Linda2 Post-Surgery

[Linda2]

Well, I have finally made it to the computer. So far, this experience has been horrific except for the surgery itself. The night of surgery, they gave me percocet and cut back on the iv dilaudid. The percocet did nothing, and the smidgens of dilaudid every once in awhile would cut back the pain for about half an hour, and then it would be back. I spent most of the first night sobbing in my bed. On the second day, someone got it straight that I was not allergic to codeine, so they started tylenol 3. Since that really wasn't adequate to control the pain for four hours, I would get a little dilaudid in the iv in between, but most hospital personal just told me I would have to get over having that since I couldn't go home with the iv in. Finally, on Wednesday, I got a good day nurse--Judy. Long story short, I can keep from screaming if I take 2 tylenol 3, then two hours later one dilaudid pill, and so on. The night shift didn't quite understand this concept and alternated the two every four hours. PT was aggravated because I couldn't reach the 90 degree flexion they wanted me to reach within the first three days. One of them decided to simply push it to 81 on Thursday afternoon. Thursday night was then another night of sobbing in my room. I went home Friday--getting into the car was a nightmare. I was sent home with a script for 50 Tylenol3 pills with no refills, 40 Dilaudid pills, again no refills, and orders to call for a post-op check in 3 weeks. Those pills aren't going to last one week. Most people do not get a CPM machine for home, but I insisted and got that ordered. It's about the only place my leg is comfortable. More painful than the knee area itself, is an area in the middle of my butt, and in the hip of the operated leg.

To add insult to injury, I didn't "go to the bathroom" (if you know what I mean) until today. That's a total of eight days of no action. AACK!

I'm going to call my internist tomorrow and go in to talk about pain management. I'm doing the exercises the best I can, but I can't even get my leg off the bed in a leg lift. I also can't get it in and out of the bed on my own.

Thank goodness I have such a great husband.

Any suggestions you guys have will be appreciated.

Linda

 

[edk]

Sorry to say, it sounds like Kalamazoo is still in the dark ages painwise.

 

[Simon]

Linda

So sorry you had such a crappy hospital. It seems their was only 1 nurse doing her job.

You are doing the best thing and that is going to your internist as he/she should be able to straighten things out. Pain management is absolutely critically to recover and moving that knee at all.

In the mean time use lots of ice.

Once you have things under control I would write a letter to the president of the hospital about the horrible care. Hopefully your hospital participates in the Medicare Quality of care surveys (broken link removed: https://www.hospitalcompare.hhs.gov/Hospital/Search/SearchMethod.asp)
and you can give them failing marks

If you know the names of the nurses you can report them to your state board that licenses them.

I would also complain to your OS and if he seems not interested tell him that without pain control you can't do PT.

Postoperatively you should have received heavy duty narcotics, codeine or morphine and it should have been continuous without asking for it.

I do hope you get some quick relief.

Simon

 

[Gretchendz]

Goodness, Linda. I'm sorry you are suffering so. It sounds like your hospital was horrible about pain management. Did you complain to your OS when he came to make rounds?

I'm in Grand Rapids (just north of her for those of you from far away places). My OS also did not order refills on the vicodin (maybe it's a Michigan thing)--but it was a simple matter to call his office for refills and have them call it in to the pharmacy. There was never any hassle about that.

As to the other issue, get a stool softener and use it daily! My OS recommended docusate sodium and it worked great. It's over-the-counter.

 

[Simon]

Linda

I forgot one thing. The pain in the middle of the butt could be a pressure sore. It sounds like you could not move much and that is what causes them. I had a pain like that during my rehab stay and the nurses jumped on it which included bringing in a new bed with a newer mattresses.

The PT's were also out of line. They should know better. I know mine were concerned and made sure my meds were changed. Because PT was a different times they put me on MS-Contin 15 mg at 8:00 am and 8:pm (this is extended release morphine) and Dilauded before PT and for breakthrough pain.

Good luck

Simon

PS I also found the CPM machine the most comfortable position as well

 

[ttlncsc]

Hello Linda,

I feel for you. I had a spinal for surgery. Post op, I had a pump that could be activated every 10 15 minutes. Additionally, a nerve block with a pump that could be activated every 40 minutes as needed. I also received percocet 1 to 2 tabs every 4 hours as needed. When all the lines were pulled and I went to PT, I had a breakthrough pain episode and really hurt for about 40 minutes until they could get the order to give me something additionally. On the JCAHO survey that is used to grade and accredit hospitals, proper pain management is a biggie. No one should have to bite the bullet. The more pain and stress, the higher the blood pressure measurements and it throws sugar levels of diabetics haywire.

I came home on percocet 1-2 tabs as needed every 4 to 6 hours. It worked ok. I was on a CPM machine for up to 6 hrs per day for 3 weeks. I was one of those folks that could not sleep with it running. My leg felt better while flexing.

Currently, I am 6 weeks post op and have been started on an anti-inflammatory drug. I had to wait because I was enrolled in a drug study so no NSAID's for the first 5 weeks. I still have a prescription for the percocet and have weaned down to 1 to 3 tabs per 24 hours.

My flexion and extension have progressed nicely and I'm walking without a cane more than with one. Every PT I came in contact with stressed taking the pain meds. They to the person said you would do better.

My history is as a medical surgical sales person and I taught vascular procedures. I'm trained in flight medicine and high risk labor and delivery. I think you are on track with talking to the internist regarding pain management. My belief is that most on this forum feel that proper pain management goes hand in hand with progress. PT hurts and my OS told me to always take pain meds about 1 hour before I went to the outpatient facility. He said his experience showed that those that used pain meds appropriately could tolerate more aggressive PT and were more compliant with exercises. That translated into better outcomes.

I don't understand your OS's very conservative pain management...hopefully he'll have a similar procedure and see the light. A TKA is rated as one of the top 2 most painful operations. Orthopaedic surgery is noted to cause significant pain issues. Ask someone who has broken their femur how much pain it caused.

You might also inquire of the PT department what theyt see regarding pain management.
Keep you eye on the ball and get through day by day. It does get better. Hope that helps. Regards, Tom

 

[AlaskanTKR]

Linda
I am so happy to hear you are home but am soooo very sorry for the experience you have had to endure. I know what you mean about the hospital pt. Just to make you feel better - I came home with 0 extention (can make the sucker go flat) but only like 60/65 flexion. My OS was fine with that. Seems the flexion has all to do with swelling - which I have lots of. I am at 70 in PT now - almost 3 weeks out. Everyone is trying to be positive, but I am a bit worried - but I shall push on.
The meds are insane. I came home with flexeril - for muscle spasms in the knee and percoset. Neither were refillable but all I did was call the os and they refilled the flexeril but couldn't fill the percoset on the phone (we live quite a distance from the os) so the substituted 1 or 2 hydrocodone (10s) every 4 hours. They work better than the percosett. I would bet that if you call for a refill from the os you should get it. I just wish you could get something a bit strobger. I have to say I have not been in any true pain since the first night. It hurts like wild when we measure during ot but that I understand.

Lifting the leg was awful for the first 10 days. I used a "leash" Its just like a dog leash but the handle is stiff as is the length. We tried it with a regular leash and it worked pretty much the same. You slip your foot into the handle, pull tight and then you can swing the leg where you want it to go.

Keep taking the stool softeners. Since I am still using the meds I am still taking them and once you get it going you really want it to keep going.

Getting on and off the potty and in and out of the shower were tough. The bed I figured out how to tackle. I would wake up , it was time for meds so I took them and tried to wait 30 minutes b4 getting up. I did things really slow. Moved the ankle for a few minutes, then just sat up. waited a few more, then used the leash to swing the leg over. Waited some more - usually it felt like a rush heading down my leg, then got up and made my way to the bathroom. Stood a minute or two b4 starting that process. UGHHHH

I am glad the cpm is working for you too. I finally made it to 80/85 today.

If there is anything I could do - I wish you were closer - I am done with the leash thing and would gladly send that on - seriously try a real leash if you have pups - if not maybe even a rope with a loop on the end. It made getting vertcle so much better.

My hopes and positive thoughts are speeding toward you.

Oh - I also found it better for my back to go between the bed and a comfy chair with ottoman (we don't have a recliner). I think this has totally saved my back and butt from rotting out from the bed.

Rest!
Marianne

 

[carolinagirl]

Linda,
I am so sorry that you are having to go thru all of this. Having this type of surgery is enough to endure without having to deal with all that ****!
I am on Vidocin and my OS does not do refills either. But when I start to run low, I just call his office and his nurse calls in a prescription. You poor thing, your hospital stay sounds like a true horror. I agree with the others, I would voice my complaints. I can't believe they did not control your pain better.
Please rest and take care of yourself.
Keep your leg elevated and ice as much as possible. As Jo always says, make sure you don't let your pain get too much before taking your meds. I have waited too long a couple of times and it won't happen again!
You are in my thoughts and prayers. Like Marianne said, just take your time moving around, it will get better Linda, just keep the faith!
Tammy

 

[Josephine]

Sad to say, that almost sounds like an exact replay of my sister's experiences. She had her first knee done and had about the same, but when she had the second done, the nurses were all telling each other she was a 'problem patient' who was addicted to drugs (she's had DF118 for a bad back for years) and she ended up going from early evening day of surgery to the following evening with NO meds whatsoever! Lunchtime that day, I even found the physios forcing her out of bed as she screamed with pain and telling her to be quiet and not make such a fuss! I had to ring the registrar (consultant in training) and ask him to get her medicated at 9pm. She was then the next 24hrs without any more!

The nurses got the her surgeon to have a word with her and he told her off for 'hitting the morphine so hard'. I found out from him later he had been told by the nurses that she had had morphine every 4 hrs since she came back from theatre! I found out that she had actually had 3 lots of morphine in 3 days and nothing else at all. I then stepped in and kicked up such a fuss that for the next 3 days she was properly medicated.

I think they only treated her like that because she was my sister and they didn't like me looking after her.

I am happy to say that such treatment is, in my experience, a rarity but does happen from time to time. I think all nurses who practice this kind of (non) nursing should be forced to undergo TKR or something similar themselves! Walk a mile in my shoes!

 

[Linda2]

Hi all,

The OS doesn't seem to think we need much medication. I will call there for refills, but it is a scary thing to be so dependent on others decisions on medication. I made an appointment with my internist for this Thursday, so maybe the pain control will improve. I am allergic to morphine, percocet, and vicodin, so it's difficult, but I woulen't think impossible.

The pain in my bottom isn't affecting my skin, so I don't think it is a pressure sore.

My husband made me a strap for my leg, but it is too painful when I lower it. I feel trapped in my bed.

The odd thing is, my hospital--Bronson Methodist--is an award winning place. It took forever to get things done, however. It just seemed no one communicates.

 

[Sandy R]

Hi Linda... hope you get the pain meds cleared up and get those refills as you need them. Having a TKR is difficult enough, you shouldn't have to sweat all the other stuff. Hope you have better days ahead.

I'm reading everyone's posts with my future TKR in mind. Interesting that you're allergic to morphine. I have no idea if I'm allergic to morphine but I'm allergic to a lot of things. I've been told that morphine can make you itch... and it's morphine shots they gave my husband in the hospital when he complained of pain after his TKR. I have a long list of things to discuss with my OS at the pre-op appointment. It would be nice not to have any surprises after surgery! Sandy

 

[Josephine]

Morphine allergy gives you a wide spread rash which varies in intensity according to the severity of the patient's sensitivity. It usually starts at the site of the IV cannula after which is can appear on the chest and throat. Mostly it will cease if the medication of the patient is stopped so nurses should be on the alert for it in every patient. Treatment can range from just placing a cold compress on the inflamed area to giving an antihistamine either orally or by injection if very severe.

 

[Dedicated_Dad]

Sorry I missed this before.

This makes my blood boil!!

Some docs hand out narcs like breath mints, some act like they're the holy frigging grail and you need a papal dispensation just to see them. THERE IS NO EXCUSE FOR MAKING YOU SUFFER!!!! It hurts your recovery, as has been proven over and over.

I've learned some are just afraid of the DEA. My Pain Doc will give me all the oxycodone I want, but won't give oxyCONTIN at all. He admits this is fear of the DEA. As a result, instead of one 10mg pill which would let me sleep all night, I take 10mg then wake up ~3-4 hours later in pain and take 10-15 more.

There are only 2 words for this: "Stoo" and "pid." After all, we proved how well prohibition worked back in the '20's didn't we?

After my TKR my Pain Mgt SUCKED. I found out later this was because they figured my fentanyl patch -- which I'd been on for 6 years and wasn't handling my PRE-op pain -- as part of my POST-op pain relief instead of as a baseline and an indicator of my extremely high tolerance for narcs. I was M-I-S-E-R-A-B-L-E. They had me on the PCA pump, set at 6mg/hour MAX. I'm a 200# guy who had been on 100Mcg/hr fentanyl for 6 years - the PCA was giving me LESS than what I was getting pre-op!!

Further, it only gave it when I pushed the button - no push, no meds. This meant when I fell asleep for an hour I'd wake up screaming then it would take 8-10 hours to get "caught up"... I only slept for an hour in the three days I was there. I'm not really ashamed to admit that I had a friend bring my pain meds from home and was "sneaking" them the last day.

I would NEVER do this, and would NEVER recommend anyone else do so either, but didn't really have a choice... I have never suffered like that in my life.

The da*n nurses kept coming in, hour after hour, asking about my pain but doing nothing about it. I finally read my chart and saw what I needed to do to get out of there (poop, pain level <5 for 12 hours, sit in chair for > 1 hour), then DID it or lied about it, hoping I'd have better luck with the rehab-docs. I did -- the rehab Doc took care of me right away.

When I got through to my pain doc and told him what happened, he was LIVID as he'd given specific instructions about my pain meds, which they'd ignored. I was NOT a happy camper!

Thankfully the rehab doc upped my patch enough to handle my pain, and gave me plenty of oxycodone... Even so, it wasn't really enough but compared to the nothing I was getting in the hospital it was great!

And yes -- I wrote to the hospital board and complained. They offered all sorts of apologies, but... The big lesson for the future / advice I'd give to others is this: Don't assume anyone knows anything. If you have a pain-doc, get him involved before surgery and have him manage your pain if possible.

Like I said, he'd given orders but the "hospitalist" ignored them. If I ever see THAT guy... well... I'd like to show him how it feels to be in extreme pain, tied to a bed and unable to do anything about it.

Sorry for ranting, this really upsets me!!

DD

 

[Dedicated_Dad]

Oh, while I am ranting...

These idiot nurses would not let me elevate my leg. They kept saying "your surgeon doesn't want it elevated." I lay there and watched it swell to 3-4x its normal size.

When Doc finally came in and I asked him about it, he said "I never said don't elevate it, I don't know where they got that!!"

They showed him his instructions, which said not to place a pillow under my knee, to keep the leg extended (due to some release he'd done to give me back full extension).

Apparently these nurses couldn't comprehend the difference between "keep knee straight" and "don't elevate leg.

Add this to the lousy pain-management and... I'm sure you can see why I was willing to lie to get out of there!!

DD

 

[hess]

Linda,
I am 8 weeks out today, and really feel for you. The pain meds are SOOO important. Not only does it make PT easier, you are much more comfortable, so therefore, not as crabby with your family! It can make this whole experience so much more tolerable. As the others have suggested, calling and asking for a refill seems to work. My OS has never questioned a refill, which has made this much easier for me. Good luck to you and keep pushing!

Hess

 

[Rowdy66]

I Read Some Of These Posts And Am So Grateful That I Had The Doctor, Nurses And Hospital That I Did. I Was Treated Great, And My Pain Management Was Absolutely Wonderful. I Got My Baseline Pain Meds Plus The Extra Pain Meds I Needed To Control My Pain And I Went Home With Enough Pain Meds To Handle The Post Surgery Pain Until I Could Get Back To Just Baseline Pain Meds I Normally Take. And Thank God My Doctors Are Not Afraid To Prescribe Oxycontin, It Is By Far, For Me, The Best Pain Management I Have Ever Had And I Don't Ever Feel Hopped Up Or Dopey. I Just Feel Normal And Relatively Pain Free So Long As I Take Them On A Regular Timed Schedule. Rowdy

 

[Josephine]

Nice rant, Dad! I'm with you in everything you said - much of it applied in my sister's case. She had taken oxycodone for about 20 years for a back problem. They never ever factored that into her possibly being resistant to analgesics after either op.

There is a rule that one doesn't place pillows under the knee soon after surgery as it has the same effect as crossing the legs - it can increase the risk of thrombosis. But that risk diminishes after a few days.

 

[Linda2]

Here's an update. Now that my internist upped the the dilaudid to 4 instead of 2, alternating with Tylenol 3, the pain has been manageable and I usually make it three hours or more between doses. The hours between 9pm and 2am seem to be the hardest. I can get the CPM machine up to 93, the extension has been ok right along. I also actually managed a straight leg lift independently on Wednesday, and did 10 on my own at a time yesterday and today. I start outpatient PT on Tuesday. I am looking forward to getting going on that.

I haven't made it to the computer often because it is tiring to sit here very long. If I had a laptop, I would be here all the time!

Ice, elevation, my body pillow, and Colace are my best friends.

My husband has been a great helper, and I finally think that this TKR might be all right after all. The incision looks clean, but I think it will be forever before these steri-strips let loose!

Thanks for all your support. I'll try to post more often.

 

[AlaskanTKR]

Linda! SOunds like you are making good progress. Don't worry about those steristrips - My OS made me leave them on (and keep them dry)for 10 days after the staples came out. We started pulling them off at PT yesterday and I finished last evening. I am going to have such an ugly knee - but I don't care - just as long as it works again! The pain gets more manageable (except after pt -for me). I can go 6-7 hours sometimes 8 if I am busy and/or icing at that time between meds. Icing really helps extend the time. PT bashes me so I fall a bit short after it and need something shortly after getting home even though I take them an hour ahead. Glad your doing so well. I have a laptop and know what you mean. It is so much easier. Your CPM numbers are great - keep on goin!

Marianne

 

[MAMAYAMA]

Linda - I almost cried reading your horrible story. I do not believe that there should have been any reason why you had to endure that much pain. There are just too many meds available to handle the pain we have with TKR. I had that wonderful morphine drip for two days and pushed it as often as I wanted. When they took me off the morphine I went to 2 Vicodin every four hours, and I knew when those four hours were ending. I could have also had Demoral in additon to the Vicodin, but got through with just Vicodin. I rang for my pain meds every four hours. I wasn't trying to be a Super Woman. I don't know of anyone that has ever had a refillable Vicodin script. I just call my OS and they call in a refill for me. At four weeks post-op I still rely on my Vicodin, two in the morning to help me get moving and through my PT and then during the day I take one every 6-7 hours.

While I was spending nine days in the convalescent home I was getting a stool softener daily. I also went eight days. When I got home I stopped taking my stool softeners and BOY did I suffer. Once back on them I have not had any problem. So like everyone says "Take those stool softeners."

I used a belt to help lift my leg. My PT put the belt through the loop and I put my foot through the loop, held the belt and pulled. I had to do that for a couple of days and then could handle it on my own.

I hope you push for the kind of care and pain relief you should receive. Also, report those people that gave you poor care.

Susan (MAMAYAMA)