint at the base of my thumb due to OA and, believe it or not, it is more painful and frustrating than the damage to my hands from scleroderma. I'll deal with these things one day at a time. In general, I have confidence in my doctors but experience the same frustration as many of you, the lack of articulation between them.

:emoticons-thankyou: Thank you for being there, and if you are also lurking, join in and share. You may not realize it, but in asking questions and sharing your story you are helping many others deal with the disease. :emoticons-thankyou:


ISN Artist

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 11 March 2011 - 05:38 PM

:emoticon-congratulations: Miocean :emoticon-congratulations:

You prove what I always say that the best people have scleroderma and that we are a tenacious bunch that can overcome just about anything! I said to someone this week, about illness, that it's what you do with it, you have taken your difficult experiences to benefit others. :thank-you:

Take care.
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)

#3 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 11 March 2011 - 05:57 PM

:woohoo: Happy anniversary! Here's hoping we get to celebrate years and years of them with you. A big thanks goes to you for not only being an inspiring example for all of us but also for all that you are giving back in volunteering. You're a star!
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

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,280 posts
  • Location:Minnesota

Posted 11 March 2011 - 09:08 PM

Hi Miocean,


Congratulations on your one year kidney transplant! I can surely appreciate what a huge milestone that is. One wonderful year without being chained to dialysis. How wonderful is that?!

May you have MANY more! We'll all do the Sclero Happy Dance for you --

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.

#5 Robyn Sims

Robyn Sims

    Silver Member

  • Members
  • PipPipPipPip
  • 166 posts
  • Location:Melbourne Australia

Posted 11 March 2011 - 11:47 PM

Hi Miocean

Congratulations on your first Anniversary! :emoticons-line-dance:

What an inspiration you are to others and yes, sometimes our troubles can have a positive outcome, as you have mentioned.

So pleased that you were able to get to your favourite holiday destination, sounds wonderful.

Warmest wishes :emoticons-group-hug:

#6 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,007 posts
  • Location:Canada

Posted 12 March 2011 - 04:40 PM

Hi Miocean

So happy to hear that you are back to doing things you enjoy albeit in different ways, it is such an insight to think of all the things you have gained as well! Congratulations!!!! :emoticon-congratulations:
Sending good wishes your way!

#7 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,900 posts
  • Location:West Sussex

Posted 12 March 2011 - 04:50 PM

Hi Miocean,

Many, many congratulations on the first anniversary of your kidney transplant!!! :emoticon-congratulations: :emoticons-line-dance:

You're an absolute inspiration to everyone on the forum and may you and your kidney enjoy lots more happy years together!!! :woohoo: :terrific:
Jo Frowde
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#8 Sandy B

Sandy B

    Silver Member

  • Members
  • PipPipPipPip
  • 113 posts
  • Location:Abingdon, Oxfordshire, UK

Posted 13 March 2011 - 08:14 AM

Hi Miocean,

What an incredible journey you have had and the great thing is, it isn't over. Like many have said, scleroderma takes a lot away from us, but it also gives us incredible powers of determination to carry on and overcome the problems we have to live with on a daily basis. It also makes us take a fresh new look at life, which isn't a bad thing and what we are still able to do and achieve, so congratulations on your first anniversary and well done you for doing it with such courage and determination and being a real inspiration to others.

Take care

Sandy B

#9 jillatk


    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Colorado

Posted 13 March 2011 - 12:04 PM

You go girl! What an accomplishment.

#10 Margaret


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,014 posts
  • Location:Pennsylvania

Posted 13 March 2011 - 07:31 PM

Hi Miocean ,

I'm chiming in late here, but wanted to say *Congratulations* :emoticons-line-dance:

I love the new emoticons, too!!! Too many good ones to choose from!!! :emoticon-dont-know:

Take care, Everyone.

#11 Sharon T

Sharon T

    Senior Bronze Member

  • Members
  • PipPipPip
  • 51 posts
  • Location:Thousand Oaks, CA

Posted 13 March 2011 - 11:00 PM

Congratulations, miocean! Hard to believe its been a whole year! :emoticon-congratulations: It sounds as if your life has truly been turned around by the transplant, and I'm so happy for you. :jump-for-joy:
Sharon T.

#12 Tawanda70


    Bronze Member

  • Members
  • PipPip
  • 17 posts
  • Location:Waxhaw, NC

Posted 14 March 2011 - 07:57 AM

Miocean, belated congratulations!!! :emoticon-congratulations:

May you continue to do well and I am saying many thanks for your one-year anniversary :)