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susieq40

6 month check

16 posts in this topic

Well tomorrow is my 6 month tests of function to see if it's better, worse, or stable. I'm hoping for better, but stable is good. I'm still having a lot of pain all over, but the Lyrica is helping some. Hope all is well with everyone! I'm counting blessings everyday! Hey I have a vacation planned, the first one in 6 years. Going to northern California to visit family etc. I'm so excited! I'll let everyone know how everything goes! HUGS :bye:

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Hello Susique

 

So how did the tests go and did you get results straight away? I'm hoping for good news for 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)

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Oh man, bad news! I'm down to 54% lung capacity, and the doctor said it's time to look into a lung transplant. I'm so scared, shocked, and just plain old flabbergasted!! Been crying and just don't know how to feel. :temper-tantrum: :crying:

 

P.S. Those friends from this forum on my Facebook, please don't say anything about this yet. I haven't told my mom and don't quite know how she'll take it. She's already depressed and worries.

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Hi SusieQ,

 

I'm sorry your lung function has gone down. I wish I could give you a warm hug and a shoulder to cry on. Well, I can at least give you a warm hug so here goes: :emoticon-hug:

 

The prospect of lung transplant is definitely a big deal. As you know, my husband just had one in January, and he already returned to work the first part of June. It's normally quite a long process to qualify for a lung transplant, to be listed, and to get to the top of the list and be called. So odds are fairly good your doctor is bringing up the idea long in advance, to give you time to get accustomed to the overall idea.

 

In a probably lame effort to try to raise your spirits about it <sigh>, at least it is a treatment option that wasn't even available to scleroderma patients until recent years. Not everyone qualifies for a transplant, which might be a way you'd not have one anyway (although that is also bad news!).

 

But, best of all, there is a chance that in the meantime your lung function will stabilize or improve, a new treatment might become available or an existing one might finally kick in, etc.

 

What I'm saying is, I know how upsetting and shocking the whole idea can be. But there is still light at the end of the tunnel. And if worse comes to worse and you do have a lung transplant, why, then, it's still an uphill battle but not one that you can't face with a lot of faith and sturdy attitude and supportive friends and family, like you already possess. Remember, we are always here 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.

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We are all here for you darlin'

 

:emoticon-hug:

 

Please keep us updated when you go back later this month, I KNOW you can do this :)

 

Let yourself do what you feel like doing, I heard once that crying is essential for healing.

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

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Oh, Susie, what a shocker~ Here's my hug too. :emoticon-hug:

 

I know the idea of a lung transplant is scary, but look how well Shelley's hubby has done. Transplant science has come a long, long way.

 

One of my other 'hats' here is as Assistant News Guide and I can tell you there are loads of clinical trials underway or starting up (we don't post them until they start recruiting patients). I just know that the researchers are getting closer and closer.

 

Here's another hug: :emoticon-hug:. You can have lots and lots. They come with all my best wishes.


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

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It is quite the shocker, and still in a fog...

 

I know it can be a long road to getting a transplant. I'll keep everyone updated! Thanks for the support everyone! HUGS!

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Dear Susie,

 

Here are my good wishes too. And I wanted to ask you not to cancel your vacation. You need a break.

:emoticon-hug:

 

Erika

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Hello Susieque

 

What a shocker, the thing is you get no warning or intermidiate period in which you know things are going down hill before you get to the bottom of it. I went from a heart issue that didn't necessarily effect function to myocardial fibrosis and class 3 limited heart failure.

 

Allow yourself time to come to terms with your current diagnosis which may involve :temper-tantrum: and :emoticon-bang-head: and whatever else you need.

 

When you've adjusted more to your potential transplant you can take comfort from Gene Ensz's experience which has been amazing.

 

Take care and keep posting.


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)

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Hi Susie

 

So sorry to read your post.......here's my :emoticon-hug: :emoticon-hug:

 

Despite your news, I do hope you have a good restful holiday with your family.


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)

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Hi Susieq,

 

I'm so sorry to hear your news. You will be in my thoughts. Here is a great big hug :emoticon-hug: Take care!

 

Annie


Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

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Hi Susie,

My DLCO as well as TLC havried a lot as much as 20%.

My DLCO was as low as 54% and as high as 78% in last five years.

My test last week improved my DLCO, but my TLC went down by 20%.

I have appointment with my doctor on Monday, lets us see what he suggests.


Kind regards,

 

Kamlesh

 

 

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Hello Susique

 

I just wondered how you're doing and whether you've been able to tell your mother? When I got the news about my heart problems I told my mum the bare minimum only to be found out by ending up in hospital and she said she knew all along!

 

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)

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Hi Susie - I am so sorry to hear your news. I just wanted you to know that you will love coming up to northern CA - the weather here has been wonderful. Try to relax and get pampered by your family! Hugs to you! -Ann

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Well gonna wait to tell my mom until after I get back from vacation and also I have more tests done on the 24th and talk to the doctor and figure out what's next...

So gonna go and enjoy my vacation, and I'll keep everyone posted Thanks for all the support!!! :thank-you:

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