Imminent AVR - 40 y.o. female - advice please

[Zoltania]

Hi Amy,

As you probably saw me mention in another thread, I used a shower seat at home for the first few weeks. I also bought a home blood pressure cuff and a bathroom scale. (My cardiologist had me taking my blood pressure twice a day and recording it for the first couple of months. I haven't had to pay attention to my B.P. since then.)

With respect to medications, the potassium pills I had to take at first were enormous and hard to swallow, even when cut in half (which gave them sharper edges). I seem to recall someone here mentioning that a liquid alternative is available. You might ask about that.

I didn't feel the need for someone to stay with me overnight in the hospital. The nurses were responsive if needed, and I was glad to have a little bit of peace and to know that my loved ones were getting some rest too.

My must-haves in the hospital were a tablet, charger, reading glasses, lip balm, and underpants to wear after the catheter was removed. My sister brought me a robe which was nice to wear over the hospital gown when I was walking my laps on the unit.

 

[AZ Don]

Hi,
Just catching up on this thread. To shop around for Doctors I use Find a Castle Connolly Top Doctor, search for Cardio-Thoracic surgeons, and also HealthGrades You mentioned limited Dr's in your area. I think I saw you were in Arkansas so you might find more choices if you are willing and able to travel to Texas. https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery/texas.

1. NA - my OHS was a valve sparing aneurysm surgery
2. I did not need a shower chair. I was walking laps around the floor before I left the hospital.
3. I think I received Percocet for pain and Dulcolax for constipation. It took at least a day or two (maybe 3?) for the constipation meds to kick in. I was also given Tylenol or Advil for pain. I really didn't need the Percocet and only took it a couple times. There were other meds as well, I think heparin, metoprolol, and probably a few others.
4. Hopefully you are able to choose a hospital with a high level of care and low level of mistakes. You need to trust the professionals around you to care for you but also speak up and share your preferences and/or concerns. The only mistake I ever caught in a hospital was after a different surgery a nurse brought an intern in to remove stitches. After washing her hands, the intern's phone rang and she checked it and then put it away. She then approached me to remove the stitches and I told her she needed to wash her hands again after touching her phone.

After I was home, although I did have help, I could do everything that I needed to on my own, except drive. One thing that I could not do was lie flat on my back or sleep on my side as I usually do. I used a recliner to sleep in for about a month.

 

[Amy]

Thanks, AZ Don. I've read on this forum that some people couldn't even open their fridge for weeks after their AVR, so that's why I'm asking about the shower chair.

Did lying flat or on your side pull at your stitches in front, or what? Just curious.

 

[AZ Don]

Did lying flat or on your side pull at your stitches in front, or what? Just curious.

It caused pain in the sternum, or maybe the muscles in that area. I really didn't have much pain post surgery, even pulling open doors or reaching overhead which I read some people had trouble with, but things like coughing, sneezing, or trying to lie flat were definitely painful. It is different for everyone but I expect most are likely to have pain if they are putting pressure on the sternum or using those muscles to any extent.

 

[Unicusp]

"With respect to medications, the potassium pills I had to take at first were enormous and hard to swallow, even when cut in half (which gave them sharper edges). I seem to recall someone here mentioning that a liquid alternative is available. You might ask about that.
[/QUOTE]
Regarding Potassium tablets. They usually do give quite a few and they are large uncoated tablets that like to get stuck in your throat. The best way I found to take them? Ask for apple sauce. They dissolve, you mix, and don't even taste them.

 

[Chuck C]

Hi,
Just catching up on this thread. To shop around for Doctors I use Find a Castle Connolly Top Doctor, search for Cardio-Thoracic surgeons, and also HealthGrades You mentioned limited Dr's in your area. I think I saw you were in Arkansas so you might find more choices if you are willing and able to travel to Texas. https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery/texas.

1. NA - my OHS was a valve sparing aneurysm surgery
2. I did not need a shower chair. I was walking laps around the floor before I left the hospital.
3. I think I received Percocet for pain and Dulcolax for constipation. It took at least a day or two (maybe 3?) for the constipation meds to kick in. I was also given Tylenol or Advil for pain. I really didn't need the Percocet and only took it a couple times. There were other meds as well, I think heparin, metoprolol, and probably a few others.
4. Hopefully you are able to choose a hospital with a high level of care and low level of mistakes. You need to trust the professionals around you to care for you but also speak up and share your preferences and/or concerns. The only mistake I ever caught in a hospital was after a different surgery a nurse brought an intern in to remove stitches. After washing her hands, the intern's phone rang and she checked it and then put it away. She then approached me to remove the stitches and I told her she needed to wash her hands again after touching her phone.

After I was home, although I did have help, I could do everything that I needed to on my own, except drive. One thing that I could not do was lie flat on my back or sleep on my side as I usually do. I used a recliner to sleep in for about a month.

"After washing her hands, the intern's phone rang and she checked it and then put it away. "
Wow, just wow!. Good thing you noticed it and told her to wash her hands.

"One thing that I could not do was lie flat on my back or sleep on my side as I usually do. I used a recliner to sleep in for about a month."

I just sort of remembered, that my bed can adjust like a hospital bed. When I bought my sleep number mattress they had a special to get the hydraulic bed included for just a little more. My dad swears by his and encouraged me to spring for it, as he sleeps better with a slight incline. Well, turns out I did not care for it and found I preferred to keep it totally flat- so flat it has remained for 6 years. I just remembered that it has that feature. From what I am hearing about how folks feel more comfortable sleeping in a recliner after surgery, it sounds like this might come in handy for me in a couple of weeks.

 

[Chuck C]

It caused pain in the sternum, or maybe the muscles in that area. I really didn't have much pain post surgery, even pulling open doors or reaching overhead which I read some people had trouble with, but things like coughing, sneezing, or trying to lie flat were definitely painful. It is different for everyone but I expect most are likely to have pain if they are putting pressure on the sternum or using those muscles to any extent.

"things like coughing, sneezing, or trying to lie flat were definitely painful."

I've fractured ribs twice in sports. These things were very painful for me as well, although I recall lying flat was not a problem. Now, getting out of bed with the fractured ribs- that was one of the most painful aspects.

Has anyone had fractured ribs and how did the pain from that compare to recovery from OHS for you?

 

[pellicle]

Has anyone had fractured ribs and how did the pain from that compare to recovery from OHS for you?

I broke / cracked 2 ribs falling onto the side of the bath. On a scale of 1 to 10 (with AVR Sternum @10) I'd rate the ribs about 3

At my hospital they gave me a tightly rolled up towel (taped up) and was instructed in how to hold that tight when I was going to cough.

Don't eat anything you suspect will cause you to cough (you'll have a few dozen small reasons to cough every day anyway). I soon learned how to "low speed" exhale-a-cough to clear up fluid from my lungs ... I suggest you will too ;-)

 

[DachsieMom]

In the us, most insurance companies make you wait to home test. I think it was 3 months post surgery
I did not use a shower chair, but holding my hair dryer was a bit difficult for a few days. It’s surprisingly heavy lol!
I did not need anyone with me overnight at the hospital. The hospital had plenty of wonderful nurses. I had cable tv and a private room. I was good.
I was on warfarin and metaprolol after surgery but it turned out I was allergic to metaprolol. My hands peeled and developed this weird hard shell. I went off of it at 5 weeks.
I was on pain meds. I took those until my doctor said to switch to Tylenol, which was fine.
I did have trouble opening front doors, the dishwasher, the refrigerator etc. but I have a huge refrigerator with suction. It was better about 2 weeks post op. I also needed a walker for a bit as some tube must have irritated a nerve in my leg. It resolved fairly quickly, but I was able to have a home health nurse come take my INR twice a week and give me therapy. The physical therapy really helped.
If you can, do cardiac rehab.

 

[Superman]

In all fairness, I understand they’ve come a long way with adhesives, minimally invasive techniques, and other surgical products compared with the bread ties many of us had holding the sternum together back years ago.

In my hospital stays I was provided a heart shaped pillow to hug if I had to cough or sneeze. It was medically proven to help. Or something. I think I still have it in a box somewhere.

 

[Mister_James]

Hi Amy,

I think you are worrying too much...lol.

That said...the 2/3 day post surgery stay aims to get your INR in range and to make sure your bowel movements and you can comfortably walk around.

Your cardiologist will have you do clinic runs for INR testing until he is comfortable that you are in range and then hook you up with a service that will send someone over to show you the machine and how to use it.

You will get sponge baths while tubes are in but once they are out (a day or two) you can enjoy showers keeping the area dry.

Most of these things will be done almost on auto-pilot. Your contribution would be to stay calm, get your strength and blow into that damn spirometer.

 

[dornole]

I don’t take my Bp or monitor it at all besides annual physicals.

 

[EMJEF]

EMJEF -

Ahhhh. Gotcha. So that’s why you’re hanging around here with us. : ) wow! What a story. So amazing. That must be a homograft? To last so long, but let you carry a pregnancy? Anyway, I’m glad you’re here and hope you have a smooth process and as great, and better, of a result as you’ve had so far.

No, my current valve is a 19mm St Jude mechanical valve. During my pregnancy I had to stop taking warfarin and start with tinzaparin injections twice a day, which was fun!

 

[Amy]

Hey guys -

Just an update. I can finally focus my eyes to post something. It’s post-op day 5. I have a 23mm St Jude mechanical aortic valve, & they did a valvuloplasty, too, which apparently means they sewed over the larger, bulging part of the ascending aorta to keep it stronger and maybe prevent it from dilatating as fast as it otherwise would’ve. In the spot that was 3.8-4.0, it’s now 3.6.

I was potentially getting discharged today when the morning INR came back at 1.5 again. Now I’m on a 7ml/hr heparin drip; the plan is to check PTT levels every 6 hours, & adjust the heparin IV; and stay on 5 mg of Coumadin at night & check INR every morning.

What a freaking whirlwind this has been! So much drama! I had prolonged (few minutes, not seconds) episodes of atrial tachycardia after the cardiac cath two days before the AVR (doctors all differing in opinion on whether it was the extra nitroglycerin doses they gave or the extra versed/fentanyl when my radial artery spasmed and they had to use the groin- which developed a hematoma & is still one giant purple bruise.) so I had to spend the night in ICU even before the valve surgery!...

Then, after the surgery, whether due to a collapsed lung or the fentanyl pca, (or one of the chest tubes now that I think of it) I couldn’t breathe well & developed like a sleep apnea - so as soon as I lost consciousness I’d jolt awake, unable to breathe - this continued all night. My oxygen saturation was fine, and the nurses insisted I was fine, but I couldn’t breathe and had a hard time getting anyone to see that that was the least bit concerning. Finally finally they called a respiration nurse who also quite detachedly said what I was experiencing was normal. I begged her to think of anything that might help, and she eventually arranged a pillow on my left side so I could lean on it and then I fell asleep for an hour.

Once in the stepdown unit I had a couple days of sharp, electric nerve pain in the back of my right upper arm whenever I changed position or wasn’t in the right position. It felt like someone was ripping a vein out of my arm, or slicing through the skin with a knife. All that and the difficulty breathing went away when the two chest tubes came out.

On the plus side, lol, it does pass. And.... now its over! And I don’t have to worry about my diseased valve and how long till I have to get it fixed. And I’ll feel better. It’s only post-op day 5 and I already feel pretty great. Like maybe I’ll even be able to swim and run after this. And I get two weeks without having to cook or do any chores, lol.

 

[Amy]

Here’s my inr and warfarin chart so far.

 

[Chuck C]

Hey guys -

Just an update. I can finally focus my eyes to post something. It’s post-op day 5. I have a 23mm St Jude mechanical aortic valve, & they did a valvuloplasty, too, which apparently means they sewed over the larger, bulging part of the ascending aorta to keep it stronger and maybe prevent it from dilatating as fast as it otherwise would’ve. In the spot that was 3.8-4.0, it’s now 3.6.

I was potentially getting discharged today when the morning INR came back at 1.5 again. Now I’m on a 7ml/hr heparin drip; the plan is to check PTT levels every 6 hours, & adjust the heparin IV; and stay on 5 mg of Coumadin at night & check INR every morning.

What a freaking whirlwind this has been! So much drama! I had prolonged (few minutes, not seconds) episodes of atrial tachycardia after the cardiac cath two days before the AVR (doctors all differing in opinion on whether it was the extra nitroglycerin doses they gave or the extra versed/fentanyl when my radial artery spasmed and they had to use the groin- which developed a hematoma & is still one giant purple bruise.) so I had to spend the night in ICU even before the valve surgery!...

Then, after the surgery, whether due to a collapsed lung or the fentanyl pca, (or one of the chest tubes now that I think of it) I couldn’t breathe well & developed like a sleep apnea - so as soon as I lost consciousness I’d jolt awake, unable to breathe - this continued all night. My oxygen saturation was fine, and the nurses insisted I was fine, but I couldn’t breathe and had a hard time getting anyone to see that that was the least bit concerning. Finally finally they called a respiration nurse who also quite detachedly said what I was experiencing was normal. I begged her to think of anything that might help, and she eventually arranged a pillow on my left side so I could lean on it and then I fell asleep for an hour.

Once in the stepdown unit I had a couple days of sharp, electric nerve pain in the back of my right upper arm whenever I changed position or wasn’t in the right position. It felt like someone was ripping a vein out of my arm, or slicing through the skin with a knife. All that and the difficulty breathing went away when the two chest tubes came out.

On the plus side, lol, it does pass. And.... now its over! And I don’t have to worry about my diseased valve and how long till I have to get it fixed. And I’ll feel better. It’s only post-op day 5 and I already feel pretty great. Like maybe I’ll even be able to swim and run after this. And I get two weeks without having to cook or do any chores, lol.

Thanks for the update Amy! Great job! I'm trying to understand why they held your warfarin on day 5? It looks like your INR never rose above 3.

 

[EMJEF]

Fab news to know you are on the positive side now, Amy. Thanks for the update

 

[newarrior]

I was diagnosed with congenital severe aortic stenosis, at birth, I believe, and have been following it all this time, until Monday when the cardiologist noted a big jump in numbers and said "It's time." Current peak aortic valve gradient = 103.9 mmHg; mean = 63.3 mmHg. Two and a half years ago, when I last saw him, it was peak = 64 mmHg; mean = 41 mmHg. His words: "It's not an emergency, and it's not urgent, but you should have AVR surgery done in the next FEW WEEKS (!?) or at most few months, but before summer."

I have so many questions; and unfortunately am not confident my doctor either can or will answer them. I've learned a lot from the forum already, but now I want to ask a few more specific questions:

1. I went in because I had had chest pain that woke me up from sleep for 5-6 nights in a row. The cardiologist at first said he didn't think it was related to my AS; after viewing the echo he said he thought it WAS... Has anyone else had this? Did it end up being an indication that things were much worse than you thought? (trying to avoid that sudden death thing)

2. I usually deny any symptoms on exertion, (and symptoms at rest that I'd report were always dismissed by cardiologists) though I now think my exercise tolerance must have gradually gotten worse, and with that, shortness of breath walking up hills, etc. With turning 40 I maybe also thought I was just getting old or out of shape... But now I've been told it's time for surgery, that things have progressed/gone downhill, I feel every single pain, ache, twinge and arrhythmia in my heart; along with every episode of gasping for a breath, even at (particularly at) rest. If they are from the AS (which I more and more suspect they must be) - how bad of a sign is this? Would wearing a Holter for 24 hours give any information as to whether I can stop worrying about them or not? How do you know whether skipped/extra beats are benign or not? What kind of chest pain, at rest, is the worrisome kind for someone with severe AS?

3. Do I really need an "Adults with congenital heart disease" surgeon? There's only like, one of those in my state, from what I can tell, and he, as the doctor put it, 'has a preference for tissue valves' and would not offer me a mechanical one. 'At 40?' I asked. 'Yes'. This leads me to my next question, which is

4. Who are the best surgeons for congenital AVR with a mechanical valve? Can someone recommend a great hospital, in your experience, to have congenital AVR surgery done? How common/safe is minimally invasive surgery (I mean with a smaller incision in the chest, not TAVR) for AVR these days? If it is as safe as a full sternotomy, how can I find a surgeon willing to do this?

5. Should I have a test done beforehand to see if I react badly to Warfarin? What test?

6. I read or heard somewhere that 60% of clinics prohibit patient INR self-testing, presumably for financial reasons (they want you to come in). Um... WHAT??? Should I be concerned about this? I totally want to self manage my INR levels.

7. What INR self-check device is the best, in your experience? Where can I get it?

8. I remember reading about OHS and the menstrual cycle, and how timing could even affect mortality. (!) Has anyone here attempted to time their surgery in this way? If there's anything I can do to offset the higher risk associated with having OHS as a female, I want to do it.

Thank you for reading this far!! Any tips, suggestions, thoughts will be greatly appreciated.

And thank you all so much for teaching me through your posts here, blog posts elsewhere; links, videos and funny pictures shared.... Without you all I would be in full panic mode right now, finding myself living in Arkansas of all places when it's finally time for the surgery.

I am moderate tricuspid AS and am having similiar symptoms and worry as well..Do echoes and ekgs every 6 months...Echo.echo stress tests every 12 months..MRI 7 weeks ago,,,Everything good...Diagnosis, "Atypical chest pain" stress or Costochondritis (kos-toe-kon-DRY-tis) is an inflammation of the cartilage that connects a rib to the breastbone (sternum). Pain caused by costochondritis might mimic that of a heart attack or other heart conditions.

 

[newarrior]

Honestly, I don’t have a ton of experience shopping around, except for cardiologists. There it’s just looking at bios online. Nothing wrong with interviewing them either. It helps that my wife is a medical professional and these folks have reputations. As far as surgeons go- I was a teenager for my first surgery and it was no question mechanical back in 1990. I didn’t have much say but was placed in the very capable hands of Dr Seong Chi, who was a pioneer of open heart surgery in Mid-Michigan. They’ve since named that part of the hospital after him and his wife (also a Dr).

My second surgery in 2009 was due to an aneurysm. My surgeon was a big believer in tissue valves and everyone would be getting TAVR’s in 10 years anyway. A co-workers husband had just had a valve/graft done by him the year before I did. I told him I want a one piece valve / graft from either On-X or St Jude. St Jude had served me well up to that point, On-X didn’t make a one piece yet, so St Jude it was. He was very open to a collaborative approach despite his personal preference. Gave me confidence that he was comfort with his abilities.

As much as shopping around can be good, simply being your own advocate can be better. Surgeons can be arrogant and uncompromising- but ask my Coumadin clinic about me. . I’ll bet there are notes in my file. (“Here’s what I did, this is what I’m doing next week, update the chart. Call me in some 5’s and 1’s. I’ve been at this 30 years. When did you start?”). Okay - I’m more polite then that - but I am comfortable giving input about what I think makes sense for me.

"Surgeons can be arrogant and uncompromising" Horrifying....Glad you are being your own advocate

 

[Amy]

trying to understand why they held your warfarin on day 5?

Oh yeah, forgot to say - and I wanted to ask you guys about this. They held the warfarin for a day because I was getting the pacing wires pulled out the next day; and since I’d gone up to 2.4 so quickly, they thought I’d be too high (and might have a bleeding complication I guess). I thought at the time, “is that really necessary, since the effect from holding warfarin might not be seen for days...?” but deferred to their judgment... on that one...