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Biomarker for Diffuse Scleroderma skin has been discovered!


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Right Heart Cath


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#1 barefut

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Posted 11 February 2009 - 05:57 PM

Give me the scoop. I want details.

Thanks! :)

#2 janey

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Posted 11 February 2009 - 06:13 PM

Barefut,

Here is a link to MedlinePlus on right heart catheterization. It talks about the procedure. It's almost exactly like the cardiac ablation I had a couple of years ago except I had 3 things threaded from the groin to the heart through 3 different veins. I know it sounds pretty bad, but it wasn't. The procedure was totally painless. You get a free shave and lots of rest. I was awake watching the monitor the whole time. Afterward I had to stay laying down for a few hours in order to allow the cuts in the groin area to start to heal.

Is your doctor considering one for you?

Hope this helps.

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

#3 barefut

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Posted 11 February 2009 - 06:19 PM

Thanks Janey! HA! I was just reading the Medline info as you were responding.

Thanks for your firsthand account. If I have a choice, it would seem easier for them to go in through my neck!

I was asked to participate in a study at Virginia Mason and a right heart cath is required. I will let y'all know more about it when I do. In the mean time, I'd still love to hear more stories of first hand experiences.

Thanks,

#4 Penny

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Posted 12 February 2009 - 03:56 AM

I have had a couple of heart caths done, and from my own personal experience the worst thing is the anxiety leading up to it.

They sedate you for the procedure so it becomes more of a daydream like experience and you end up watching the monitor and before you know it they are done. You might feel a little 'warm' sensation when they are doing it, but it is not an unpleasant feeling and they will talk you through the procedure as it happens.

When they are done they will 'paint' your groin with a sticky adhesive and place a hard pressure bandage there that might be a little uncomfortable (not painful, just annoying) and you will have to lay still for a few hours. (up to six)

Your groin might be a tad tender for a day (mostly from the pressure bandage) but I have had worse bruising and tenderness from regular blood draws on my arm.

Personally, I want to extend my thanks for taking part in a study... the things learned through these studies help so many and your time will benefit people for generations to come.

Penny

#5 fragiledancer2

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Posted 12 February 2009 - 04:56 AM

Hi Barefut- I had one about a month ago and it was not so easy. I am glad I did it as it provided really helpful data, but it was more than I thought it would be after reading others posts saying it was not a big deal. I went in very early, was prepped and the procedure was under an hour. They do go through your groin and I was not sedated, but I know many doctors do sedate. It wasn't too painful, just uncomfortable. Then I had to lie flat for 6 hours as the artery has to close. That was very hard as I needed to pee often because they IV you with fluids to wash out the dye, etc... I went home that evening. It was a very long and draining day. I was not to climb stairs for 2 days and not exercise or drive for 1-2 weeks. You have to be careful about the incision and artery. So, it wasn't scary, but I think I really underestimated the procedure and it would have been helpful if I had gone into it realistically. We have a difficult disease, and so need to do what we have to do to keep healthy. But, it is what it is.

#6 Sweet

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Posted 12 February 2009 - 01:51 PM

Oh my Barefut buddy. Wish you didn't need it at all. Hope things go well. *hugs*
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 lynne09

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Posted 12 February 2009 - 06:13 PM

Hi Barefut - I wish you weren't having one. I just had one done on the 4th. I had to do the bicycle test with it so they could determine if I have pulmonary hypertension with exercise. That meant that they couldn't sedate me and they went in through my neck. The procedure is intense and was scarey but my anxiety didn't help any. It isn't something I recommend on a frequent basis, but now that I've been through it, it isn't as scarey just intense. The scariest part was when they put the surgical drape over me and layed out instruments on top. I knew what was going on but it was intense. I've had surgeries but usually sedated by then. Then they numb up the area and I assume cut the opening but of course I couldn't feel it. I could feel pressure when they threaded the cath through. But that is very fast. They gave me pain meds and it didn't hurt at all during the procedure - just the lidocaine part and the pressure.

The pain wasn't near as much as I feared. The most painful part was the tech putting pressure on my neck to close the wound. Because of the bike part, I got to wear shorts and let me tell you, hospital gowns are much easier to tolerate when you have shorts on! With the neck entry, you have to turn your head to the side the whole time, however, the procedure was only an hour and I got to leave in three hours. I couldn't do any exercise or lifting for several days. My neck was sore for a couple of days but even that has healed. You need a ride home - they don't want you driving for 24 hours.

I hope yours goes smooth and easy with good results.
Lynne

#8 Maddy07

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Posted 12 February 2009 - 07:44 PM

I had one and overall, the worst is the anticipation.

I had a right and left side done at the same time (two incisions instead of one). The numbing s hot to the incision site isn't that fun, but that sting goes away quickly. During the procedure they gave me some relaxing med but I was awake the entire time watching the monitor.

It was over quickly and at the hospital I was in (UNC at Chapel Hill, NC), there is not pressure bandage. There's a rather large nurse! She leaned directly on the incision site applying direct pressure for 20 min. And she timed it and didn't leave a second too soon. It was sort of painful but bearable. It's weird...like she's leaning on your leg and it sort of hurts but you're trying to just be cooperative and so you say "umm..so, uh...have you worked here long?" lol And the you kill time til it's over.

After she was done I had to stay flat for another 2.5 hours which of course was no big deal.

I hope it goes smoothly for you!
Maddy
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#9 barefut

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Posted 15 February 2009 - 06:28 AM

Hi Gals!

Thanks for sharing your experiences with me. You've made it a little less scary. If I can survive a bronchoscope and colonoscopy then I think I can survive a right heart cath - especially in the name of science.

I still haven't received the paperwork in the mail yet so I don't have details about the study but it has to do with pulmonary hypertension.

I just think about Lisa Bulman and all she went through when she volunteered for 'guinea pig' and I am inspired!

Thanks Lisa :)