Deb's Guestbook

Deb Fisher  Thank you- I am 63 and did not qualify for the TAVR- I have decided on a tissue valve called Megna Ease- 

I will be at Mayo Rochester MN

Deb Fisher  Thank you so much for your message- I so appreciate your thoughts and personal experience it really helps. I have definitely been doing some research on my valve choice and am leaning towards a full sternotomy with a tissue valve and if and when I need a replacement then I can have the TAVR - that’s how I understand it any way. 

Again thank you for taking the time to send me the message it really helped. 

Roselyn Kubek   I’m so glad…For what it’s worth, that’s what I decided and I have no regrets. I feel completely like myself again only with a scar and a daily baby aspirin.  Reach out anytime 

Deb Fisher  I will update you currently valve is moderate/severe- surgery won’t happen until severe or I become symptomatic.  I feel I am in good hands at Mayo. 

Roselyn Kubek   You certainly are! I didn't experienceanything
dramatic when I went to severe- Wouldn't have know without the echo- So go about your life and enjoy!
best

Deb Fisher  hello Roselyn I hope you are doing well.  here is an update on me:   I saw an NP last week Feb 9th and my echo showed I have moved to severe.  symptoms happen so gradual that I couldn't come up with any real physical changes so now I have to have a stress test this week Thursday to see if exercise will bring on symptoms.  If is does, which it probably will, then they will set up an appointment with a surgeon.  a normal aortic valve opening is 3.0 cm and mine is .91 cm.  I will be 64 in May.  I am still opting for a tissue valve and not a mechanical one.  I can't imagine being on blood thinners for life and all the hassle that it brings.  
Can you give me some insight on what to expect?  How long in the hospital, what I will need at home, how long once I get home will someone need to stay with me etc etc.

Roselyn Kubek   Hi Deb!  All is well here.  

What to expect varies from patient to patient and, I imagine, different hospitals have different recovery protocols, but I can tell you what I asked surgeons before and what my experience was.  The surgeon’s team will give you a lot of information about how things will work.


I do recommend having someone with you for a few nights home. You may not need them, but it is a big experience and good to have someone nearby.

I had a full sternotomy which makes a big difference in what to expect as opposed to TAVR or TAVI.  These may be new concepts to you, but it is easy to learn about them and the choices available.

Once it was clear I needed surgery, I interviewed a surgeon who specialized in TAVR, one who specialized in the Ross Procedure, and one very experienced in traditional open heart (SAVR). I was fortunate as, other than stenosis, the rest of my heart was in great shape so I had a full range of choices available.  Your ejection faction (the blood pumping), size of your valve, etc., determines your options.  I went with open heart because I am young (your age 🙂) and wanted the valve opening to be enlarged somewhat so that I can have TAVR in the future if needed.

If you have TAVR, someone who’s had the procedure can tell you more, but you time in the hospital and recovery is much quicker.  That said, here is how SAVR worked for me:


in the hospital:I woke up in the recovery room.  I was in a great mood because it all worked and I didn’t feel any different, just a little worse for wear. There were a number of tubes, a IV, a catheter, but I was not in much pain (a little stoned, though) . There was also a breathing tube that was removed as soon as I woke up.  It sounds scary, but it really was quick and not bad.  honestly that first day fades quickly from your mind.  The only thing that hurt very very briefly was when they took out the two drains from my abdomen.  I was pretty nauseous, but they gave me a patch that helped pretty quickly.  You get a heart shaped pillow to hug when you cough or move.  I was sitting up by the night of my surgery or the next morning.  I was in the hospital for an extra few days because my blood pressure was low. Total was 4-5 days.  They make sure you can walk far enough to get home comfortably. And take a shower, etc.

Oh, if you have bigger breasts, ask for a surgical bra for comfort.
Otherwise, if you have a sternotomy, you might want a lot of pillows on your bed when you get home to prop you up for a week or two. Or a recliner chair.  And don’t hesitate to call the number they give you if you have any concerns or questions.

At home:
As for recovery, i was walking to the mailbox, then to the corner of my street within a week of being home. I took Tylenol for the first two weeks. We have steps and I could do them slowly without resting by a week or two.  I couldn’t drive for a couple of weeks or lift anything more than a gallon of milk or vacuum (which is a perk). I had a visiting nurse and visiting P T person until week two or three. They were reassuring and helpful.  I arranged for friends to visit and bring lunch to keep me busy.  The primary thing I remember bothering me was being really tired for a while and tiring easily.  I also had trouble sleeping at first. My heart sounded much louder to me for a few weeks. I was reassured it was just from the muffler being cut…


I know the surgery is scary. I can tell you that after a year, I often forget I ever had it! But I felt better every week and within months I was walking 10,000 steps a day .


I don’t want to overwhelm you.  This may be too much info.  Anything specific I can tell you, just ask.

Roselyn Kubek   I want to add a few things- I forgot. I am fortunate to have a very supportive husband and that helped keep my spirit up.  It is a strange experience and when I first got home, I was a little foggier in my thinking as I took a mild pain med at night for sleeping and the anesthesia takes a lot longer than you might expect to really get out of your system, so it was good to have someone else running the show and doling out meds.  There are blood pressure p, beta blockers, and lasix and that sort of thing at first and it was good having someone else keep track that first week.  By my check up I was off or eased off everything except a daily 80mg. Baby aspirin which I still take.  And an antibiotic before I go to the dentist.

Deb Fisher  Thank you Roselyn.  I appreciate all of this information.  This Wednesday I will be having an angiogram in the AM and seeing the surgeon for a consult afterwards.  I imagine I will be set up with a surgery date after.  I will know much more by Wed February 20th.  
Thanks again