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.

Hi Ellen, Regarding the valve type, I went with the recommendation of the surgeon & cardiologist to go with the bio valve. I had 3 consults, and they all recommended the bio. I think the fact that you are already thinking of the fear and how to deal with it is going to help you. For some reason, I was more fearful of the pain I knew I would have after surgery. So consequently, I did not think about the fear I may face heading into the operating room - and then it took me by surprise. As the transport guy left me at the door to the operating room and started walking away, the fear set in. The Anesthesiologist stopped by to see me & was very kind. She stayed with me a few minutes, and promised as soon as we entered through the doors, she would take care of my anxiety. In retrospect, I wish I would have closed my eyes and tried to deep breathe while I was waiting at the operating room door. Remind yourself that you are in good hands with your surgical team. Take care & I will be watching for your updates Maggie

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

Hi Maggie, It's been a couple weeks since we connected. In some ways I feel like Sept 8 can't get here soon enough, and other times I would not mind if it was further off. I'm moving along pretty well with preparations - probably overdoing it in some ways. I'm going to go with the tissue valve. Dr. Stouffer is pretty confident that he will be able to clean out the valve area sufficiently, and "install" a large enough valve, that I will be able to have one or two future TAVRs without much risk. I couldn't really see a reason to go with the mechanical at this point, given the choice. I wanted to ask you a couple of things. First, how are you feeling? I know last time you mentioned sleeping a lot and some continuing pain. Sometimes now I feel like I could sleep all day. The shrinking valve has really zapped my energy. What else have you noticed in terms of your ability to get up/down, reaching for things, limitations? Are things improving? I also wanted to ask you if you would have any advice for my support team? I have my partner and a couple of very dear friends who have agreed to help me before, during and after surgery. Any nuggets of advice that you might pass along, that you and your team have noted, would be appreciated. Looking forward to hearing from you. Good healing!

Hi Ellen, Nice to hear from you! Sept 8 will be here in a jiffy! Things here are moving along pretty well, but I did have a small set back with the incision not healing properly. I ended up on antibiotics & dressing it for a time. The nurse said that sometimes the body wants to reject the internal stitches, and it happens. Anyway, it is on the mend now. I see the cardiologist Monday, and should be released for cardiac rehab then. I am excited to start that to get my strength back. I do notice that after 7 weeks of limitations with lifting, etc that I am weaker. I'm sure it will come back fast though 🙂 As far as advice for recovery - just know that you will probably sleep a lot and that is normal. I had a couple books I thought I would read, and they still are sitting untouched🙂I was grateful to have my sister stay with me a few days after I was released from the hospital. My surgery was on a Thursday, and I was released Tuesday - so five nights in hospital. They offered Monday release, but I did not feel I was quite ready. I did experience some nausea while in the hospital - probably related to the pain meds. I was only on Tylenol after being released from the first night in ICU - but during ICU I was on some pretty powerful meds. Your support team may be surprised at how little they will have to do! It was nice to have support team prepare the meals. My sister & I watched a lot of Netflix together....so maybe plan for some things you may want to watch together. You got this! It will feel good to be on the other side of surgery!