Jeannie McClelland

Mortality high in systemic scleroderma with PH

21 posts in this topic

Dear Mark,

 

Hello and welcome to Sclero Forums! I'm sorry it is because of scleroderma and severe lung involvement. But this is definitely the right place to be.

 

At the University of Michigan, did you get in to the scleroderma center in Ann Arbor? That is a very top notch center and on the leading, cutting edge of treatments for scleroderma and pulmonary hypertension. You'd be quite hard put to be in better hands.


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 Susie,

 

I just caught your message that you might have flunked your ECHO. Fortunately for you, they are not a reliable test for pulmonary hypertension (PH). Which means they will probably need to run other tests, like a right heart catheterization (RHC). When it comes to that, I've heard it both ways, that the RHC has picked up things the ECHO didn't detect at all, and also that the RHC has determined pressures were fine that looked goofy on the ECHO.

 

I'll be sending good wishes your way. I'm pretty sure all your readings could have been off due to your acrobatic rah-rah-rahs for us all, or maybe from laughing too hard at some of the postings in Sclero Den. That surely must be it!

 

Let us know how things go on Thursday. We're all rooting 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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Does it mean anything if mild pulmonary hypertension (PH) shows up twice on Echos, then the last Echo I had was normal 3 months after the last time PH showed up? I mean should I start counting down to 3 years? Are there symptoms of PH other than things that show up on Echos? Like breathing problems or something?

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Hi, all,

 

I wanted to drop a line here about the whole percentage thing.

 

I have always been on the small side of the percentage wagon.

 

85% of people hit head on by a 18 wheeler doing 45mph while driving a sub-compact will not survive and 99% that survive will have serious injuries. I broke one bone in my hand and scratched up my forehead and was eating pizza three hours later after leaving the ER. (1989)

 

I was sterile, no children in my future, then the above mentioned accident and 10 months later along comes my daughter. (1990)

 

Birth control (two forms) left a 0.001% chance of pregnancy. Along came my son (1992)

 

Surgical mishap (blood pressure went up, they treated it. Blood pressure went away, they gave me a fluid overload to try to get it back filling my lungs with fluid and enlarging my heart 4x normal.) 5% chance of surviving the night in CCU and 15% chance my heart would recover. Well, I made it and my heart went back to normal size with only slight thickening to the left ventricle. (1999)

 

I think that percentages are a challenge and not a fact; a call to arms. I remember waking for a moment in the CCU that first night and hearing some nurses saying how I would not make it though the night. That did not scare me, it made me mad. No one tells me what to do! :lol:

 

Percentages are the number of people that fall into the "normal" ranges of any one thing. Well, we are not normal, so :P to percentages!

 

Hugs all around,

 

Penny

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Thank you for your support, Shelley!

 

Here's the deal, so far! I did "the 6 minute walk" and did well. Walking on the flat doesn't bother me...it's the stairs that are MY culprit! They took the chest xray. The doctor is heading up a PH Clinic that covers quite a vast area, so I feel in good hands!

 

I was originally scheduled for the pre-admission and RHC for Tuesday and Wednesday, but there is only one doctor who performs the test and he only schedules these for Mondays. So!

 

I'm now scheduled for the pre-admission on Friday, March 20th and the Right Heart Catheterization on Monday, March 23rd.

 

 

I was so grateful for the down-time between now and then, as I want my mother to be doing much better than she has been, over the last few weeks.

 

At any rate, it will be good to find out what's what, in regard to PH. We'll know when we know it, right?!

 

How right you are, Penny...how right you are!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Wohali - I don't think you need to start counting down to 3 years just yet! ;) Echo's aren't a precise instrument. They can show that there might be a problem with Pulmonary Hypertension, but they can be very misleading too. I just put a 'personal observation' post up about my experience with using an echo as a definitive diagnostic tool (which it ain't!) for PH. We've got a great section on Pulmonary Hypertension Symptoms, since you asked about other symptoms.

 

Susie, your experience with the walk test made me laugh. Walking on the flat - OK. Hit the stairs? Whew, let me catch my breath here. Did you ever notice there are usually 13 steps in a flight of stairs? :lol: One of my dogs has taken to walking beside me up the stairs instead of galloping ahead like she usually does. Should I worry? :unsure:

 

Hey Penny, will you buy me a lottery ticket if I send you some cash?!! Way to go!

 

Hugs, everyone!


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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