Nancy's Journal

Hi! I check in periodically to see what’s going on with everyone. I’ve learned so much from Adam and the group here and it has helped get me through. I am now 17 mos post TAVR and life is good. I didn’t know how bad I felt before and had just adapted. It was very scary in the midst of it all but the one day at a time was my mantra. I kept walking through it all ( I had 2 biopsies and a surgery after TAVR) and allergic vasculitis from the blood thinners. I made a promise to my heart to walk every day and continue to walk daily. I added swimming then weight training. I now can do more than one thing a day and now added tennis. Tomorrow I am playing in my first tennis tournament. My heart is happy, only my baby aspirin and monitoring every six months. All of you that are in the waiting stage, you can do this too. One day at a time…

This week I celebrate my 1 yr anniversary of having TAVR. What a year it has been! Between the pandemic, having several scares with bleeding issues, having 3 surgical biopsies and finding an incidental very early cancer that required another surgery My main issue has been recovery from allergic vasculitis that I developed from Plavix. I am still receiving treatment on my eyes which now have side effects from the side effects.... Heart wise my echo shows improvements in size and function and I am in the normal range now. My cardiologist who also did my TAVR encouraged me to exercise as much as I could as he thought it would really help me turn things around. It did! I am walking 4-5 miles daily, play tennis several times a week, also Pilates and weight training. I’m so blessed to live in this era to benefit from medical advances like TAVR Thanks to the other heart warriors for the year of support!!

I’ve been keeping up with everyone’s stories and wish everyone the best as we all progress along in our Heart Warrior stories. I just had my 6 month post TAVR virtual appt with my cardiologist. Covid cases have jumped in numbers here so he changed this to a non office visit. The good thing is I get to stop the Brlininta (blood thinner ). Ive had lots of problems with bleeding and developed allergic vasculitis from the initial Plavix. My cardiologist reviewed the 6 month echo and says the EF is in the high 60s and my heart sounds strong. The not so good thing is that the gradient is higher so he wants me tome in for an EKG and appt so he can listen to my heart in person.

Has anyone had trouble with Plavix or Vasculitis after your new valve? I am now 3 mos post TAVR and have had increasing bruising and now an ulcer on one foot and painful lumps under the skin. I had an ultrasound of my legs on Wed and lots of labs. My cardiologist says I have to take the Plavix for 3 more months and hasn’t seen a problem with it in others. It’s pretty painful so I’m frustrated and now my stomach has been burning. I had been feeling so good....

I went to the hospital today for my Covid delayed 30 day TAVR tests. ( it’s been almost 60 days) I had echo/ ekg and was supposed to set the heart valve team NP but she was out sick. I have been feeling great ; walking 4-5 miles a day and swimming. I’ve lost 50 pounds since my diagnosis. This past week I’ve been getting dizzy and I have some red spots that are spreading on my foot and ankle since the TAVR. They said they would text my cardiologist that they recommended I make an appt with him to f/u. (He did my TAVR as well). Before I left the area I could hear my cardiologist in the hallway and he came over to look at my tests and see my foot. He had me meet him over at his office and we went over my tests. He says everything looks good and he is very pleased. My EF is in the 60s and there is a small leak but says it’s nothing to worry about He took me off Lasix and halved my BP med and ordered labs. I have a f/u 7/21. I’m so thankful for my hospital and my cardiologist. I’m lucky to take advantage of this new technology and my new lease on life!

My TAVR is approved and scheduled for 4/8. This has been quite the journey! Thanks to my heart team and thanks Adam for connecting me with Edward Sciences TAVR group. It’s awesome to get support and hear about the advances coming our way to make our valves/lives even better.

Just got the call that my TAVR scheduled for tomorrow is cancelled. My insurance refuses to authorize it and would not participate in the peer to peer other than to say they weren’t covering the procedure. We hear they are not covering TAVR for low risk patients but will relook at it in 6 months. That will not help me unfortunately. My cardiologist filed a formal appeal and put me on the schedule for 4/7 in case we can win the appeal. I am not feeling well and can’t wait long to get my valve replaced. Plan B will be the full surgery which seems so unfair for the insurance to dictate.

I’ve been worried about my procedure (TAVR) that is scheduled for 4/1 being canceled due to the Corona virus. Today I got a call from my Heart Team nurse who said my insurance Anthem Blue Cross denied my TAVR. She says the insurance had some years old guidelines they based their decision on. She said they sent 90 pages of documentation and asked for a peer to peer review. Now we wait for a decision...maybe 48 hours.

I just got the call from my Structural Heart Team with my recommendation. They say TAVR or mini sternotomy with Bio valve. I have no other issues with my heart that need repair. I am able to get a large valve and they feel if I have TAVR I can have a valve in valve later. If I have the surgery I can also have TAVR later for replacement. I am a little surprised due to my age (60) that TAVR is on the table.

I was scheduled to have my angiogram next week but ended up having it last night and now I’m admitted. I did my labs yesterday and got a call from my cardiologist asking me to come in. My trop level was high and after repeat it was still high and he was afraid I had a blockage. Angiogram went well and no blockages found but my INR and Trop levels are high so I’m on telemetry.

I did several tests last week and met the surgeon while I was there at the hospital. He does lots of valves and says he uses a mini Sternotomy approach. He and my cardiologist both think I have a bi valve and the team will meet next week after Ihave my angiogram and we will make a plan. I had a reaction to contrast with the echo so now I premedicate with antihistamines and steroids before contrast procedures. It seems time is going so slow yet I’m not looking forward to surgery. I have been reading everyone’s stories and it helps me not feel so alone.

I was hospitalized before Christmas after I had an episode where I couldn’t breathe while doing leg lifts. My husband called 911 and I was admitted after spending the night in the ER. I had an echo which I was told was ok and discharged home with BP meds. 1/2/20 I went to my PMD and was told the echo showed Aortic Stenosis and I needed “open heart surgery”. They made a f/u appt in 5 weeks and said they would refer me to a cardiologist. I had no specifics and no plan and was finally given an appt 6 weeks away. I did a lot of reading and tried to get a sooner appt. I attended a TAVR presentation with Dr Valles in my city and I asked my PMD for a referral. Dr Valles then fit me in when he heard my story. I am now the process of my work up. I have a CT, pulmonary function test and carotid ultrasound this week. I will also meet with the cardiologist thoracic surgeon while at the hospital. I have an angiogram set for 3/9. It has been very overwhelming. I feel I am good hands now and so thankful he took me in as a patient. I am very nervous about all the tests and what lies ahead. Dr Valles said the plan will depend on what they find but he suspects a congenital problem. I have been walking twice a day but can no longer walk my golden retrievers and can’t carry things when I walk.