My AVR OHS Experience

[Timmay]

I had OHS exactly 1 week ago at Washington DC hospital. 50 yr old. 165lb. BAV. Received an aortic root enlargement and an On-X 23mm valve.

If you can have someone act as a guide for you - even if they live in a different country halfway around the world, do it. I won’t draw attention to him unless he says ok - but someone here has helped me so so so much and I can’t imagine not having had his assistance. Thank you.

Hospitals after COVID have gone downhill. It’s an assembly line. You’re a number. Make no mistake. So - make sure someone comes and stays during visiting hours every day. This was not only helpful for me, but also helpful for my roommates. From water, to clean bedsheets, to _____. Your advocate is your lifeline.

Don’t underestimate how messed up your digestive system will be. May take several days for things to equilibrate after you get home. Mine still isn’t right. Active probiotics like Kimchi, sauerkraut, yogurt, etc should be on hand. Also consider having Gas-X, Pepsid, Colace, etc ready to roll if you need it.

For a full sternotomy, your Abs/Core and a healthy weight are so so important. Anything you can do to save your chest is a plus. Remember, you won’t be able to use your arms effectively to get in and out of chairs, bed, toilets, etc. that’s all legs and core. If you can get this done via a mini-sternotomy then do that.

Speaking of getting in and out of bed - the worst pain that I had after leaving the ICU and entering the regular cardiac ward was given to me by nurses “helping” me get into bed and especially scooting me up in bed so I wasn’t slouched. I learned my own technique after the second time that happened. Ouch.

Get everything you need to do your vitals from home and know exactly how to use it successfully. This means practicing with your CoaguChek XS meter prior to your surgery. Know exactly how it works and how to use it. Also have an automated blood pressure cuff, pulse ox device, thermometer, etc. If I didn’t have my CoaguChek, I’d be screwed. Nobody came to my house as promised to pull blood for INR. Started off with 5mg and luckily had backup expert(s) to instruct me to double it. Immediately. I was still only 1.4 this AM.

Get an iWatch or FitBit with the heart monitor. Knowing my heart rate after surgery was key for me. I had to be my own advocate for Metoporol given that my heart rate after surgery was now 90 instead of 70. Ugh. Yes, it’s still high now. The metoporol gets it back to about 80. It’s also helpful during your walks. I like to keep my heart rate to no more than 100 during this sensitive time.

My heart now beats strong. And by strong I mean prevent me from sleeping because it literally “rocks my body” strong. My head will now move oh so slightly back and forth while trying to lay to sleep. Ticking? What ticking? I just feel “thumpous heartus”. Most online indicate this doesn’t go away. I was ready for the ticking. But not for this. I’ll get used to it though.

Don’t underestimate the emotional toll this can take on you. There are some great, wonderful stories here from post surgery that are so helpful to build positive thoughts. But be aware that you might get down into the dumps. It’s hard to be transformed into this new “thing” that isn’t capable and needs help. Open heart surgery with full sternotomy is a huge meat grinder. It will fukk you up.

Be positive and push forward, but you might not be the person that slams out 4000 steps while still in the hospital’s cardiac ward (Hi Chuck C!). THAT’S OK! Just set realistic goals, strive for them, and try to achieve them

Tim

 

[Superman]

Thanks for the update! Glad to hear your doing well. I’m sure folks in the waiting room will appreciate the fresh perspective. It’s amazing what we forget as the years go by. I mean to say we remember the mechanics of things, but the feelings - that tends to fade a bit.

BTW, the hard thumping heart beat does subside. At least for some.

Keep us posted on your progress and congratulations !

 

[DJ-Rae09]

Hi Tim,

Glad to hear you're on the other side. I still don't have a date for my surgery yet but looking like end of this month, early July.

Reading here everyday gets better post Op which I hope is the case for you (and me after it's done).

Cheers,
Tim.

 

[pellicle]

Hey

great and informative post, all post op surgeries go some way towards helping newbies.

but in the main most of us are doing ok after a few months (said for the lurkers).

Thank you.

you're welcome.

Best Wishes

 

[Timmay]

…
Reading here everyday gets better post Op which I hope is the case for you (and me after it's done).

Cheers,
Tim.

It’s about the small wins and the small steps achieved while lumbering about inside of the tornado. Baby steps. Take those words to heart and focus on the little wins and it’ll make a HUGE difference.

Today I did two 20min walks. I walk in big semi-circles around my first level. I walked to my mailbox at the end of the block. Did some smaller walks around my first floor too. Cooked myself some eggs in my cast iron skillet for breakfast.

it’s the little wins.

Tim

 

[DJ-Rae09]

It’s about the small wins and the small steps achieved while lumbering about inside of the tornado. Baby steps. Take those words to heart and focus on the little wins and it’ll make a HUGE difference.

Today I did two 20min walks. I walk in big semi-circles around my first level. I walked to my mailbox at the end of the block. Did some smaller walks around my first floor too. Cooked myself some eggs in my cast iron skillet for breakfast.

it’s the little wins.

Tim

Great advice, thanks Tim very helpful.

I guess you can take positive that you have the dodgy valve out! Did you have the aortic graft done too?

 

[Al3x]

Sounds like you were given minimal support following your surgery, which is concerning. I'm glad you were well prepared to look after yourself.

I had the strong heartbeat thing for a few weeks but it has definitely faded. Best of luck with your recovery. Keeping enjoying those small wins!

 

[pellicle]

Sounds like you were given minimal support following your surgery, which is concerning. I'm glad you were well prepared to look after yourself.

sadly some people get far less. Watch The Wrestler some time and that guy had an arterial bypass, looked ****** to me. Its probably the worst for people in low income public (American medicaid) health care systems or 3rd world situations.

Some are lucky enough to reach out here and get advice:
https://www.valvereplacement.org/threads/how-scared-should-i-be.888016/post-905458
who knows how many just muddle through and we know nothing about it

 

[user 16827]

@Timmay , my head rocked too for a while, it does settle down though just give it time, the thumping
may stay with you, its worse if you inhale deeply.

You will get used to it, and it should fade with time, however it may be your new normal.

Happy onward journey

 

[ATHENS1964]

Your Activity Guide After Heart Surgery



Cardiac rehabilitation exercise video

 

[Chuck C]

Well done Timmay! Welcome to the other side and glad that you're home!

Really great feedback that you've provided there. This will greatly help others in the waiting room facing surgery.

Your advocate is your lifeline.

I agree- it is important to be your own advocate or have someone who can be your advocate. I had to be my own advocate a few times, like when I encountered the nurse who decided that I should be in extreme pain rather than give me more pain killers, because she was concerned I would become constipated.

For a full sternotomy, your Abs/Core and a healthy weight are so so important

Great advice. I think going into surgery in the best fitness possible is ideal, including having good core strength. Although I had a mini-sternotomy, I believe prior fitness and core strength helped me a lot as well.

Get everything you need to do your vitals from home and know exactly how to use it successfully. This means practicing with your CoaguChek XS meter prior to your surgery.

Great move in doing this. If I had it to do over again, I would take this advice rather than get my Coaguchek xs 10 days after surgery. I had a life threatening INR spike of 9.7 just 3 days after release due to being put on amiodarone, which could have been mostly avoided if I had my own device and knew sooner that I was out of range.

Nobody came to my house as promised to pull blood for INR

For me, a third party nurse showed up two days after my release to take blood for my INR test. He turned out to be totally incompetent. The lab rejected the blood sample because he didn't know that he was supposed to fill the tube to the little line. He comes back the next day and can't get more than 2 drops from me- trying to take blood from the vein on the back of my hand- tells me my blood is too thick. So, I called the Coumadin Clinic and insisted that they put an order in for my INR blood draw at Quest and handled it myself, despite the clinic telling me I am fine to wait until next week to check it. As you indicate, sometimes you need to push and be your own advocate. In this case I was really glad I pushed for the blood draw immediately, as it showed my INR at 9.7. I don't like to think about what could have happened if we waited several more days as the clinic was suggesting we do.

This is just to underscore the wisdom of your advice to plan ahead and have your own INR meter ready to go as soon as you get home. For me, this would have meant taking steps to turn my INR around as soon as it was out of range, rather than wait several days and letting it get so high.

have an automated blood pressure cuff, pulse ox device, thermometer, etc.

Again, good advice. UCLA sent me home with a kit which included an automated blood pressure cuff, pulse ox, scale and thermometer. It came with an Ipad and step by step instructions, which gave all data directly to my surgeon's office daily. Pretty slick.

It’s about the small wins and the small steps achieved while lumbering about inside of the tornado

I agree 100%! Keep looking at each incremental improvement as a victory and stay positive as best you can

 

[TheGymGuy]

Yeah buddy!!!!!!!
How much are you walking daily now?
Got your standing desk ready or a box to put on your desk to put laptop on top of?

 

[KLS39]

So glad you are home and doing ok. While I was well cared for in the hospital, I agree with having an advocate. Initially I was out of it and couldn't always remember what was said to me. My husband was only able to visit every other day because of Covid. My surgery was on a Friday so he showed up on Sunday. After driving two and a half hours he found out the floor I was on didn't have visiting hours that day. Once he explained how far he traveled they did let him in and he got to come back on Monday too.
I was lucky that we have a very good visiting nurse program here. I came home on a Friday and the nurse was there the next day to change the bandage covering the chest tube incisions and on Tuesday another nurse came to do my INR. She came twice a week for a few weeks. I also had a visiting nurse for PT. She initially gave me some chair exercises and then had me walk two minutes at a time six times a day. Short walks due to high heart rate. Slowly worked up to 30 minutes at a time.
The thumping for me was pretty intense initially. I remember holding the heart pillow they gave me gently on my chest and watching it move up and down. I do still hear the thumping one year later but it is not as loud and I am used to it.
I agree with the others that you need to celebrate the small wins - the first day that the pain is less or gone altogether, going up stairs and feeling ok, lifting a plate or bowl up to a shelf and not having pain, etc. I tried to remind myself of that daily.
Take care and be well!!

 

[Dano64]

Great to hear from you Timmay! It will get better and better as the days go by. I am at 4 months now and the immediate post-surgery period is already becoming fuzzy.

 

[Timmay]

Look at all of these amazing replies! Thanks everyone! Also good to hear that “thumpous heartus” might diminish a bit. That said - I AM getting used to it already .

Last night I slept the most horizontal that I’ve been and that was wonderful. 5.5hrs of sleep according to my FitBit. I’m so happy that I got this “watch”.

The day I posted my experience, I did two 20min slow walks around my first level. That resulted in over 5,000 steps that day. I felt very accomplished. But I don’t think I was ready for it. I paid for that the next day by feeling a bit run down and my steps for the day dropped down by 20%.

I’m also noticing other odd things now. I spent 45 minutes talking to my son on the Phone and that caused my voice to get stressed and I lost my voice a bit as well as involuntary teeny weeny coughs originating from my diaphragm. .

Chest appears to be healing nicely - so far so good.

INR is finally 2.0 today . Whew. Yes, I need to be at 2.5 but we’re working our way there. I’ve been under 2.0 since I was released from the hospital so this makes me feel a bit safe finally.

Stomach issues appear to be getting better . Not out of the woods yet on this one, but definitely promising. Still have a bloated belly that looks like a beer belly. At this moment, my friend is Pepcid Complete and Metamucil a couple times a day.

My resting heart rate is still horrible. It’s 20bpm more than previous. I honestly think that if my digestive system was 100% and if my resting heart rate could be closer to normal … well, then I’d be further along. But, we each have our own unique battles with OHS. I don’t really have any chest pain (while following the rules).

I can do very soft mini teeny coughs now without using my pillow and feel no pain. I can clear my throat without issue.

My Blood Pressure when in the hospital and when I got home was higher than before my surgery. That said, it’s consistently been a little lower the past three days. I’ll take that! ❤

Today I’m gonna grill up some chicken, make my rosemary oven roasted potatoes, and steam some broccoli

 

[pellicle]

I can do very soft mini teeny coughs now without using my pillow and feel no pain. I can clear my throat without issue

I recall developing a technique to cough that was low impact too.

Gosh, memories of details from 10 years ago

 

[Timmay]

2-Week Update

So early this AM as a 2-week present to myself, I walked 2.03 miles around my neighborhood. It was a slow walk and took approximately 54 minutes. A little prodding from @TheGymGuy made me push a little bit (I was very active prior to surgery) and voila - 2 miles. Eggsellent.

Some other things from this past week ...

• Having night sweats isn't abnormal. I had them several nights in a row but they are currently on their way out.
• Although my actual temperature (with a thermometer) is on point, I would often feel cold, then hot, then cold, then hot. Apparently this isn't abnormal either. This phenomena appears to be shutting down too.
• I had a very very odd diaphragm spasm that would cause the air from my lungs to be expelled. It would sporadically happen when falling asleep and wake me up with a shock because it's sort of violent. This hasn't happened in a few days now. I was really concerned it was damage to my phrenic nerve (a known issue during OHS).

My biggest complaint so far is HOW THE *** CAN ANYONE BE IN THEIR EFFECTIVE INR RANGE IF THEY DON'T HAVE THEIR OWN METER? I am dead serious here. Luckily I have my own meter and happily accepted help from @pellicle . But seriously, check this nasty dream out ...

1. I was released from the hospital on a Sunday with an INR of 1.1 and a Warfarin dose of 5mg. I had a heparin shot the day I was released.
2. When I was released from the hospital I was told that someone would come to my house and check my INR.
3. Nobody showed up. It was now Tuesday.
4. There's a nurse from my primary care that called me on Tuesday. I said "cool so you're calling about sending someone out to get my INR levels checked?" She said no. She was just calling out of the blue because she was a cardiac nurse for 25 years and saw my paperwork and just wanted to see how I was doing. She was upset that nobody was helping me
5. Luckily - I had already been testing myself at home using my CoaguChek so in conjunction with pellicle we doubled my dose to 10mg.
6. I finally hit effective range on Friday ... 5 days after being released from the hospital.
7. Recommendation from my primary care physician is to now decrease from 10mg to ... 3 days at 7.5mg and the rest of the days at 5mg (WTF?). This made no sense, but I agreed (with pellicle) to drop to 7.5mg straight up. FWIW, pellicle didn't want to. He knew he was right.
8. INR dropped to below effective range after 2 days.
9. I immediately went back to 10mg.
10. Meanwhile I am calling the anticoagulation clinic. They need a referral. I call the next day and they still don't have the referral. Then the weekend hits. I finally get in touch with them today and the first appointment is a week from now.

I literally could die from a fukking blood clot and nobody would give a ****.

Thank goodness for the CoaguChek XS. I bought another as a backup.

 

[pellicle]

I literally could die from a fukking blood clot and nobody would give a ****.

thanks for the nod mate ... I'm just fundamentally glad that you're heading in the right direction.

two of the above questions answered:

1. how? Well ignorance is bliss (and trust is blind, but people do whinge about it here while apparently following along like lambs)
2. you would be unlikely to die, a revenue source would be lost to the system (a rule of the medical system). You would just stroke and be a cripple

cured is just as bad

;-)

 

[Chuck C]

Recommendation from my primary care physician is to now decrease from 10mg to ... 3 days at 7.5mg and the rest of the days at 5mg (WTF?).

Insane guidance. No logical or reason behind it. It is as if they often use a Magic 8 Ball to come up with their warfarin plan.

Making decisions with Magic 8 Ball:

"It says, 10mg for 3 days then 7.5mg the rest of the week. Let's go with that."

 

[Timmay]

" ... You would just stroke and be a cripple ..."

OMg you're right. And that is even worse. I think.

Tim