Aortic Valve Replacement with TAVR: What is it like?

@karen1945, I just returned home from my annual liver and kidney transplant eval at Mayo in Rochester. Based on my experience with Mayo, I know that Mayo in Jacksonville has been very thorough with your transplant aftercare, too.
Am I correct to assume that the surgeon for the TAVR is in contact with your liver team? Considering your hesitancy with the procedure, have you talked to your liver transplant team about the procedure, and their thoughts about proceeding now versus waiting?

I would be happy to meet you in the transplant discussion group someday.
Rosemary

Hello @chud2 and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share your experience with both the TAVR procedure and Mayo Clinic. What fantastic news to hear that you have had no issues and have only good things to share.

What were you most impressed with looking back on your surgery?

Thank you for your response, Rosemary. I have been very pleased with the aftercare I’ve received for my liver transplant. I had a very good relationship with my nurse coordinator, who recently had a tragedy in her family and chose to retire. A permanent replacement for her has not been made, so I’m a little bit in limbo as to who I would consult with about my TAVR concerns. I have a nurse who will answer my routine questions, but I know because she is filling in until a replacement is made, that she’s probably overworked. When I was in the hospital after the stroke I suffered after the CATH procedure, my liver team was consulted as to my medications. After I have the angiogram and meet with the surgeon to get all the details of what may lie ahead, I’ll reach out to my liver team for any comments. Up until now, my main concern has been what the effect the contrast dye used in testing will have on my kidneys, which are compromised.

I am following the transplant discussion group.

While I’m very concerned and anxious about what lies ahead, I do know that I’m blessed to be able to rely on Mayo Clinic for my care!

Karen

Thank you, Teresa. It helps a lot to hear about others’ experiences with TAVR. It is just so overwhelming to think about the procedure itself and what is involved. Putting your very life into a stranger’s hands is such a big deal! In the case of my transplant, my situation was so acute that there was literally no choice. It was a miracle that my new liver became available when it did, and I will be forever grateful to my hero donor and his family.

My hesitancy about the TAVR procedure now that I’ve had a stroke from the CATH, is whether or not I will have another when they go in for the TAVR. I might not be so lucky next time to have a complete recovery. I wonder also if this is the right time to be having the procedure. Is my condition so dire that it would be dangerous to wait another six months or a year before doing it? The first, I know, can’t really be answered. There are risks in every procedure. The second, I hope the surgeon will be able to answer after the angiogram I am getting on Wednesday.

I do follow the transplant discussion group, and will be happy to post there.

Karen

The quality of care I received. The MD's at the Mayo work in teams so you are getting input from more than one doctor. The MD's, PA's, RN's and all the staff take as much time as you need to explain thoroughly everything about treatments and procedures. When I had my "heart blockage" there were 4 MD's and about 5 others in my room within a couple of minutes, including one MD who took my wife aside to explain what was going on and calm her down.

Yes, he had modified open heart surgery (6 inch incision) almost 4 years ago. He did not qualify for a TAVR procedure at that time. He is now 82. The doctors recommended he have the surgery before it became an emergency. We could prepare for the surgery by making sure he was physically strong. He usually rode bike 5 miles once per day but increased to five miles two times per day as well as exercises to strengthen his core (stand up from sitting without using arms). While recovering in the hospital he was able to ride exercise bike in PT and was just thrilled to be able to ride again and so soon!!

I am scheduled to have my TAVR procedure at Mayo Clinic on August 17. I will have to go to Jacksonville for pre-procedure testing, including a Covid test. I have had a PCR test before, and found it stressful and extremely uncomfortable. I asked if I could have a different test from the invasive PCR, but was told that it was procedure and if I didn’t agree to it the TAVR procedure would be canceled. I am at the point of doing just that.

From what I understand, the PCR tests are being recalled by FDA and CDC because they were never meant to test Covid and they are unreliable. It seems to me that a simple nasal swab test would be sufficient for people who have shown absolutely no signs or symptoms of Covid. Now I not only have the stress of the upcoming TAVR, but the painful and unnecessary PCR test. Over the years I have gone through cancer surgery, chemotherapy, and radiation, a liver transplant, aortic stenosis that resulted in a cardiac catheterization, precipitating a stroke, and now looking forward to a TAVR procedure. I’m about at the end of my rope. I don’t know how much more of this I can take. I have been so pleased with the treatment I’ve received at Mayo Clinic until now, but I am extremely disappointed that a simple request as this cannot be accommodated. Their hospital, and they make the rules. They are proud to say that “The needs of the patient come first.” Not in this case. I know that I’ll be labeled unreasonable and whiny, and I’m not one to waste time feeling sorry for myself as a rule. But I can’t sleep at night for thinking about what’s ahead. I’m a mess psychologically and because we’re being so careful to not get exposed to Covid, especially between now and August 16, I have nobody to talk to besides my husband, and he deserves a break!

Sorry to have unloaded here, but even if nobody reads this, at least I was able to get my thoughts off my chest via the keyboard! A relief, however small.

Karen

My wife has new tavor (81 years old with no previous heart problems).
They put her on 81 mg aspirin per day to prevent clotting. After 8 months she started having chest pains and throwing up and they thought it was heart problems. Low and behold and 165K dollars later it was the last thing they looked at which was her stomach. because they put her on 81mg aspirin for clots it caused her to have esophageal and stomach erosion problems. The question is was it necessary to put her on 81gm aspirin at all? She had no history of heart problems, strokes, attacks. etc. Now they want to change the aspirin to enteric aspirin with anti-acid drugs which have their own drawbacks. I read that the enteric can still dissolve somewhat in the stomach or if not will dissolve in the small intestine where it still can cause erosions and irritation of the small intestines and more gut problems. Why are they assuming that she will have blood clots at all and thereby cause all these drug side affect problems and the hell she has gone through because of 81g of aspirin. And they never follow up on what is going on with the aspirin which seems to cause a lot of people problems and the jury is still out on the use of 81g aspirin even after 20 years. Anyone ever gone through this?

Hi @yongy and welcome to Mayo Clinic Connect.
@wisco50 and @davej have discussed TAVR here in this conversation so I moved your post here: https://connect.mayoclinic.org/discussion/just-diagnosed-with-aortic-stenosis/ so that you can connect with them.
Are they planning on putting her on Proton Pump Inhibitors? Though it caused stomach issues, has it help her heart issues?

I am 76 years old. I had a TAVR procedure in August 2021. I also had no previous heart issues. I am not taking any medications related to the procedure.