questions questions... aortic valve replacement..

[graciebeth]

I am 32 so I will be getting a mechanical valve(no clue which one) and I am aware of having to be on the coumidin the rest of my life,however I know very little about living on coumidin,does that make sense? Is that something thats going to be a frequent issue,or will it become routine and normal and easy peasy..

I really am not worried about the actual surgery, Ive had surgery and I know its the recovery thats hard so thats what Im worried about. Im a chicken and worried about pain too,even tho I know I'll get thru it,whats normally used for pain control?? What pain meds do you usually come home on,surely they give you something right?.. Im also worried about having the ventilator removed, ooh how I have horrid imagination thoughts regarding that(most likely my thoughts are greatly out of porportion)gives me shivers to think about it..

Then a lady at church tonight told me her worst part was having the drains removed, that those really hurt.. nice,I hadnt thought about that,ugh..

I know I"ll get thru it tho. My husband passed away 2 1/2 yrs ago of pancreas cancer(he was 35) and I am now raising our 3 kids,but I know if I can get thru THAT, and knowing what all he went thru I KNOW I can do this----even tho Im starting to shake in my boots so to speak..

Anyway, my surgery may well be at the end of this week, my surgeon wanted me to get to a dentist first and so I have to go back there tomorrow to get a couple fillings and then call the surgeons' office and they'll schedule the surgery(I was at his office last Tuesday and he was initially going to do it this past Friday,so he wont waste any time)..

As for info I dont have all the numbers that some here have, I do knwo that last year my ejection fraction was only about 35% and Im thinking its lower now,but not sure..

Anyway, absolutely ANY info will be greatly appreciated, including tips and useful info for while in the hospital and especially for once I get home,things I need to buy and have here waiting on me etc..

hugs-Gracie

 

[Joe Cool]

Welcome Gracie

I am on the waiting room side of things also. You raised a lot of questions that I want to hear the answer for also. There are a lot of good people here who will be able to respond to your questions. It is nice to have the support of others who have been down the path ahead of you and can tell you what to expect. Hang in there!

 

[Marguerite53]

Hi Gracie. Welcome to our community. I am 52, 7 weeks out from aortic valve replacement and doing very, very well in recovery at this point. I cannot comment on the mechanical valve since I opted for a tissue, but others will be along to help you with that information.

As far as the pain goes, I really do not remember much serious pain. Some of our group have had problems with pain since they were intolerant of pain meds, or had blood pressure issues. For me, the drugs (whatever they were!) were great. I have no memory of the breathing tube. The drainage tubes were quite unpleasant, but were removed with such precision and speed, that I can hardly complain. It was just weird. My ICU nurses gave me instructions and a warning, counted to 3 and wham! they were out! I think during your pre-op visit (mine was a day before, where they interview you and get your blood type, etc. etc...) they asked me if I wanted to be aware of things like that, or completely out of it. I told them to keep me as drugged and sleepy as possible.

Obviously, none of this is pleasant. But the better you can educate yourself (and do not pay any attention to other people's horror stories -- it's like when you were pregnant.....how many stories did you hear then?? ) the more optimisitc you should become. This surgery will save your life. Use our Search button for some specific information. Read, read, read. When you come to something you don't understand, start a new thread and ask a question. The wonderful thing about this community is that answers come at you so fast!!

Let's see, you had so many questions..... There is a list of handy items for the hospital in the Reference Sources forum section. I took some extra pillows to the hospital and found them to be very helpful in keeping me in a comfortable position.

As for coming home, many of us have found that a recliner is a good thing to have. It can be so much easier to get in and out of in the beginning. I actually have used it more in weeks 4-6 (my sternum acted up and it's nice to have a suspended feeling) as I am long-legged and sliding in and out of bed was easy for me. Try to get the things which you use most often within reach.. You won't want to be stretching to get things off a top shelf, or a bottom drawer very soon.

Please be sure you line up plenty of help since your 3 children are probably still pretty young. Any offers of food/meals.....take them....all of them. You won't feel like cooking or cleaning for weeks.

I'm so sorry about the loss of your husband. I imagine he was in quite a bit of pain. You will not experience anything like that. Mostly, it will just be difficult to move around for awhile. No driving for 6 weeks, probably. No lifting anything over 10 pounds for 4 to 8 weeks (just seems to vary with different doctors).

Hope this is a good start. Good luck!! You'll do fine. Really!

Marguerite

Oh, PS..... Der Biermeister asked a lot of really excellent questions before (well, and now after, too!) his surgery.....you can find the threads he started by viewing his personal profile and clicking on Threads Started by..... I really got much benefit from the discussions he has started.

 

[gijanet]

Hi!

Hi!

Just wanted to welcome you really. Most of your questions I can't really address as I have survived five of my daughter's heart surgeries, but can only answer from a parent's viewpoint. Your questions come up fairly frequently, so if you do a search, you should be able to come up with some threads to read. (Although I just tried and I can't ever seem to get the search function to work............ ). And I know time is of the essence for you, so hopefully some kind souls will come along tomorrow and help you out.

I'm so sorry to hear about your husband. YOu really do have your plate full as a single mom with three kids. I DO hope that you have some close friends or family who are going to be able to help you out post-op, at least for a while. How old are your kiddoes?

I can tell you that the coumadin - even for a rambunctious five year old - has not been nearly as bad as I had dreaded. Yes, there are times I panic.........like when Katie fell and bumped her noggin on the bathroom counter at 10 at night...........but so far, knock on wood, they have all been iin vain. Katie's INR stays pretty regular.............except when she has stomach bugs and throws up her coumadin............but we really have not had the numerous crises that I thought we would have..........(thank God!)

Try and get a home test machine for checking your INR. It will make your life so much easier. Oh, and what valve are you getting? I think a mechanical is a wise choice for you, considering your age and you already have children, but do you know which one?

Okay, I am rambling. YOu will be in our prayers. P.S. Try NOT to have surgery on a Thursday or Friday............weekend hospital staffing leaves a lot to be desired most places. Push for early in the week. Many hugs. Janet

 

[Ross]

Hello Graciebeth and welcome to our humble home.

Coumadin is not a big scary monster out to pillage your village. For the most part, it's like taking any other pill. You do not bleed more, you bleed longer, but bleeding is stopped in the exact same way-direct pressure for a little while longer. The draw backs to Coumadin are, frequent INR testing in which you may be eligible for home testing, when it comes to other invasive procedures, you need to be placed on bridge therapy or a substitute anticoagulant until after the procedure, some people experience bruising. For your own piece of mind, I encourage you to visit our resident anticoag pro and pharmacists site, Al Lodwick. You can learn all you ever wanted too from there and you'll know when someone is blowing smoke in your face. See it at
www.warfarinfo.com


Surprisingly, it's not too awfully painful. I'm not going to say it doesn't hurt, it does, but nothing like you imagine. They will keep you as pain free in the hospital as possible and on discharge, usually Tylenol with Codeine or Vicodin but that's usual all thats needed.

Don't fret about the breathing tube, most people have it removed before they are with it and do not remember it. It's not that big of a deal if you do have it in. Just try to work with it and not against it and you'll be fine.

The drains-Mine didn't hurt when pulled, but others said theirs did, so I guess it's individual there.

You need to read threads that sound interesting to you in the pre and post surgery sections to help with the remainder of your questions and of course, if you don't find an anwser, just ask.

 

[OldManEmu]

Welcome

Welcome

Welcome aboard. I am sorry to read of you husbands untimely passing with cancer as such a young age. I am not on Warfarin so wont comment. I agree with Ross I expected to be unbelievably painful however it isn't. I would describe it as sore rather than painful. As for pain relief like Ross I was given something when I first awoke after that I was offered nothing except paracetamol. The breath tube was in when I awoke because I remember being hazy and thinking is it in, I couldn't tell. The nurse then said she was going to remove it and it was out. The drain tubes were like Marguerite I was told to count to 3 and hold my breath before each one was removed, I can't say it was painful however it did feel strange when they moved away from your heart. The pacer wires also didn't hurt getting removed however the nurse warned my they would curl my toes; it's a strange sensation as they are attached to the heart, not painful though. There are lots of tips on what to take to the hospital and what you need when you get home.

 

[aussigal]

Hi Gaciebeth and welcome to our second home...

I am almost 7 weeks post-op...

I got a mechanical valve so I have a tiny bit of experience living with one and so-far it hasnt been a big deal, even the blood-draws dont worry me too much ...

I had a difficult surgery but can tell you that @ nearly 7 weeks I am feeling pretty good and the memories of my time in hospital seem a very long time ago. In that respect this is kinda like childbirth...any troubles or pain is quickly forgotten for the new joy or in this case, lease on life you have! I came home from hospital with an array of meds to take. One thing I remember from the early days was not to let the pain get bad before you take a pill for it, ie: always accept the offers of pills while in hospital because your chest/sternum will probably ache for a while. Usually tylenol is enough to keep the aches at bay so dont worry that you may need narcotics.

I remember them taking the vent-tube out and it didnt hurt at all...in-fact it felt weird...and only took a few seconds...I was still pretty drugged-up but clearly remember this event...I remember also immediately begging for an ice-lolly after it was removed...my mouth was so dry...

You have found the best place in the world for valve-replacement patients so ask as many questions as you can ...I found knowledge to be very powerful in helping me and understanding what I was about to embark on.

Marguerite raises a very good point re: the kids...I would recommend seeing if your mum maybe or a good friend would be able to move-in with you for the first month or so after your OP so that you get the rest and help you will so very much appreciate at home. You will most likely have a trouble-free surgery but if you get home-help for those first few weeks you will be able to heal much easier. I wouldnt advise doing this solo.

You sound like a very brave and smart woman...I wish you great sucess on your next journey of getting a new valve...

 

[graciebeth]

Ok lemme answer some questions..

Ok lemme answer some questions..

I dont know which mechanical valve I"ll be getting, forgot to ask that at the meeting with the surgeon last week and he didnt mention it himself.

My kids are daughter (almost)14, son 12 and son 8 and they will be very helpful as, well thats the way they are sadly they've gone thru so much with the battle my husband had with cancer and our loss of him that they are good at being helpful when I need them to be.My 8yr old has concern tht he wont be able to cook lol, which i wont need HIM to do .. I dont have a lot of family,my Mom and her new husband live a hr away and she works, but she will be here as much as possible and I have a great church and people from there will be here often,and I have good neighbors too(Ive lived here 11yrs and they've been here longer--we are like family)

hmm I think thats all the q's I needed to answer..

Oh Im allergic to Coedine, I know I keep reading where people were sent home on Tylenol w/ coedine but I cannot have it so I will have to be on something else..

good to hear that the pain is bearable,which I knew it would be but still nice to hear from people who have been there.

hugz-Grace

 

[Magnus]

I expected that the pain would be the worst part of recovery, but really it didn't hurt that much. I think the explanation I was give was that there aren't that many nerves damaged from sternotomy (the cut in the chest).

I also worried about the breathing tube, but when I woke up after surgery it was already gone so that was never an issue. I guess the worst part for me was being nauseous and vomiting about 24 hours after surgery. There were also some hallucinations which I wasn't all that prepared for so it might be good to know they can happen.

The drains aren't a big deal; you get pain meds before and it only hurts a second or two and then it's over. Don't worry about it. As for pain meds, after whatever the dope was they give you IV for the first 36 hours I got Ultram (Tramadol) 100 mg three times a day. I guess that would be an option if you can't tolerate Codeine.

 

[Georgia]

Welcome, Grace! Sorry you have one more thing on your plate. You've really had a rough go of it. The one thing about the heart valve issue is that it's a mechanical problem that, if not allowed to damage the heart itself, is fixable by a good mechanic. It's quite amazing how much better you'll feel when your recovery is complete. Now, the downside is that recovery can take a very long time. Altho at your age I'd assume that recovery would be relatively swift (that's relative to other valve surgery recoveries; NOT relative to recovery from other more mundane surgeries).

I'm glad your kids are a little older; at least you don't have to pick them up!

The first week you're home from the hospital you'll need someone around 24/7; probably your 14 year old would do; but if you could have an adult it might be better. Getting out of your recliner for a cup of tea is an event you need to plan for.

I'm so glad you found us. Let us know if other questions arise.

 

[Der Biermeister]

Gracie - I think everyone is different with regard to pain thresholds, etc. But let me sooth some of your fears.

The vent tube - I had heard all the bad things too and asked a lot of questions, so I was quite prepared for the worst. When I woke, it was still in and believe it or not, it was no big deal. I was making jokes via hand signals with the PA that was watching over me. In about 20 minutes it was out.

The drain tubes -- they start aggrevating on your second day awake and if everything is on schedule, they will probably be removed sometime during that afternoon. The removal -- like Marguerite said -- is VERY FAST - and because of this, it really is over before you get a chance to be in pain, if that makes any sense? And the relief of having them out is one of the high points of your hospital stay

I had even heard that removing the pacemaker wires was painful - don't believe it - piece of cake.

I think you asked about what drugs you'll come home on. Most of us were give RXs for stuff like Darvocets. Milder than Percocets. I found I needed more -- so I was a bad boy and took some Percs from a prescription my wife had. After a week or so, I was on only the Darvocets and stopped them somewhere around the 4th week.

Ask away - we have a lot of sea-stories to pass on!
John

 

[ALCapshaw2]

Welcome to our World Graciebeth !

I hope you are a good reader because there are VOLUMES written addressing all of your Questions. Please browse through the Pre-Surgery Forum, Post-Surgery Forum, Anti-Coagulation Forum, and maybe even the Valve Selection Forum.

Ross was right-on about Al Lodwick's website - www.warfarinfo.com It has everything you will ever need to know about living with Coumadin.

I would describe my two OHS's as a matter of "discomfort" rather than Pain...although there were times when I had Muscle Pain that REALLY got my attention. MASSAGE works Faster and Better than any Pain Pill for Muscle Pains!

My experience with all the tubes and ventilator was NO BIG DEAL.

Since you prefer a Mechanical Valve, let me say that the two primary 'valves of interest' are the (original) St. Jude Mechanical which is the Gold Standard for Longevity, and the On-X or St. Jude Regent which are third generation mechanical valves that offer the hope / possibility of reduced Coumadin levels and maybe even simply aspirin therapy once the results of (long term) studies become available. There are several studies being conducted in Europe and now the USA on the On-X valve. It looks very promising to me. See the On-X website for more information. A Forum SEARCH will lead you to many discussion of these new valves.

BTW, most of us found that the WORRY beforehand was the WORST part of the whole experience. Recovery does take time, but you will get there and the risks for first time patients under age 60 are very small (1% risk of fatality and 1% risk of stroke) vs. a MUCH WORSE scenario if you do NOT have surgery. Just remember, every member here represents a SURVIVOR or family member of a Survivor!

Best wishes,

'Al Capshaw'

 

[greg]

I'm about 3 years out from receiving a St Judes AV.
Coumadin is handled without much of a problem. Just take a pill a day and get tested as needed.
My biggest pain issue was coughing or using the spirometer thing (lung exercise/torture device). The sternum is a big broken bone. Pain meds work well untill extra force is applied. Even though I complain, it wasn't that bad.... I'm just good at complaining.
Breathing tube was another matter. I fought it rather hard. I wanted it out way before they wanted it out. When the nurse finally pulled it there was no pain, only total relief. With the tube in I just didn't feel like I was breathing. I guess I was fighting to regain a natural impulse.
Drain tubes and the like were no big pain issue for me.
You will need help when you get home. I'm sure your kids will step up, and it sounds like you have a good friend base.
All will work out better than you now believe it will.

 

[DM2059]

I am three weeks out from my AVR surgery. I chose a tissue valve so I don't know about blood thinner. There is know doubt you will come home with a pain prescription. I was given oxycodone and just use Tylenol as of two days ago.
As far as the ventilater tube goes... let's just say I woke up gagging on it and they removed it immediately. I feared the drain tubes also and it was absolutely nothing. Everyday they pulled something out of me and I won't kid you I was scared,BUT it didn't really hurt.
It seems like no two people on here have the exact same experience. Some are similar, but not the same.
I'm sorry about your husband passing. As a result of this you are probably much stronger than you think and you'll be fine. Best of luck .