What a ride/you can't make this stuff up/happy to be home:)

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Juliemoon

Active member
Joined
Nov 25, 2016
Messages
37
Location
Lafayette, LA
Wanted to share my experience b/c reading yours has been such a great help. I deleted this, but have been asked to re-post. Please keep in mind that I wrote this on my way home, in the car, on very little sleep, in pain, and emotional. I will be sure, if there's a next time, to research my hospital. I'm hoping there's no next time.


Surgery Friday morning, Feb 17, lasted around 4 hours. I didn't sleep at all the night before because of extreme anxiety. I was in a hotel room, finishing my Last Will and Testament, worried sick about leaving my son alone in the world, and still agonizing more over valve choice. I had seen my surgeon that day after a dizzying array of several hours of testing on 9 floors of Ochsner's hospital, and announced the switch to mechanical, but didn't feel ok with it. I didn't discuss the tissue option with him again, because I thought it was stressing out my parents, and I felt I needed more time. So I was feeling neither great nor confident going in. One of the last things I remember is my mom crying as they wheeled me away, saying "Be brave!" and holding back my own tears.

My aortic valve was successfully replaced, and the aneurysm didn't need to be repaired. They removed the breathing tube before I woke, so that was lucky. Got transferred to ICU, and upon awakening, was given 2 oxycodone tablets, even though I warned against it. "Medication sensitive, it's too much," I tell them. Being intolerant to many meds was one of the biggest factors in agonizing forever over a tissue or mechanical valve. I hate taking medication, could never take an antidepressant ,and have always felt that the more natural state your body can be in, the better it will work. It seems clear now, and like it should have been so much easier, but I remained in a state of constant confusion and deliberation for months. (I came here for a tissue valve, and ended up with a mechanical.)

Started throwing up, but no food, so dry heaving episodes for 6 hours with my breastbone freshly sawed open. There was no heart pillow to hold , as they conveniently give you that "later on." Not sure it would've really helped. I thought it was some of the worst pain I'd ever felt, but not for long. Shortly afterwards, they notice my blood pressure was low, as it normally is. So they start an epinephrine drip. I guess they didn't think of my weight, ? OR being sensitive? but that shot my heart rate to well over 230, and sent me into respiratory distress. My heart was pounding in the pit of my stomach, hands, feet, brain.... severe chest pain. Risk of heart attack. Felt like I was dying. They start another IV to crash that one. Fortunately my mom had stepped out, but my dad was there and looked like he would faint any second. Bc of the huge epinephrine dosage, (?) I become temporarily diabetic. I find out sugar free Jello is gross. And pretty much anything sugar free is. I won't mention the chest tube incident, because it's not even believable . Or maybe I'll save that for later. That was part of day one....Or surgery day, which doc says is considered 0. Sleep a total 30-40 min in ICU.

Day 2, or officially 1 after surgery, my vision blurs and was transferred out of ICU to a room so small that there was literally no room to move around. My parents had to maneuver around nurses, and vice versa. There were really old and noisy machines beeping, whirling, flashing and ticking all around my bed. The tv is broken. I don't care about that. But that means my parents can't watch The Bachelor, and all they can do is worry. There's no hot water. NONE. The hospital bed is broken. The chest tube drainage box gets knocked over numerous times.

I then get poked and prodded connected to about 7-8 more IV's. I lose count. Already on blood thinner, so they start a Heparin drip. The nurses are drug pushers, and you can't "just say no." I'm being given drug cocktails of 8-9 pills at time. I ask what each one is, and start to hide the ones I think are bullshit, and try to sort out which ones are making me dizzy, nauseated, blind, etc. Long story shorter, the artery IV in my neck bleeds out.

More complications follow, but nothing that serious, and I am determined to GTFO as soon as humanly possible. To get out, one must walk a certain distance, but I've been refusing pain meds as much as possible to avoid ever throwing up again. (And because I am apparently hardheaded.) I now have a morphine drip that I can administer intravenously every 6-10 minutes. I use it once every 5 to 7 hours. It hurts. But I figure it's supposed to. They keep shouting "Push the button!" I realize later that I should've never stopped pushing the button.

I'm told that the fastest anyone goes home from the surgery is in four days. But also told I am not sleeping enough or getting enough caloric intake for my body to heal. Well ****. I might be here another week?

On Sunday I start pressing the button, but cautiously, and find a smoothie from the gift shop. The hospital doesn't bring any meals, nor provide you with a diet to follow. (I wish I would've started with broth.) There is a flyer with a limited menu, and number to call and order. The food takes over an hour to show up each time, and always shows up cold. The busier they are, the longer it takes. I can't eat it anyway. Finally sleep two hours.

Monday, day 3 they removed the chest drainage tubes by simply saying "take a deep breath" and yanking. The typical way. It hurts, but not too bad, and it's quick. I realize they were causing massive amounts pain bc they were sticking into my back. A few minutes later I'm surprised and delighted to be able to inhale and to walk upright for the first time.

Later that day, I break down crying when they can't find a vein after numerous needle sticks by 2 different nurses because 3 iv's have infiltrated. I am told I have rolling veins, which I do not. Or didn't. My veins were always a phlebotomist's dream. My blood used to be so beautifully dark and thick and the color of a full bodied wine, and now looks light red and bubbly, like fruit punch. Apparently the Coumadin can change things that quickly in your body?? It seems impossible.

I fall into a deep "What have I done, I made the wrong choice" depression about having chosen the wrong valve, and having dietary restrictions and having to get constant blood work, and being chained to this medication, and now possibly others all my life. I'm ticking. It's LOUD! The faster my heart rate, the louder the ticking... I put ear plugs in and I can hear it even louder in my ears. I continue to freak out.
A friend who's in town calls and comes to visit. I'm beyond exhausted and it's hard to speak, but I tell her hospital war stories and make her laugh. I laugh with her. Ouch . Then try not to. Seeing her helps. Sleep about 45 minutes.

Today (Tuesday) I realize that it's my mom's birthday tomorrow and that I'm lucky just to be alive. I decide that I'm going to go home for her present. I do everything and I need to do. I put on lipstick. I sweet talk nurses. I look alive (halfway) ....or 40%.....Ok, 35. I walk the designated block. I blow in the tube.

My folks are super reluctant to leave after all that's happened. I tell them I feel SO much better. I might've lied a little. Ok, a lot.

I try to put things in perspective. My surgeon was awesome, and he saved my life. I had a few nurses who were caring and kind and excellent. I had a friend from home who drove 4 hours to bring my son to see me for a few minutes. I realize that he will need me forever, and I want to be here for him as long as possible. I think of many of you who have had things so much harder, but still smile and encourage others. So thank you for your your prayers and good vibes and support. Thanks for giving me a wealth of information i couldn't find anywhere else. I love and appreciate you, and feel a kinship. Its been a long, emotional road, and i know have a long road ahead. There were times in the past few years, and the past few days that I thought I wouldn't make it. But nothing makes you appreciate life, more than facing death. I'll probably be signing off for a bit, (still having vision and dizzy spells) but know that your messages and words of support have helped so much. In the meantime, I'll try to keep in mind, and hope you will too, that
because you are alive, anything is possible.
 
Thanks for writing this. It's great to hear the details ( for most folks ). In the end, you succeeded. You are alive and getting better. Good luck and good health in the coming days, months and years. And remember...keep walking ! You sound like a very passionate and loving Mom.
 
Julie

thanks for posting with honesty.

The first six months are probably the worst, and of them the first 8 weeks the hardest. Know that you will become more emotional and things will depress you. I know that when you are down in a hole that it doesn't seem that you are down, it seems everything is a climb up. But when you are back up to normal you'll look back and see it for what it was.

So every time you feel down or like the climb is too hard just ask here ... someone will be here to answer soon enough.

If it helps my focus was to be on getting better. I did not revisit pre-surgery "what iffs" and focused on the job of becoming a better stronger man. I focused on getting well so that my lovely wife was not my nurse and that I would be able to return to renovating the house , going to work , living my life in the outdoor "good manner" with my wife and partner.

Let me give you a metaphor from cross country (meaning in the forest) skiing I learned learning to ski here in Finland.
When going up a slope on skis it seems impossible at first. You are tempted to take them off your feet. So you give that a go and sink to your waist in meter deep powder and then struggle for 10 minutes to get back onto your skis. So you give up on the idea of "looking back".

You learn to move in single limb steps. If you just move your ski you'll slip back. So first you have to put your poles in place and be ready to take your weight on them. Then move the ski you want. When you know the footing is good you can then move one pole (because if you move both you may find your footing wasn't that good and you slip again). Then the next. Then lastly the other ski.

Its slow and its arduous but its the only way to make it to the top of the hill.

Don't give up, don't over do it (leading to you getting angry / upset and wanting to give up). Small steps and you'll make it!

:)
 
Thank you Blind Faith. And thank you Pellicle, for the words and pic. I took this one at the lake. [IMG2=JSON]{"data-align":"none","data-size":"full","src":"http:\/\/www.valvereplacement.org\/forums\/core\/image\/gif;base64,R0lGODlhAQABAPABAP\/\/\/wAAACH5BAEKAAAALAAAAAABAAEAAAICRAEAOw=="}[/IMG2]​
 
Hi Juliemoon - reposting my reply to your message which I’d posted in the other thread you did which you then deleted after I’d posted LOL

It's only normal to feel badly after this type of surgery, and it didn't seem you were looked after as well as you could have expected. What you experienced resonated to a certain degree with me. Certainly I will never "celebrate" the anniversary day of when I had my valve replaced though I appreciate many people do. When you’'ve known you'’re going to have this surgery, which has a lot of “build up” to it, and you can expect to be well cared for since it is a very serious operation, to have less than good care doesn’t help the ’trauma’ of it.

Now you’'re at home it can be onwards and upwards towards recovery ! I do hope your GP and cardiologist can offer some good help so that the medications you now get don’'t cause further problems. {{{hugs}}}
 
(((((Julie)))))

Great job overcoming all obstacles and getting on your feet quickly! I'm glad you have your parents at your side. Yes, you will be there for your son for a long time.
 
Thanks ladies. It seems like much less of an ordeal now that I'm away from there. But I don't particularly want to go back for more surprises. The hospital security guard was kind enough to let in homeless people at night. They had blankets and food, and then would all leave about 5 am before things started to get busy. Kind, but maybe not sanitary. (The things you see when you can't sleep at night.)

Paleowoman, I can't imagine celebrating that day either, but maybe that will change in time. But I will try to celebrate something every day now. Like life!
Honeybunny, me too. My mom got too exhausted and ended up getting sick. (Seems both of my parents caught bugs at the hospital.) She went home 5 days ago, and lives an hour away, (the picture above is her back yard) so I am really finding out what I can't and can do on my own. A few times this past week, I have really wanted my mommy. ;)

I have been learning what I can and can't eat, and that has been the hardest and most shocking. My home health nurse told me to avoid green tea, b/c it has really high amounts of K. I've been having green tea, or some variation of it every morning for the past 14 years. That's like telling a coffee drinker they could never have coffee again. So I broke down crying. My mom mentioned that I was so tough, and independent, and not taking pain meds, but I that I fall into sobbing about green tea.

Then, I realized how much K I actually eat. Like every day. I would stare at my garden and think "i can't have anything in there." One day I ate if for every meal unknowingly. Toast with avacado for breakfast, okra gumbo for lunch, salad and roasted cauliflower with supper.

I now have a chart I found online. So I'm learning.

"onwards and upwards"
 
Juliemoon;n873861 said:
I have been learning what I can and can't eat, and that has been the hardest and most shocking. My home health nurse told me to avoid green tea, b/c it has really high amounts of K. I've been having green tea, or some variation of it every morning for the past 14 years. That's like telling a coffee drinker they could never have coffee again. So I broke down crying. My mom mentioned that I was so tough, and independent, and not taking pain meds, but I that I fall into sobbing about green tea.

Then, I realized how much K I actually eat. Like every day. I would stare at my garden and think "i can't have anything in there." One day I ate if for every meal unknowingly. Toast with avacado for breakfast, okra gumbo for lunch, salad and roasted cauliflower with supper.

I now have a chart I found online. So I'm learning.

Hi Julie. I can't live by food charts......nor have I ever been told to exclude foods from my diet. I self-test weekly and seldom....seldom....seldom adjust my warfarin dose. I try to eat some vit K daily (I like greens) and use the vit K in my diet to tweak my INR. There is an old saying among long time warfarin users......"adjust the dose to your diet, do not adjust your diet to your dose"....makes life a lot simpler and enjoyable.
 
Yep great post! And as the title says you really can't make this stuff up !
They seem to leave out all the extra bits on ER or Greys Anatomy not that I watch those... we have a NZ made medical drama called Shortland Street but they do more philandering, adultery and back stabbing than anything else, I must have missed all that going on.. :)

Was in the same boat with wondering about the wrong valve choice afterwards although I went into it very blind and only really got a mechanical because thats what my father has, the ticking is louder than I ever thought it would be and I don't find it pleasant or soothing but hey it's there and it's doing the bussiness so I can handle that,

I had depression but realised not much had changed and I was able to drag myself up on my own accord rather than seeing the shrink, stopped the antidepressants myself and got out and did the things I did before surgery in the great outdoors.
The chained to the lifelong meds thing blows a bit to start with but with after a few hiccups , self testing and help from mates here I (not a doctor or clinic) control my warfarin dosing it doesn't control me, so I eat the same as I always did... a bit less sugar and less pies even though they are only $1 at the indian dairy (they taste like they cost),

I like to think of it now that I had surgery because of a birth defect not because my hearts worn out, my branch manager even suggested in a meeting that they should put a defibrilater in my work area in case... he was going to say incase I had a heart attack but then he realised he was putting his foot in his mouth (one of the many times) and stopped short, WTF D...head haha

as you say onwards and upwards because it really is! :)
 
Julie - It is too bad our late brother Ross isn't with us any more. He personified the idea of the patient taking control of his/her own warfarin management. He NEVER adjusted his diet for INR control. Just as Dick advocates, Ross always said "Dose the diet, don't diet to the dose." Think about it. We are all different. We all react differently to Vitamin K and to warfarin, else all patients would take the same dose. So, just try to maintain a consistent diet, with similar daily Vitamin K content, then adjust your warfarin dose to the target INR.

I'm a tissue valver, so I only took warfarin for the first few months after surgery. I was in the care of a home health nurse and a Coumadin clinic. What a nightmare. They never did get my INR stabilized in my target range. Had I needed warfarin long-term, I surely would have taken on the management myself, with certainly better results and a better diet for me, the patient.

pellicle has all the tools handy to manage warfarin dose. I'm sure he will be happy to share.
 
I hear ya, Juliemoon. Not the ride you expected (been there, too) One day at a time. Things will get better, slowly but surely. ...

I am not on Warfarin, but from all the posts I have read over the years, my understanding was that you dosed to the diet and not the other way around.
 
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