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TKR This has been the worst, most painful, most careless surgery ever

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Pumpkln

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Glad to read you are getting some help from the home health service, we have all been concerned about you and the poor experience you have had since your TKR. I hope is is all sorted now and you continue to receive the care you deserve. :friends:
Keep us posted on how you are doing, we care,
 

Josephine

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Satsu, the disbelief was not that we disbelieved what you were saying, only at the apparently disgraceful care you were receiving. If we sounded angry, we were angry for you not at you. I was horrified at the poor treatment your received. It was unconscionable. But we are on your side - 100% on your side. Please don't ever think otherwise.

However, I am delighted that the nurse who came to you seemed very busy and proactive in getting things sorted for you - my kind of gal! I hope you start feeling better soon.
 

Jamie

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I'm sorry if my comments upset you. Of course we want to help you and will do our best.

I'm happy to hear you have some home health workers who are coming and actively working to get things straightened out for you. I had no doubt that you were in pain. But without knowing what medicatons you have on hand, it's impossible to offer much help.

It does sound like there was a huge disconnect with your blood thinners. You made the correct decision to go with one or the other and not both Lovenox and Coumadin. The reason that the prescription bottle only says to take as instructed is that your dosage may vary frequently based on the results of your INR tests. It is critical that you get these tests on a regular basis so that your INR levels stay within the proper range. It sounds like your home care nurse will take care of this for you.

You misinterpreted my comments about what the doctor said about the possibility of removing your implant. My disbelief was that a physician would say such a thing - not that you weren't telling exactly what happened. My hope was that you would disregard his comments and not worry about it. Granted a clot can be a matter of life and death. But the treatment for a clot does not involve removal of a joint prosthesis.

The activity that will be helpful to know is what you are doing each day. Are you exercising or having therapy? How often do you get up and move about the house? What home chores are you doing? Errands? The reason this is important is that too much activity too soon can cause pain and swelling.

Of course you couldn't log in and respond to questions when you were not well or in the emergency room. No one expects you to be online constantly. It sounds like your pain is better today....is it?

Here are some basic recovery articles for you to read that will help you understand what your recovery may involve. Please don't hesitate to ask questions if you have them. We will try our best to help you.

First are the BoneSmart mantras ....

- rest, elevate, ice and take your pain meds by the clock
- if it hurts, don't do it and don't allow anyone - especially a physiotherapist - to do it to you
- if your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again
- if you won't die if it's not done, don't do it
- never stand when you can sit, never sit when you can lie down, never stay awake when you can go to sleep!
- be active as much as you need to be but not more than is necessary, meaning so much that you end up being in pain, exhausted or desperate to sit down or lay down!

Next is a FAQ (Frequently Asked Questions) thread.

And here are some very crucial articles

The importance of managing pain after a TKR and the pain chart
Myth busting: no pain, no gain
Swollen and stiff knee: what causes it?
Activity progression for TKRs

Healing: how long does it take?
Chart representation of TKR recovery
Energy drain for TKRs
Elevation is the key
Ice to control pain and swelling

Home physio (PT) and activity progress: suggestions
Myth busting: the "window of opportunity" in TKR
Myth busting: on getting addicted to pain meds
Post op blues is a reality - be prepared for it
Sleep deprivation is pretty much inevitable - but what causes it?

And finally some wise words from members who have shared their experiences ...
Where are you in recovery?? (TKR)
Five “P’s” of knee recovery
TKR: work “smarter” and not “harder”
Recovering a knee - from one who knows!
It's never too late to get more ROM!
It's worth the wait for ROM
 

cjf1222

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@Satsu
Do not mistake any of the above comments as personal criticism. People here have been praying for you here. When we don't hear back from someone so distressed, we worry that you are ok.
Jo has heard a lot of outrageous things said to patients and no one can believe that anyone would say that. It's a sense of outrage at the doctor, not disbelief in you.
There are many experienced people on BS who can help but the more info you can pass along the better we can help you.
It sounds like people have been frightening you and that is awful. I'm glad the home nurse has been helping. I am praying the next few weeks get better for you so you can get on the path to healing. God Bless.
Christie
 

Janet2012

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Hi Satsu, I'm so sorry you are having such a difficult time! You must feel very battered! This IS the place to come for support, understanding and information. I've been here since before my knees were done more than two years ago. I know that everyone here responding to you cares very much and is on your side, regardless of how you may have interpreted their responses. I know the comment about not believing what the doctor said to you was not disbelief of you, but just being appalled that the doctor would say such a thing to you. I don't blame you one little bit for feeling defensive after being treated so poorly by the VA, your doctor and nurses, etc. I would be in tears! Please, know that you are not only welcome here, but as someone truly in need of help and support, people here will worry about you, WANT to help, and will cheer for you when things improve!


Sent from my iPad using BoneSmart®
 

CanukTriMom

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@Satsu

I had a very bad reaction to Dialud wherein my body went into spasms. You might have the same sensitivity, just a thought. In any event I truly hope everything gets straightened out as once you receive right combination of pain meds, you will feel so much better! We had our surgeries on the same day yet mine was a new left hip, anther method

Cheryl
 

Jane B.

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@Satsu, how are you doing now? Are you more comfortable? This surgery has a long recovery and you got off to a tough start. I do hope things are better now.

I'm glad you are able to take the blood thinner pills, because I'm still taking the shots and I am very tired of them!

Are things working out for you in your home and with your sons? My two are here and do not get me started! If I ask them for something, they do it, but the look on their face is priceless. Like I never changed their diapers, fed them, or did a trillion other things for them?

I worked in the medical field for many years. I know this is a rare, and things have been tightened up, but I know of two health care workers (nurses) who diverted narcotics from their patients and injected themselves. It's the first thing I thought of when I read your post.

Take care,

Jane B.
 

puffin

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Sorry that you are having such a bad experience. I think that some doctors are very bad in preparing people for the extent of the pain following this particular surgery. It also sounds as though communication has been very poor in your doctor's absence - thank goodness you have home nursing help.

I think that the step-down from IV morphine to other strong pain meds is hard for many of us - I know that I found it very hard as you don't get exactly the same relief but most hospitals do this after a day or two. One tip that I got here was to take pain meds by the clock (ie ever 4 or 6 or whatever hours it says on the bottle) - do NOT wait to be in pain as it takes longer to work and I always felt less effective. Don't let anyone put you off taking your meds - "cancer" med are also the ones used for bad post operative pain which is what you have after such major surgery

Some people have bad reactions to some med - Oxycontin caused me bowel spasms and diarrhea so I had to change to a different med - so talk to your medical team/nurse and see if you can get a change

You are only just over a week post surgery so it is very early days - initial recovery will take several months and full recovery usually takes a full year
 
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Satsu

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Thank you everyone. Yes, I am scared, but I'm trying to keep a cool head (as much as possible) and not let these doctors rattle me.

Here are my current pain meds:

  1. Hydromorphone 4 mg tabs. 1 tab by mouth every three hours as needed for pain.
  2. Oxycontin 10 mg CR. 1 tablet by mouth every 12 hours.

Here is my current blood thinner:

  1. Warfarin 5 mg tabs. 1 tab by mouth at 5:30 pm daily.

I get up about 15 times in a 24 hour period, for a few minutes at a time (until I get worn out). I might do some dishes, potty, tend to my small business, prepare some things for mailing, might have to go on an errand, etc. While lying in bed, I move my ankles a lot. I trying moving my knees in different ways, and when the muscles spasm, I try to figure out what motion caused the spasm, and then try to find a different way to do whatever it is I need to do. I've been using my stomach muscles more because of the knee spasms.

Tomorrow, at 11 a.m., I get my bathing help arriving for the first time. I will feel so much better once I can get a real shower or bath. These bed baths just don't cut it.

My pain level today is between a 7 and an 8.
 

CanukTriMom

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Wow the dosages for your OxyContin and hydromorphone seem low perhaps one of the med prof can comment on as they would be better qualified.
 

Pumpkln

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Not all OS's use CPM's anymore, outcomes are the same if not better.
Is the CPM uncomfortable or painful? If so tell your home health nurse, and call the OS and let them know.
8 hours is on the long side, most are asked to use it 6 hours or less a day.
Latest research is that CPM is not necessary for TKR's except in rare situations.
 

Jamie

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If your pain level is generally 7-8, then it is not being managed properly. You say you are taking one 4mg hydromorphone every 3 hours. Do you continue that through the night as well (for a total of 8 tablets in 24 hours)? Can you please also tell me what the prescribed dose is on the bottle label? Is it something like 1-2 tablets every 2-4 hours?
 

cjf1222

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You will feel better after your shower! I remember my 1st one using my shower chair. I used the CPM three times a day for about 1 1/2 to 2 hours a day. Went up on the setting very slowly.
A 7-8 level on pain is way to much for you. Have your nurse review meds with you. Adding Tylenol every 6 hours a couple hours after the narcotic helped me but you have to be careful with total amout of tylenol taken. Some pain meds also contain tylenol but you can tell by the label so this must be included in total for day. My doc said maximum of 3000 mg. in 24 hour period.
Hope you feel better.
 

kneeper

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For me the cpm became uncomfortable for me after about 2 hours. I used it twice a day for about 1-2 hours each time. How does it feel for you? There's no law that you have to stay in it all day. The main thing is to move your leg through its range over the course of the day.
 

Pumpkln

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