Hello out there!

[cam4est]

I am new to this site so am anxious to hear from others. I am recovering from a 2nd OHS (PVR) in 18 months and would like to hear from others like me. The first PVR was due to severe pulmonary stenosis, blown valve, severe RH enlargement, leaking tricuspid valve and right ventricle dysfunction all caused by pulmonary banding as an infant for VSD. The VDS was repaired when I was 7 and my parents were told I would be cured from then on so imagine my suprise when in my 40s things fell apart! I am having a hard time getting my full strength back after the 2nd surgery and am going to part time work as a nurse because it is too physically demanding. I would like to hear from others about if they have had this happen to them (the PVRs after banding and difficulty getting back to full strength). The first PVR was at UVA which was a horrendous experience and the 2nd at the Mayo which was a great experience. I look forward to hearing from someone. Karen

 

[Ross]

Hello in there

Welcome to the forum

While I can't speculate on your surgery, I can say in general that all heart surgeries from long ago were nightmares. Things have advanced to the point that it's no longer such a big worry (Though both of mine were real nightmares) for most people.

Hang in there, others will be along soon. Kick your shoes off, get some popcorn, click on your favorite thread and relax.

 

[Georgia]

Hi, Karen! Just want to welcome you to the site. I don't have the issues you do (for which I'm thankful), and frankly, I don't remember anyone else with just the same background you have. But others will be along soon.

I don't doubt that you're having trouble recovering after 2 surgeries in 18 months. That's a terrible insult to your heart. I think part time sounds like plenty.

Glad you found us.

 

[Karlynn]

Hi Karen and welcome!

So reading your profile you had an PVR 18 months ago, and then you had another PVR and a Tricuspid repair after that. What happened with the first PVR 18 months ago?

As Georgia said, your body has been through the ringer. Give yourself time. Have you done cardiac rehab?

 

[geebee]

Welcome Karen,
I had 2 OHS a little less than 2 years apart in 1980 and 1982 so I understand where you are coming from. Although my problems were mitral, the toll two surgeries take on your body is immense. Please try and be patient - the recovery will come. How long ago was your last surgery?
Be sure and talk to your doctors and let them know how you feel so they can make sure there is no reason other than recovery for your symptoms. Infections can cause stamina issues.
As Karlynn said, you might check into cardiac rehab. They are pros at getting things back to normal.

 

[Superbob]

Hi Karen. Welcome to the forum. Sorry you have had such a rough go of it, esp at UVa. Looks like you are just down the road a ways from where we are here near Roanoke. I guess I was lucky to have my surgery in Northern Virginia when we were living there. The Heart Institute at Inova Fairfax is first rate. There are some great people in this forum who will be able to help you with your questions and concerns.

 

[cam4est]

Thanks

Thanks

Thanks for the replies to my note! In answer to some questions (Karlynn, you are were born the same year!) the first PVR was in 2004. It was a homograph artery and valve replacement. For some unknown reason, the valve completely degenerated within 16 months and I became very fatigued and short of breath again. I went to the Mayo last Sept and had the 2nd surgery to AGAIN replace the PV and also repair the tricuspid which should have been done the first time. I went through rehab both times. That really helped, I agree. I returned full time to nursing after only 6 months because I thought I was ready. WRONG. I work as a staff nurse and charge on a med/surg floor and you literally run for 8-10 hours basically non stop. Lunch is a luxury. Breaks are non existent. I am EXHAUSTED!! My local cardiologist told me I did too much too soon but not having anyone else to compare myself to, I just keep on working. This week I finally had to back down and I feel so guilty, depressed, and like a wuss. My body is just not rebounding (could it be old age???). I have had numerous tests done and my dr. says that the heart is working perfectly. So why can't I keep up and why do I need so much rest still?? It has been 9 months now and I want to be whole again. Well, thanks for listening and writing me back. Karen

 

[Georgia]

Although the docs say we're healed at perhaps 3 or 6 months, many of us have found that we're not back to full strength until 12 or even 18 months - and that's after just ONE ohs. I went back to a desk job at 12 weeks and really didn't have full energy until a year after surgery. I'll admit I was awfully deconditioned, but can't imagine how much 2 surgeries took from you.

So feel like a wuss, admit it, and understand that there's a good reason for wussdom! You earned it; and the one thing we've all dealt with is that you don't have any reserve for a long time. When you're tired, that's it. A cup of coffee and a candy bar won't get you going. I think your body is protecting your heart - your systems (including cognitive) simply shut down until you're recharged.

It sounds like you're doing well. I hope you're getting aerobic activity in; if not, you need to make it a priority. That will really help build your stamina. You need to take care of YOU; the rest will follow.

btw - this is a great place to whine.

 

[cam4est]

thanks

thanks

Thanks Georgia. Today I am heading back to the gym to restart my exercise. I have not been able to do it since April because of my job and being so exhausted. Felt tired adn nauseous all the time. So with the decreased days at work, I will get back to it again. I am looking forward to it.

 

[Ross]

My body is just not rebounding (could it be old age???). I have had numerous tests done and my dr. says that the heart is working perfectly. So why can't I keep up and why do I need so much rest still?? It has been 9 months now and I want to be whole again. Well, thanks for listening and writing me back. Karen

Karen I don't want to hurt your senses, but some people never do return to normal. You may or may not be one of them. I think you should know it though.

 

[cam4est]

Hi Rachel

Hi Rachel

Rachel, thanks for writing! Just curious, but why did you have to have your porcine valve replaced after only a year? Did it degenerate like my homograph? Just curious to see if that could possibly happen. The way my luck is going, it could. I have been off work 2 days and get tomorrow off too. I work this weekend both days but will be up for it after getting lots of rest and some exercise at the gym. Karen

 

[Nan]

Hi Karen, can't speak to your surgical issues, but just wanted to chime in with your feeling tired and not able to work FT as a (very, very, busy) nurse! It takes a long time to fully recover. You think you are and "should" be but your body says"no" give me more time. And that's from just one surgery. 2 in 18 months would be even more. Give yourself time, don't push yourself.

Hope you feel better soon.