Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Dave's Update


  • Please log in to reply
13 replies to this topic

#1 GocartMoz

GocartMoz

    Silver Member

  • Members
  • PipPipPipPip
  • 164 posts
  • Location:Florida

Posted 03 August 2007 - 03:49 PM

Hello all,

Sorry it has been so long since I gave an update. As you may know I had my stem cell transplant at Duke in March. I just returned home to Florida yesterday. I am sorry to say the journey was much rougher than I anticipated. The good news is that I am home, feeling better than I have since March, and optimistic the transplant will ultimately be successful. My skin has definately softened and I am currently not in pain.

Basically, before coming home yesterday, I was home for 3 days in may, before returning to two hospitals in FL, a rehab, and then back to Duke. All in all I have had 4 or 5 admissions and discharges just at Duke. Other than the 3 days in May I was either hospitalized or treated at the outpatient clinic in North Carolina. Frankly, so much of the journey is a fog. I don't remember alot of it.

The latest hospital stay was mostly due to digestive issues. I had nausea and was vomiting, and also had abdominal pain. Since the start of my disease I had lost my appetite and to date have lost close to 100 pounds. At the hospital and at home, I was given TPN(total nutrition by infusion) for a long time. X-rays and ct scan showed strictures in my intestines caused by the Scleroderma. I had laproscopic abdominal surgery. They couldn't find the strictures and are now talking about open surgery. However, I have been doing well and holding down food on a soft food diet, ao I have opted to forego this. I cannot even think about another surgery now. I just want to be home, get back too work, and live my life again. The 4 walls of a hospital room are too much for me to even think about again.

While in the hospital I also developed a staph infection and an infection caused by my PICC line. That infection caused my blood pressure to drop to 65 over 38 and I found myself in ICU for a while.

I hate to be bellyaching, no pun intended. The truth of the matter is I am hopeful the worst is over and things will be getting back to normal real soon.

I hope everyone has had a good Summer and is staying healthy.

Dave in FL

#2 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 03 August 2007 - 04:17 PM

Hey Dave,

Thank you so much for checking in. My goodness you are a strong one. I honestly don't know if I could go through the journey you just took.

I'm so happy you are home, revel in that, take some time and I truly hope you move toward a more healthy place in your life.

I remember seeing a picture of you, I can't imagine that you even had near 100 pounds too lose!!! Hope you start gaining soon.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Shelley Ensz

Shelley Ensz

    Root Administrator

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

Posted 03 August 2007 - 04:26 PM

Hi Dave,

It's great to hear from you again, but my goodness, what an ordeal you've been through! I can't even begin to imagine what all the hospitalizations must have been like.

Hopefully now things will settle down a bit for you. Being back at home in itself can make all the difference in the world. Those staph infections can be very nasty, I am really glad you pulled through that.

Now that you're settled in at home, hopefully we'll be hearing from you lots more. It's a positive sign that your skin is softening!
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.

#4 emmie

emmie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 321 posts

Posted 03 August 2007 - 05:38 PM

Dave,

That post had to take a lot out of you--Thanks! Nobody could have imagined what you went through. I think this is why they don't do these things "everyday"! On behalf of those in the days to come (unfortunately) thanks for all that you put yourself through.

I hope that the weeks to come see continued improvement and you getting on with your life and some normalcy in your days. Take good, good care!

xoxo emmie

#5 barefut

barefut

    Platinum Member

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

Posted 03 August 2007 - 06:18 PM

Welcome Back Dave!

So glad to hear from you again. I can't imagine going through what you did! But ya gotta do what ya gotta do right?

Here's hoping the worst is behind you now and you can go on to live a long, happy, HEALTHY, normal life!

Take care and stay in touch.

Love,
Barefut

#6 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 04 August 2007 - 03:22 AM

Dave,
I have been thinking about you and wondering how you were doing. I am so sorry that the road has been so rough. I do hope that you can find comfort and gain some weight. Take care of yourself!
Nan

#7 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 04 August 2007 - 03:24 AM

Dave,
I am so glad you posted. Although the journey was a difficult one, I am so happy that the worst part is over. I can't even imagine how hard this has been for you.
I hope you regain your strenght quickly and get some weight back on you.

Take care and here's to the future!
Jennifer

#8 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 04 August 2007 - 03:54 AM

Hi Dave,
I am so happy to see you posting again! Thank you for sharing your experience with everyone here. Although it has been rough, hopefully you will have a great result. Most times the rough road is the only road to take. You are so very brave and my thoughts are with you for a speedy recovery form here on!

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)

#9 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 04 August 2007 - 04:04 AM

Hi there Dave,
I am so GLAD that you are back and on your way to recovery. You have been through a lot to regain your health. We are all here with you as you get better day by day.
Hugs &
*WestCoast*

********

#10 Lynda

Lynda

    Bronze Member

  • Members
  • PipPip
  • 17 posts
  • Location:Ontario, Canada

Posted 04 August 2007 - 04:48 AM

Hi Dave, would you mind writing me to up date me on this "stem cell transplant" am interested in hearing about this. Did you ask for this procedure or the doctor?
Lynda

#11 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 04 August 2007 - 07:39 AM

Hi Dave,
Like emmie said, it had to have taken alot out of you to post, but like nan, and others I'm sure... I've wondered how you were.
You really HAVE been through the mill, but I am so glad to read that you feel things are on the upswing.
I'll continue to hold good positive thoughts for you in your recovery... Keep up the good work, K?

Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#12 Sherion

Sherion

    Silver Member

  • Members
  • PipPipPipPip
  • 185 posts

Posted 04 August 2007 - 01:09 PM

Dave,
I am so sorry you have had to go through so much!!!! You must be an extremely strong person. My heart goes out to you and I hope the coming days are much more pleasant for you. Thank you for going through the trouble to post us about your journey. Roses and best wishes to you.

Sherion

#13 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 04 August 2007 - 08:11 PM

Hi, Dave. Let me join the others with good thoughts and lots of hugs. It has been a rough path for you and I hope you can now relax and concentrate on building yourself up again. Thanks so much for letting us know how you are.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#14 janey

janey

    Platinum Member

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

Posted 06 August 2007 - 03:15 AM

WOW Dave - You have had one rough ride! I certainly hope the worse is over. Just being home is a healing thing, so hopefully you'll start seeing more and more improvements. The fact that you're seeing skin improvements is marvelous! We're cheering for you Dave!

Thanks for this update. I hope to read more improvements as time goes on - and we all know - it takes time.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)