Possible 3rd Valve Replacement

[Survived03]

I’ll probably end up getting another opinion or two. It’s just a hard thing to do when I’m an introvert!

Gail do you have someone close by that can advocate on your behalf and participate? I have been involved in a couple medical discussions as an advocate or POA but unrelated to our “stuff”. I believe it was helpful.

 

[Chuck C]

I am sitting here 1 week post op from my 3rd surgery. From my previous 2 I was under the impression that the risk were significantly higher. I live in a city with a fantastic health system and top rate surgeons. I am very active and healthy 41 year old. I had resided that I would need to put in a mechanical valve when the 2nd tissue failed. After my cardiac cath pre op procedure both my cardiologist and surgeon started to talk to about considering a TAVR. This excited me because I would really hate to miss out on new valve options that COULD be coming that last and don't require warfarin. The day before the procedure my surgeon changed his mind based on 2nd echo he had me undergo. I am glad he did because it turned out that my previous valve had started to fall apart and a TAVR could have given me a stroke in this instance. So from there I really dug in on true risk of the surgery for me at my health and age. I considered what the future might offer. This included considering taking warfarin as I see new long lasting valves not requiring warfarin are put into new patients. I thought about getting another tissue valve that has has good historical data to last longer than my previous 2 (I have had some bad luck there) and then possibly getting a TAVR for the 4th. In the long run these decisions are incredibly hard/personal. I went with the tissue valve and told myself I need to keep in shape to prepare for the next time around. At 26, 34 and 41 I have time and time again decided to bet with science and deal with the recovery vs. the warfarin. That my choice.

My recommendation for you is to get the data from your doctors. What they say the risks are for you. In the end that's what will guide you to your decision.

It looks like you're about 3 months out from surgery now. How's your recovery coming along?

 

[Springdogg]

It looks like you're about 3 months out from surgery now. How's your recovery coming along?

Well 9 days after surgery things were going great but then I got a blood clot that entered my heart giving me a heart attack. Full STEMI and I lived. I was placed on ECMO because they couldn't get impella past my new valve. For the next week docs were hopeful that I could come off ECMO and rehab my heart but unfortunately my EF had fallen to 25 at best. I was moved to the larger hospital that handles heart failure. They attempted to do the impella their as well and failed. 16 days total on ECMO, 28 days in the hospital and I went home on an LVAD. I couldn't get on transplant list due to antibodies. So things have change a lot for me. Wish to hell I was at 3 months post AVR....I would be feeling better than I did back in May. Today I am 6 weeks post op from the LVAD and taking it one day at a time getting my strength back. Maybe in time I get some luck in my favor instead of against and get a way off this LVAD but for the time being I am alive and thankful for that.

 

[Chuck C]

Well 9 days after surgery things were going great but then I got a blood clot that entered my heart giving me a heart attack. Full STEMI and I lived. I was placed on ECMO because they couldn't get impella past my new valve. For the next week docs were hopeful that I could come off ECMO and rehab my heart but unfortunately my EF had fallen to 25 at best. I was moved to the larger hospital that handles heart failure. They attempted to do the impella their as well and failed. 16 days total on ECMO, 28 days in the hospital and I went home on an LVAD. I couldn't get on transplant list due to antibodies. So things have change a lot for me. Wish to hell I was at 3 months post AVR....I would be feeling better than I did back in May. Today I am 6 weeks post op from the LVAD and taking it one day at a time getting my strength back. Maybe in time I get some luck in my favor instead of against and get a way off this LVAD but for the time being I am alive and thankful for that.

Very sorry to hear about the challenges that you've faced.

Maybe in time I get some luck in my favor instead of against and get a way off this LVAD but for the time being I am alive and thankful for that.

I'm also very glad that you're alive and see that you have a positive attitude. Hoping that you are able to get off of the LVAD one day so that you can play hockey again, as I know that was your motivation in repeatedly choosing a tissue valve.

 

[Chuck C]

28 days in the hospital and I went home on an LVAD.

I'm learning about what an LVAD is. So, is yours similar to this?

Wish to hell I was at 3 months post AVR....I would be feeling better than I did back in May. Today I am 6 weeks post op from the LVAD

Does this mean that you had OHS #4 just a few weeks after #3?

Again, hoping for a positive outcome and that you're able to one day get off of the LVAD.

 

[3mm]

Today I am 6 weeks post op from the LVAD and taking it one day at a time getting my strength back. Maybe in time I get some luck in my favor instead of against and get a way off this LVAD but for the time being I am alive and thankful for that.

I am sorry to hear about your problems. I will remember you in my prayers.

for the time being I am alive and thankful for that.

Your positive attitude inspires all of us. Keep fighting!

 

[Springdogg]

I'm learning about what an LVAD is. So, is yours similar to this?




Does this mean that you had OHS #4 just a few weeks after #3?

Again, hoping for a positive outcome and that you're able to one day get off of the LVAD.

Yes my LVAD is just like that. I have the Heartmate 3.

Yes I had my 4th OHS 3.5 weeks after my 3rd and survived that too.

Hopeful one day I can get off LVAD too but right this moment its not likely. Going to need some things to fall in my favor.

 

[Springdogg]

I am sorry to hear about your problems. I will remember you in my prayers.



Your positive attitude inspires all of us. Keep fighting!

Appreciate this!