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J

julie

Hello! I want to introduce myself and thank you for all of your postings that have helped me so much. Even though I wasn't able to get registered and post until now (e-mail address issue), I have been reading the forums for about two months now. I was born with TOF and had my pulmonary valve replaced on June 1st. The surgery went very well, and my recovery has been great so far. I am very lucky. THese forums really helped me to feel prepared before the surgery and answered my post-surgery questions.

I haven't read about others with TOF and pulmonary valve replacement. Is anyone out there? Also, I am finding myself worrying about my heart a lot because I went for 30 years living a normal life. My only reminders of the TOF were regular check-ups and antibiotics for the dentist. Then, over the last two years, I was finding myself exhausted all the time and my cardiologist (a great ACHD doc at Washington Univ. in St. Louis) decided after a series of tests that it was time for valve replacement. Now, I am nervous if I am going to start falling apart. I have no rational reason to think that. I am 36 and everything looks great so far post-surgery. I saw my cardio today and asked him about the only other issue he has mentioned - a mild leaking aortic valve and very slightly enlarged left ventricle. He startedme on lisinopril 3 years ago for this. He said it is very unlikely that this would ever be a bigger issue. Any advice for leaving well enough alone and just enjoying my good fortune? Has anyone had this experience?

Anyway, sorry this is long. I am so glad to have found this site.
 
Welcome, Julie. So glad your persistence paid off.

I really can't help you with your particular cardiac issues. But I can say that having doubts and concerns about your future health is very common after ohs. Probably the best way of looking at it is that you had a mechanical problem that was fixed by a skilled mechanic. You'll be much better when your recovery is complete.
 
Julie - Welcome! I've always heard that developing post ohs depression is something to be on the look out for! I wonder if you have a little depression, anxiety, or a combo of both. OHS is life changing - only you can really tell if this questioning is a passing thing or a sign of something bigger (i.e., depression). I think, regardless of age, that this time in your life is one that brings about reflection and pondering your future, etc.

You're post op report is similar to mine in that you have issues with your aortic valve/ventricle. My doctor picked up leakage when I went back last week. What is the med you are on? What is it specifically for? My left ventricle muscle was enlarged and the reduction of it was a significant portion of my surgery.

You're not falling apart! Trust me!!!!!
Debbi
(Let me know about the med. I'll be curious to see what its purpose is.)
 
Medication

Medication

I take lisinopril, which is an ACE inhibitor. It is usually used to treat high blood pressure but can also be used for heart failure. The way it was explained to me when I started it in 2003 was that the left ventricle was showing signs of strain (due to the leaking AV), so the medication would lessen the strain on the heart/enable it to not work as hard. I am on a very low dose (5mg) because I have generally low blood pressure. My doc even said today he would like me to be on a higher dose, but my bp would not allow for that. In 2003, the nurse told me I would take this for the rest of my life and it is a preventative thing to keep the left ventricle from getting worse. I hope I have interpreted all of that correctly, but that is what I recall.

Thanks for responding
 
Julie,
I sure hope some pulmonary folks get back to you soon. Maybe since it is the holiday weekend there are fewer vr.comers on. Thanks for responding to my ? about your med.
Have a good 4th!
Debbi
 
Julie,

I don't have experience with your specific issues. but I do take lisinopril and have been assured it's helpful in taking stress off the heart. Also supposed to have some good effect re type 2 diabetes, which is one of my concerns. (Forgotten exactly what effect; it's hard to keep up with everything.)

Just wanted to welcome you to the forum. Concerns are normal both pre-op and post-op and short and long range. Sounds like you are doing well. This is a good place to ask questions when you have concerns.

See you are from St. Louis. I am an avid fan of the baseball Cardinals, as is Mary from Missouri, whom I'm sure you will be meeting on here.

Cheers...
 
Welcome, there are a couple tof patients here, but i would suggest you also check out the forum at the adults w/ CHD site http://www.achaheart.org//boards/index.php
since I know there are many people with TOF that have gone thru the same things thinking they are "fixed" only to find out many years later they need surgery. Good Luck and i'm happy things are going well post op, Lyn www.caringbridge.org/nj/justinw
 
Hello Julie,

I am also a TOF patient. I am 40 and had my PVR 15 years ago with a cadavar valve. I am also on an ace inhibitor (enalopril specifically). So far everything is going pretty well. I have had mild exercise limitations all of my life. I had my BT shunt in '65 and my "repair" in '72.

I am also active with the Adult Congenital Heart Association (achaheart.org). We are having a national conference Sept 15-17 at UCSF. At the last national conference there were 200 patients and I expect more this year. There will be ACHD health care providers from all over the country at the conference. It is a great time to meet other people with congenital heart defects and learn more about it.

Feel free to ask me anything you want.

Debbie
 
Welcome Julie...Sorry I don't know much about your condition but it looks like you picked a great place to have your surgery. We are very lucky being so close to so many great hospitals here in the St.Louis area. I'm across the River in Granite City, IL. I had surgery last year at Christian Northeast which you probably know is part of BJC. Post Surgical depression I hear can be a real problem...Shoot, I already took meds for depression anyways..So maybe thats why I didn't notice anything different. I was 46 when I found out I had any kind of heart problems...Ended up having a Triple by-pass, an Aortic Valve and Aneurism repaired. I recommend that you see your doc when your supposed to and just get on with living your life. I mean that in a good way!

Nice to meet you!
JohnnyV
 
Welcome to VR, Julie!

I can't speak to your specific situation, but I noticed that you had surgery at Chicago's Children's Memorial Hospital ... that is where all 3 of my surgeries have been ... 1977, 1987 and 2003.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Who's gonna hold me tonight?" ... Trace Adkins ... 'Help Me Understand'
 
Welcome Julie...

Welcome Julie...

I am happy thta you are doing so great after your surgery. Don't forget, if you just had surgery June 1st, you ar eonly about 4 weeks post -op. It takes a long time for somepeople to return to what I call normal. I had surgery in January, returned to teaching in April. It was not until the end of May that I felt like my old self.
Just keep walking, resting when you ae tired, taking your meds, and eating healthy. make sure you make time for something you truly enjoy.
Good luck
 
Thanks

Thanks

I just wanted to thank everyone for their replies and support. THanks to Debbrn and Lynlw for the info on the ACHD site. I did a quick reading on the forum and did see several people with TOF who have had or are having PVR and have had otherwise healthy lives. It is so helpful to "meet" other people with the same thing and see that they bounce back and life goes on.

I will keep reading both forums and hope that I can offer support and help to others just as I have received here.
 
Welcome, Julie. This is a forum filled with everything you want to know. I hope you find all the support VR has for you. If we don't have an answer, somebody will find it. Welcome to the bunch.
 
Hi, Julie!

Hi, Julie!

Glad you made it, both ways..........on the forum and through surgery. :D I can only third the adult chd group. I think you will find lots of TOFers on there. A former student came by last year to talk to me because she was dismayed to find out that one of her valves was leaking. She, too, had a TOF repair as an infant and thought she was completely repaired and her heart was no longer a concern, so she was totally shocked when they informed her about it at her annual checkup. SHe's only 18. Thanks to Niki and Cort, I referred her to the adult CHD group as well. Please keep us posted. Many hugs. J.
 
Welcome, Julie! There is a member here, George, who had TOF and had the repair :confused: as a young child. 40 years later he has just had his pulmonary valve replaced (or is it that he actually now has one for the first time??). The same surgeon performed both!! George is a very warm and supportive man and I know that he would enjoy hearing from you. I don't know how much he frequents our site these days. You should go into his member site (click on member's list, blue stripe above, and go to George) and try sending him an email. If this isn't working for you, PM me and I'll give him a nudge.

Glad you found us!

:D Marguerite
 
lurking in the shadows

lurking in the shadows

Marguerite53 said:
Welcome, Julie! There is a member here, George, who had TOF and had the repair :confused: as a young child. 40 years later he has just had his pulmonary valve replaced (or is it that he actually now has one for the first time??). The same surgeon performed both!! George is a very warm and supportive man and I know that he would enjoy hearing from you. I don't know how much he frequents our site these days. You should go into his member site (click on member's list, blue stripe above, and go to George) and try sending him an email. If this isn't working for you, PM me and I'll give him a nudge.

Glad you found us!


:D Marguerite
Click to expand...
OK, I've been lurking too long! :eek: Today is the 10 month milestone for my PVR. I'm happy to say all is going well. The soreness from the sternotomy is FINALLY pretty much just an unpleasant memory. If I twist, or pull really hard against something (a certain barn door comes to mind) I can still get myself hurting for a day. I learned to get my wife to open that door for me! Overall, I'm pretty much back to my onery old self. ;) I'll send Julie a PM
 
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