Mary Willett - Heart Valve Journal

My Journal

3 days ago

Susan Lynn, Daisy Tanner reacted to this

I am scheduled June 5th for my first open heart surgery to replace my aortic valve. Looking for tios to prep and what to expect after getting home. We have ...Read more

I am scheduled June 5th for my first open heart surgery to replace my aortic valve. Looking for tios to prep and what to expect after getting home. We have 2 second floor bathrooms, but none on the first floor. How difficult will it be to get up the stairs every couple of hours? We have a large newly remodeled bedroom on the second floor. Should I plan to stay there for the week? Its fairly simple, we dont like a lot of clutter. Its our space. The rest of the house is a bit crazy with 2 dogs, 2 cats, my stepson, his gf, and our 6 month old grandson. We all get along great and its a great living situation. Should I ask my husband to put a chair, tv and mini fridge and stay close to our bathroom during the early days? This is the space before we officialy moved in.

Susan Lynn Mary - i think you're going to want to stay on the second floor with an occasional visit downstairs f ... Read more

Susan Lynn Mary - i think you're going to want to stay on the second floor with an occasional visit downstairs for the first week or two. Most of us went home on diuretics, so frequent trips to the bathroom are pretty common. I also found the exertion associated with walking up stairs was exhausting in the beginning. Finally, you're going to be doing some intermittent sleeping during the day and at night in the first few weeks. You might find the second floor more conducive to your frequent napping. In a couple of weeks, you'll be able to freely go wherever you like, but keep the stair climbing to a minimum for a bit. Wishing you the best!

Grace Mason I agree with Susan, steps are doable but if no bathroom on first floor, I would probably spend more t ... Read more

Grace Mason I agree with Susan, steps are doable but if no bathroom on first floor, I would probably spend more time upstairs than down for a few weeks after surgery, at least.
Cute doggie!

Ana Brusso Mary, I totally agree with my little Angel 😇 Susan Lynn. At least for the first two weeks or four. ... Read more

Ana Brusso Mary, I totally agree with my little Angel 😇 Susan Lynn. At least for the first two weeks or four. Blessings 🙏❤️

Dan Fouratt I agree with Susan and grace about the bathroom but you also need to walk after. Not sure if the seco ... Read more

Dan Fouratt I agree with Susan and grace about the bathroom but you also need to walk after. Not sure if the second floor is conducive to that. Can you add a treadmill (used) to move. It looks like you have the room and I am sure there are used ones out there. After my surgery my treadmill was on the second floor and i made to pilgrimages to it each day to do a two hour slow walk the first week.

Mary Willett Thank you everyone!!! 1st, yes she is very cute little boxer dog. My Winnie. My husband told me ton ... Read more

Mary Willett Thank you everyone!!! 1st, yes she is very cute little boxer dog. My Winnie. My husband told me tonight he has a TV coming and a treadmill. So, now I just need to find a comfortable chair and a mini fridge. I appreciate the feedback so much. I agree that I will need to relax and the clutter and things like undone dishes and unvacuumed floors will make it hard for me to relax.

Yumiko Ishida My home is 3 stories but there is a powder room on the first floor. I essentially lived in the living ... Read more

Yumiko Ishida My home is 3 stories but there is a powder room on the first floor. I essentially lived in the living room where there is space for a recliner. Went upstairs to shower, and that was fine, but I agree with others that you’re not going to want to have to use the stairs every time you need to use the bathroom.

Mary Willett I agree!

Mary Willettposted a journal

6 days ago

This was last fall at Yellowstone National Park. I hope it back because I didnt see any wolves in my travels. I had my TEE (which was far worse than the angio) ...Read more

This was last fall at Yellowstone National Park. I hope it back because I didnt see any wolves in my travels. I had my TEE (which was far worse than the angio) and only need surgery on my aortic valve which is huge relief. I woke up from TEE and my teeth had been embedded in my upper lip and the swelling was ridiculous and I bit my tongue so hard my tongue is purple and still numb like I got a shot of novacaine and a huge sore to the bottom of my tongue. But, I am scheduled June 5th for surgery.

Marie Myers Sorry you experienced the bitten lip event! It does happen…

Mary Willettposted an update

20 days ago

I made my first post here yesterday and I am have a few comments that have raised some thoughts for me. How many of you have had 2 valves worked on? Were they ...Read more

I made my first post here yesterday and I am have a few comments that have raised some thoughts for me. How many of you have had 2 valves worked on? Were they done in one surgery? Thursday I had my R and L heart cath and I was told that the pressures in my heart are severely elevated, but my pulmonary hypertension is extremely high and while I have severe aortic stenosis, my cardiologists agree that my pulmonary valve has closed up again. I am getting a TEE next week to get a better view. I asked...ooohhh, then you can fix both valves at the same time? The surgeon said he will be doing each surgery in 2 seperate surgeries. A ballon valvuloplasty for pulmonary and because of my age I need an open surgery for my aortic valve. My mouth literally dropped open. He has also indicated best case scenario, I have both done within a month and not to wait much longer. I was supposed to start a new job next week and I was hoping to work 6 months before the surgery and he said time is not on my side. A big thank you to the ladies who have given something to think about.

Grace Mason I recommend more than one opinion.

Rita Savelis I'm sorry that you have to go through this. Sometimes things we don't plan for happen. Everyone is s ... Read more

Rita Savelis I'm sorry that you have to go through this. Sometimes things we don't plan for happen. Everyone is singular and yr heart valve issues are specific to you. I had my aortic and mitral valves replaced and tricuspid repaired in one open heart surgery. But the pulmonary valve is a different valve altogether.

Richard Munson I think when a doctor says time is not on your side, it bears listening to.

Daneen Douglas It sounds like the valvuloplasty may be a surgery that goes through your artery like a TAVR and not o ... Read more

Daneen Douglas It sounds like the valvuloplasty may be a surgery that goes through your artery like a TAVR and not open heart. Do they want to do that first so that the pressures in your heart are more stable for the open heart aortic valve replacement? So you may only have one open heart surgery. Definitely agree you should get a 2nd opinion.

John Cook There are probably a lot of mitigating factors, but it seems like doing both valves in one surgery sh ... Read more

John Cook There are probably a lot of mitigating factors, but it seems like doing both valves in one surgery should be possible. A Ross Procedure replaces the aortic valve with the pulmonary valve and then replaces the pulmonary valve with a cadaver valve. However, it’s a longer and more specialized surgery, not many doctors do it.

A hospital that does more heart surgeries might give you better options.

Mary Willett Thank you again. I appreciate all of the advice. I will research The Ross Procedure. Interested to ... Read more

Mary Willett Thank you again. I appreciate all of the advice. I will research The Ross Procedure. Interested to find out more since my pulmonary valve has been stenotic since birth. It has been 30 years since my last very sucessful valvuloplasty. I will follow doctors advice and do this ASAP.

Susan Lynn Mary - As long as you're seeking other opinions, you might want to ask why your aortic valve can't b ... Read more

Susan Lynn Mary - As long as you're seeking other opinions, you might want to ask why your aortic valve can't be replaced via a minimally-invasive side entry incision. I'm guessing you're too young for TAVR, but you still have other options. Beware: There are surgeons who often encourage the procedures they do rather than presenting all options that are available. Research is everything.

Mary Willett Thank you Susan. Thats great information. Something I would have never thought about. I did look a ... Read more

Mary Willett Thank you Susan. Thats great information. Something I would have never thought about. I did look at The Ross Procedure and it has to be a healthy pulmonic valve, mine is stenotic. I kind of feel like my back is against the wall. My cardiologist indicated its urgent, the one who did my heart cath says it needs to be done in 2-3 weeks, the surgeon says within a month. I feel like I need more time to seek out other opinions, however I do have a list of questions for my next meeting with the surgeon.

Susan Lynn Mary - Make sure you get a copy of the TEE on a disc (or a flash drive). You'll have an easier time ... Read more

Susan Lynn Mary - Make sure you get a copy of the TEE on a disc (or a flash drive). You'll have an easier time with your second or third opinions if the surgeons can see the valve, not just the report. I don't want to contradict the feedback you've been given regarding the urgency for surgery, but we're always a little suspicious when the patient is being rushed to make a decision. I'm not sure how they made such an assessment without the TEE. Start reaching out to other surgeons now. You can tell them you'll be forwarding the TEE in the next week. Sometimes it can take awhile to get an appointment. You might also want to see which surgeons and hospitals are covered by your insurance. Your best option may be to leave your immediate area for the best treatment, but it's good to find out if that's even an option.

John Cook Yeah, a Ross is probably not the surgery for you since you have a damaged pulmonary valve. However, s ... Read more

John Cook Yeah, a Ross is probably not the surgery for you since you have a damaged pulmonary valve. However, surgeons who do Rosses would be the ones most likely to be able to do two valve replacements in one surgery.

Also, I wish I had gotten my CT-A on a drive for my surgical referral like Susan said. It took a long time for me to get my CT-A transferred from the clinic who did it to the hospital for my surgical opinion.

Good luck.

Yumiko Ishida I would definitely get a second or even a third opinion. I got a valvuloplasty for my mitral stenosis ... Read more

Yumiko Ishida I would definitely get a second or even a third opinion. I got a valvuloplasty for my mitral stenosis, first attempt failed due to clot forming during the procedure, the second one was successful, but it didn’t help my stenosis much and caused regurgitation, which I did not have before. I had the valve replaced via sternotomy less than a year after the supposedly successful valvuloplasty. Valvuloplasty is a very imprecise procedure, not even considered a surgery. Looking back, I wish I didn’t bother with it. Sternotomy is much safer.

Mary Willett Thanks Yumiko. After further testing, I dont need to do anything with my pulmonary valve now. You h ... Read more

Mary Willett Thanks Yumiko. After further testing, I dont need to do anything with my pulmonary valve now. You have made me see how fortunate I am to have had a very sucessful valvuloplasty 30 years on my pulmonary valve and its still holding at only mild stenosis.

Yumiko Ishida That is good news! It’s amazing that is it still good after 30 years.

Mary Willettposted a journal

21 days ago

Mary Willett reacted to this

I found out Thursday after R and L heart cath that I need 2 seperate heart surgeries. A pulmonary valvuloplasty and an open heart aortic valve replacement. ...Read more

I found out Thursday after R and L heart cath that I need 2 seperate heart surgeries. A pulmonary valvuloplasty and an open heart aortic valve replacement. Feeling very overwhelmed

Deena Z It is overwhelming and frightening. Knowledge and research, for me, helped ease the emotional part. ... Read more

Deena Z It is overwhelming and frightening. Knowledge and research, for me, helped ease the emotional part. Though it is always there. Know that open heart surgery now has incredible success rates. I focused my head a-lot on that.. Pick the best surgeon and hospital you are willing to travel to. A little extra travel time to a hospital of excellent in this area will make your recovery that much better. Be picky!

Rose Madura Great advice from Deena. Do lots of research and don't underestimate the value of a second opinion. ... Read more

Rose Madura Great advice from Deena. Do lots of research and don't underestimate the value of a second opinion.

Susan Lynn Mary - As Deena said, it's overwhelming to find out you need surgery. But, as Rose said, don't und ... Read more

Susan Lynn Mary - As Deena said, it's overwhelming to find out you need surgery. But, as Rose said, don't underestimate the value of a second opinion. Most surgeons don't want to subject patients to two separate surgeries on their hearts. Many of the folks on this site have had two procedures and even multiple valves fixed simultaneously. I'd definitely find out the reasoning from your current physician. Please keep us posted on your progress. Whatever is ahead of you, you'll get through it just like we did. All the best!

Mary Willett Thank you ladies!! You have raised enough questions for me that I made another post asking about peo ... Read more

Mary Willett Thank you ladies!! You have raised enough questions for me that I made another post asking about people who have had 2 valves worked on. ❤️