A week after surgery, my story

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dreamy885

Well-known member
Joined
Apr 21, 2017
Messages
68
Location
Des Moines, Iowa
I made a post on Pre-surgery and continued it, but I figured it was more appropriate to just start a new post here. (My surgery was May 12th 2017)
Surgery lasted about 6-7 hours, I woke up in ICU, not able to open my eyes, and a mouth more dry than the Sahara desert. I could hear my family and they offered me ice
chips, which I eagerly took. Someone wiped my eyes with a wet washcloth and I was finally able to see a little bit. I wasn't awake too long before I needed to ask for a puke
bag. Luckily I wasn't full-on retching, just more burping up water than anything, so it wasn't too bad. I found myself alternating between whispering, "ice...morphine" and then
burping/throwing up water into my little bag and asking if they would wipe my chin. I was afraid to look at my incision, I of course don't remember seeing my old one fresh and
I thought it would upset me. I was afraid to ask if he was able to repair my mitral valve instead of having to replace it. The aorta needed replaced no matter what and we were
going mechanical (St. Jude) with that one. It turned out that he was able to repair it, thankfully. Two mechanical valves, especially one in the mitral position puts you at a very
high risk of blood clots. They put lidocaine patches next to my incision on both sides, I had high hopes for them but I still felt like I had been sawed in half. It seemed like a very
short time before they told me they were going to want me to sit up on the side of my bed. I thought they were crazy and I had zero motivation to follow through with this absurd
request. Eventually they came in and said it was time, but they basically pulled me up. Then I asked for my puke bag, got sick and laid back down.

I remember the tv was tiny and near the door, hard for me to see. I focused on the clock instead. I thought, the time just needs to pass and I'll feel better. I'd shut my eyes.
Family and nurses would feed me ice chips and jello and pills inside my applesauce. I would rest for what felt like hours, open my eyes to find that only 5 minutes had gone by.
That was a hard time for me, never understood how that worked. My sister stayed by my side, even if she were sleeping, she would hear my quiet requests for more ice and
to wipe my eyes. Just when I thought I was handling the pain okay enough to somewhat rest, they would empty my drain catcher and "milk" the tube and it would send horrible
pain up into my shoulders, matching, if not surpassing my sternal pain. I would complain but it didn't seem to matter, they had to empty it. After two days I learned that it doesn't
hurt if they only empty it and don't milk it, so I started demanding that they only do that. The next day I walked (shuffled is a better word), only made it to the nurses station and
back. The next time I walked I went clear around half the nurses station and back, I was motivated to work hard to get better. I spent two days in ICU and then moved to the
Telemetry floor on Mother's Day, which was perfect because I didn't want my boys to see me in ICU. They took the contraption out of my neck that my sister was disturbed by.
They had to replace it with an IV and my veins weren't cooperating...to avoid being stuck over and over, I told them to put it wherever would work, they chose my left inner elbow.

I don't think I needed my sick bag anymore once I got up to my new room, but I always kept it close in case. They had me on all sorts of meds; aspirin, warfarin, stool softeners,
something to coat my stomach, beta blockers, a water pill, something for nausea, tylenol and for a short time "Roxi." That night into morning was rough, I became very light-headed
and complained to my nurse about it. My bp had dropped to 87/40 something. I believe they cut either my water pill or beta blocker in half to counter this problem. I was able to eat
a little bit and slowly but surely, my bp rose through the day. I think they took my drain tube out Monday too (day 3), it wasn't fun, but could've been worse I suppose. My surgeon
visited and we talked a little, I wasn't really sure what to say to him though, he's an intimidating guy. He told me he consulted with other doctors and they all agreed repair on the
mitral was the best option. However, I'm still left with some regurgitation. This seems like decent news, even though I had heard repair usually lasts the rest of your life. I try not to
focus on this bit of information.

My sister is still by side every day and night, only leaving for a short while at a time. I'm using my spirometer, even though I'm not good at it. The food at the hospital is very hit
or miss, they want me on a cardiac diet, no overly salty foods. The fruits and veggies are usually a safe bet, but I've gotta watch those green ones. Also, forcing yourself to
drink a lot of water is hard, and that's coming from someone who primarily only drinks water. The next day my sister brings me bottled water (I complained about tap) and
water enhancer, she's a life saver! She also brought a vibrating foot bath, soaked my feet and rubbed them with lotion and we both did face masks. We would sneak down
to the galley late at night for cereal and pb toast, she kept pushing me to walk further every time. My bf would visit whenever he had a chance, but we have two boys (5 & 9)
that he was taking care of. There's nothing like being stuck in the hospital to make you appreciate your significant other. They gave me an ambien this night and it worked
beautifully. When I asked for it the next night, they said it was taken off my chart, huge bummer. I finally asked for a fan though.

On the last day I woke up to a new day nurse, I was bummed because I had the same nurse for many days and she was wonderful! This guy was pretty clueless and I
was thankful that I was 6 days post op and paying attention. I noticed he had forgotten one of my pills and another he didn't cut in half. When my surgeon came in, he asked me
if I felt like I was ready to go home. I told him, "I could go home!" He said we were just trying to get my INR stable so if I agreed to go to the lab for a few days, then I could go
home. So his PA stayed behind to talk to me about discharge and to remove my pacing wires. I don't even want to talk about those. Does everyone get those?? Wow,
I have no words for them! While my sister and I were packing up the last of my things, an elderly woman was having a fit about wanting to leave. On my way out, I asked them
to wheel me over to her. I noticed she didn't have the cut, I asked her to check mine out. She was very surprised and couldn't believe someone so young had heart surgery.
I effectively took her mind off of leaving and waved goodbye.

I'll post more about my first few days home later on in the comments.
 
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Two nights ago I was finally desperate enough to take my Oxycodone (5mg immediate release.) I haven't been getting much sleep, if any at all, and figured at this point it was worth the potential nausea. So I only took half a pill and it knocked the pain and me out for a solid 3 hours. When I woke at 1:15, I did the math and realized that another half a pill wasn't going to get me through the night so I took a whole pill and slept till 7:30am, it was wonderful! And no nausea!
Last night I probably overdid it. My bf and I do cosplay and our local comic con was here, I decided to just come to the end and sit to watch the costume contest, then go eat dinner with him and some friends. So I was out and about for about 2.5 hours, but I did get to meet Jon Heder (Napoleon Dynamite), he even asked to see my scar, and I of course obliged! Then some friends stopped by (now 10pm) and stayed till midnight. I was ready for bed at 10 and my Tylenol from 3pm had more than worn off. By the time I crawled into bed I could barely move and I ended up taking a whole Oxy. It didn't take my pain away or knock me out. At 2:45 with not really sleeping and still in a lot of pain I took another. I slept intermittently the rest of the night and woke with a headache. Do you think I just let the pain get too bad before taking it and that's why it didn't work as well? Or maybe I just overdid it by going out and walking so much. Any advice on pain control is welcome!!
 

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I could not imagine all of that activity so soon! I took the oxycodone as prescribed. I can't recall anymore, but maybe three times a day? It helped. I was able to sleep - although I did get up in the middle of the night occasionally. I switched to Tylenol after 3 or so weeks I think? At tgat point the Tylenol worked fine. Can't really recall exact timing of when I switched. I do know the oxy made me very tired. I could definitely tell when it was wearing off, though because my incision would really start to hurt.
 
DachsieMom;n876783 said:
I could not imagine all of that activity so soon! I took the oxycodone as prescribed. I can't recall anymore, but maybe three times a day? It helped. I was able to sleep - although I did get up in the middle of the night occasionally. I switched to Tylenol after 3 or so weeks I think? At tgat point the Tylenol worked fine. Can't really recall exact timing of when I switched. I do know the oxy made me very tired. I could definitely tell when it was wearing off, though because my incision would really start to hurt.

I don't feel like I want to take it during the day because of the drowsiness and loopiness. I took it easy today, didn't even go outside and took a nap, I'll try again taking one oxy at bedtime.
 
Heather - I shared one issue with you. Although by the time I got home I was in minimal pain (except for when I coughed. . . ), I still took the Oxy at half of the standard dose at night. Otherwise I couldn't seem to sleep.

The Oxy did allow sleep, but between the meds given at the hospital and the Oxy taken after discharge, my intestinal system became almost dormant! I was so "stopped up" that I had to be re-admitted to the hospital about 4 weeks post-op. I was in the hospital almost another week for them to rule out endocarditis and get my innards working again.

Be very careful with pain meds. If you become constipated (hope this isn't "too much info"), be sure to take something for it. At the hospital they gave me magnesium citrate (industrial strength laxative), which got things started. They then sent me home with instructions to use a stool softener and take Miralax (I think it is ethylene glycol), NOT to take a stimulant laxative. The glycol laxative works gently and doesn't risk cramping, which could be very uncomfortable for post-op patients. Pellicle recommends eating kimchi (Korean pickled cabbage, I think) instead, but I haven't tried that.

It is good to be as active as possible, but don't over-do it. I found that if I over-did it for one day, I would pay for it for two.
 
epstns;n876818 said:
Heather - I shared one issue with you. Although by the time I got home I was in minimal pain (except for when I coughed. . . ), I still took the Oxy at half of the standard dose at night. Otherwise I couldn't seem to sleep.

The Oxy did allow sleep, but between the meds given at the hospital and the Oxy taken after discharge, my intestinal system became almost dormant! I was so "stopped up" that I had to be re-admitted to the hospital about 4 weeks post-op. I was in the hospital almost another week for them to rule out endocarditis and get my innards working again.

Be very careful with pain meds. If you become constipated (hope this isn't "too much info"), be sure to take something for it. At the hospital they gave me magnesium citrate (industrial strength laxative), which got things started. They then sent me home with instructions to use a stool softener and take Miralax (I think it is ethylene glycol), NOT to take a stimulant laxative. The glycol laxative works gently and doesn't risk cramping, which could be very uncomfortable for post-op patients. Pellicle recommends eating kimchi (Korean pickled cabbage, I think) instead, but I haven't tried that.

It is good to be as active as possible, but don't over-do it. I found that if I over-did it for one day, I would pay for it for two.

Good call, I forgot about that side effect, I think I may have some stool softeners in the medicine cabinet. They had my pipes working before I left the hospital luckily! I think the oxy is giving me insomnia and I'm gonna have to quit taking it. I was wide awake most the night last night and the night before.
 
I was on Endone. It didn't do anything, but it took a while to wean off it. The sooner you get off that crap, the better, taking into account your discomfort and pain, of course.

My sleep was all over the place for about three weeks. My day had no structure.
 
I didn't hesitate to take the pain meds at night if I needed it to sleep. I figured if I can't justify taking them after OHS when can I? Then again I didn't keep taking them after I no longer needed them and I understand the concern people have about the possibility of getting addicted.
 
I only took Oxy for one day and ghen switvhed to Tylenol - maximum dose. Tylenol is very powerfull and obviously does not come with the risks of Oxy. I also think moving around - as much as you can is a good idea and worked for me well. My biggest problem with sleeping was the noise and the constant interruptions during the night. I slept so at home on our leather couch sicne it was much easier to get in and out.

Heather you are doing grate and I wish you a speedy recovery.
 
cldlhd;n876834 said:
I didn't hesitate to take the pain meds at night if I needed it to sleep. I figured if I can't justify taking them after OHS when can I? Then again I didn't keep taking them after I no longer needed them and I understand the concern people have about the possibility of getting addicted.

That's the thing though, they aren't helping me sleep, they seem to be waking me up. Only the first night did they knock me out. Hoping for lots of sleep tonight without them!
 
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I had to share this, my best friend started fostering a baby girl just last week, she's in the zipper club too, I couldn't resist the photo op with her! I'm also really happy with how my incision/scar looks 11 days post op :)
 

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Another week, that makes it over two and a half weeks out now. A week ago I was still taking 3,000-4,000mg of Tylenol in a 24 hour period, yesterday was the first day that I didn't even think to take it and I realized at bed time that I never did take it. Most of all at this point I feel like I could use a good back massage, all the laying around in different positions and the bad posture has wrecked my back temporarily. I'm finally sleeping well through the night too, I would say this is my turning point. I'm trying to get some walking in each day and I do run out of breath quickly but I still do it.
A week ago my INR was 3.6 (my range is 2.5-3.5), they had me taking 3mg a few days prior to testing and a little less the days before that (I think I had 14mg the week prior to last week's test.) So they dropped me down to 2mg all week this past week (except for Monday they had me take 3mg) and my INR today was 2.1. And I'm sure the reason it dropped so much was because I have cut my Tylenol down 75%, and I told her that. She debated giving me a lovenox injection but found out that it's not need for AVR only mitral. So she has me taking 2mg 4 days this week and 3mg 3 days. I'm definitely not a pro at this by now but it seems like that wont raise my INR enough, what are your thoughts?
 
Heather such good news on your recovery! INR takes a bit of time to get it where you want to be I think. I had AVR,my INR numbers jumping all over the place, Lovenox injection series (2 times), and finally things just straightened out. I will also add that I had a pericardial effusion shortly after open heart so that had some bearing on my crazy ups and downs. All is good and have been on warfarin (3 mg two days per week and 4 mg five days per week) since end of December, 2016.

You will get all kinds of advice here about dosing etc. My opinion is to be careful about self dosing according to an internet forum as your cardiologist may not approve. That is up to you to decide.

Better days are ahead and it looks like you have turned a corner. Take good care.
 
jwinter;n877000 said:
Heather such good news on your recovery! INR takes a bit of time to get it where you want to be I think. I had AVR,my INR numbers jumping all over the place, Lovenox injection series (2 times), and finally things just straightened out. I will also add that I had a pericardial effusion shortly after open heart so that had some bearing on my crazy ups and downs. All is good and have been on warfarin (3 mg two days per week and 4 mg five days per week) since end of December, 2016.

You will get all kinds of advice here about dosing etc. My opinion is to be careful about self dosing according to an internet forum as your cardiologist may not approve. That is up to you to decide.

Better days are ahead and it looks like you have turned a corner. Take good care.

I definitely will not self dose! Just wondering what people thought, each nurse that takes my INR is so different. I may just prescribe myself a drink a couple nights this week ;)
 
Hi

glad to read (even if I don't reply much) that you're doing well ...

dreamy885;n876998 said:
...
A week ago my INR was 3.6 (my range is 2.5-3.5), they had me taking 3mg a few days prior to testing and a little less the days before that (I think I had 14mg the week prior to last week's test.) So they dropped me down to 2mg all week this past week (except for Monday they had me take 3mg)

firstly I'll observe that you have a low dose ... its not of particular meaning one way or the other but just is. I'm willing to bet that a blood test would turn up a genotype known for this.

its not good nor bad, just is. The only "issue" is that it makes managing your dose that bit trickier as the standard pill sizes are made to make management of accurate dose easier for folks between 7 and 14mg daily dose.

and my INR today was 2.1. And I'm sure the reason it dropped so much was because I have cut my Tylenol down 75%,

astute observation and supported by our existing knowledge

http://www.medicine.ox.ac.uk/bandolier/booth/AF/paraod.html


AVR only mitral. So she has me taking 2mg 4 days this week and 3mg 3 days. I'm definitely not a pro at this by now but it seems like that wont raise my INR enough, what are your thoughts?

all seems prudent and appropriate. More broadly I generally feel uncomfortable with tow things:
  • thinking in weekly doses
  • the alternation of doses by significant margins
However in your case the alternations are within relatively fine practical limits and I don't think its any issue.

If you are interested PM me and I'll set up a Google sheet for you and you can then input the data and monitor it yourself. I believe that even if you accept the management of another party that knowing how to "take the wheel" is important for your own long term comfort and self confidence. It can (for instance should you travel) take one more worry out of things knowing that you know how.

At the very least it increases your own awareness of yourself and takes it that extra step past being a "managed patient" into a feeling that you understand and know what's happening and can anticipate well what may happen. If you need to take control for some reason, you'll then know you can.

Best Wishes
 

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