Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

PAH


  • Please log in to reply
14 replies to this topic

#1 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 15 May 2007 - 11:39 AM

Well I just went to the heart doctor and he said its possible that I have mild PAH and to schedule a right heart cath. I have ILD and he said that doctors are finding that PAH and Lung Disease can run together. Has anyone had a right heart cath? What should I expect?

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#2 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 15 May 2007 - 12:03 PM

PeanutHead,
Oh no. I am sorry to hear this news. Did you have an echo first? Or does the Dr. think you may have PAH from your symptoms?

I have had the right heart catheter. I was scared but it ended up being easy. It is not a simple procedure, but it is short and I felt fine after. TIred of course, but fine.

I have to get echos annually. My PAH specialist recommends I get the echo first then if that shows possible PAH, I get a catheter.

Please don't worry too much. My Dr. told me the same thing and I ended up being just fine, relatively speaking.

Sorry sweetie.
Jen

#3 peanut

peanut

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 15 May 2007 - 12:31 PM

Sombrero Jen,
Hey! I had an echo which turned out "excellent" but my heart doctor said that sometimes you can have PAH and a perfectly fine echo. So he thinks I may have PAH from my symptoms.

It's kinda strange but I'm not so nervous about these appointments and tests. I've had so many and people act like its quite routine these days. Strange.

Thanks Jen! I know I'll be fine because I have a great support group here!

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 susie54

susie54

    Silver Member

  • Members
  • PipPipPipPip
  • 259 posts

Posted 15 May 2007 - 12:48 PM

Hi peanut,

So sorry to hear that but it sounds as though he is not sure. Did you have an echo? When I had that horrible flareup last holiday, I had symptoms of pulmonary hypertension so they did an echo and it showed borderline so they decided since the symptoms disappeared to not pursue the right heart catherization. MY RVSP was 28-32. Showed tricupsid regurgitation and mild mitral something or other.
Susie54

#5 Patty

Patty

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 15 May 2007 - 01:38 PM

hey Peanut,
I am sorry to hear your news also. Like Jen I had this done and was nervous but the test itself was easy on me. I had both sides done and the finding was that I have stiff left side so I suggest that you see about having both sides done. Had my dr not checked the left side who knows how we would have fopund out and started treatment on it.

I think the worst part of the test was laying flat afterwards. I had to pee and ended up having a foley cath done because I could not get up.

Let us know what happenes with this.I will be thinking of you.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,893 posts

Posted 15 May 2007 - 01:38 PM

Hey Peanut,

I'm really sorry to hear you may have PAH and need a heart cath. Here is a link about PH and treatment.

Please keep us posted!


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 peanut

peanut

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 15 May 2007 - 03:37 PM

Thanks everyone. I read that you have to lay flat after? How long? And where do they put the cath in? Is the incision big?

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 janey

janey

    Platinum Member

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

Posted 15 May 2007 - 05:41 PM

Peanut,
I didn't have a right heart cath, but I did have a right atrium ablation recently. The procedures are very similar where a catheter (or long tube) is inserted into a vein in the groin or the neck. (For the ablation the doctor used 3 tubes) I think most doctors use the groin, but I may be wrong. The tube is run through the vein, through the heart to the pulmonary artery where the PA pressure is measured. During the procedure, you will be under an x-ray machine so the doctor can watch what he's doing. My doctor had the monitor set up to where I could see what was happening as well. It was pretty cool. I didn't feel a thing with the catheter going in or coming out. I had an IV pain killer, so no pain. Afterwards you do have to lay flat and very still because the opening at the groin has to start its healing process. I think they had me lay flat for 3 hours, then over the next 2 hours, slowly started to tilt the bed. No stitches, just tape. By the time I took the tape off 2 days later, the incisions were healed. Good ole collagen producers we are!

I'm sorry you have to go through this procedure, but it will provide the best measurement of your PA pressure. You'll do just fine! For me it was actually a very restful day. All I had to do was lay around in bed all day.

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

#9 peanut

peanut

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 15 May 2007 - 05:51 PM

Janey,
Thanks for the great info. For the three hours after were you in the hospital? How long were you there? They told me it would be a 20 min outpatient procedure.

peanut.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#10 janey

janey

    Platinum Member

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

Posted 16 May 2007 - 03:48 AM

Peanut,
I was in the hospital the whole time. Your procedure might take 20 minutes, but they're not going to let you go until they know that the incision (which is small) has started to close. Your time might be shorter than mine because I had 3 incisions for the ablation. I did see a video on a right heart cath when they were considering it for me and it did state that you remain in recovery for several hours afterwards in order for the incision to close. So I would mark off the whole day.

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)

#11 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 16 May 2007 - 05:45 AM

Peanutheadness,
I do not remember having to lie down for 3 hours....did I miss something?
Seriously, I did not have to.
Jenhead

#12 Patty

Patty

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 306 posts
  • Location:N.W. Connecticut

Posted 16 May 2007 - 08:14 AM

Peanut,

When I had mine it was in the groin area and the Dr used an angioseal to help it close. I had to lay flat for like 2-3 hours. I was fed lunch and learned how to eat laying down lol. Really it was one the the easiest tests I have had so far and let me tell you I have had many! You just need to relax for the day and no lifting for a couple days I think I was told.

Do you have a date for this set yet?

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#13 peanut

peanut

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 16 May 2007 - 09:58 AM

Patty,
Thanks for sharing your experience. I've had so many tests in the last 9 months that I'm no longer nervous or scared. It's like I'm almost jaded.

Oooo lunch. How nice. I like tests where I go in, sleep, wake up, rest and eat. All tests would be better with yummy treats.

It will be in a few weeks. They have to preauthorize it with my insurance.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#14 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 16 May 2007 - 11:02 AM

I've had right heart cath done twice. The worse part is the injection of the anesthetic, which is just a slight sting. They make a small slit to slide the cath in (for me, they went in through the groin), all of which is painless. After bandaging, I was able to walk out. Not a big deal. I wouldn't worry. I'm getting another in 4 months, and it doesn't worry me!

Best of luck,

Craig

#15 peanut

peanut

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 16 May 2007 - 11:47 AM

Thanks Craig. Anesthesia is annoying and stingy especially with tight skin. The skin is so tight on my left arm they can’t even stick it. They tried once and it left a huge bruise. Hopefully the sleeping meds kick in fast.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...