venting...

[HGuillette]

Alright, I'm ticked.

I went for my annual visit to the cardio yesterday and was all ready to discuss valve replacement. (I have corrected TOF with pulmonic regurgitation) ... well, last year when I saw him, he was surprised that I wasn't showing any symptoms when he saw the results of the echo. He told me to pay attention to how I was feeling and to get used to the idea of impending PVR ...

So I've been lurking here for a while and thanks to you all, I'm ready to get this taken care of. I've known all of my life that this would have to be done and am actually 10 years past when the pediatric cardiologists would have predicted. I went to the local medical library and read up on the latest research (which says to replace PV early -- don't wait for right-heart failure!)

I've been feeling very fatigued lately ... with dizzy spells and frequent PVCs. I made a list of all of my symptoms and was prepared to go in there and get the ball rolling. BUT! He looks at this year's echo, says it hasn't deteriorated much since last year, and that "fatigue is subjective" ... and that maybe PVR isn't indicated.

Well, I argued with him on that point, reminded him that a year ago he told me that it was coming soon, and pulled out the journal article that backed me up. He backpedaled and put me on an event monitor for the PVCs, and I'm scheduled for an MRI/MRA tomorrow to find out how distended my pulmonary artery is.

Let me just say that I really do like and trust my cardio; I think he was just having a bad day (the appointment before me was a bubble test gone bad; I had to wait 2 hours to get into the echo room) and by the time he got to me he wasn't really focused. After I made my case somewhat he came around ...

I guess I'm just mad because I felt "blown off" at first ... you know, the doctors always tell you that you'll know when something isn't right and then when you tell them that something isn't right they tell you it's all in your head!

Well, sorry for the long complaint ... I guess I just needed to blow off some steam, and you folks are always so supportive and understanding.

Have a great day ...
Heather

 

[RobThatsMe]

Hi Heather,

Wow... that was some doctors's visit! Just goes to show us all that the better informed we are about our condition, the more in control we are at the doctors's office.

So glad to hear that you were " Well Armed" with your particulars when you visited your doctor. Just imagine if you wern't, and complications or issues arose that could have been preventable!

Wishing you good luck and health,

Rob

 

[Bill Hall]

Heather - I couldn't agree with you more. I think those doctors don't give enough individual attention when they get busy. Congratulations on standing up to him and being prepared. You really should be very happy with yourself. I hope you keep up the pressure to get the correct answer for your condition. I had my surgery even though there were no changes in echo or testing. I was above the threshold for surgery for a long time with no symptoms.

 

[Nancy]

My own opinion is that there is a hidden risk/benefit ratio inside most doctors heads which they don't wish to communicate to the patient because it sounds so cold and there might also be insurance issues which are never discussed.

These two things might be the cause of a lot of foot dragging in trying to get to the surgical suite, and the cause of a lot of conversations that go like,"I don't know what you're talking about, let's do another echo in 6 months, that's a quality of life issue, etc., etc."

 

[Nan]

Hi Heather,

GOOD FOR YOU! It is not always easy to talk to your doctors, especially when they are not following through with something they have told you previously. And Nancy may well have a valid point, He may have been having a bad day, but in addition may be considering other factors he does not wish to share with you.

I'm sure it wasn't easy to come to your decision to go ahead with surgery in the first place, and then this visit. You hang in there and do the right thing and take care of yourself.

Best wishes,

Nan

 

[HGuillette]

Thanks!

Thanks!

Hey, thanks everybody for cheering me up. I knew I could count on you!

Anyway, I think that my Dr. really respected the fact that I came prepared and was willing to argue with him. He definitely treated me a lot differently after I pulled out the journal article (more big words, haha) ... and my next appointment, after the MRI/MRA, is going to be a dual-cardio appointment (he has another colleague that joins him during congenital clinic hours). So I'll be getting a built-in second opinion. Based on what the MRI/MRA shows, he says that the next step would be to send me for a catheterization and a TEE. (I guess it's a good thing that med tests don't bother me in the least)...

Nancy, you have hit the nail on the head when you said that he probably hesitated because of the risks that may be involved. I've already had 2 surgeries (one open, one closed-heart) and he is worried about the dangers of re-operation. Yes, those 2 surgeries were 29 and 25 years ago, but he says that the third will be difficult due to the built-up scar tissue. They also don't put mechanical valves in the pulmonic position (lower pressures = higher risk of clotting) so I'd be facing even more surgeries in the future to replace the porcine valve I'm likely to get. I'm aware of the risks, though, and to be honest I think that CHF is a much scarier possibility than multiple surgeries.

Another factor, I think, is that I was on 1-year follow-ups. Of course I remember what he said to me last year since it was so important to me ... but heck, *I* can't remember what I did at work last year even if it was critical at the time. (I work in IT, so everything's critical ... )

Thanks again everyone for your comments and support. It helps to be able to talk this over with friends!!!

Heather

 

[Nancy]

Hi Heather-

I thought I spotted the ole third surgery "tap dance". We just went through that with my husband. This last surgery was his third and we had similar reactions from his cardiologist who is very excellent, very brilliant and very conservative. He was worried that the third surgery would be too risky. He had a point, but Joe couldn't see living such a limited life. He's never scared anyway. He pushed the point also. I think this let the cardiologist off the hook a little, emotionally, he reluctantly agreed, but he would have preferred to handle Joe's symptoms medically. The only problem was that Joe's body just wasn't responding to medicines any more.

I also want to mention that scar tissue was absolutely a major issue in this third surgery. It was done through the side instead of through the sternum again, but Joe has also had lung surgeries so no matter where they cut there was scarring. Joe had also, in the meantime developed a sensitivity to Ancef which is one of the antibiotics they use regularly during thoracic surgery, and there was no way anyone could have known about it, because he never had any warning. This threw him into Serum Sickness after surgery and that was worse than the heart surgery. It put him back into the ICU for another week in precarious condition. So third and fourth surgeries are not without complications.

By the way, Joe has CHF and will probably for the rest of his life. He's on Lasix and we have to eat very, very low salt. But we can manage it and he's OK. Just thought you'd like to know that it is handleable, as long as your heart is otherwise functioning pretty well.

 

[Nan]

CHF

CHF

Hi Nancy, This is not quite the thread we were following, but I am really not quite sure of how this whole site works...still learning, although I was on it when it first started with just a mail list.

A question about Joe and his CHF. I know you mentioned it to me before and said you were very low salt etc. And I am doing the same thing as I have CHF due to the size 17 St. Jude aortic valve...but I have not been able to get any info about how long one can go on like this. It sounds to me that you feel Joe can and is doing well in this respect Is this based on your empirical knowledge at this point or has a doc told you somewhere along the line that it is possible to do OK. What is Joe's ejection fraction (if you/he don't mind) Mine has so far been 65% which is certainly excellent, but the left ventricle is somewhat thickened.

My docs all seem to think a second surgery is the only answer, and unlike many of these brave folks (you and Joe included)it is almost impossible for me, the scaredy cat, to contemplate.

Sorry to ramble on.

Nan

 

[Nancy]

Hi Nan-

I don't know what Joe's EF is, we never asked. All I know is that the cardiologist is mightily pleased with how the heart is functioning.

Regarding the CHF, I can only relate what I have gleaned from reading and reading and reading on the internet about it, and what I have observed with Joe's conditions. Each person is or course an individual and each person's condition has to be evaluated accordingly by medical personnel. CHF is controllable with medicines like diuretics and lowering the sodium content of the foods you eat, if your heart condition is not too bad. Prior to Joe's last surgery to repair a paravalvular leak in his mitral valve, his CHF was extreme and he would gain weight suddenly, say 3-5 pounds in a day. At that point he was put on extra Lasix, and if that didn't work, he was put on Zaroxolyn. With Zaroxolyn (which is a powerful diuretic) he had to be tested for kidney functioning. He at one point developed cellulitis in his lower legs and feet because his skin was stretched so thin from edema. He, of course had trouble breathing. He finally reached the point that even the Zaroxolyn wasn't working any more.

Surgery was the thing that was needed. The leak was very small and once that was repaired, his CHF became controllable with a regular dose of Lasix, plus the low sodium diet. If, by chance Joe does, say, go out to eat and gets too much sodium, and it causes problems with breathing, he calls his cardiologist and they up his Lasix briefly until it clears. He's only had to do this a couple of times since the surgery.

From everything I read and observed, a patient with CHF can live a fairly normal life with some restrictions for a long time, as long as the underlying problem is taken care of. You must be fairly comfortable with doing what you're doing for your CHF, I hope I'm reading this right. You would be able to tell if your breathing was being compromised and you couldn't do the things you would like to do.

If you see that it's becoming worse than it has been, why not get an appt. with the cardiologist and talk to him frankly about what can be done for your situation? Maybe the risks are not as bad as you think. Everyone's afraid, it's normal. Joe's not normal, I guess, he never was afraid, LOL , so don't go by him!

Wishing you the best.

 

[HGuillette]

Nancy, you are such a sweetheart!

Joe sounds like a real trooper. I can't believe what a go-getter he is after all he's been through. God bless him!

Anyway, I'm sure that he's managing with the CHF just fine. After all, he's got you to take such good care of him! And your positive mental attitudes have to make it that much easier. Personally, it's just not a stage that I want to get to, especially if there is another option (in my case, PVR).

My one big complaint, the one that started the thread, was that last year my cardio told me one thing and then this year he contradicted himself completely (and my heart didn't miraculously heal itself in that year). I've had plenty of doctors who were much, much worse - but I never expected it from him. He took my objections seriously, though, and I have to give him credit for that~!

Give Joe a big thumbs-up from me, and have a great night!

Heather

 

[Scottie]

hi Heather

hi Heather

Hey Heather ...I read your post with interest ......I know exactly how you feel ....the drs told me that my heart condition was not responsible for my fatigue ,palpations or dizziness ...so when I said I wasn't sure about surgery ..they said ..it will improve your quality of life ..you won't be so tired and pals and dizziness will go ....duh ?did I miss something I thought to myself ...the thing I hate is when they say as mine did that she could not measure my tiredness ..she made me feel like a fraud ....I hate that !
anyway so proud of you for sticking to your guns ..Well done ...I wish I could be that strong ....i must admit the drs here were concerned about my previous surgeries ...it will be interesting to hear what the surgeon says on the 24th .
keep in touch ...fellow TOF ...
good for you
Scottie

 

[Sunshine susan]

Hi! I was noticing that you are from Tampa, FL. Well, I live in St. Petersburg and go to the Heart & Vascular Clinic. Dr. Witt is my cardio--wonderful man!! On the same floor (4th of Bayfront Medical Center) is the surgeon who perfomed my surgery 3 years ago--AVR St. Judes mechanical. My surgeon was Dr. Quintesenza (spelling is close but he goes as "Dr. Q"). Very popular doctor. If you are not sure about your doctors, you could give these guys a try as a second opinion. Dr. Witt had said that I would definitely need the surgery "within 2 to 5 years most likely" when I saw him first. When I asked why would I want to wait if I know it is coming, he set me up for a cath and they determined it needed to be right away. Anyway, I was the "poster child" for this surgery--walking 1 mile by the end of the first week and 4 a day before I went back to work full time at weeks. Have't had even one sick day since (didn't before either!). Owe a lot of that to my own faith, attitude, but also the great doctors that I have. Anyway, good luck! Hey, aren't we having some great weather!!

 

[hensylee]

Heather - Sunshine . Lived in Arcadia for 20+ yrs. I miss that part of Florida. Love the cows and the groves. Now am in NW Fl panhandle where we have hills, pines, WINTER and beaches are about 30 mi away. Love it here, too. If you have not been to NW Fl, it is entirely different from the rest of Florida - like another country! And the pan part of Florida mostly has no idea what the handle is like - ya'll oughta come visit. Our part of Florida is the part that messed up the election results, at first, as TV said the polls were closed, but our time is an hour later than EST so we were still open and voting when they announced!! Nice to see ya - God bless

 

[HGuillette]

Susan - thanks for the info.

I see Dr. Fontanet at the Florida Cardiovascular Institute in Tampa. He specializes in adults with congenital heart disease (most regular cardios have no idea what to do with us). For the time being, I'm giving him the benefit of the doubt as to my last appointment -- it was probably just a bad day. I had the MRI/MRA last week, which was really really cool (I'm not claustrophobic) and will find out May 17 what the prognosis is. If surgery is indicated, I've been looking at Shands in Gainesville, there is a surgeon there on staff that specializes in adults with CHD as well. But who knows? I may need your contacts as well.

Send me a private message with your contact info - I'd love to chat!

Heather

 

[sylviayasgur]

hi heather!
if i'm not mistaken, i think there are several people here who have had their surgeries done at shands. srwieland? peter easton? i'm not sure, but i think it was last year around the summertime. you may want to look up their posts..
in the meantime, be well and please keep us posted.
-sylvia

 

[hensylee]

Think Mike in Florida had his there, too? And one of the members works there - his name Mike, as well? Remember he would check on Mike and report to us? My fuzzy rememberer has a prbl w/names. (well, maybe a couple other things, too)

As for Shands you can't do better and it's not that far from Tampa. An easy car ride. You may already know it is a teaching hospital and connected w/U of Fl. I know someone who is a patient there right now and they have saved her life. Tampa., too has some good hosps. You might have to flip the coin?