New Member.

[dornole]

Deidra,

I'm old and I'm fat! But i am in pretty good shape for an old, fat guy!

So . . . do you want to get older?

Not sure what your options are if you need a valve replacement and TAVR won't work. I am shocked they even tried it unless you are too frail for OHS. If you don't want to go through OHS, even though you could, then you enjoy the time you have left without intervention and be at peace with it. Totally legit option.

 

[tommyboy14]

I frankly think you got very lucky. At 61, the TAVR may have lasted 8-10 years. Then its either another TAVR or open heart. But even though you say you are large, at your age you could still live another 20 years. If so, then going with a mechanical valve is the only way to get a 80-90% chance of avoiding future interventions.

 

[pellicle]

Hey

Now they want to cut me open and replace the valve. Not sure I want to be cut open. A friend recommended I come here to learn more.

haven't heard much from you since, I hope you're doing OK.

I hope you can tell your friend that you learned a few good (concrete, honest and life saying) things here.

Best Wishes

 

[pellicle]

Oh and @Retimlap
this ...

Replace, or run the clock out. If you’re having any fun in this world at all, opt for choice number one! It ain’t so bad.

... and to be frank what if your hopes of the next place aren't as good as here...

Might be better to stay. I can't say I've regretted "not leaving" and I've perhaps helped a few others along the way. Its as much as we can ask for (to be able to give back).

 

[Beach77]

@Retimlap I was 64 (Dec 2020) when I asked for TAVR (really demanded!) and had to get "permission" from my heart team because I was too young for a TAVR. (haha! that still makes me smile) They did approve but wanted me to talk to a surgeon first, to be sure I understood the mechanical option. (which I didn't and didn't want to because of TAVR) They said either options would be good for me. After speaking with the surgeon and about 6/8 weeks to decide, I went with the On-X. I turned 65, 7 days after my surgery and on my discharge day. Oh, it was during the first peak of COVID in San Diego too! NO visitors, no leaving my room unless a nurse was with me! I'm also overweight but I was physically fit. The doctors asked me about my exercise because they were so surprised my heart was in such good shape! (My thyroid caused me to gain a lot of weight) I still struggle to lose the extra but.... I only used tylenol after ICU. I had a few bumps during my hospital stay which kept in for 4 extra days. I look back now (3 1/2 years) and it's a distance memory! I do EVERYTHING I want now but hiking is my happy place! I love camping and hiking! My On-X lets me do anything! Coumadin is a pain but it's nothing-mostly! I don't like "having" to take it or listening to my husband ask me EVERY night if I took it, even if I told him. So annoying but he loves me after 47 years of marriage. But it's very easy at the same time! I go to a clinic every 4 to 6 weeks for a lab draw and I bought a meter off ebay to test weekly which is perfect for me! It's easy testing weekly and I like the clinic.

Be happy your doctor made the call, maybe saved your life! Even if it means a different option for your needs! I'd be happy that he showed a "caring" decision. I think it shows he was a good surgeon! Sounds like you're in good hands! There's lots of info on this site! I found it a few months after my surgery.

 

[Chuck C]

I do EVERYTHING I want now but hiking is my happy place!

I feel the same way. Also have a mechanical valve, Bentall. Just finished up a 3.5 hour hike with 1,800 foot elevation gain.

A lot of work, but the view at the end was well worth it! And the valve performed like a champ, as always.

 

[pellicle]

A brave and honest post, hatsoff to you

...but he loves me after 47 years of marriage

Don't undervalue this.

 

[AZ Don]

Now they want to cut me open and replace the valve. Not sure I want to be cut open.

I don't think anybody wants to be cut open, but what are the alternatives? When a valve reaches the point that surgical intervention is needed, I think life expectancy without surgery is down to 1 or 2 years. At 61, with surgery, your life expectancy is easily 10 times that. OHS is major surgery, but for me, it was less painful and I had a quicker and easier recovery than my knee surgery. Most people are out of the hospital and getting around well after less than a week, I know I was.

 

[tommyboy14]

I will be honest, I can do more after OHS than before. I also actually do more because OHS wakes you up a bit and you want to live a bit more. I have not exercised before my OHS. Since 2nd OHS, I am exercising four times a week. Have never been this fit.

 

[pellicle]

OHS wakes you up a bit and you want to live a bit more

exactly ... its the wake up call.

Sadly its not actually the news of the valve problem that's the wakeup call, that's just the bad dream before you wake up from surgery; where you then really understand what the hell has happened.

Best Wishes

 

[Erwitchin]

Check out minimally invasive options. I just had my aortic valve replaced on June 12 via mini thoracotomy. I am off the serious pain meds (don't need them anymore), I feel mostly recovered from the "wounds" and my heart already feels better than it has in years.
I am trying to start some rehab next week. I have been walking, but it has been around 20 years since I have exercised and just want a professional in the room. Where I live, I could go to "cardiac rehab" but it would require 2+ hours of driving 3 days a week and, just no.

The alternative is increasingly painful Decrease in quality of life until... the organ gives out.

 

[3mm]

Check out minimally invasive options.

I certainly agree that a minimally invasive procedure is great IF your surgeon considers it an appropriate option.

I had a mitral valve repair and installation of a mechanical On-X aortic valve last Sep. I specifically asked about a minimally invasive procedure; my surgeon said my procedure was more compatible with a full sternotomy. I trusted the surgeon, so I agreed to his plan. The recovery is hard work, but it is doable. I never had any significant pain. Long term I want a good repair job; the recovery is just a temporary condition. I did get a 2nd opinion which also proposed a full sternotomy.

 

[Retimlap]

Because of my size (400#), neither surgeon I have seen wants to do surgery at this time. I have lost 80+ pounds since December. I continue to lose weight. One surgeon is willing to do OHS if I get below 350# the other will do sooner if I continue to lose weight. (Waiting for a rash on my chest to clear up. Psoriasis.) It has gotten better with treatment in the last 2 weeks. Doc said to check back with him in another two weeks. Had a heart cath before my TAVR attempt and minimal blockage was found. One place >10% and another >20%. Doc said at my age those are inconsequential. Both surgeons are willing to discuss another TAVR attempt but think it is risky and would recommend OHS.

Thanks to all for your input.

 

[Debster]

My mom had her mitral valve replaced in 2005 at age 64. She was very bad...waited too long to get it replaced. She had an oinker and triple bypass. Fast forward to now-she is almost 84. Doing very well considering-living on her own in a senior apartment near me. I so admire all of you on here!

 

[Retimlap]

Down 97 pounds since December. Doc wants me to drop about 50 more before he will do surgery.

 

[tom in MO]

Down 97 pounds since December. Doc wants me to drop about 50 more before he will do surgery.

Congratulations, 100lbs in 6 months! Great work.

Can you share your recipe for weight loss? I need to lose weight but am stuck at 15lb loss but I need to lose 50lbs more.

 

[Retimlap]

Medication

 

[SatoriFound]

I had my stenotic aortic valve replaced wirh a St. Jude valve in 1977. Have to take warfarin daily and have blood tested for coagulation rate every week or so, but other than that life is normal. Surgery was uneventful.

I am absolutely amazed by how long some of your mechanical mechanical valves have lasted. I originally read they have a life expectancy of up to 20-25 years, but it sounds like they can last substantially longer. I must've interpreted what I read wrong. In 1977 I was 7 years old and having my PEX OHS.

 

[SatoriFound]

Medication

There is nothing wrong with that. It is still a HUGE accomplishment. Good job on the weight loss!

 

[Chuck C]

I originally read they have a life expectancy of up to 20-25 years, but it sounds like they can last substantially longer

I'm not sure where the 20-25 year figure comes from. That is not supported in the medical literature. A mechanical valve should be expected to last a person the rest of their life.

Have a read of this 30 year study on the St Jude mechanical valve. 30 year freedom from reoperation was 92%.

https://www.jtcvs.org/article/S0022-5223(18)32341-9/pdf