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I Cancelled A Left Heart Catherization

Lung Transplant Screening

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#1 miocean

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Posted 05 August 2013 - 04:50 PM

Today I called and cancelled a left heart catherization that was scheduled 3 days from now at the lung transplant center. I have never cancelled any test in the past but I feel I was justified in doing so. My reasons are:

 

1. At the initial consult the transplant doctor said both a right heart and left heart catherization would probably be repeated. I see the pulmonary hypertension specialist next week and did not want to go through two different catherizations if it was determined I needed a right heart cath as well.

 

2. I called my nephrologist and asked if there were any special things I would need to know about the left heart cath in regards to my transplanted kidney. He said IV fluids would need to be administered before and after to make sure the dye left my system quickly. Although he made repeated calls to the transplant doctor, he was unsuccessful in reaching him. I do not want to risk any possible damage to the kidney.

 

3. There was no appointment to meet with a cardiologist prior to the procedure. I have had 3 heart catherizations previously (two for evaluation for the kidney transplant) and each one was after meeting with a cardiologist. Besides protecting the kidney transplant I have other issues I would like to discuss before the procedure. I would like them to know my medical history, what would be done if a blockage was found, make them aware that I have convulsive syncope and could have a seizure under extreme duress, and know how the closure would be made. 

 

I emphasized that I am still open to having the procedure, but want more information/answers before I have it since it is invasive and involves dye. I spoke to the scheduler who said she would inform the transplant doctor.

 

In two days I go in for an echo that is done under exercise. I am also supposed to have a carotid artery sonogram and a 6 minute walk test before seeing the PH specialist but these are not scheduled yet. 

 

I know I made the right decision but am slightly concerned the transplant center may view me as "non-compliant."

 

miocean


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#2 Shelley Ensz

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Posted 05 August 2013 - 08:07 PM

Hi Miocean,

 

It sounds to me like you have very valid reasons for putting this test on hold, so I really don't think they will see you as non-compliant. You aren't refusing to have the test, you are just requesting that it be done properly, and in a way protective of your previous transplant.

 

I say, two thumbs up for you, for researching and knowing what is necessary for your health, and for having the courage to stand up for it, too!  They will certainly want you to protect your new lung with the same tenacity.

 

Now, if you just flatly refused to ever have the heart cath, then you would land in the non-compliant category.  But in my humble opinion, you can rest calm and easy that you have done the right thing, all the way around.

 

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Shelley Ensz
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#3 Joelf

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Posted 06 August 2013 - 10:47 PM

Hi Miocean,

 

I think the fact that you've emphasised that you would be open to having the procedure, but at a later date when you've got more information, means that they really shouldn't think that you're being non-compliant and they must realise that as you've already been through one transplant, you're naturally protective of your kidney.

 

I agree with Shelley; it sounds as if you've made the right decision, at this point.

 

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#4 miocean

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Posted 07 August 2013 - 04:43 PM

The transplant coordinator called today and said she just got the email that I had canceled the heart cath. When I explained why she understood, wants to be updated after I see the pulmonary hypertension specialist next week as to if what heart caths are needed, assured me that all precautions would be taken to protect my kidney, and suggested I see a cardiologist after all the tests for interpretation. I expressed my concern about the convulsive syncope and she said  she would make sure it was brought to their attention at the time of the catheterizations.

 

I also told her I started pulmonary rehabilitation and had most of the paperwork they requested from my other doctors almost complete to send in a packet. She thought all was well so all is good.

 

So we are moving on. Thanks for the reassurance.

 

miocean


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#5 Shelley Ensz

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Posted 08 August 2013 - 09:39 AM

Hi Miocean,

 

I'm very happy to hear that they're not going to hold this against you.

 

Is there anything they can do to help prepare for -- or better yet, avoid -- convulsive syncope? 

 

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Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.