TKR Need Help and Encouragement, please...

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BrnEydGrl

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Hello Everyone and Happy New Year,
I am brand new at this and really need some advice and help. I had a right TKR 11/26/2012. I am 62, a relatively new widow, and have just moved to the area one year ago to help my 92 year old mom and step-dad with Parkinsons. They are both now in assisted living and I have moved into their little cape cod.

A little background on me. I was told I needed a replacement from three different doctors in three different states! My husband and I were National Park Rangers and moved quite a bit, it was wonderful. We were married 40 years and he passed with a sudden cardiac arrest, no warning. I was, and still am devastated. I put off the surgery until my parents were safe and situated.

I do not know a soul in the area and did not know where to start. I went to one doctor for a meniscus tear repair a year ago and was not really comfortable with him. I did a web search and found someone to meet with and even though it was a short visit I set up the surgery. He said "not to worry, the surgery is "nothing" and if you have any pain it will be managed." That was exactly what I was told. I then asked anyone, and I mean anyone, store clerks, secretaries, if they have heard of him. I did get one main reaction "he is an 'assembly line' and I would not go to him". Well, I thought, I do not care if it is a assembly line as long as he is good. I do not need anyone to hold my hand. Boy, was I wrong and now I understand what people meant.
Well, I never saw him again, until right after the surgery for five seconds, him saying "all went well." I was pre-scheduled to see him five weeks later for post op.

I had a terrible time with the hospital case worker who evidently did not like to do paperwork. When I went in for blood work, etc I met with her. She showed me what a room looked like, said this particular doctor keeps patients 2 nights and that was it. I explained I did not know anyone, I was a widow and bedroom was on the second floor. She said that insurance would not pay for a bed downstairs and I only had to go up one flight of stairs one time at night. (I have federal insurance and had no problem) She then said I needed nothing else. I asked about a "lift" for the commode, she said it was not needed because "I was short." Then she tried to set up physical therapy and I explained I had no one to take me and wanted it done in the home. She said they did not like to do that and "maybe" I could get someone for a week or two to come to my house. I was devastated and contacted a friend and asked if she could fly out to help me. She came and stayed a week and a half after coming home from surgery. Thank goodness!

I then had the surgery. It was surely not "nothing." I have had surgeries in the past, right after hubby died I was diagnosed with uterine cancer and had a total hysterectomy. I also had the meniscus surgery and bulged several discs in my back years ago and other minor surgeries. I knew one thing, Percoset only worked about 1½ to 2 hours on me and Vicodin was one step up from plain Tylenol. I explained this to them several times.

The doctor did not believe in compression socks or that movement machine, he said they did not work. I had MAJOR swelling and bruising as was told by the nurses that was typical from this doctor because he did not use drains? Needless to say, my pain was never controlled. All I kept hearing was, "this is how your doctor does it." Percoset every 4 hours was not doing it! They finally used dilaudid and I had a few hours of relief but then back to Percoset.

The following day they tried to get me out of bed. My knee was so swollen I could not do any therapy and barely walk five feet. That second night again was hell and the house doctor or someone added Oxycontin on a 12 hours schedule. The following day I told the house doctor it did not work and he said it would take a while to kick in and that pain medication would not take care of all the pain. I was aware of that. The nurses said I should be released that day. I was shocked and the therapist said no way! They kept me one more night.

Another night from hell and a nurse telling me just to "breathe" and she could not give me any more Percoset. I again explained that drug does not work and they wanted to give me Vicodin per the doctor! I just wanted to go home. I still could barely walk but finally the day I was to leave they got be to walk to the doorway and back with the walker. They took out the catheter and released me with 5 days worth of Percoset.

I had a home nurse that checked on me twice a week and a therapist that had her "set exercises" even though I told her I could not bend the knee and cried she insisted on the same exercises. Next time, same thing. I asked if I could do a different one to get it to bend that was not as painful? She ignored me, it was hell. She never even looked at my knee or under the bandages. It was a huge sausage!

The nurse understood but they never spoke or saw one another. My doctor's office never called to check on me so my therapist called them to let them know I can only bend 47 degrees. Guess that meant nothing to them. My friend had to go to the office to get the script again, they only gave it for 5 days. I called them and let them know my friend was leaving and asked if the script could be for 10 days because I will have no one to drive there and pick it up. They said NO! I got so upset they said ok 6 days and stretch it out. I was taking two of the 5 mg Percoset every 4-6 hours. This was unreal and I figured I would tell the doc when I saw him in the 10 days.

Well, no doctor at the post op, just his assistant. My knee was at 50 degrees and he said, work with the new therapist as an out patient, and see you in three months. We do not consider manipulations until then. He did not seem concerned and gave me a script for another week.
I decided to call two days before the meds ran out and they said no more Percoset, only vicodin. I explained my therapist and I felt I still had to have the Percoset since we were trying to push through this ROM.

I am now at 60 with two weeks of hellish therapy. Finally after having a total meltdown and had my insurance company case worker call they gave me 2 days worth. (they have been helping since my husband passed)I insisted to have the doc call me, he did not. They said if I needed any more they would call in Vicodin. I said, fine, I was so tired of fighting but please give me the strongest because it normally does not work. I went today to pick it up and it is the lowest, 5-500.

I am so disgusted, I have a knee I cannot bend and am still in so much pain and alone. I am going to contact my regular doctor, I explained what was going on a few weeks ago and he said if I needed help to call him. He knows me and understands when you need help with pain you should have it, not abuse it, but have it. This is so ridiculous, I could see if I abused the drugs by using to much etc. but have not. It has been a month and I have followed the prescription to the letter, even pushing it a little when I can. I have never been treated this way and being totally alone makes it even worse.(big sigh)
 
BrnEydGrl big hugs to you! And yes go to your family doc and see if he can give you a stronger pain med. Percoset tore my stomach up and I was so sick I couldn't get to PT for almost 6 weeks. What I found that worked for me finally was Dilaudid in pill form. Tell the family doc you have difficulties getting around and no family support, so please give you a larger rx. I would definetly give your OS the what for when you see him. This surgery is so incredibly painful and to hear docs like that only hand out a few pain pills like that is just wrong!! Geesh my doc was giving me 120 pills at a time. I still have a bunch of the Dilaudid left. I am not on Percoset w/o Tylenol. Come to find out it was the Tylenol that made me so sick. Hugs!
 
Oh, you poor thing! My heart goes out to you! I have no advice for you since I am just beginning my own knee journey, but I'm sure someone will be here to talk with you soon. You have come to the right place! I've only been here a little while, but I already know it's a wonderful place full of compassionate, supportive people who have been through what you're going through and are so willing to help you. Please stay around, and you will get lots of help and advice.

You are, most certainly, in my prayers. One thing I've learned from the short time I've been here is......IT DOES get better! Please hang in there and take care of yourself.
 
Oh BEG, I am so sorry to hear about your rough post-op experience!
Do not rush into manipulation. I am surely no expert, but without drains (my 2 were in 2 days) I think that fluid has to build up somewhere, hence your extra swelling.
Are you icing and elevating? Can you supplement the pain meds with Tylenol?
For the first 3 weeks I had very gentle home PT, nothing at all that hurt.
At the 4th week I was able to drive to my own PT appointments.
At this point I would recommend LOTS of icing and elevating, some very easy PT and walking around, and whatever pain meds that you can use supplemented with non-narcotic pain meds. Bonesmart has a 'cocktail' of non-narcotics that might be helpful. http://bonesmart.org/forum/threads/medications-tylenol-ibuprofen-cocktail.12217/
Good luck and keep us posted!
 
I am so sorry you have had this happen. What an awful experience. Could you put where you are located in your profile? There is always a chance your are in a place where someone else from the community might now of some resources that could help you. Like Nanners said above, contact your regular doctor to see about better pain meds. It is very hard to go this alone. But we are here for you and others will come onwith some recommendations for reading.
 
Welcome to Bonesmart,
You have had a horrible experience, I am sure some Moderators will be along soon with advice and some reading for you. Your regular doctor will be able to help you control the pain and find the medications that work best for you.
The Bonesmart mantra is Rest, Ice, Elevate, and Medicate on schedule.
I will tag the moderators for you, referee54, Jaycey

I would sure be thinking about finding another surgeon to follow your knee.
All the best for a turn around with your TKA and that your smoother recovery starts now with the New Year.:angel:
 
I just cannot believe how some people get treated I am reading your post and my heart breaks for you and I won't tell you how I feel about the way you have been treated except to say that it is appalling to say the least. Please contact your Dr and I pray he will help you, but if I can offer any advice which isnt a lot I am about 9 weeks out for trkr ICE! ICE ICE! It is extremely soothing when in so much pain and of course elevate. I really feel for you being alone this surgery is so hard I cannot imagine being alone, I am very blessed to have a supportive family and yet I still feel alone because it's hard for them to understand. This forum has helped me immensely I don't write often I do read it daily though but I had to respond to your post I am praying you get relief from your Dr soon if those people were to have this surgery you can bet your bootie they would respond to you differently. Where are you located? Paula
 
That is just shocking treatment!
I hope your surgeon needs a tkr soon!
 
welcome 8.jpg
Brown Eyed Girl, so pleased you have joined us on the forum. I do wish you had found us before your surgery and am appalled at the treatment you received. I have some reading for you! The first set is essential reading, the second and third are useful and the fourth is just good information, but you will need it all.

Group A
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?
Progression of activity for TKRs

Group B
How Long Does Healing Take ......
Chart representation of TKR recovery
Energy drain for TKRs
Elevating your leg to control swelling and pain
Using ice

Group C
Knee Replacement - Where Am I in Recovery?
So What Is It Going to Take? The Five “P’s” of Knee Recovery
Work “Smarter” and not “Harder”
About recovering a knee - from one who knows!
Some suggestions for home physio (PT) and activity progress
Myth busting: The "window of opportunity"

Group D
MUA (manipulation under anaesthetic) and adhesions
It's never too late to get more ROM!
It's Worth the Wait for ROM
Myth busting: on getting addicted to pain meds
Post op blues is a reality - be prepared for it

Please do not be overwhelmed--the articles are not lengthy and you need the information in them. You absolutely need proper pain management. So please see your regular doctor for help in that department. And just follow the BoneSmart mantra:

- 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!

Right now you need proper pain management and to get your swelling down as much as possible. So lots of elevating (toes above nose)
elevate.gif
and ice, ice, ice
ice-cube-smiley.gif
! You can do gentle bends and stretches--but only to discomfort---NEVER pain!



Please take care of yourself and keep us posted. We care.
consider yourself hugged.jpg
 
Wow! I can't imagine that kind of treatment. I am so sorry you are going through this. I will pray that your doctor gives you the right pain med to get you comfortable. Also that you can find help as well through this forum. Big Hug!
 
Oh my goodness, what a terrible time you have had. It's so difficult to lose a spouse unexpectedly, then have your parents failing, and having no support locally, then the TKR,the mother of operations. You are a brave woman!

I agree with Elanor, if you can share where you are located, perhaps a member can provide guidance towards support and better OS aftercare. Your gp should be able to help you with pain control but you still need direction from the OS as you recover.

Please read the articles and apply what you can to your situation. If you are affiliated with a church, perhaps you can find support there as well.

I do wish you a much better time in the coming weeks and months. You have landed at a place that will help save you when you need it the most. Keep us posted and ask any questions you have. There is a world of experience just a few clicks away!

All the best,

Dawn
 
Welcome to the group. Sounds like you are having a heck of a time. I sure hope you are elevating and icing, again, with being alone, that is difficult, but not impossible to do. Not sure if you have the means to hire someone to come in and assist you for awhile. Don't know where you are from, but in the US there are many places that will have someone come in your home to assist you with anything you need and take you places. I am so sorry about the loss of your husband too. My sister is just 60 and her husband just passed away and it is very hard. You have found a great group here.
 
I am sure you feel like a victim right now. You have come to a wonderful place. We will take care of you. Let us know where you are so that we can help. No one should ever be treated like you have been.
First things first..getting your pain under control and following all of the wonderful advice here. How sad that there are people in the medical community that treat their patients like this. I know OrthoDoc will be rolling his eyes and cringing if he sees this. It is a disgrace to the medical profession.
Sending you lots of hugs which will not get rid of your pain but may soothe your mind.
 
It made me so sad to read your post. It is bad enough going through this operation with full support of OS, physio with an understanding of what is needed and family to help you out. You havent had any of that and your OS ought to be ashamed of himself to have so little knowledge of the operation he is performing. To get pain management right is one of the first things we need to do. Reassurance and a little symphathy wouldnt go amiss either. Please feel part of our lovely bonsesmart family. We are here to help you rant, know how weepy you can feel sometimes and congratulate you on each little milestone. Once you have your meds right and icing and elevating which should help the swelling go down then you can think of physio and improving your ROM. Please let us know how you are getting on. We are all here for you.:console2:
 
I cannot thank you all enough! Just to know it is not just me feeling sorry for myself. My home nurse assured me that I was not the only one going through this. She was ready to quit since she had seen the same thing too many times with this particular doctor.

I am now taking the low dose vicodin he prescribed and all it seems to do is upset my stomach. I think that is what happened before. I was really hoping that if I took it with my Advil (which seems to work well with the Percoset) that it may work.

I still cannot understand why he did that. Did he not care or not get the message. Why has he not even talked to me since the surgery? Unfortunately it is going to be a long night. I will ice ice ice and elevate. Sometimes I wonder if I do it too much! Tomorrow I have P/T but I am going to call my GP first thing in the morning. When I did see him he was not happy with the way I was being treated and told me to contact him any time. He was upset that some doctors think their patients are cookie cutters and should be treated as individuals. Thank god for him. I hope and pray he does not let me down.

I live in the Lehigh Valley, PA. I am still so shocked over all of this. As my insurance case worker said to them...there is no way she could be abusing your drug as she would not be able to fill another prescription before the date the other runs out! Now I cannot medicate regularly. :( I thought I was doing everything I was told. It has only been five weeks today. It makes me so darn depressed and it makes me feel good there is at least someone here to talk to.:thankyou:
 
I think they all need a big fat slap across the face. I'm blessed with a wonderful doctor who has provided me with enough meds to last me for at least 3 possibly 4 months which is how long I needed them last time.

I do understand that the nurses have to follow what orders have been written but they also have access to contact the doctors when requested to do so. You have rights - perhaps you should look in to how horrible you were violated when you feel well enough to do so.

My condolences on the loss of your husband - my dad died many years ago unexpectedly from a heart attack and it does take the wind out of you for quite some time - never mind having to manage elderly parents as well. Good for you getting them squared away too.

Best wishes and I hope you get what you need. 5 days worth of medicine was probably the same amount that some of us take in a day or two. I'm thoroughly disgusted on your behalf.

Be well my friend, be well.
 
You certainly do have people here to talk to and we will give it to your straight from the hip! Some surgeons are only interested in doing the surgery, they are not interested in being doctors so once the surgery is done, so are they! You GP was by far the best bet for help as you found and thank the good Lord for him!

Now the first thing you need to bear in mind here is that too much activity will make you leg swell hugely and swelling will prevent it from bending at all. So what you have is nothing that is going to need a manipulation, just good management of pain and swelling. There are several articles Judy posted for you previously - one is about the swollen leg. Do read it carefully as it pertains to what you are suffering now.

Second thing is what to do about it and the plain answer to this is - nothing! By which I mean DO nothing, or at least very little. First thing is to get rid of that PT, she is no good for you. Worse, she is BAD for you. You don't need any PT, you can do this on your own.

Next, you need to apply the mantras in Judy's post. Religiously. Then you need to read the progression of activity article. It's all too easy to feel like time is your enemy here but it's not - rushing is your enemy. Doing too much too soon is your enemy. Relax and do the mantras. They are your friends! Check in regularly and I will keep tabs on you. Let me know daily what you are doing and I'll guide you along, okay?

You might like to read the potted version of my recovery to see how little exercising I did! Knee recovery - UK style

Another thought - try ringing your local church and telling them that you are in a fix and need some help. Even though you are not a member, I am sure they will be more than willing to help with getting your meds and so on. Good luck and keep us posted.
 
BrnEydGrl, I am so sorry that you are having such a hard time. Maybe your gp could refer you to another ortho doc. On top of all that you are going through the Blues are a very real part of the recovery. I didn't think that I would get them but I did and it was right around 5 weeks. I hope that things will start looking up for you. Read the articles in the library and I really like Josephine's idea of contacting your local church.
 
I am new to this site but I want to encourage you to follow the advice you have received here. If physical therapy hurts that badly you need to call and insist on a new person who will work better with your needs. After I changed therapist at the company's request I made so much more progress. She messaged more and gently to help move the swelling out. She visited with me like I was a friend--- not a job. We worked hard but if an exercise made me cry she would remove it from my program for a couple of weeks. Here's hoping that you get relief.
Pam
LTKR 12/19/11
 
Hello,
Like everyone else I am dumbfounded at how horribly you've been treated.

This is a really hard thing to do on your own. I know, as I've done it twice. My siblings are an hour away, and they did/do phone to check in every now and then. (hmph!) But they're not really any use because they're just too far away (among other reasons!) Like you, I had a friend stay with me for the first few days each time. Like you, my therapist after my recent TKR was causing more harm than good. The kind folks here encouraged me to get someone else. I encourage you to do that too. But at least I have a good surgeon. I hope by now you've contacted your GP for pain meds. Can you get your pharmacy to deliver?

I think the idea of asking a church for help is great. (If you go far enough back on my thread, you'll see I received the same advice. I actually took some of it and it helped!). Is there any way to get groceries delivered?

So dear BrnEydGrl, please know you are not alone. Know we've all been through this surgery. Know we care and know you are in our thoughts. And know you can come here to ask, rant, cry, celebrate, befriend. This site has surely been a blessing in my recovery; I hope we can help you too.
 
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