Jump to content


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


Photo

Pulmonary Hypertension


  • Please log in to reply
7 replies to this topic

#1 LoriAnn

LoriAnn

    Bronze Member

  • Members
  • PipPip
  • 18 posts
  • Location:South Dakota

Posted 06 December 2009 - 04:17 AM

Hi, I haven't been on for sometime. In July I had my yearly echo and PFT. My PFT was normal but my echo came back showing mild hypertension #'s between 35 and 40 (don't know what that means). My rheumatologist and I discussed and he advised my to wait another 6 months and redo the echo. Normally, my regular blood pressure is very low 90/60. In the last month my normal blood pressure has been around 130/70 which is very high for me. Reading info re: Pulmonary Hypertension has been very frightening and stressful. I have put on about 20 lbs since July (stress related). I have Crest Sclero, Raynauds and Lichens Sclerosis. Dec. 14th I have my follow up echo and just have some questions to ask anyone with Pulm. Hypertension.

I know stress effects your normal blood pressure, but does it effect your Pulmonary Hypertension pressure which I understand is different from your normal blood pressure?
I have a heavy feeling in my chest and have developed a dry cough is this part of PH?
Is your normal blood pressure higher if you have PH?

If anyone has any advice or questions you think I should ask, I would appreciate your input.

Thanks

Lori Ann
Lori Ann

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 06 December 2009 - 05:25 AM

Hi LoriAnn,

Welcome back to the Forum! I'm sorry you are having a stressful time. Reading the literature on pulmonary hypertension (PH) will certainly cause stress. Posted Image

I have both pulmonary fibrosis and pulmonary hypertension - they were already present when I was diagnosed 3 years ago. Maybe my experience will be reassuring to you.

First of all, let's talk about the echocardiogram. Although useful as a screening tool, a right heart catheterization (RHC) is still the gold standard for diagnosis because it measure the pressure directly. The numbers seen with an echocardiogram can differ quite significantly from what is measured during a RHC. For instance, my echocardiogram during my initial workup indicated moderate to severe PH, but the right heart catheterization showed only mild PH. I am being treated with ambrisenten and it keeps my echocardiogram numbers in the normal range. I have a repeat echo once a year, plus a visit with a PH specialist.

Now, as far as your increased blood pressure goes, well, I'm no doctor (I'm not even qualified to read a medical text book) but I wonder if your levels of stress aren't increasing your BP? I know when I get stressed, my BP definitely goes up!

It is my understanding that there can be a correlation between pulmonary arterial pressures and general blood pressure, but not necessarily a direct one. For instance, my BP runs about 114/70, which is great, but the good people at the PH Clinic aren't happy if I admit to using decongestant nose sprays because they can raise BP.

Heavy feeling in your chest and dry cough? Once again, your doctor is the best person to ask, but I'd wonder if the heavy feeling in your chest is stress-related, although I think that angina pectoris (severe chest pain) is one of the symptoms of PH. The dry cough is definitely one of the symptoms and the one that was bad enough that I went for an evaluation at a center of excellence for lung problems.

I think if your next echo is still showing pulmonary hypertension in December, I would ask to be referred to a PH specialist if I were you. All the literature and my own experience shows that early diagnosis and treatment seems to produce the best outcome. I think my other advice would be to try and reduce your stress levels. We've got some good info on Anxiety. I'd also consider talking to my doctor about maybe taking some mild anti-anxiety medication (better living through modern chemistry, as my daughter says.) I find exercise helpful in reducing my stress levels and the doctors I see are all in favor of exercise too. Improving your over-all health as much as possible will improve your prognosis in general.

Lori, I'm really sorry you have been frightened by the literature. Unfortunately, since most articles are about finding ways to treat or deal with a potentially very serious illness, we don't get to see all the success stories. There are some very effective new medications available, plus an ever-increasing understanding of pulmonary hypertension. Keep posting and we'll be anxious to hear the results of your follow-up.

Best wishes,

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

#3 CraigR

CraigR

    Senior Silver Member

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

Posted 06 December 2009 - 11:52 AM

We had one of the top PH doctors in the country speak at our support group.  Some of the things that you might find useful:

Think of your heart as two pumps.  The big, strong one is on the left, and pumps blood to your body.  This is the pressure that is measured when the cuff is put around your arm.  Thus, what they call your "blood pressure" would more correctly be termed the pressure of the left pump, which pumps out to the body.

The pump on the right is much smaller and weaker and pumps to the lungs only, to get the oxygen that is later pumped to the body (by the left side of the heart).  Since it is so much smaller and weaker, the normal pressure is much lower, like about 30/10.  If it were 90/60 (low for the left pump), you would be very ill with very severe PH.
Since it is not possible to put a cuff around your lungs to measure the pressure, this must be done through an echocardiogram (not very reliable or exact) or a right heart catheterization (more invasive, but much more reliable and accurate).

(It was interesting to note that this specialist said that he deals with many doctors who are completely ignorant of the fact that the right side of the heart is a much smaller, weaker pump).

The biggest threat from PH is heart failure on the right side due to the high pressure (much the same as left-side high pressure can lead to heart failure from overworking the heart).

As far as the question of stress affecting PH, you can see that it would be difficult to tell, since you can't easily and quickly check it, as you could with left-heart blood pressure (what is usually termed "blood pressure").

A suggestion: when you get a PFT be sure to check the "diffusion".  This tells how much of the oxygen is being absorbed by your lungs.  In my case, all the other figures were very high (the tests for ability to move volumes of air), but the diffusion was low.  This took a specialist to figure out.  I later found out that lowered ability to absorb oxygen tends to lead to lungs that move more air, especially among those who get a lot of exercise.

I strongly agree with the other replier who recommends a PH specialist.  Preferably, a center that is known for this work is best.  Some of the medications can be very expensive, so there may be the ubiquitous fight with your insurance...  It's much harder for them to say no when the prescription is coming from one of the top doctors on the subject.

As a PH patient, I have had times of severe PH, but there was never any pain or coughing.  My only symptom was extreme shortness of breath (so much so that simply walking across a room would require that I sit and spend quite a while getting my breath.  But these diseases can affect us all so differently.

Good Luck,

Craig

#4 susieq40

susieq40

    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 07 December 2009 - 07:56 AM

Wow Craig!! That was the best description of pulmonary hypertension (PH) I've heard so far! Even my doctor didn't explain it that good!

I'd definitely get the right heart catheter, I did and that's how I found out I had PH. Still working on the right medications to help.

Good luck and best wishes,

SusieQ40

#5 Sharon T

Sharon T

    Senior Bronze Member

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

Posted 07 December 2009 - 09:54 AM

Hi, LoriAnn,

I was just recently diagnosed with PH, after having a right heart catheterization. My echocardiagrams were uncertain as to pulmonary artery pressure, but I also was showing higher regular blood pressure than ever before. I don't think the two are related, but the regular blood pressure increase may be the result of the heart having to work harder to pump blood through a pulmonary artery that has been narrowed by sclerosis (which is what has happened in my case). I also have pulmonary fibrosis, and have been told that a dry unproductive cough is a very distinctive and common symptom of that condition. In my case, the doctors think that the pulmonary fibrosis is the contributing cause of the PH, along with the narrowing of the pulmonary artery.

I didn't know any of this until I finally was able to connect with scleroderma and pulmonary specialists at UCLA. Although my local pulmonologist caught the pulmonary fibrosis, he did not recognize the underlying scleroderma nor the PH. I think with this disease, because it is relatively rare, you really need to be treated by a specialist in the field. It has certainly been a relief to me to find out what is going on with my body, and to have some idea of what to expect. It is also very reassuring to discuss this condition with someone who really knows the subject, and not to have to depend on the often very scary information that is available on the internet. As Jeannie said, there are a lot of good medications out there for controlling PH and pulmonary fibrosis, although nothing that will cure these conditions yet. This forum is of course the other really reassuring information source - between my doctors and the folks here, I'm now much more confident that I'll be around long enough to see my grandkids, and even have the ability to pick them up!
Sharon T.

#6 alice1

alice1

    Senior Bronze Member

  • Members
  • PipPipPip
  • 47 posts
  • Location:North Caroline

Posted 07 December 2009 - 11:49 AM

Thanks all...I have learned a lot from this session. Alice

#7 LoriAnn

LoriAnn

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts
  • Location:South Dakota

Posted 08 December 2009 - 12:12 AM

Just want to say Thank you!!! for your replies. This information really helped. Craig that was a great explanation of PH. Wish I could come and join your support group. I will let you know how my echo goes on Monday.

Thank you again
Lori Ann

#8 LoriAnn

LoriAnn

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 18 posts
  • Location:South Dakota

Posted 31 December 2009 - 04:59 AM

Hi, Just wanted to let you know that I had my follow up Echo and it came back the same. My number was 42, so my rheumatologist is going to send me to a pulmonologist who specializes in pulmonary hypertension (PH).

Anyone have any advice on what I should ask? Also, my bloodwork shows that the disease may be attacking my muscles now. I don't know what that means? Any information is appreciated.

Thanks,
Lori Ann