rich01
Well-known member
Does anyone know of a forum for TAVR? I've looked in the past and never found one.
TAVR Forum
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honeybunny
Well-known member
Have you tried Meetup? They have all types of groups. You can also start one there but there is a monthly fee to have one. You might also check local hospitals. Contact their social services officer. Let us know if you find one.
You might also look into Mended Hearts. It is a national organization that has been around for decades as a support group for all types of heart issues. They have an online forum as well as chapter meetings in many larger cities. It is designed primarily for Bypass and Valve Replacement/Repair, mechanical and tissue,.......either OHS or TAVR patients.
Hi @rich01 - perhaps you could ask the technical support person, Angie, (I think that's her name) if she could add a TAVR forum here ? I think the best way to contact Angie is via the Technical support forum: Technical Support Forum
Just in way of an "Amen" to Dick's post, here is a link to new message from Mended Hearts about some sources of information about the heart and COVID-19:
https://mail.google.com/mail/u/0/#inbox/FMfcgxwHMZLFrgMzVltNpjKXbQWLJSNr
Mended Hearts is a great organization for folks who deal with all kinds of heart issues, or take care of those who do. I was our local chapter president for a few years.You might want to see if there is a chapter operating in your locality, though meetings are mostly online right now during the battle against the virus.
Here also is a link on TAVR via Mended Hearts:
https://mendedhearts.org/topic/tavr-transcatheter-aortic-valve-replacement/
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rich01
Well-known member
I'm a member at Mended hearts and Heart Valve Surgery. I had TAVR 6 months ago, so I understand the procedure. What I am looking for is other people who have had TAVR to share info and asks questions.
This appears to offer opportunity to share info and ask questions, Rich. Perhaps you have tried it and found it is not inclusive of TAVR. But thought I would pass along the link in case it is useful. https://connect.mendedhearts.org/home
P.S.: If you just enter TAVR in the search engine for this connection, all sorts of discussion seems to pop up. I hadn't really signed up for this before and participated, but now I think I will.
rich01
Well-known member
There are no posts in their TAVR forum.
Second that also. I am new and facing my TAVR. Would like to see a discussion of those who have had the surgery!!!
Welcome, bzam54f. I don't think you will find a lot of TAVR patients on this forum. It is made up of folks who have had tissue, mechanical or repair valve surgery and primarily younger, under 65-75 at time of surgery.....although there are a few "old codgers" who are survivors of earlier open-heart surgeries. The two forums, Mended Hearts and Heart Valve Surgery are good sources for TAVR info. Mended Hears also has chapters in many cities and you might try to find a local chapter. I used to belong to Mended Hears and it is a good support group with good info and worth the small membership fee, about $20/yr.
Your profile doesn't show your age and you are certainly welcome to join in our discussions regarding valve choices and pre or post op questions.
rich01
Well-known member
If you have any questions, there are a couple of us here who had TAVR. Mine was 16 months ago.
My sister (in NC) had a TAVR 3 years ago at age 81. She’s been doing well.
I am scheduled for TAVR surgery on April 1, April Fools Day. Surgeon says my Cardio CT scan shows no problem going up through the leg.
I would be interested in hearing from Rich and others on their post op limits. I have heard no driving for 2 weeks and no lifting of more than 10 pounds for 10 days.
I will be doing a lot of walking as allowed.
Also, I would like to do light swimming 4 to 6 weeks after if this is realistic as I have a trip planned.
I am 88 and in outstanding health otherwise as my cardio says very low expectation of complication's
I would be interested in hearing from Rich and others on their post op limits. I have heard no driving for 2 weeks and no lifting of more than 10 pounds for 10 days.
I will be doing a lot of walking as allowed.
Also, I would like to do light swimming 4 to 6 weeks after if this is realistic as I have a trip planned.
I am 88 and in outstanding health otherwise as my cardio says very low expectation of complication's
pellicle
Professional Dingbat, Guru and Merkintologist
rich01
Well-known member
I was feeling so good, I think I rushed things and lifted too much weight too soon. I had a lot of blood pool in my groin with associated pain. Doc said nothing serious and just to take it easy for a few days, and he was right. The wound where the catheter is inserted takes a while to heal, so don't push it. I was driving after a week.
It took me almost a year to accept the valve was in there to stay and I didn't need to worry about it. I realize now how dumb that was. Follow the schedule you are given and you will be fine.
I went to rehab 1 time and realized it wasn't for me. My center had a schedule and they were going to keep to the schedule no matter what kind of shape you were in. I was already doing way more than the exercise they had me doing and when I explained that to them, they still insisted I be treated the same as someone who was in critical condition. We had a talk and I decided to withdraw from the program.
I think some centers have excellent programs and some don't. It certainly is something you should try.
Depending on how sedated you are, you might feel a little pain when they insert the catheter. As it makes its way up to the heart, you probably won't feel it at all. When it gets to the heart, they have to maneuver the valve around to get it into the right position. I had asked for minimal sedation, so at this point, I was asking for more sedation. When they took me to critical care, I actually felt like I could have gotten off the cart and walked there.
A few things that might be helpful for you:
It's normally a very simple procedure, so don't sweat it. You will probably be out of the hospital in a couple of days. I got them to release me after just one because I told them I needed to get home so I could get some rest without them waking me up every 2 hours.
It took me almost a year to accept the valve was in there to stay and I didn't need to worry about it. I realize now how dumb that was. Follow the schedule you are given and you will be fine.
I went to rehab 1 time and realized it wasn't for me. My center had a schedule and they were going to keep to the schedule no matter what kind of shape you were in. I was already doing way more than the exercise they had me doing and when I explained that to them, they still insisted I be treated the same as someone who was in critical condition. We had a talk and I decided to withdraw from the program.
I think some centers have excellent programs and some don't. It certainly is something you should try.
Depending on how sedated you are, you might feel a little pain when they insert the catheter. As it makes its way up to the heart, you probably won't feel it at all. When it gets to the heart, they have to maneuver the valve around to get it into the right position. I had asked for minimal sedation, so at this point, I was asking for more sedation. When they took me to critical care, I actually felt like I could have gotten off the cart and walked there.
A few things that might be helpful for you:
- Ask them to shave any area that might have adhesive attached to it. The last thing you need is to have a bandage ripped off.
- Ask them to use a condom-type catheter. It will make sleeping easier and not inflame your urinary tract.
- If you have any trouble with urination, discuss with the doctor prior to the procedure.
- Expect to be woken up at all hours of the night.
It's normally a very simple procedure, so don't sweat it. You will probably be out of the hospital in a couple of days. I got them to release me after just one because I told them I needed to get home so I could get some rest without them waking me up every 2 hours.
All went well on April Fools morning. Guess they give you heparin to thin your blood and when they were finished they used a drug to reverse the Heparin and that gave me a pretty good reaction. I had tremors big time for a while. My wife has tremors so now I know what she goes through. I got good care at Long Beach Memorial and was released the next evening. I know this is nothing compared to full open surgery but I tell people its not like driving through McDonalds for a sandwich either.
I see the cardio for follow up next week and told to do two walks a day, not to lift over 10pounds but other than that just let my body be the judge. Last words were that valve is firmly in place and you are not going to hurt it. You just have to let your body adjust.
I feel much better, people have remarked at how my voice is much stronger and what good color I have. At 88 I am a happy camper.
Ready for cardio rehab program, probably at VA.
I see the cardio for follow up next week and told to do two walks a day, not to lift over 10pounds but other than that just let my body be the judge. Last words were that valve is firmly in place and you are not going to hurt it. You just have to let your body adjust.
I feel much better, people have remarked at how my voice is much stronger and what good color I have. At 88 I am a happy camper.
Ready for cardio rehab program, probably at VA.
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Hi Rich.
How old were you when you went with TAVR. What were the factors that led you to choose TAVR over SAVR?
Thanks
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I wish I had read this before my SAVR, which was 2 weeks ago. The catheter was one of the worst parts for me. I was bleeding and it was very painful the night after surgery. I begged the nurse to remove it, but she did not care. It was bleeding and my entire penis was bruised, as well as the surrounding tissue.
The day shift nurse arrived at 7am and he was my hero. He acted as my advocate. He got permission from the ICU doc to remove the catheter, with the caveat that if my bladder got to 300cc, as measured by ultrasound, that he would have to reinsert briefly to relieve me. It was such a game changer once it was out!
Well, I was able to urinate without the catheter some, but by the evening he did have to insert it briefly to release the urine that had built up, as it was over 300cc at that point. He was very gentle, and it was no big deal and out of me again after just a couple of minutes.
In addition to getting permission to remove the catheter, I was in extreme pain and he got permission from the doc to give me a PCA(patient controlled administration) with dilaudid. This was also a game changer and I did not abuse it- in fact I used it less than 2x per hour, and they had set a limit of 6x per hour.
We got along so well that the next day was supposed to be his day off, but he requested to work and requested that he work with me again. He made such a difference in making my ICU experience much more tolerable. Except for my first night with Nurse Betty, who kept me in pain for no reason, with the catheter and also by refusing to give me enough pain killers, my ICU stay was not too bad at all. Well, insomnia of course, but that is to be expected.
