Ellen's Posts

Hi Ellen I had my surgery replacing my totally worn out and clogged aortic valve when I was 53. I did I lot of reading since they had to keep me for four weeks n the hospital due to my collapse. The med team where clear that the recommended an artificial valve but it was up to me to decide if I wanted a bioprostetic or an artificial/mechanical. In my case I would likely had to do one more replacement possibly two if I took the bio prosthetic valve. Back side with the mechanical is the bloodthinner. I finally in the end took the mechanical to try to avoid resurgery and tried to understand how I need to adapt my life to live with it. In the end what I had to adapt is not really much, I have to be a bit more careful but still do things I did before. I like beer and wine and that one I have limited to a glass or two every now and then. Still take a glass of good wine to the food on Friday/saturday. To be honest I do not know if I did the right choise or not time will tell but now it is two years and I live a normal life. The fear is tricky. I had many ups and downs during my 4 weeks of waiting and also after. I think all of us have. Then I wanted facts and even if the surgery is big and you will have pain the success rate is really really high. At my hospital in Sweden they had a success rate of >99%. I tried to read, look at tv try to distract my self but also talking to friends and family. I also spoke to doctors and nurses how to prepare and also therapists before and after. I do not know if this helps but I can tell you I was super afraid but you will get thru this.

Hello, Ellen - and Good Luck with the decision! I have now gone through both - SAVR and TAVR - and I will say a few things but remember I am NOT a doctor! I had SAVR in 2017 - TAVR was newer then and I also had an aneurysm that needed fixed. SAVR recover was definitely tougher. I did start having AFIB after the surgery - in the hospital and continuing (through the TAVR, at least). When the echo in May indicated severe aortic stenosis, the cardiothoracic surgeon who was still following me went directly to TAVR. I had that procedure one week ago. Apparently there is an appendage on your left atrium that, during SAVR, they can remove or close off - which reduces (by some %) your risk of a stroke - I don't think it reduces AFIB - but the clot formation that AFIB can result in. That is apparently not possible during TAVR. I asked about it - but was told it was not a possibility during TAVR. I was also told that the surgeon went directly to TAVR because re-do SAVR is much more difficult and risky. I was released from the hospital the day after the TAVR (in the afternoon, after echos and x-rays). I have had a little dizziness - and it's early yet - but the TAVR was certainly less intense than the SAVR. They had told me on phone I could drive after 48 hours - they increased that to 14 days (but still less than the 30 days after SAVR), and the lifting restrictions are of a lesser duration as well. If you have any questions I can try to answer - please let me know. GOOD LUCK!

Hello Ellen, It is a big decision to make, and I recommend you keep asking questions to fully understand both options. I also had bicuspid aortic valve, and always thought it would be TAVR but ended up SAVR. I had several different consults and they all recommended SAVR because of my age 66 and overall health. The consensus was that I was young & healthy to do SAVR now, and then years down the road when the tissue valve they did via SAVR wears out, they will then replace it using TAVR. So, I am fresh out of SAVR on July 9th. A very hard thing and I kept wondering why I was there as I did not have a lot of symptoms. Today is 12 days out and for the first time I slept all night without waking up for pain meds. So all in all, 12 days isn't that bad, right? Take care!

Hi Maggie, Thanks for your response, and congratulations! I think I am likely going to go the same way, and for many of the reasons you mentioned - current good health, options for TAVR in future, surgeon's ability to create a healthy starting point for the new valve rather than just setting it inside the bicuspid valve that's already there. I also am fortunate that it sound like the surgeon can give me a pretty good chance of being A-Fib free afterwards. I have had some increase in fatigue, and some experience of being out of breath during swimming, but I've attributed that to "just getting older" until recently. I hope you don't mind if I check in with you from time to time. Good healing!

Sure! It seems we are following the same path....A major thing that helped me in recovery was a big wedge foam adjustable pillow (ordered from Coop). It is hard to lay flat after surgery & that thing was amazing. I had another big foam pillow from them that I put on the side of the wedge, and it then allowed to sleep somewhat on my side and back. I honestly think that is what allowed me to sleep my first week home. Glad to share any other tips with you. I nice soft front closure bra with fabric under the hooks is also key (no underwire, just soft cotton), and some button up blouses. I was surprised at the amount of bruising all over my chest and arms, so I was happy to have long sleeve button up blouses to wear.

Hi Maggie! Thanks for the recommendation about the pillows! I am typically a side sleeper so the tip about an extra pillow to support that sounds like something I can use. I haven't ordered any bras yet but I have a couple I'm looking at. I have an appointment with the surgeon this week; I am hoping we can set a date for the surgery. I feel like I have learned so much and am ready to move forward. Still deciding on mechanical vs. tissue for the valve. I know the surgeon will help with that decision. It's been a week or so since I checked in with you. How is your recovery going? What has your progression been like? I would like to hear about your experience. Take care, Ellen

Hi Ellen I hope the appointment with your surgeon goes well. Did he make a recommendation as to the valve type? Recovery is going as expected here. I will be four weeks out Thursday, and still have some pain at the incision point. I understand it is normal as part of the healing process, and it is manageable with Tylenol. I still sleep a lot! The recovery has made me realize that I need to be patient, it just takes time 🙂 Take care, and keep me updated! Maggie