PH and Heart Issues......

[Harrybaby666]

Hi gang,
I was wondering if anyone could tell me why in the world a doctor would try and discourage me from seeing a PH Specialist....I went to my PCP who at first thought it was an excellent idea for me to see a PH Specialist considering the fact that mine has never been evaluated to see how bad it is, and Thursday when I went for a followup visit, I took him the actual paperwork that says that I do have it, but he then seemed to be trying to distract me from going to see Dr. Wirth about it, because he said that "They can treat this no better than I can do right here" I insisted on seeing Dr. Wirth as I felt that since it's never been established as to how bad I have SPH that I should see him, and then my doctor then stated that I should contact my cardiologist to do the right heart cath to find this out, but I still prefer that the PH specialist do the actual right heart cath....

The other question is, does anyone know if the right heart cath would give any more insight as to how bad my valves are and if my heart has progressed any? It seems like I have been getting extremely more fatiqued lately, I get short of breath and start to have chest pain upon exhertion, and I have been getting dizzy (not that this doesn't come normal for me...LOL) more and more.

My PCP told me that the echo is not a very accurate way to tell about PH, and I am wondering if this is why he was discouraging me from seeing the PH Specialist, but I feel that if he is right about the echo being inaccurate, that this should be even more reason for me to see that Dr. Wirth as obviously there is at least something there....Once again, I am ever amazed at how lousy the medical field is in my area.....Thanks for the help in advance. Harrybaby

 

[bvdr]

Harry, what are the numbers on your echo report? Does it show a value for RVSP?

I'm not sure a PH doctor does heart caths but I guess it is possible. I think the PH doctor would more likely request a right heart cath in order to get the exact pressure measurements in your pulmonary artery.

I hate to hear that you are feeling so lousy and I hope things get better for you.

 

[Harrybaby666]

Mornin Betty....

Mornin Betty....

On the echo, the pressures were at 40 to 45, but that was a year ago this past August, and nothing has been done about it since. Harry

 

[Nancy]

Harry-

There are a couple of possible reasons, territoriality and insurance issues.

You really, really have to push to see a PH specialist. Most can order a right heart cath, but possibly you could also have a left heart cath at the same time, and then they would get a good idea about your heart, as well as the PH.

The echo is not very accurate regarding PH. That being said, Joe's recent echoes were pretty much in line with his right and left caths.

Don't be wishy-washy about getting the care that you need. State it emphatically, and if you are refused, ask if it is an insurance issue. Of course, you won't want to anger the doc regarding territoriality, but you can surely ask about insurance issues.

 

[Harrybaby666]

Morning Nancy...

Morning Nancy...

I am really pushing hard to see the specialist because I feel again, as I have said, that the medical field in my area is really lacking...they don't want to seem to put forth the effort to rule things out...it's like when a doc tells the other doc that I have a condition (PH), the other doc just says "big deal" and blows it off, and this is why I have put my foot down...Let me ask you this Nancy, do you feel as though a PH specialist can do better to treat PH than a regular Physician? Dr. Daneschvar, my PCP said to me on Thursday, that "The PH Specialist can do no more for your PH than I can"....and this bothered me because it was almost like he was taking offense at my wanting to see Dr. Wirth....Harrybaby

 

[bvdr]

On the echo, the pressures were at 40 to 45, but that was a year ago this past August, and nothing has been done about it since. Harry

I agree that you need some more current information. Do push for a cath (right and left) as that will be very helpful for the PH specialist and give you more information about your whole heart and vessels. Keep us informed OK? I hope it goes well for you.

 

[Harrybaby666]

Thanks Betty...

Thanks Betty...

I am just worried as I haven't been feeling too well lately and all I want to seem to do lately is sleep, putter around the apartment and sleep some more...I hope this Dr. can set things straight......Thanks again. Harry..

 

[jax3172]

Get the cath

Get the cath

Harry,

I've learned a little bit about PH and it is not a good thing. There are a few good web sites and a support group online. I'll try to get the web address Monday from work. I would recommend an echo, but get a cath to check that pulmonary artery pressure more precisely. There are incredible advancements in helping people live with PH (e.g., med pumps into a vein or artery). If that's what you have, then you may be able to get around without huffing and puffing with the help of meds. I don't know what a PH specialist is but see a good Pulmonologist. Be persistent. You'll be in my thoughts and prayers.

Jack

 

[Mary]

Harry,
A cardiologist would need to do the cath. My husband works with three PH docs, and they don't do them. Do you have a cardiologist you can see?

 

[Nancy]

Remember Harry that PH is an unusual condition. Not many doctors see any cases of it in their whole career. So how can they be expected to understand the finer points of this extremely complicated condition. Everyone used to think it was fatal, period.

But now there are many new treatments, some not so new, and many in clinical trials.

Joe's former cardiologist, who we thought understood about the disease, let Joe go along with it until it almost cost him his life. He KNEW that there was a specialist in the next city, and never told us. His assumption was that Joe had secondary PH, and his other assumption was that this specialist would not treat secondary PH.

He was wrong on it being secondary, he was also wrong that there was no treatment for Joe.

The specialist we went to did many tests that no one else had ever done, he not only specialized in PH, but was a cardiologist specializing in CHF, plus had a research company on the side.

He put Joe on Tracleer (a pill) which had just come out of clinical trials and was only available to those who specialize in PH. It saved Joe's life.

If he had stayed with his former card. he would be dead right now for probably several years.

Ask your doctor how many cases he's taken care of, and then ask what he uses for treatments. Write it all down. Then compare it with the treatments that you see on the PHA website. Then you will know if he's up on things, or talking through his hat.

 

[Barbara Stewart]

Pulmonary hypertension

Pulmonary hypertension

HarryBaby,
I have secondary hypertension from the botched MVP replacement I had in May. I just had a re-do surgery and the pressures are a bit better. I am hoping the PH will get better.
After I didn't get better from the first surgery and my breathing got worse I insisted on seeing a pulmonologist. He did a bunch of tests, listened to me and told me he could do nothing for me that it was a heart problem. I went back to my cardio and here I am now and that's got. Insist on seeing a pulmonologist. Even if he can't help you, he can help you in getting a diagnosis.
Remember it's your body and you need to take the lead. Frustrating, I know, but that's reality.
Good luck
Barbara
PS Keep us up to date.