Home Yesterday

[djacq]

Hello Everyone,

I came home yesterday on my 5th day post op. The surgery went well but in my mind, spent way too much time being intubated as my blood pressure was so low and I wasn?t breathing on my own. Just lazy I guess.

I received the St Judes Valve 21AGFN-756. How does that translate? I am not hearing any clicking yet and am very happy I made that decision. I have no interest in a repeat operation. I think my INR is over 2.0. I was never given Coumadin Education but have had some knowledge from this group and the wonderful info from Mr. Lodwick. I also found it odd they served me so much broccoli in the hospital.

I have been involved in working with JACHO Accreditation for our center by setting up and Infection Control Program and I know good pain management has become and important concept in getting accreditation.

Well, the one nightmare occurred on my 3rd day post op where they left me in chair for hours and hours, Nurse Rachet let it be known she was too busy to get me back to bed and also felt I didn?t require the pain medications I was getting. So, she reduced me from Dilaudid and Morphine to 2 doses of regular Tylenol!!!!!! I didn?t have a phone to call anyone and was in too much pain, nausea and heat flashes to do much about this at the time but the nice little old man who was my roommate (????) was so supportive and tried to get me help, only to receive her wrath himself the next day. I had even begged her to help me get a private duty nurse. Some people should NOT be in med/surg nursing and I may be one of them but got out of that field before I reached the point of torturing people. BUT then again, I am making half their salary.

I do know the reporting procedure and will follow up with this ASAP with the help of fellow nurses who have worked at this hospital before working for me. I feel I have to do this for others she may care for in the future. I did let immediate staff know how inappropriate she was. I will have to meet with the Patient Coordinator and the hospital is 45 minutes away so it will have to wait a while.

The Visiting Nurses are coming in every other day to do my labs etc. My blood pressure is still like 80/50. My Pro Time came in and I am going to do a trial test tonight with Leeanne at QAS . I am taking iron, lasix, amiodarone, aspirin, coumadin 2 mgm a day. I expect these are just post op meds? Well except the coumadin,

I am having trouble sleeping as I can?t get comfortable. I spent half the night in the recliner and half in bed but it was a fitful sleep. I wonder how long this goes on. A good nurse who saved me from the above nightmare, told me the younger you are, the more pain you have due to the condition of nerve fibers, more acute pain. I have no apppetite and things taste funny. Any reason for this?

My husband felt very supportive by the messages he got from his posting and yes, he was/is feeling overwhelmed, tired and incompetent in all of this so it meant so much to him for others to acknowledge feelings he was having. He was particularily helped by wweir who gave him the support he needed to accept no excuses for my not walking. And I DID have a bunch of excuses lined up!!!

My thought are with everyone who has gone through this and wondering about my surgical twins Dave5Baseball and Bunkenmyers?

Again thank you for everything during these past difficult weeks,

Donna

 

[Granbonny]

Welcome Home, Donna

Welcome Home, Donna

I think you are doing wonderful if you can sit and type such a nice long post. I couldn't even make sence talking on the phone Everything you mentioned, not sleeping, not eating, things tasting funny is very normal. I loved cold juices....Did you get to come home with pain meds? Take them..and walk around the house several times a day and nap..Things get better everyday. Bonnie

 

[tlhudson]

Donna

Glad to hear you are doing good.

Being one month post op I can sympathise with you. I still am not in bed sleeping, that is the one thing still bothering me (Chest Pain - Sturnum). Started Rehab yesterday, that should help.

As Granbonny said take your pain meds, walk and nap. Before you know it you'll be back to normal. There is light at the end of the tunnel.

Good Luck

 

[Nancy]

Hi Donna-

Welcome home, the best hospital there is. You sound very spunky for a newly operated on heart valve patient!

I am so very sorry you had the bad nursing experience that you had. Being in pain just isn't good after heart valve surgery because you are not able to breath as deeply as you need to to clear your lungs, plus you then don't want to walk like you should to get circulation going. I am happy that you are in the medical field and can do what it takes to do the appropriate reporting of your substandard care.

The surgeons can do the best job in the world, but if it all falls apart with poor nursing aftercare, it can impede your recovery and can sometimes jeopardize your health.

All of the things you mentioned, the inability to sleep, the nausea and lack of appetite and funny tastes are all normal and things which have been mentioned quite a bit on a lot of posts here.

It will all get ironed out eventually, but will hang around for a couple of weeks. It takes a little while for the surgical drugs to leave the body, and the healing process itself contributes to a lot of that.

Try to eat as nutritiously as possible, even if you don't feel like it. There was a post a while back that mentioned that it takes about 5000 calories per day for the body to go through the healing process.

Do your deep breathing, very important, and your walking. In about 5 weeks, you'll be feeling much better.

P.S., I really had to laugh, when you mentioned broccoli in the hospital. Joe hates it, and all our hospital seems to know is broccoli and other cabbagey type of vegetables. They must be the cheapest ones. The nutrition staff doesn't have a handle on Coumadin patients and Vitamin K. They even tried to dose my husband with Boost at each meal, which has somewhere in the neighborhood of 24 percent of the daily Vitamin K value per can. And this was during a period of time when his INR was at a very low level, after a post surgical (gallbladder) bleedout.

 

[JimL]

Congratulations, Donna, on making it over the mountain! I too had a nurse my last couple of days in the hospital who pretty much ignored me -- but then I was doing pretty good, so it was all right. All the other nurses were super, and belong on pedastals!
Your medications sound pretty normal. I had lasix for a couple of weeks after surgery to remove the twenty pounds of fluid they pumped into me during surgery. When I saw the surgeon about three weeks after surgery, he told me to stop taking the lasix.
I encourage you to check on the amiodarone. This medication is given for arrhythmia, and irregular heartbeat, but it is very serious medication; it really should be prescribed, according to the physicians' desk reference, only as a last resort, but it is often, much too often, prescribed. It has many, many side effects. Perhaps you can get off of it soon. I took it for thirty days, which I feel was thirty days too many.
Since sleeping is difficult for most people after surgery, please enjoy the privilege of sleeping and resting and napping at any time.

 

[djacq]

Jeeze,

Yes, Nancy, I WAS given Boost as I was too sick to my stomach to eat. I can't believe it!! AND my INR was low!!! Wow and I thought it had been a good idea.

Thanks Jim for the info on amiodarone I hadn't looked it up yet and not sure now what to do about it. I did relook at my post op sheet and I am to take it for 7 days. Does that sound any better?? Iwill call my PA today anyway for reasurrances.

It is so sad because WE ARE educated consumers so many others just put their total faith in the medical system. Very scary and look at me a nurse hearing some of these things for the first time!!!

Thanks,
later.
Donna

 

[Nancy]

Our hospital cardiac floor and the ICU unit have terrific nursing care. But every time Joe goes into the hospital, I'm there as much as possible. I know his situation pretty darned well, and I have caught a lot of errors, even with extraordinarily good care.

I can't imagine what happens when there isn't good care.

Many of the errors happen when they don't read the chart (nurses and doctors as wel)l. Joe's chart is long and probably boring, but important info is there. A lot of errors happen as well, when there is no continuity of care.

Donna, when you feel better, I'm sure you'll make a big difference in the care of future patients.

Take care,

 

[EVELYN]

Hi Donna

So glad to see you're up and posting!!! Glad all went well with the surgery, too. Sorry that your nurising care was not up to par, but thank God that's behind you now. I'm sure you're getting top notch care at home!! So very important: walk, walk, walk, breathe, breathe, breathe, nap, nap, nap......you will get better!

Tyce was put on Amiodarone in May after his afib event. Stayed on it through surgery in June and is just being weaned off it . Our cardio wanted him on it for 6 months post op. Hopefully he'll be off of it for good this coming Saturday (last dose). They're not kidding when they say it is a very serious drug and that it can be seen in all the organs of the body. Our opthamologist was able to pick it up as deposits in Tyce's eyes in September, and his pulmonary guy did a baseline fibrosis test when he saw him, too.

Do LOTS of resting----those "Mack Trucks" take alot out of you when they hit....

Evelyn

 

[Creed3]

Welcome Home!

Welcome Home!

Hi Donna!
So glad to hear that you are home. I find it interesting that the nurse told you that the younger you are the more pain you will feel. My nurse told me the exact same thing and for the exact same reason you had written. I had my surgery 11 weeks ago and I am 34 years old. I remember well the side effects of not having any appetite for a little while. But watch it, when it comes back it really comes back. Let me know what your little craving is for...lol!!! Mine was cupcakes. Food didn't taste very good to me right after surgery. Try to eat what you can, get rest, do your breathing and walking. You may not feel like it now, but you will be feeling more like yourself before you know it. Try to judge your healing on a week to week basis, not day to day. You will really notice a big improvement. Let us all know how you are getting along.

Take Care!
Gail

 

[Ross]

Donna I don't know what to say besides, "I'm very happy to hear your home", I went through some of the samethings that you did with the Care I received. No matter who I complained to, it never got better. If it weren't for my wife and kids, I don't know what would have happened. I do know that I'm not about to go back for anything if it can be helped.

I can't wait for your taste buddies to start in on you again. I ate like a pig the moment they got my trach tube out, I didn't care if I could taste the food or not. They gave me Boost also. I drank one or two cans, but that was it.

Everything else sounds right on cue. You'll start feeling better soon, I promise and when you do, Look out world, here comes Donna.

 

[Vicki448]

Donna, glad to hear that all went well and that you're back at home. You're finding out what so many of us did also - posting your concerns and questions and finding out that "it's normal" or "it's nothing to worry about." You've had some excellent replies already to your concerns so I won't repeat. Keep posting and expressing yourself. I can't tell you how much reading what everyone else had already gone through and how much it helped me. My suggestion about sleeping - make pillows your best friend.

 

[Bill Hall]

Hi Donna - Glad to see you are through surgery and home sweet home. I just thought I would pass along my experiences with sleep and appetite. I was in the hospital for 10 days plus about another 10 days before food starting tasting good. Also about the same time period for the sleep. I was up every night and walking around and I was afraid it would never end. But eventually I went back to normal (after about 20 days).

 

[ALCapshaw]

Hello Donna,

Glad you made it OK. Your comments about the nursing care underline the importance for family and / or friends to 'keep an eye on things' as others have recommended in previous posts. Please be sure to follow through on your report.

If you get 3 hours sleep at a time, you are doing well. Just take LOTS of NAPS. Some patients recommend Body Pillows to lay against, or sleeping on the couch.

My lungs / chest wall took a real beating. Doing the breathing exercises 10 minutes every 2 hours helped fill them out and push out fluids that accumulated between a partially collapsed lung and the chest wall. This is a much higher level of exercise than the parting instructions implied, but that's what it took to get better. I also had a case of 'walking pneumonia' 3 weeks after my first surgery. USE the Spirometer !

Your taste will come back. I was lucky on my second surgery. The hospital's beef stroganoff was a DELICIOUS first solid meal !

If your insurance will cover Cardiac Rehab, I highly recommend it. I pushed my heart rate as much as possible and worked the full 60 minutes each visit, moving between 3 or 4 different machines. Arm and shoulder exercises will help loosen those tight chest and shoulder muscles. Hint for your husband: Massages really help relieve muscle pain.

Best wishes for your continued improvement!

'AL'

 

[John Cochran]

Donna,
Welcome home! You are on your way to a whole new healthier life!

I "second" what Al said about using that spirometer...it makes a huge difference.

I had a ton of good nurses, and one bad one during my hospitalization. I could feel my blood boiling as I read what you went through. These days there is no reason for any patient to suffer the pain you did, nor the disregard and disrespect. If it were me, I'd have my lawyers kicking down the doors to that place. There is NO PLACE in health care for people like that, and they need to be removed. Ask me if I have strong feelings about this

But, you are home and the worst is all behind you. I found sleeping was really aided by a body pillow (about 5 feet long) which you can get at places like K-Mart and bedding departments in larger department stores. Lying on your side, with your shoulder and arm and leg supported by this pillow takes a lot of the torque off your sternum and lets you relax and sleep better.

Take good care, get those walks and naps in, and soon you'll be feeling much much better!

Best,
John
P.S. I'll also second what Al said about cardiac rehab; it is a safe and secure way to get back on the road to recovery.

 

[wlaldridge]

So very happy you are out of the "one flew over the cookoo's nest" domain. I had a nurse that would not give pain med unless I "asked" (read as, begged) she said doc's didn't want it over used, I said they don't want me hurting either, she only worked 8 hrs a day thank goodness.

I also had the excess of dark green vegatables and even joked to the docs and they said yeah hospital dieticians don't know anything about coumadin dosing needs.

Also had the tube in all too long. I woke in CICU and wanted it out, would clamp down on it and my blood pressure would drop. I am told the nurse there came to tears once thinking I was going to code on her watch. She would not let them pull the tube. All I really wanted to know was which valve I got. I had told the doc to put in the stentless porcine if possible. Turns out I got a St Jude. Happy for my outcome though.

You asked what the numbers mean. Well I think the first digits "21" means 21 cm. diameter valve. Mine is 25 and that is the only difference between our "part numbers". I was told this is the St. Jude "regent" valve, the newest improvments are included and it has better hemodynamics than the previous versions. The clicking is actually reassuring, I have come to find. We have a new puppy that sits on my lap and seems facinated with the gentle sound, I think it helps her sleep better.

I, as many here, found that sleeping in a "nest of pillows" sitting up/laying down at a bout a 30-45 degree angle from horizontal was the most "comfortable".

It will get better day by day and you will be surprised how fast things get easier.

All our best wishes go to you both.

Bill

 

[hensylee]

Hey Donna - happy you are home and safe with your husband who will take care of the pain meds when you need them. They are really a Godsend when pain happens. As to the amiodarone, I agree with the two others above - it is a last resort medicine and should be treated as such, however, some drs rx it anyway before using others. It's half-life is very long. So make sure the dr gets you off it as quickly as possible.

All sounds as though you are proceeding in recuperation very well. The soreness is there but will be gone and strength will return. You will be new. God bless

 

[djacq]

Good Morning,

Thanks for the info on the valve #'s. Couldn't begin to look for that info on my own.

Also, you all are so rght with using the inspirometer. I do have problems in the apex of my left lung I really need to watch.

The VNA is bring some phone connected equipment to monitor wt, bp, O2, temp and who knows what else and calls the results into my surg everyday.

I am interested in cardiac rehab and will try to look into it soon. I am up and about but we live in the middle of no where in the woods on the coast of Rhode Island and walking is in tough terain, snow etc and with my broken ankle feel I need something safer. When can I do this?

I am still on my mission re: poor nsg care. Yes, family WOULD be good watch dogs BUT I was only allowed visitors two times a day for 2 hours. When my family WAS there it was so signficant to me she made an effort to be there the WHOLE time my family was there. Doing stupid things, stocking the bedside table, disrupting our conversation and when they left the nighmare began. The phone (which was NOT in reach) only allowed LOCAL calls...how stupid). I should have called 911 that would have made my point and got me help!!!

I have taken seminars on JACHO requirements for pain mng and it is very BIG with them the past two years. Even in my field (psych) I have to account that pain is addressed in ANY assessment we do.

They have you over a barrel, as in the echo test the tech tellling me I was surely almost dead and had me believing I would die on my way home and this issue, I almost want to be out of their care before making such major negative reports. Am I just being a coward or clearly fear retaliation?

I am doing my FIRST INR today at 10 am with my new Pro Time. Labs people came in yesterday to do my INR..

I am such a bleeder and have ruined my "best, coming home" new sheets. I know I will learn to deal with this and as John reported am grateful to be alive as I was also in a severe state of Aortic Stenosis per op report. Having little nosebleeds, etc.

Nights are just a BIT better thanks for all your tips.

Donna

 

[JimL]

I don't know what you should do about the poor nursing care, but I sure understand your hesitancy to do something until you recover a little more. It is quite a feeling when you come home from the hospital, with all they have done to you, and still need to do to you.
Cardiac rehab is extremely valuable, and well worth whatever sacrifice it takes to get it. Please ask about it, and learn what your options are. Rehab really speeds recovery, and the guidance of how fast or slow to proceed is very helpful.

 

[R0Y]

Donna,

Good to hear the surgery was successful and that you are home so quickly. That indicates your recovery is off to a good start, even if it doesn't always feel that way.

Nasty that you had to suffer with bad nursing but good that you are following up so others should not have to.

I, too, was on amioderone after my surgery. Needed it when nothing else would keep my heart rate down. Bad taste sensation is one of the many common side effects. Good that you will be off it soon, but be aware that it has a very long half-life -- 30 to 120 days. That means it will probably be a week or more before you can really appreciate having stopped taking it.

Best wishes.

-- roy --

 

[sylviayasgur]

hi donna!
you sound wonderful. i'm so glad you are doing well. i really have very little to add to what the others have said.
just wanted to a dd one little thing about amiodarone.... it is strong. it is a last resort drug. joey has been on it for over a year and is being carelfully monitored, eye checks, lung tests, thyroid monitoring. he is currnetly being weaned off it very slowly and is down to taking pills every other day. hopefully he will be off it in a month or so.
i must tell you , though, it is an extremely effective drug in keeping arrythmias at bay. when nothing else worked, this did.
so, as bad as it may be, it does do the job well. you just have to make sure you are carefully watched while on it.

wishing you a continued smooth and speedy recovery,
sylvia