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

[EMJEF]

Hi Amy,

I use a Coagucheck XS machine but phone in my results to the anticoagulation nurse at the hospital and then they either call me to change my dose or send out a letter if things are staying as they are. I then go with my machine every 6 months to check it’s still testing in range against theirs. This is part of the agreement I had to sign when being accepted onto the self-test group. Might be different for you though as I’m on UK.

Can’t really advise against rest as it’s over 30 years since my last OHS. I’m currently waiting for the call to come in to have my St Jude replaced with another mechanical aortic valve.

 

[dornole]

Pellicle will definitely suggest kimchi for the constipation. : ) My personal approach in hospital was to profusely thank everyone for their care of me and for choosing medicine as a profession. I was in ICU for 5 days and mostly too tired to care about or monitor anything. Just rested and trusted.

 

[Amy]

to have my St Jude replaced with another mechanical aortic valve.

why does that happen?

 

[Amy]

Pellicle will definitely suggest kimchi

I have kimchi written down already, ha ha. I just thought if there were a drug that would be best avoided too, I’d like to know.. I just don’t know if I’ll be brave enough to piss everybody around me off with the smell of kimchi in my hotel room.

 

[EMJEF]

why does that happen?

I had my current valve put in when I was almost 4 (which was over 34 years ago). I was one of the youngest in the world to have it done at that time. My surgeon put in the largest valve he could at the time - 19mm - and hoped it’d last my lifetime but was always just a waiting game. Since then I’ve grown up and had a son (who’s now 6). The pregnancy and growing from a small child to an adult pushed the valve to the limit and now I’m suffering with increased regurgitation. If I’d been older when I’d had my original surgery, it’s more likely I’d not have needed a second replacement as I wouldn’t have had as much growing to do. But am hopeful that after my next surgery, I’ll not need full OHS again.

 

[pellicle]

Pellicle will definitely suggest kimchi for the constipation. : )

indeed!

its great !! (even normally with a nice feed of Korean bulgogi)

 

[Unicusp]

Hello Amy - some thoughts...

1. Still managing my INR. Don't worry about it until you are on the other side. It's not that complex. Pretty simple.

2. No. You will not be taking showers! My first shower was about an hour before I left the hospital. Wash cloths etc..

3. The commonly used anesthesia and stronger pain relievers do cause constipation in most people. That is why I recommended a careful special diet for the day before your surgery (in our private chat). The suggested light diet included; high protein greek yogurt, quaker oats squares cereal w/almond milk or oatmeal. Stop all food by 8pm (or earlier) night before surgery. Drink plenty of water.
After surgery, ask for Miralax/Dulcolax from day 1 with your daily meds. Also ask for Musinex (Guaifenesin) from day 1 to help loosen mucus from your lungs and reduce coughing. Believe me, coughing is the most painful thing you can do in the first week.

4. I had a visitor staying in my room during my first surgery and none most recently. Honestly, I preferred no one staying there. All you are going to want to do is rest and when awake try walking. The last thing you need is someone sitting there expecting you to talk. It will be very boring for them too.
You can fully trust the nurses and doctors, staff etc.. Just relax and trust them. They know what they are doing. They will wake you as needed. Otherwise keep the shades on and ear plugs in.

Med changes; you need to listen to your body. If you have bad side effects (like I had chills, sweats, hallucinations and no real pain relief) I asked for alternatives. So, I went from fentanyl to dilaudid which seemed to work better. I preferred morphine but they don't use it there anymore. It was great in 2013!
The regular acetaminophen in higher doses seemed to work well too.

Do you have your surgery scheduled yet?

 

[Chuck C]

Hello Amy - some thoughts...

1. Still managing my INR. Don't worry about it until you are on the other side. It's not that complex. Pretty simple.

2. No. You will not be taking showers! My first shower was about an hour before I left the hospital. Wash cloths etc..

3. The commonly used anesthesia and stronger pain relievers do cause constipation in most people. That is why I recommended a careful special diet for the day before your surgery (in our private chat). The suggested light diet included; high protein greek yogurt, quaker oats squares cereal w/almond milk or oatmeal. Stop all food by 8pm (or earlier) night before surgery. Drink plenty of water.
After surgery, ask for Miralax/Dulcolax from day 1 with your daily meds. Also ask for Musinex (Guaifenesin) from day 1 to help loosen mucus from your lungs and reduce coughing. Believe me, coughing is the most painful thing you can do in the first week.

4. I had a visitor staying in my room during my first surgery and none most recently. Honestly, I preferred no one staying there. All you are going to want to do is rest and when awake try walking. The last thing you need is someone sitting there expecting you to talk. It will be very boring for them too.
You can fully trust the nurses and doctors, staff etc.. Just relax and trust them. They know what they are doing. They will wake you as needed. Otherwise keep the shades on and ear plugs in.

Med changes; you need to listen to your body. If you have bad side effects (like I had chills, sweats, hallucinations and no real pain relief) I asked for alternatives. So, I went from fentanyl to dilaudid which seemed to work better. I preferred morphine but they don't use it there anymore. It was great in 2013!
The regular acetaminophen in higher doses seemed to work well too.

Do you have your surgery scheduled yet?

" I preferred morphine but they don't use it there anymore "
I had a kidney stone years ago. Pain level was a 10 for 4 hours as I waited in the emergency room. When I finally got in to see the doctor they gave me Demerol. It was like "What kidney stone?" Great stuff.
Two years ago I had an orbital blow out fracture in my left eye with muscle entrapment - again extreme pain. Remembering the kidney stone experience, I begged them for Demerol in the ER and they gave it to me. Worked great again. But, my pulse dropped to a level that concerned them- to about 45. I tried to explain to them that my resting pulse was about 52 and that this was well within the normal range for me- I am often in the 40s when I first awake. I guess they didn't believe me, because they gave me something to counter the Demerol and would not give it to me again. So, the extreme pain returned. They gave me some norcos every few hours which helped little.

 

[Amy]

You will not be taking showers!

I mean after I leave the hospital - will I be strong enough to not need to sit down, under the hot water, after just a minute or two? Will I be that exhausted that easily?...

Do you have your surgery scheduled yet?

yep. I have exactly two weeks to learn everything I need to, including super-zen master meditation training to calm my anxious mind.

Thanks for the specifics about drugs to request. Of course I remember what you said all about dinner the night before - it’s all in my trusty notebook. Thank you, for all of it.

 

[Amy]

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.

 

[Amy]

Chuck -

I thought I was a rare one in having fond memories of Demerol-induced relief from pain! : ) I was 18 and so in pain from what mayve been a bursting ovarian cyst, I didn’t care at all that my ass was on display for half the ER lobby while they stuck me with an injection. Thats the last I remember.... : )

 

[pellicle]

tried to explain to them that my resting pulse was about 52 and that this was well within the normal range for me- I am often in the 40s when I first awake.

Bodes well for a smooth recovery

 

[John K]

Unless you plan to take a very long shower you shouldn't have any issues. They will have you up and walking around before you leave the hospital and will probably give you the opportunity to shower while there.

John K

 

[Justmadi]

1. And this is only my opinion.....
they will get your warfarin level to acceptable level before you leave,but you will want a doctor to help initially to keep it in range. I would suggest staying with a doctor, or anticoagulant clinic for a couple months so YOU see how it is adjusted. It can be a little tricky depending on your chemistry. Everyone is a bit différèrent. For example, I know I adjust to changes very dramatically.
how do you find the doctor who is proficient in anticoagulant? Word of mouth may be the best.

the monitor does come with a manual but it does not help with any dosaging.
You can order one off E Bay any time.

2. I didn’t need a shower chair. I was very mobile.
3. After my second OHS, I was given a drug that made me really drowsy and hallucinogenic. It’s in my records now that I never want that again(sorry, name is escaping me) thank goodness my sister was there and said to get me off that. So....you may want to keep an eye out for being TOO drugged after. It’s so hard when you can’t have an advocate!. However, on the bright side...the pain really wasn’t bad.
I went home on day 5 with only Tylenol 3 (Tylenol with codeine) and only used this at night sometimes to help sleep. Finding a comfortable position was challenging.

This is rather delicate...First OHS I chose a laxative to get me moving. Big mistake. I made trip after trip to toilet.
2nd OHS I chose enema. Messy but it was one and done.
4. as I mentioned pain wasn’t bad. Don’t overlook the old standby of an ice pack. I remember that a tube incision on my shoulder didn’t respond to pain medication. But it DID help to put an ice pack on it!

One last thing, and I think this is pretty standard. The hospital sent me home with a stuffed bear called Sir Coughs-a-lot. I was to squeeze the bear if I had a sneeze or cough. Coughing or sneezing after a sternotomy can really hurt!
FYI...my 2 OHS were done at UW hospital in Madison, WI. They are excellent.

 

[dornole]

But, my pulse dropped to a level that concerned them- to about 45.

Ha relatable. When I was in ICU for the 5th day and feeling pretty chipper they said they were wanted to see my Bp at 100/60 before letting me go. I said, well that’s gonna a be a while since it’s usually there when I’ve been walking around not lying down for 5 days.

 

[Amy]

wanted to see my Bp at 100/60 before letting me go. I said, well that’s gonna a be a while

Hey, that reminds me! Do you guys take your blood pressure more frequently, or is there reason to, with an artificial valve? What kind of change can I expect after the avr? I never take mine, & couldn’t even tell you what my average is, other than they tell me it’s a bit low. This is something else to learn, isn’t it? Sigh. I never thought I’d say this, but I’m so tiiiired of leeeaaaarrrrnniiing...... I’ve been reading so much my eyes are about to fall out.

 

[Amy]

Justmadi -

Lots of good advice - thank you so much!!!

I’ve never used an enema or laxative, (other than Tums for a stomachache, before I discovered plain ol ginger) soooo that should be interesting..... : )

thank you again!!!!!!

 

[Amy]

John k -

I do plan on taking a very long shower, especially if I can’t for four or five days in a row. I’m the type that cannot even function until I’ve had a shower. I don’t know how I’ll survive that part, but hopefully I’ll be so busy sleeping and healing and doing laps around the building I won’t even notice. Guess I could always just sit down on the floor of the shower. Like they did in the olden days, before shower chairs.

 

[user 15848]

Ok fellow valvers, more questions:

1. If you self-manage your INR, what was the timing of getting a device and becoming competent in adjusting Warfarin dosage? Would it be better to get a device before surgery? Does it come with a manual? Is that manual your most helpful source in determining dosage adjustments? How do I know whether the doctor I choose knows anything about adjusting INR?

I bought it at the hospital pharmacy at Discharge, but it would good to have it before you get to the hospital, just for peace of mind to have it.
Warfarin, keep an steady diet for first 3 months, no big changes, and from there you will learn how "you" interact with it, no big deal
The Coagucheck is very eassy to use, and ROCHE support "doe work" you can call them any time
Lots of videos here and everywhere on how to .
The dosage, you will follow what your surgeon/hospital tells you, and have a target "range" , for me is 2.0 - 2.5, for others is different;
IF you can, manage the inr yourself, of close one to help you document it, i use spreasheet file for it since 2015
Pain ?, we all react differently to pain; for me was not big deal, but it is always better to get the pill before pain starts, if and when it does show
Nurses are very good in those wards, that is whay they see everyday, and you will see there dozeens of people following your same recovery

Hope this help, All the Best !, you will be fine.

 

[Chuck C]

John k -

I do plan on taking a very long shower, especially if I can’t for four or five days in a row. I’m the type that cannot even function until I’ve had a shower. I don’t know how I’ll survive that part, but hopefully I’ll be so busy sleeping and healing and doing laps around the building I won’t even notice. Guess I could always just sit down on the floor of the shower. Like they did in the olden days, before shower chairs.

When I entered the hospital I already needed a shower badly because I had just done 12 rounds of boxing- the injury was due to an eye injury while sparring. In recovery from eye surgery, they told me no showering. It did not make much sense to me, as I managed to move about fine. When I asked them about the rule they said it was a precaution in case I became light headed while showering and also they did not want my eye to get wet.
After a couple days I said screw it and showered. The nurse came in as I was getting out of the shower, oops- free show. I apologized and assured her I was real careful not to get my eye wet. She just laughed.