Surgery Again? Hope Not.

[Blake777]

Well I was just calling in my INR results when my surgeon's assistant told me he had got my latest echo results. Last year I had no pulmonary hypertension in my echo results, this was 12/09/09. Well now he says I do and it is at 41, how can that be?

I remember my cardiologist telling me that if the valve replacement did not work or if the pressures went back up I would have to start on pulmonary hypertension meds. I have this lung disease that no on has been able to figure out and I've been going through testing for like 8 years. I do spit up blood sometimes, but it had gotten better, but had chalked it up to acid reflux just like the doctors, I guess because I was so sick of being stuck and tested and just tired of it all. And since the tessalon pearls they gave me were keeping down the choking, I thought I would be okay.

Anyway doctors had decided it was my heart that is why I had the heart surgeries.
Now I'm thinking now that I have this valve and I'm still having problems, that maybe it is my lungs. I almost died from the choking and coughing after surgery and the surgeon was just kind of stunned because my husband told him to take me out of the medicated induced coma he had me in because I would choke to death from all the thick sputum coming from my lungs and he did not believe it until it was almost too late.

Sorry about the running off at the mouth I am just stunned all over again. Maybe it's time to go to the Cleveland clinic since now I do have insurance.

 

[dfelder]

Which surgeon/hospital did you have your surgery at? Echo's are wrong all the time.

 

[Blake777]

Same one I always have it at. I live in Oklahoma City, had at Presbyterian Hospital.

 

[Michelle D]

Wow that all sounds terrible, please do go to the Cleveland clinic, they were amazing there from the surgeons to the CNAs. It really is amazing there, I have a friend there right now getting brain surgery, she's spent months there and has nothing but good this to say as well.

 

[Dennis S]

If you can get in, I would get to the Cleveland Clinic ASAP. This sounds serious, and might be a good way to get some peace of mind.

 

[Blake777]

Well I might be jumping the gun. I will wait for my heart surgeon to contact me, his assistance is asking him questions about my pulmonary pressures and will decided if I should come back in or not. Keep me in your prayers, you are always in mine.

 

[kfay]

Echo's can definitely be wrong. I don't know what the gold standard for testing for PH is, but we have a couple of members who have it and of course Nancy, who took care of Joe, who hopefully will be along to advise you.

The CC may be a good choice for you, but I'm not sure what their expertise is in lung diseases. They are not necessarily the best to go to for everything. I would probably do a little research including using US News rankings as well as asking other members who have had problems with their lungs for referrals before packing up and heading to CC. I really wish you the best in finding the answers to your problems and that it does not include another heart surgery.

Please keep us posted about what you decide to do.


Kim

 

[Blake777]

Thank you Kim. I remember doing all that research right before I was diagnosed with valve problems. If I remember correctly there is a doctor at another hospital here that specialized in just Pulmonary Hypertension and is very good at what he does. At the time I had no insurance but now I do, so will definitely be checking him out. And also checking out some more. As a matter of fact there was another doctor in New York that was seeing patients for free because she knew it was hard for some to get help with pulmonary hypertension. I remember getting all this info off the Pulmonary Hypertension Board.

Hopefully my doctor was either reading the wrong report or they messed up. Keeping my fingers crossed. Thanks again.

 

[Duffey]

Norma has fought pulmonary hypertension; maybe she will chime in. My last readings were higher than 41; 48-50, as I remember. I'm kind of treading water with them right now.
You definitely need to be seen by a cardiologist that specializes in pulmonary hypertension. You can check out the PHA and get recommendations there.
Good luck!

 

[Lynlw]

Echo's can definitely be wrong. I don't know what the gold standard for testing for PH is, but we have a couple of members who have it and of course Nancy, who took care of Joe, who hopefully will be along to advise you.

The CC may be a good choice for you, but I'm not sure what their expertise is in lung diseases. They are not necessarily the best to go to for everything. I would probably do a little research including using US News rankings as well as asking other members who have had problems with their lungs for referrals before packing up and heading to CC. I really wish you the best in finding the answers to your problems and that it does not include another heart surgery.

Please keep us posted about what you decide to do.


Kim

I'm sorry to hear your pressures look like they are gettning worse. I agree with what Kim said, but wanted to add as far as I know the Gold stand for PH is a right and left cath.
Hopefully your surgeon will get back to you soon, so at least you will have a better idea what is going on.

 

[njean]

So sorry that you may now be battling PH!

I started experiencing high PH shortly after my last OHS in 2006. It was alarmingly high, at 88mm for many months. Then my cardiologist sent me with a HP specialist and I was given a medication called Revatio. Since I have been on it, my PH numbers have declined into the 50's; still high but certainly not where it was before. In fact, I had an Echo in June of this year, and it showed it was at 45.

So don't despair....there are meds that will work. You may want to mention this to your cardiologist or ask him to refer you to a specialist.

One thing I forgot to mention: I also have to sleep with Oxygen during the night because my oxygen levels tend to drop during my sleep. I have to make an appointment for a sleep apnea test but haven't yet. Gets so tiring sometimes!!!

Good luck to you & hope you find relief soon!

And I agree with Kim .....heart caths are the most accurate tests!

 

[Blake777]

Thanks for the info, Lynlw. I actually went through the tiredness and all before surgery, it was really bad. I could barely walk without running out of breath sometimes. My cardiologist and surgeon do know about the PH meds because they told me I would have to go on them if the valve did not stop the problem. But I will feel better going to a PH Specialist than them for the PH. I will just have to see what my surgeon says and go from there.

Thanks again.

 

[Eva]

Blake, I shall keep you in my prayer hoping all will end well Keep us posted.