Awaiting Pulmonary Valve surgery

[nursemom94]

I am new to this community and so happy to have found it before my upcoming surgery. Brief history, born with tetralogy of Fallot, Blalock-Taussig shunt at 10 months, Open Heart correction at 16, near fatal V-tach followed by AICD. I have had increased fatigue, shortness of breath with activity since my arrhythmia episode 4 years ago.

My "regular" cardiologist was fine with how I was doing and basically told me to live within my limits. Through ACHA I learned so much about the specialized care I should be getting for my heart. I finally decided to see an Adult Congenital Heart Specialist. My first visit the doctor was sure I had significant pulmonary regurgitation, which was confirmed by a ECHO. I had a heart cath 3 1/2 weeks ago which revealed an absent pulmonary valve. We where hoping a Melody Valve would be an option but the area where the valve should be expanded or dilated too much. The plan is to place an Edward's tissue valve in the pulmonary position. My appointment with the surgeon is next week and my hope is to schedule the surgery in early June.

I, like many others, thought I was "fixed" 40 years ago. Thanks to the internet and ACHA I have learned otherwise. I never thought I would be having open heart surgery again. I am nervous, but anxious to start my new life and to be able to chase after my grandchildren!

I am still trying to navigate this website looking for as much information as I can find in regards to what to expect with the surgery and recovery. I know a lot has changed in 40 years and this time I won't have my Mom to take care of me this time around :frown2:

 

[Lynlw]

Welcome, its always nice to hear of "older" (sorry lol) people with complex CHDs doing well. Its scarey to think of how many CHD kids were told they were "fixed' and so were lost to the system and not being watched. No fault of the docotrs since that was what was believed at the time. It sounds like finding the ACHA could have saved your life, or at least got you to the right doctors before too much perm damage was done. What a Blessing. And to think you are a nurse, it just shows how important the work the ACHA is doing trying to get awareness about needing life long follow up out so people dont have to be lucky enough to stumble upon the truth,many in the medical establishment dont know that much about Complex CHDs, so how would anyone else who we released from care decades ago? Especially bfore there WERE specialized CHD Cardiologists and surgeons.

My son is 24 (just turned 24 in april) and even tho he has a different "main" CHD Transposition of the great vessels, because of his other CHDs main pulm stenosis /atresia, his repair is close to some of the TOF ones. He also didnt have a pulm valve for a while, they left it out when they did his Rastelli at 18 months, since he would probably outgrow it and need even more surgeries. but when he needed his pulmonary conduit replaced at 17, since he was pretty close to full grown. He also got an Edwards perimount valve and dacron conduits. (In case you dont know and were trying to search, for the most part the dont make "pulmonary valves" so usually they use an Aortic valve in the pulm postion, it took me a while to figure that out. Justin's valve is almost 7 years.

Hopefully after this surgery and your heart recovers from the years with out the valve, you will begin to have more energy and not get as tired easily. Justin often felt better the day after surgery than he did before and his color always looked much better, even tho we thought he looked "good' before.

Speaking fo specialists, will you be going to a surgeon who specialisez in CHD /Adults with CHD? They realy do have the ost experience with surgeries on the right side of the heart as well as pateits who are having multiple REDOs,

 

[Sarah_Louise]

Hey nursemom
I'm 18 and was also born with a complex CHD (see signature) due to my CHD i have regurgitation and stenosis of my pulmonary valve & artery they put in when i was 8 years old, so far i've had 4 OHS and i am currently waiting on funding for the go ahead for a pericutaneous pulmonary valve replacement with stents of my pulmonary artery & artery directly into my lung,
Good luck for your op
Love Sarah xxxx

 

[nursemom94]

Lyn,
Thank you for your reply. I LOVE being one of the "older" folks. I get so excited when I do get to meet someone older that me. Yes, my surgeon in an Adult Congenital Specialist. In fact, my surgery will be at St Joseph's in Orange, CA. They did more ACHD surgeries in California than any other hospital in the state. The minute I met my Cardiologist I felt such a complete calm that I was in the right hands. I expect the same when I see the surgeon on Wednesday.
It will be my mission after my surgery to bring awareness of this need. So others don't get lost in the "regular" cardiologist system. I would love to have a conversation with my former cardiologist, but right now I'm a little to mad.
Again, thank you for your support,
Joanie

 

[nursemom94]

Sarah, I am always amazed when I hear about someone who has had 4 OHS. I look at how things have changed in the 40 years since my last OHS. I was almost shocked when I saw two tiny holes from my last heart cath instead on the two inch scars like I have from the first 3. I am hoping surgery has improved that much. Take care and thank you for you support.
:smile2: Joanie