Clementine

Right Heart Catheters

10 posts in this topic

Hello,

Well, it's that time of the year again and my pulmonologist (PH DR) says it is time for another right heart catheter. I have had an echo in the past that showed possible ph so we did the catheter, which confirmed that I did NOT have it. I am wondering if it would be better to just have another echo. I do not have sympoms of PH. I know there are some risks involved with catheters, although it's unlikely, but I don't want to keep having them annually either.

Any advice or opinions?

Thanks,

Jennifer

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Hi Jen,

 

I don't have PH, so I don't have personal experience, however if I were in your shoes and the doctor was recommending this, I would be inclined to adhere to it. Have you asked them if an echo would suffice?


Your Friend,

 

Gi Gi

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Hi, Jen!

 

I feel just the opposite from Gi Gi! If my doctor was recommending it, for no apparent reason, and I had no symptoms of PH, I would certainly want him/her to explain the reasons for it.

 

All procedures do carry a certain amount of risk and I just don't want unnecessary testing done. So, at the very least, I'd want a very good explanation. My own doctor certainly has never recommended any such test for me! And, why on earth would she? I have no symptoms to warrant it.

 

You might ask your doctor, if it turned out you had PH, but with no symptoms, what would be done about it? Would you need to take medicines for it, or what? If he plans to do nothing, unless you have symptoms, then what would be the point of the test?

 

 

 

Mary in Texas

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Hey Jen!!

 

I had to have one done and the Dr did both sides and found my Diastolic Dysfunction, so I say to have it done and talk to the Dr about doing both sides.( thats how my DD was found, its left side) Now I know that I have a heart that's getting stiff and we know how to treat it .. the sooner we start treatment the better. Again this is JMHO Let me know what you decide to do.

 

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.

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Hi Jen,

 

I would definitely ask your doctor for an explanation. When I saw my GI doctor a week ago, we discussed that I was having more motility issues and he suggested doing another manometry test or barium swallow. I hated having both of those tests done and so I point-blank asked him "why?". I asked him what we would do even if the tests showed motility issues. I explained that I felt like I had gotten to the point where I could handle the motility problems, that it wasn't really impacting my daily functioning and I didn't really want to add any more medications to my regime if I didn't have to. I was shocked, but he actually agreed with me and said, "Yeah, there really weren't any good treatments for it and he didn't want to start me on anything else unless it was a lot worse". So, anyway, at the very least, I would recommend having a dialogue about it with your doctor. Please do let us know what you decide and how it turns out.

 

Warm wishes,

Heidi

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Jennifer,

All my doctors have always told me that the ECHO is an "estimate" of the PA pressure and that there was a lot of discrepancy between technicians and machines. It was explained to me that the only true way to diagnose PH is by a right heart catheter. With all that said, my pulmonary doctor still diagnosed me with PH after an ECHO came back with a 45 PA pressure. I was put on Tracleer and after 4 months, it's now at 25 (based on the ECHO). I still have never had a right heart catheter. So on my next visit, I'm going to talk about coming off Tracleer.

 

I agree that you should discuss this further with your doctor. This is an invasive test so unless it's absolutely necessary - making it a yearly test seems a little extreme. Personally, I would request an ECHO and if it's borderline than go with the heart catheter. Do you have symptoms of PH?

 

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)

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Hi Jenifer,

 

I would hesitate to treat PH without a conclusive right heart catheter test. My doctor said it is the only conclusive test to really know if you have PH. I had borderline PH this last echo but since symptoms subsided and everything has calmed down, I have decided and the doctor to wait on right heart catheter test . If they come back < and echo shows RVSP is going up , then I would go ahead with it. You hate to be treated for something that isn't there. We get treated enough. I hope you can come to the right decision for you. Susie54

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Hi Jennifer,

I had an echo done about a month or so. I am borderline PH. My dr said the only way to get a true pressure is through a cath. He said we will wait until I show more symptoms or it becomes problematic. I would talk to your dr again. It is not like it is an ultrasound or a catscan it is invasive. I hope you come to a decision that is right for you. Please let us know what is decided.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

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(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Thanks all. I think I will go for the ultrasound. If I were having shortness of breath, etc. I'd definitley want it. If my doctors are adamant that I have the catheter then I will listen to them though.

I agree...the thought of a catheter running through my neck is a bit creepy.

Jennifer

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Jen,

 

I had my cath done through my groin area, not my neck. Did the Dr say it would be through the neck? I do not think that I would like it thought the neck myself BUT if it was to help me live better then I would I think..

 

Hugs and good luck!

 

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.

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