heart cath scheduled

[Debbrn]

Last April I went to Boston for a second opinion and had a cardiac work-up. Dr. Valente from Boston spoke with my local "ACHD" after the evaluation. When I went to my local doc last November he completely dismissed everything the doc found out in Boston. "He didn't learn anything new." He completely dismissed me when I told him that I could not do what I did last year. He is also still talking about waiting do to my next PVR until he can do it in the cath lab. He did not know how long it would be.

My tissue pulmonary valve is 17 years old with moderate regurgitation. (30% regurgitation according to the MRI last April in Boston.) My right ventricle is 1.8X the size of my left ventricle according to the same MRI.

I called up Dr. Valente and told her that I wanted her to be captain of my medical team. She wants to do cardiac MRI, stress test, V/Q scan and heart cath next April. Everything is all set up for the end of April. I am also seeing the surgeon to talk about what the options will be when it is time for surgery. I have a feeling that surgery will be this year or next. All I need to do is get plane tickets and hotel reservations.

One thing that surprised me is that they plan on having me spend the night in the hospital after the heart cath. I did not think that they did that any more.

I have also been trying to go part time, but my boss says that there is no way that he can do that now. He was able to help 2 other people without a problem. It looks like I may be looking for another job.

Debbie

 

[Phyllis]

Congratulations, Debbie. It sounds like you are actively pursuing the best medical care you can get. I wish you luck with your workup in April. Please keep us informed as to the outcome. Best wishes to you.

 

[Debbie]

debbrn

debbrn

Dear Debbie, I'm so glad you posted, I haven't heard from you for awhile. I had my pulmonary valve replacement 3 weeks ago. Everything went well and so far my recovery is going as expected, slow but thankfully no complications. I decided to go with a ACHA doc. and hospital and was very happy with all involved. I spent the night in the hospital after my cath and then had the surgery the next day. I spent a total of 6 full days in the hospital. Wanted to tell you I talked to my surgeon about future replacement of the tissue valve that I got and he said he was sure he would be doing the 2nd replacements percutaneous within 5 years or so. Did'nt sound like their doing them yet here(in USA) but will be soon. I'm so glad this will be my last BIG surgery. Let me know how soon your surgeon thinks he will be doing these new replacements, like I said mine said about 5 years. Keep in touch, us very few pulmonary valve people need to stick together. Debbie

 

[brd]

overnight after cath

overnight after cath

Hi Debbie, I will be having my AVR sometime soon and my surgeon at MGH in Boston also has people have the cath the day before and stay overnight for surgery in the AM.

My best to you.

Barbara

 

[Susan BAV]

Hi Debbie -

Personally, I balk at stress tests now. It's only my opinion and based on personal experience; but my issue was primarily aortic, not pulmonary, so I don't know if that makes a difference. Maybe the other Debbie or Lynlw can weigh in on their knowledge of/experience with that?

I empathize with you about your local doctor's dismissal; that can be very frustrating. I saw some of that also and wondered how much of it was related to pride.

My last cath was between four and five years ago and they had me spend the night. It may depend on whether or not they want to put a plug in your femoral or just have you lay with a weight for many hours following the cath; I was told they can't use a plug if they're going to do surgery right away. My valve replacement was just a little over a week after the cath was done.

And I'm sorry to read about the job issue; hope that improves. Take care.

 

[Superbob]

Sounds like you've got a great medical captain and plans are proceeding well, Debbie. Congratulations. Hope all goes well for you.

 

[Debbrn]

Thanks everyone for your reply.

The stress test helps with 2 things. One thing I think they may be looking at is signs of an old heart attack. I had area of muscle noted on my MRI last april that indicated an area of my left ventricle was not working. Possibly suggesting a minor heart attack in the past. My EKG is already complicated by right axis deviation from the TOF and right bundle branch block from my previous surgeries. I also have prolonged QRS from right ventricle dilation. I don't know if changes from a heart attack could even be seen in my regular EKG. I will have to ask. Exercise tests are used in adult TOF patients to help decide when a PVR is indicated. Exercise intolerance is one of the pieces of the puzzle for PVR timing.

They are already doing PVR in the cath lab in Boston on a research basis. According to Dr. Valente, I am probably not be a candidate for PVR in cath lab because my tricuspid valve will most likely need to be repaired again. It is also leaking again. They may also work on my left pulmonary artery. I don't it though. I think my left pulmonary artery is as good as it is going to get.

My cath will be at Children's, but I will spend the night at Brigham's.

I better not need surgery right away. I have to work the next monday. (HAHAHA)

Debbie