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#1 uknlv18

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Posted 12 October 2011 - 06:23 AM

Hi All,

Well I got a new appt with Rheumatology last week, due to my complaint about the horrible appointment I had. I got to see the good doctor as well as my Consultant. And boy what a difference.

My pulmonary function test (PFT) came back pretty much the same as the time before, but my echo showed that my lungs are providing back pressure on my heart. So they aren't sure if I have developed Pulmonary Hypertension or not and have referred me to specialists in Sheffield to have more tests run. It will be about two months for the tests as they need to wait until my fracture is healed.

They told me that the doctors would do another PFT and Echo and if this showed whatever it shows for Pulmonary Hypertension, then they would insert a catheter into my leg. I must admit after that it all goes fuzzy as my brain went into panic mode and all I could think about is they want to cause me more pain. :crying: Has anyone else had this catheter test done and if so can you give me an idea of what to expect and how much pain it will cause?

They are taking me off the steroids as well, which is good as I have put on two stone in the last two months as I eat everything in sight! I'm trying to not eat, but it isn't helping that I cannot do any exercise at the moment. The added weight means I am really struggling when I try to do anything. I have got back on track for the most part with eating less, but the bottomless pit that is my stomach makes it very difficult. And I am a little worried about going off the steroids as last time I reduced them my breathing became very bad, but they said I could use inhalers if this happens again, so hopefully all will go to plan this time and it won't be so bad. :unsure:

Cheers,

Jean

#2 Shelley Ensz

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Posted 12 October 2011 - 01:26 PM

Hi Jean,

I'm delighted that you finally got the real experts on your case, and with many more results. Good for you, for being your own advocate!

Here is a good article by the Mayo Clinic, Heart Catheterization, What You Can Expect. It sounds an awful lot scarier than it really is and reading up on it a lot beforehand will really help ease your concerns.

Just for the record though, they stretched the truth a bit. They don't usually actually insert it in the leg, but rather the groin. :blush: Ugh. Double ugh. Yes, I know. The thought of that alone earns you FREE flowers from me plus a warm hug!

:flowers:
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Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

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Posted 12 October 2011 - 02:04 PM

Hello Jean

Last year I had both a right and left heart catherter test, it's virtually painless all you feel is pressure as they insert the catheter, you can't actually feel it. That said you get a weird sensation when it's in the heart but no pain. The worst bit for me was the no food or drink until after the procedure and the bladder issue because you can't sit up for hours, then you can sit up but not stand for hours. I can't pee into a bedpan so had to have a catheter in my bladder as I can't go for long periods without having to pee. Actually that was my main concern about the whole thing, well that and whether I'd end up with a stonking headache from the lack of food and water!

Don't worry, you'll be posting after your procedure saying it what a breeze it was!

Take care.
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#4 Joelf

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Posted 12 October 2011 - 02:27 PM

Hi Jean,

I'm so pleased to hear that you've at last had a promising result from your rheumatology appointment. It just proves that you do have to be your own advocate with regard to your healthcare.

Thankfully, I've never had a heart catheterisation (although I have seen a video of one being performed) so I can't give you any first hand information about the procedure. However, I feel it must be worthwhile doing it to help your consultant get a better picture and therefore hopefully improve your quality of life. That's good news about the steroids; I do hope that you can manage without them. I can empathise; I'm afraid they do inevitably cause weight gain! :(

Glad to hear that you're able to feel more positive! :emoticons-clap:

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#5 rubydoo

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Posted 12 October 2011 - 03:21 PM

Hi Jean
I have never had to have this procedure done so far but I am under the specialists at Sheffield for my diffuse systemic sclerosis. I have widespread skin involvement, interstitial lung disease, severe raynauds, GI problems and muscle and joint pains. I have had the best care I could possibly get from all the doctors and nurses there. They are very patient centred and try and accomodate all my needs dictated by the fact that I work 4 days a week and am a single parent to 4 children so I really hope that you have as positive experience as I have had so far (if there is anything positive about this). In my experience the specialists here really listen to you and involve you in all the decisions made about your treatment.
Hope all goes well
Big hugs
Helen

#6 judyt

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Posted 12 October 2011 - 04:55 PM

Hello Jean,
I have had a heart procedure similar to the one you are talking about. I actually have Rheumatic Heart Disease as well as Sclero and Sjogrens and when I was told I had Pulmonary Hypertension I went into panic mode. It turned out that the PH
was due to Mitral Stenosis thank goodness. The treatment I was given was basically the same as you will have with the heart catheter.

First of all you get some sedation to help you relax, then they put a local anaesthetic into your groin where there is a large blood vessel. The blood vessel gets opened a little bit and the catheter goes in - you feel nothing. I was able to watch on a TV monitor as the catheter went into my heart and opened up the valve which was damaged. Then they did the testing for Pulmonary Arterial Hypertension just to make sure that was not contributing, and in my case it wasn't.

After the catheter was removed I was wheeled into recovery and the nurses took over dealing with the incision. They strapped on a curved plastic device which fitted into the curve of the groin at the top of your leg and that stayed there for several hours holding the pressure constant. By this time I was tired and I think I probably went to sleep , as I do!!!

They did offer me food and drinks. I remember having yoghurt fed to me and having a drink from a straw. Yes you do have to stay on your back for a time but it's not really stressful. I also had an Agatha Christie to read so the time went by quite well. Because I had a heart repair as well I was kept overnight so more tests could be done the next day before I went home.

I am just thankful that this sort of procedure is available these days - just imagine what sort of state we could be in if they didn't know all this stuff.

Believe me Jean, the only pain is the local anaesthetic going in - not even as bad as the dentist.

Warm and conforting hugs are coming your way, along with the hope that you can be relaxed about it all.

Judy T

#7 bendofislands

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Posted 13 October 2011 - 01:58 AM

I had the procedure done as just as my dad had said many years before "It sounds a lot worse than it is". Not painful, feels a bit strange but that was all. The consultant came in within a hour or so of me being taken back, and told me the good news that it wasn't PH!! No after affects, no pain.

#8 uknlv18

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Posted 13 October 2011 - 08:11 AM

Thanks everyone, that makes me feel a lot better! I will not dread it as much now. Had my appointment with orthopaedics today and they say my arm is healing well, and can probably get to be able to start moving it in two weeks. Which is most excellent news!

And here is a big hug to everyone for helping to relieve my fears.

:emoticon-hug:

Cheers
Jean

#9 Shelley Ensz

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Posted 14 October 2011 - 08:09 AM

Hi Jean,

Oh bummer. We really didn't mean to take all the stress away by relieving your fears. I've found that a little bit of stress and worry can be lots of fun, when properly indulged in! That's why we have things like the World's First Virtual Pity Party!

Please tell me we didn't heal your worries entirely. Hang on to a little of it -- just for the fun of it -- and so that you can attend our Pity Party occasionally, okay? We are relying on you to bring some great treats from the U.K., like maybe some Yorkshire Pudding.

:yes:
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.