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Bilateral TKR jbrooklyn recovery: short-term loss for long-term gain.

Hello, all. I need advice. I'm in the hospital, day 2 after BTKR, and I feel so much pain, and the measures being taken to address it are not working. I asked for a consult with pain management, and the nurse around 4 am said she would make the request. The request never got made. Physician's assistants and nurses say the pain team has looked at my chart and suggested certain meds. THey haven't been working for the better part of a day. Basically I've been under-medicated and miserable (to point of tears) since they took out the epidural. And they say, let's just give this a chance to work--but it is not working.

What are the magic words that will get me effective pain management? I just told the PA that I don't feel I'm being adequately cared for, and he said, I'm sorry you feel that way. I've been repeatedly asking for a face to face meeting with pain team, not just their looking at my chart. I want to talk to them. let them see that I"m in bad shape, etc. We have to "try this" (what I'm currently on that isn't working) for a few more hours.

Totally frustrated and suffering, and don't feel heard. A friend is coming to the hosp this am to advocate for me. Please give me ideas that will help. Thanks, guys.
 
I'm sorry I don't know what to tell you to get what you need. Through this process my surgeon and other people I know have told me that they have pain management figured out for patients. I won't know until Tuesday when I have my bilateral done if they are right and hopefully you will have this figured out long before I am able to give you any advice. I will continue to keep you in my thoughts and prayers. I sure hope you are able to get relief from the pain soon!
 
I'm with Cowgal on this, not having actually gone through the surgery yet. But I would want someone with a loud voice and good legs there to make enough noise throughout the hospital to make things right. Might also put in a call to your OS or his staff; pretty sure they won't like what's going on. Heck, were this happening to me, I just might start screaming as loudly as possible until someone got the message. But that's just me. Hope someone starts listening you soon. We're all in your corner and would do the screaming for you if we could.
 
Definitely you need an advocate to rattle some cages. Not acceptable that you haven't seen a pain manager. That's protocol, I'm sure! I'm so sorry. I had to do some insisting the first day in the hospital while they figured out what would work. Good luck, keep us posted.
 
As things work differently here in the UK then I don't think I can offer you much practical advice other than to echo what others have already said. Do what you need to make yourself heard and refuse to take no for an answer. Hope you get it sorted out very soon.
 
Thanks for well wishes and advice, guys.

Three of my friends came to hospital today to advocate for me. I finally saw pain doc late this afternoon and he prescribed higher doses, a combo of pills and shots of dilaudid, also iv tylenol. He said no one had consulted the pain team, despite my being told since last night that the pain team was looking at my chart so they didn't need to see me. I asked for a face to face consult since 4 am, and finally got it. He said all I have to do is have him paged. (I asked for that and was blocked by the PA.) The physician's assistant I had been dealing with clearly liked being the middle man--seems he did not want me directly dealing with pain team. He and the night nurse seemed to reach an agreement to tell me pain mgmt was looped in when they were not. So frustrating, and given the pain I was in, mean. Some rough hours there.

Now it is better since he wrote more meds in my chart, but when I ask for meds by the clock, there have been delays and rigamarole from the team on this floor, so it takes like 40 min to get each dose, along with a lecture on how much better oral meds are than shots. At least I get them though, which is good because adequate meds make all the difference in the world. Before = trembling and crying from pain. After = manageable main and willingness to do PT.

I've gotten up to walk very slowly with a walker, and had a look at my knees; eek! But they say they look good. Cheers till next time!
 
I'd be pressing the nurse call button every 5 minutes until they changed my meds or sedated me. It's very frustrating for them to act like it should be working when clearly it isn't working. After my c-sections I was very careful to take the pain meds as often as I could and I'm guessing you are too. I'm sorry you're in so much pain - I hope it has gotten better since you posted this morning.

**You posted while I was writing...lol! I'm glad to see that the doctor stepped in - SO frustrating!! Take those meds by the clock and don't back down on that - it makes all the difference to your recovery. I'm happy to see you're doing better!
 
Yes, staying in front of pain is crucial. The "middle man" PA told one of my friend/advocates that I had gotten behind on meds, as it it were my fault. She said: Let's be clear that I was behind b/c someone removed my epidural a day early out of a sense that oral meds are better--and randomly assigned oral meds that not remotely up to the task. I'm not certain whether the person who removed the epidural even knew I am btkr, and also that my surgeon's technique means minimally invasive but more painful acute phase of recovery.

Anyhow, on we go. I appreciate the caring remarks, all.

Has anyone heard from @LHop?
 
I haven't seen anything from Lhop. The last post that I know of was a few hours before surgery and she was expecting to go home today and would not have a computer at the hospital with her. Hope she is doing well.
 
Hi and glad you made it to other side. It's a ride till the end but will be totally worth it.

I so can relate to you in aspect of staff and treatment and pain Meds. In Ky we don't have no kind pain management team. It's Paige doc. 1st day it's iv Meds,till time u was brought on floor. Then it's pill but if to much pain can be I iv med every 6 hours but pain has be 10+ and trust me they know who lies. And Tylonal is given to. I had a bad time in hospital. Everything they tried made me sick. So they had to get me iv team.

Anyways enough about me. I hope your new knee or knees treats you good. Them 1st steps is the hardest and scarier than ever.

I wish you the best in recovery. Soon your life will be pain free. Xxxxx


FaithMitchmommy
PKR December.1,2014
TKREV MARCH.2,2015
 
Jumping (sorta) for joy with everyone else that someone finally paid attention to you, the patient and the customer. So glad you have the pain under some control and are looking forward to getting on with getting on; several of us will join you shortly.
 
I'm sorry you've had such a tough time getting your pain medications sorted out. Frankly, that's unacceptable.
I'm glad your friends were able to advocate for you - it always helps to have a backup person, to speak up for you.

Do make sure that your surgeon knows that your pain protocol was unsatisfactory, and that you did not get the help you needed.
 
Good news that you've hopefully got your meds sorted. Now you can start your recovery properly. Hope the meds are helping.
 
@jbrooklyn - I didn't realize this thread was here. I've been looking for an update from you all week. I am about 10 days out from BTKR. Frankly, your post about the pain issue frightened me, but I will make sure to grab a couple of people by the scruff of the neck before I go in to make sure that we're not going to have that issue. So you have helped me by posting it. There is nothing else I can say, except that I am thinking of you.
 
@LHop, sending best wishes your way! Please ping me and @iivesfam5 when you're back online.

Thanks, everyone, for companionship and caring, advice and information. It helps so much to get through these rough first days.

Meds are better managed, but everything is a tradeoff. They tend to mess up your tummy--I've eaten almost nothing since the surgery. Whatever I've read says take your meds so you can do PT, and if it hurts like hell, don't do it. So I'm trying to balance that with my digestive tract not really waking up yet . . . gotta move to get that going, and gotta take meds to move.

Most of the caregivers here are kind and seem like angels, but some seem judgmental and that one guy "the middle man" was downright obstructive. I've been vocally very appreciative of everyone, but cannot find it in my heart to thank anyone who is harsh/judgmental. I know their job is really hard--but so it recovering form btkr, so let's work cooperatively, eh?

The PT folks are nice, but one young guy is insufferably cheery. The "geepers" type. He makes me crabby--I sure as hell am not going to have a wonderful day quite yet, sir. I do aim for polite but it wears thin. It would be an amusing YouTube video clip with Mr. Sunshine and crabby old me getting through a session together. I know they have to be cheerleaders, but I don't react well to human Hallmark cards. :heehee:

I will be here till Monday, so 5 days. Not sure if I will go home or to a rehab, but probably the latter. Walking is seriously painful so far.

Here's a maybe useful tidbit for others: Expect your elbows to get irritated b/c you use your upper arms to scoot around the bed. Mine are somewhat raw, and the nurse gave me these cunning little elbow pads. If your hospital doesn't have them, maybe bring some big bandaids to the hosp with you to protect your elbows.

Once again so grateful for all the info and companionship--you guys are the greatest. Cheers and till soon--JBrooklyn
 
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ps for @MsBlue: I'll and we'll be here for you with ideas, support, advice to get you through early days post btkr.

Be the squeaky wheel if you have to. They definitely do have the right combo of pain meds for you--you just have to be adamant about finding them, and wanting to be in on the decisions that get made. Also have some outside advocates at the ready.

It took my friends talking to the "middle man" to tell them I was tough and stoic, and that if I was shaking and sometimes crying from pain and reporting pain at 7-10, it was accurate and needs a swift and significant response. The guy doesn't have any context for who I am--just some whiny woman in a hospital gown. My friends were able to drive home that I'm not a complainer and that the problem was very real.

The more I think about it, the more I want to write a letter to this hospital to let them know about what happened with this unkind knucklehead. Anyhow, my rant is done . . . but do be ready to squeak, and try to arrange for someone to be there to advocate as needed.
 
Great to hear you sounding better and feisty! Echo what you say about the pain meds vs tummy issues. I've single handedly kept the anti sickness medication industry in business these past few days!! Hoping that things continue to improve for you.
 
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