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GocartMoz

Sct

19 posts in this topic

Hello all,

 

I just wanted to let you all know I am now 6 days post transplant, now waiting for my white blood cell count to increase so I can be released on an outpatient basis. It will probably be another few weeks. The doctors and staff at Duke are amazing and I am already to see improvement. For the first time in a year I have had some pain free days. I also feel more mobile in the legs and feel some slight skin softening. Despite what was a very tough road with radiation and chemo, I am very happy I have gone through the clinical trial. With the radiation and chemo behind me, I see only more good things ahead. I will write more about the whole process another time, but right now I am kind of sleepy and am going to try to get some shut eye. As much as I love Duke, I have to say a hospital is no place to be to get rest. People come in your room every couple minutes for vitals, iv fluids, weight, etc. For some reason my weight needs to be taken at 4am in the morning. I am happy to do it though, as these dr.'s I am convinced are going to be successful at improving my quality of life.

 

Take care

Dave

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Dave!

 

This is so wonderful. I cannot tell you how happy I am for you and your family. You sound so very optimistic. I know what a long haul it was for you to get to this point, so I'm thrilled about this update!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Dave,

 

I'm really happy to hear things are going so well for you. :D


Your Friend,

 

Gi Gi

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Dave, it's so good to hear that the transplant has been done.

Also appreciate getting an update from you... take care, continue to rest... the best you can, despite the setting of the hospital with its activity in your room.

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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HI Dave,

 

Thanks for the update. I am glad to hear that it sounds as if the worse is behind you! I hope your white blood cell count rises quickly so that you can be released to an outpatient status. Then you should be able to get the rest you need. I am glad to hear that you feel the experience has been worthwhile and are already seeing improvement. That is great news!!

 

Warm wishes,

Heidi

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Dave,

This is great! You are the second person I've know of that has had sct and both of you feel it was a success! Congratulations!

Jennifer

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WooHoo Dave!

 

So glad you took the time to give us a personal update. Thank you. It is wonderful to hear that you already can feel some improvement and that all the pre transplant difficulties were worth it.

 

Here's hoping that the rest of your stay at Duke is uneventful and that you are on your way home before you know it. (I'm sure you're missing your kids and they you!)

 

xoxo emmie

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Dave,

We've all been waiting to hear from you and to hear such wonderful news!!! It took a lot of courage and it appears to be paying for you. Congratulations! I trust that your news posting will be even more good news.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Dave We are so happy to hear your doing well, Take care and get plenty of rest

Birdman & Wife


Hugs for All,

 

Julie (Bird Lady)

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Hi Dave! That was really great news! I've heard so many good things about Duke; you're definetely at the right place. I hope you'll continue feeling better and better as the days go by.

 

Best,

 

Claudia

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Dave

 

WOW!! I'm so very happy for you!! I just got back from SC and am trying to get into the SCOT trials. Am waiting to hear if I can go to Duke as well. I doubt if I'll be able to get into the StemCell arm, (insurance problems), but I have heard so many great results from this treatment!

 

I'll keep you in my thoughts and hope that everything continues to improve!

 

TJ

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Hi Dave,

 

I'm thrilled that you (finally!) had your stem cell transplant and that you are doing so well. With your positive attitude about the whole adventure, I'll bet by the time you're ready to leave, they'll be begging you to stay -- just for the fun of it. :blink:

 

Good luck getting any rest at all in the hospital. Usually that is nigh impossible. But we're all rooting for you, and delighted for your new lease on life!


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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Hi Dave.

It's so great to hear you're doing well. Thank yoiu so much for sharing!

Get lots of rest,

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Dave,

I am so glad that you took the time to fill us in! I have been wondering how you are doing. Hopefully you will see continued improvement and be out of there in no time. Keep us posted when you have time and you are up for it.

 

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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Hey Dave,

 

Thanks so much for letting us know how it went. Sounds like it was worth it for you!! I can not wait to hear more good news from you.

 

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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I am so glad you made it through the worst of it and can now concentrate on resting up and watching all the good things happen. It is so cool of you to share this with everyone. Hugs when you are ready!


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Dave,

 

My husband and I met you and your wife at Duke a couple of weeks ago and we've been reading the Scary Derma Chronicels. You are very brave. I can't imagine how hard the irridation treatment was. Sitting on a bicycle seat in a plexiglass box for hours seems like torture. No matter how difficult the treatment, if the SCT makes you better, it's all worth it. I'm still waiting to hear from CJ if I've been accepted into the trail and also waiting to hear from my insurance company.

 

Stay strong!!

 

April

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Hooray for you Dave!!!!! :lol::lol::lol:

Bless you bless you bless you on your continued recovery. I've been reading your wifes blog and was thrilled to see you hurdling each and every challenge. What does not kill you only makes you stronger!!! It sure didn't sound easy, and I'm just so thrilled you weathered the storm and are starting the get better part.

 

 

I was so worried about you! I just know you're gonna get much much better, and put the bad times behind you.

 

And you cared enough to touch base with the board. Thanks, Buddy.

 

Can't wait to hear more when you feel better. Blessings to your family as well, they must be so happy to see their Dad getting better.

 

I bets it feels awesome to actually feel better rather than worse each day!

 

Take care,

 

Michael in Florida

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