Jump to content


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


Photo

doctors, doctors, doctors


  • Please log in to reply
4 replies to this topic

#1 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 14 January 2010 - 12:47 PM

I went to my scleroderma specialist last week and had good news! After five years my skin is almost back to normal. It was very hard all over so that has really been a change. I gave her many reports including a stress test that was done in Oct. that was abnormal. I have had trouble breathing and my CT scans, PFT's and chest X-rays haven't changed in a year so she suggested I see a cardiologist. I knew that was in my future. Made an appointment and saw him this week. After going over everything he said I need a cardiac catheterization. He said I can't get a kidney with an abnormal test. It will be scheduled in the next couple of days in a hospital near me that is known for it's heart department but is unfamiliar to me.

In the meanwhile, today I received another call for a kidney. It was from a 60 year old with a 25 year history of high blood pressure and died from a stroke so I turned it down. Too many things going on right now. I had living donors in their 50's who were told they weren't candidates because of high blood pressure.

Has your heart been affected by scleroderma? I am curious.

miocean
ISN Artist

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 14 January 2010 - 01:07 PM

Hello Miocean

Well done on the skin improvements but sorry about the heart involvement.

I have heart involvement in the form of left ventricular bundle branch block and left ventricular diastolic dysfunction which were picked up on an ECHO. I then had an ECG and am due to have a 24 hour holter test, it was initially going to be a MRI but being claustrophobic there's no way I'd get in the scanner! I don't yet know how significant any of this is from a function point of view so it's a case of wait and see. recently found out that the rheumatologist wants to rule out pulmonary hypertension and myocardial fibrosis but again I don't know if they specifically suspect these in me or if they just rule them out in general. Again it's just wait and see...

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)

#3 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 14 January 2010 - 09:55 PM

Hello Miocean ,

I am sorry to hear that you are having more issues with your problems. It is SO frustrating isn't it?

I was recently told that I have PH and today I went to my first appointment with a new Cardiologist. I had hopes of coming home with some sort of idea of how we can improve things for me BUT as so often the case I have only more questions and maybes.

I have known for a few years that I have Mitral Valve damage from probable Rheumatic Fever when I was a child, and my latest 2DEcho confirmed that the Mitral Stenosis is now in the moderate range. I had not even considered the possibility that Mitral Stenosis could cause PH, but apparently it does. So now I don't know whether my PH is due to Interstitial Lung Disease, narrowing of the blood vessels or the Mitral Stenosis. Nothing ever seems to be simple with me. If the PH is due to the Mitral Stenosis and it can be repaired then I am back to a 40% chance of PH from my Scleroderma. That would be a better outcome than I had expected.

Just as well I did not heed my Gastro man's advice to forget about it! He and the Cardiologist work in the same hospital and know each other so I suggested the message should be passed on politely that he should not give that sort of advice. Not to Sclerodermians anyway.

So now I am at the stage of being told that we have to add another Specialist to my 'team'
in the shape of a Respiratory Specialist. On the one hand I am being told that too many Specialists confuse the issue and on the other that I have to add more! I have to wait until Monday for the Rheumatologist to return from his summer break to make an appointment, then he and the Cardio. have to confer, then we have to decide on a Respiratory Dr. then heaven knows when we will reach any sort of conclusion.

In the meantime my head is full of what ifs and maybe this or that and I find it hard to get on with other things. I do wish that we had at least one all encompassing Sclero Specialist in this country.

Anyway, enough of my problems, I hope you find a way through yours.

Best wishes

Judy T

#4 janey

janey

    Platinum Member

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

Posted 15 January 2010 - 05:54 AM

MiOcean,
Congratulations on your skin softening! That's marvelous, and from everything I read, a good sign.

I have heart involvement. In January 2005, I was diagnosed with complete heart block which means that the electrical signal to beat the heart doesn't leave home plate. I had to get a pacemaker that beats my hearts 100% of the time. Eight months later I developed Atrial fibrillation. It was intermittent for years, but has been chronic for over a year now. My next pacemaker (they only last 7 to 10 years) will have a defibrillator added to it. So for me, my involvement is mainly the electrical system. The heart muscle itself is strong, but, like millions of others, I have some valve leakage.

Good luck on your cardiac catherization. Is it being performed to check your pulmonary artery pressure or for another reason? It's pretty easy, just inconvenient.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Sharon T

Sharon T

    Senior Bronze Member

  • Members
  • PipPipPip
  • 51 posts
  • Location:Thousand Oaks, CA

Posted 15 January 2010 - 10:20 AM

Hi, miocean~

I too have pulmonary hypertension but only when exercising, and this was diagnosed by a right heart catheterization. Its an easy test, sort of like an angiogram, but instead of inserting the catheter through the femoral vein, they used the jugular vein in my test. My PH is related to pulmonary fibrosis and/or scleroderma (probably the latter as the fibrosis is considered secondary to the sclero). Right now I'm taking ambrisentan (or I was until my liver enzymes became elevated). I've been told the PH is very treatable. Now we just have to confirm that the liver issues are only coming from the ambrisentan and are not something else sclero related. Its just one more fun thing after another! :rolleyes:
Sharon T.