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Bilateral TKR Trying to cope with the wait

Oregon mom

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Hello! I'm brand new here. I'm fairly young (47) for a bilateral total knee replacement, but I am on a waiting list with seemingly no end.

I have always been very active (running, kayaking, cycling), so now the daily loss of my mobility has been crushing.

What makes this extra hard is that I'm the mom of a very active 7yo boy. My dreams of playing soccer and baseball with him have been obliterated and it is all I can do to maintain my emotions at the end of each challenging day.

I've made peace with never running again. I just want to be able to walk again. I want to actively play with my son and I can't.

I was told back in February that the wait list was about 4 months, but that was before the pandemic. Now, who knows? I've been thanked for my' patience' and told to work with my pcp on pain management during these 'challenging times.'

How are people coping with sudden disability? With the endless waiting without a surgery date? With the daily pain of just getting across the room? Any parents of young children grieving because they can't do the things they want to do, like play tag or go on a hike?

I'm on an antidepressant. I take Meloxicam daily. But the fact is my knees need to be operated on so I can start trying to get my life back.
 
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capecoral

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I know how you feel I was scheduled in May Got cancelled I was scheduled again for July 9 I got cancelled the day before I am now scheduled for July 23 I'm not holding my breath that I will have surgery The waiting is mentally exhausting Not to mention the pain I need both knees done but my doctor will only do one at a time
 

Sara61

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@Oregon mom :welome: to BoneSmart although Im not familiar with the waiting time in America I'm sure one of the more senior advisors can give you more information, meanwhile I will leave you the pre-surgery guidelines

If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:
Recovery Aids: A comprehensive list for hospital and home
Recliner Chairs: Things you need to know if buying one for your recovery
Pre-Op Interviews: What's involved?

Regardless of where you are in the process, the website and app My Knee Guide can help you stay organized and informed. The free service keeps all the information pertaining to your surgery and recovery in one place on your smartphone. It is intended to be a personal support tool for the entire process.

And if you want to picture what your life might be like with a replaced knee, take a look at the posts and threads from other BoneSmarties provided in this link:
Stories of amazing knee recoveries


We try to keep the forum a positive and safe place for our members to talk about their questions or concerns and to report successes with their joint replacement surgery.

While members may create as many threads as they like in a majority of BoneSmart's forums, we ask that each member have only one recovery thread. This policy makes it easier to go back and review history before providing advice
 

Sara61

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The "wait" is worth waiting for, in the not too distant ( I hope for you) once you've had your Surgery you will eventually get your life back, and you will be able to do some of the activities that you mentioned and enjoy playing with your son. Whilst waiting do try to be positive, instead of playing tag, maybe start a puzzle or a board game something you can both enjoy doing together.
Fingers crossed that you get surgery soon, once you know your dates let's us know then, so that we can create a signature for you xx
 

kneeper

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I had to wait several months for my first surgery because of the way I had to schedule around my work. I know how tough it is to wait.
:console2:
Icing your knees can help a bit in addition to whatever your pcp recommends for pain control, but it is hard.

I like Sara61's ideas about board games. Can I guess you've already tried things like playing catch while you sit down or inventing games that allow your son to run around but involve you in some way?
 
OP
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Oregon mom

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Thank you so much! I think a good step was joining this forum. There's so much about arthritic pain that people who don't have it will just never understand. It can be very isolating and I don't want to burden my family, who also can't understand.
I have so much more compassion and understanding now that I am experiencing this. It is scary when people whiz by at the grocery store. It's frustrating when people get impatient with how slowly I must walk. I understand that I must look like I'm trying to get in the way, or that I'm incredibly lazy.
I did find that swimming with my son was a wonderful way to play actively, but then the pandemic closed all the pools. We have done lots of activities where I can stay seated. But here we are in the fourth month of the shutdown with no other kids in the house, no playgrounds, no pools and I'm the main person in his life. I think I've done pretty well, but I'm starting to get burnt out and I truly feel my knees falling apart. I worry that I will completely lose my mobility.
 

DJL1967

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Hi Oregon mom. I am in the same boat as I was placed on the list for bilateral's in December with the expectation that I would be scheduled for June. Well, here we are in July and all electives here have been cancelled since March. I don't think I will have surgery now till at least November at earliest. I too have been struggling emotionally and physically with this delay. Simple day to day tasks are not simple anymore, I get fatigued and frustrated easily, fear of the unknown has been very scary and depressing as I cannot plan anything in advance and my quality of life at this point is not all that enjoyable. Covid has taken its toll on so many people in so many ways I know I am not alone. I can only wait it out and try to stay active and be in the best shape possible prior to surgery when ever that will be.
Good luck with your situation. You are correct that this forum is a wealth of information and I am frequently finding answers to a lot of my questions or concerns.
 

SpaceGirl

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I am sorry you are struggling so much right now, as if this pandemic isn’t enough already to drive us crazy! I am young too, just turned 43 in May, had my first knee done at 40 and the second one, just 3 weeks ago. I have 3 kids (nearly 20, 15 and 10) and it sucks not being able to do things with them.

I know the waiting game as well, when I first went to the OS he took one look at my xrays and said I needed both knees done, this was probably May 2017. I had already commited to coaching my girls volleyball team that fall so I could not have surgery until mid November. My OS did not want to do both knees at once, so I had to wait for the second one.

Just know that the wait will be worth it, it was night and day different for me after my first knee surgery. My left knee started feeling better so I pushed off having it done since we had a lot going on. Finally the pain caught up with me late 2019 and just when I thought I was going to schedule it for early summer, covid 19 stopped all of that. When they re-opened elective surgeries I called and got in about a month later.

I hope you are able to get on the books soon, so you can get back to living life and playing with your son!!
 

Jaycey

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I worry that I will completely lose my mobility.
Mobility decreases significantly as we wait for surgery. But the good news is once those worn out joints are replaced you will be able to regain mobility. Slow and steady is the best approach. Works every time!

Hang in there @Oregon mom . Your day is coming!
 

lovetocookandsew

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I know how hard it is to need surgery to relieve pain and take your life back, only to be put off due to the current situation. I'm in a similar boat and am also waiting for everything to open up and allow me to get the surgery I need. While I don't have a child, I do have grandchildren, and it does limit the things I can do with them that I'd like to do, so I totally understand.

I'm sorry you have to wait to take your life back, but I am glad that your doctor is going to do both of them at once; one surgery, one recovery is, IMO, a much better way to go whenever possible. Know that while you are currently unable to do all the things you'd like with your sweet boy right now, the day is not too far off when you will be able to do much more. Until then, keep on doing what you're doing to spend time with him as you have been, you're doing great! I know he appreciates whatever you're able to do, and it'll be a nice surprise for him when one day you can hit a baseball, play catch with him, or similar. Hang in there; and if you need to vent or have questions, we're here for you!
 
OP
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Oregon mom

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It is SO touching and encouraging to read these kind words. I've been rapidly losing ability for just over a year now, and only now have I reached out to a community of people who are in different stages in this journey. Reading about your experiences makes me feel so much less alone.
I was already on a vague "4 to 6 months" wait to be scheduled a month out. So at worst, I was looking at 7 more months. But then the pandemic has added evermore layers of ambiguity. No one wants to make any promises as things seem to change each week.
Hearing that it will be worth the wait gives me hope.
I had some initial doubts about pulling the trigger on BTKR. I had joked with my surgeon that it kind of felt like signing up and preparing for a terrible car accident. But now, I have no doubt that I'm ready for this. It's scary, stressful and overwhelming to think about having both of my knees replaced with prosthetics. But I can see now where I'm headed and there really is nothing to lose.
Thank you so much for taking time out of your days to send such kind, helpful words you a stranger.
I can feel myself moving towards asking questions about recovery...
 
OP
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Oregon mom

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I FINALLY HAVE A SURGERY DATE!
Aug 31
I could've scheduled for 2 weeks from today, but my husband reminded me that HE needs to be able to schedule for this as well!
I'm scared, hopeful and excited.
I feel a little overwhelmed, but that's better than feeling hopeless.
We live in a 2 story house, no shower downstairs.
We have a 7 year old boy.
We're in the middle of a pandemic, which makes getting help challenging.
I wish I knew how long it will take to be able to walk on my own, etc.
I have so many questions..
 

pamsknees

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Awesome news @Oregon mom ! You can do this! I was up walking the day after surgery- I was lightheaded but my knees felt so much sturdier that they did before surgery. I wish you a speedy recovery
 

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