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Update On Sct

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Hello everyone,

 

Well we left for Duke on the 3rd and arrived on the 4th. THis time we drove because we are going to be here over 2 months. We arrived in our temporary apartment and it is wonderful. That is where the journey takes another turn. I was supposed to be admitted to the hospital on the 6th and begin the transplant process. As it turns out, during pre-testing on the 5th, my heart was in A flutter again at a rate of 161 beats per minute. I was admitted to the hospital on the 6th, but not for the transplant but to shock my heart back into rythym. As if that wasn't enough, it turns out that during my last trip to Duke, the last bag of stem cells they harvested had too many "T cells" and are not usable. So, rather than transplant, I have to go through more nupgen shots and apheresis, to collect more stem cells. The transplant is put off another 2 weeks or so. THis time I am not leaving however. My wife and I are staying put at Duke until the journey's end. I am concerned the longer the delay the more my PFT's will deteriorated as testing on the 5th showed more deterioration. The concern is the longer the delay and the further deterioration, the greater chance I will no longer qualify for the clinical trial. I am hoping that doesn't happen and I believe the dr.'s are aware of this and moving it along as quick as possible, while maintaining protocol and safety requirements. In any event, my wife is keeping a journal of this journey which she calls "The Scary Derma Chronicles." I met another Scleroderma patient while hospitalized who is post transplant and doing wonderful. As such, I know I am on the right path.

 

Take care

Dave

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Hi Dave,

 

Thanks for the update! I am so sorry the whole stem cell transplant is having so many bumps in the road for you! I certainly hope they can get the needed stem cells harvested quickly and get the actual transplant going. It is so good to hear that you met someone post transplant and they are doing well. Please do keep us posted as things move along!

 

Warm wishes,

Heidi

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Hi Dave,

 

My goodness, you are sure on a two-steps forward, two-steps back pattern right now. It's wonderful that they were able to catch the Afibs though, and get it under control.

 

It sounds like a good plan to stay put and get things ironed out. And what a wonderful inspiration to meet someone who is post-transplant!

 

I'll be thinking of you and sending good wishes your way.


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.

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I love the name of your Journal. Scary instead of Sclero. I sure hope things are now looking up a bit for you. I can't wait until this is mostly over for you and you tell us each experience as you progress. We are all keeping you in our thoughts as you travel this journey. Please keep us informed as often as you can. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Wow Dave! You sure are going through a lot right now. I'm glad you're in such a good institution that prides itself on being careful.

 

I hope the issues that are setting back the transplant get sorted out soonest. I had to laugh at the Scary Derma Chronicles part... it sure helps to keep one's sense of humor.

 

Best of luck,

 

Claudia

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Hi Dave,

Thank you for taking the time to share your experience with all of us. I know that set backs can really take a toll on you emotionally. As long as you know that they are being safe to make sure you are not in immediate danger. Is your heart all set now? Please do keep us posted on your journey and I can't wait to see the finished copy of The Scary Derma Chronicles!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Dave Thanks for keeping us posted, all of us want to here about your progress as often as possible. Your wifes journal sounds like a great idea!!! I truly hope you can proceed soon. Take care -- keep us up to date, your in our thoughts

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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Dave,

I laughed out loud when I read the name of your wife's journal. My brother also calls the disease Scaryderma. Humor does help. I am so sorry that you have had a setback. Thanks so much for keeping us posted. My thoughts are with you.

Nan

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Hey Dave,

 

I certainly appreciate you taking the time to keep us updated on your treatment plan. I'm glad you've made it thus far, but sorry for the delays. You and your family are in my thoughts and I just know you will experience positive outcomes from this.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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