TKR Meecies musings (questions, comments, maybe some venting here and there too)

[Legseleven]

Thank you @meecies

 

[meecies]

Oh, I am seeing the OS Aug 12th for the pre-surgical consult. In the meantime I am dealing with a metabolic bone disorder that has yet to declare itself, and now have high urine calcium that is being leached from my bones.
It was high 2 mos ago, endo said stop calcium supplements and lower dose of Vit D retested urine calcium and it had doubled to a very high level. Now have to go for another test in 4-6 weeks. Having a head CT and xray of my pelvis on Wednesday because the endo said she still has not ruled out Paget's fully, especially given this new wrinkle with the high urine calcium. Dexa scan shows osteoporosis in the left forearm. I don't need all this extra angst, really. I am trying very hard to keep thoughts about the surgery in a box in my brain and only take a peek from time to time because frankly I am terrified. I read too much, heard too much and have seen too many of the bad outcomes and want to punch anyone who says it'll "all be ok because it was for them" in the face - so I am staying away from all the friends who went thru this surgery and went on and on and on about how bad it was ("brutal") and who begged for narcotics and took them for 2 months and now, a few years later, are saying they were up cooking the day after surgery and doing their own dishes and I call BS because that's not what they said at the time, so yeh, I just needed to get that off my chest! lol

I am trying to figure out how to set up my apt for afterwards and I just can not picture what it will be like.
My closest reference for this would be the fractured tibia/fibula and pelvis that had me bedridden for 6 weeks. I didn't see that coming so I mean, I just dealt with it. I was on demerol (50 yrs ago- they don't even use that any more I guess) and could manage the pain ok but I was just a kid (18) and was in pretty decent shape. Now I am weak from the metabolic bone disorder and even my PT is worried because of how much strength I have lost in the past year. So anyway, I am hearing you can only stand for 5-10 mins at a time in the few days right after surgery so, how do you prepare food? Do you just sleep a lot for a few days? I know, I know everyone is different but I want to try to set things up to make sense. I only have a twin bed, no headboard, so it's not really comfortable to sit up on this bed. I am HOPING someone will let me borrow a recliner for maybe 2 weeks. I do not have any living room furniture, no sofa or soft cushioned chair. Will I be able to sit on a hard kitchen chair for long periods of time? Because to me it would be very depressing to stay in bed. I have no TV but I do like to watch YT videos, but the computer isn't in the bedroom...So not sure how that's going to work. I am afraid I will go crazy being all alone, but I can't relax when other ppl are around, so IDK.

I am wondering how much I should offer $ wise to get someone to go to the store for me, or bring up my mail (mail room is on the first floor I'm on the second) or take out my trash. Right now my shoulders are very weak so I really worry a lot about falling. Ok this is my worry post. Now time to put this in a box in my brain and not think about it.

I have a possible job for September that will hopefully cover the costs of this-paid help, transportation, all those special things they want you to buy (special soaps etc) They think everyone can just afford all this stuff, but I definitely can not, unless I get this job, so I hope it doesn't fall through. Ok that's it for now. I will get through this somehow. I want to go for a long walk again without so much pain. I don't expect to ever be pain free for the rest of my life, but to just be able to walk for an hour, that would be so so great. I can't make it more than 15 mins now without horrible pain in my feet. Not my knees-no pain there, in fact my ROM has actually improved in the past 2 months! Amazing, but I'm just a freak I guess. LOL

 

[mendogal]

Hi.

It's pretty universal that during the initial few weeks after knee replacement we do NOT do at all well sitting upright on a chair, be it a wooden kitchen chair or a well upholstered reading armchair, or even a sofa.

It's the having one's legs downward, feet on the floor that's the problem. It increases swelling, it just plain hurts, the knee stiffens terribly and we mostly don't tolerate it for more than ten or fifteen minutes.

We really NEED to have our legs elevated. And to be able to somewhat change position because we stiffen quickly. Borrowing a recliner for 4 - 8 weeks would be SUCH a help!

And in the initial weeks, yes, five minutes walking with the walker at a time. Food prep is problematic if you don't have a stool to sit on, as standing still is harder for most of us than walking.

There is a thread about dealing with this stuff living alone:

Thread 'Home Alone After Surgery'

Jun 21, 2015

I've started this thread at the suggestion of @snowleopard .

Some people have to manage on their own when they come out of hospital. It is possible to do so, with some prior preparation.

This thread is for people who manged on their own, to give tips and information about how they managed, what they planned in advance etc.

• Celle
• Replies: 163
• Forum: Knee Surgery Pre-Op Area

• 

Meanwhile, I hope they get to the bottom of your strange calcium problem!!!!

 

[Layla]

I read too much, heard too much and have seen too many of the bad outcomes and want to punch anyone who says it'll "all be ok because it was for THEM" in the face - so I am staying away from all the friends who went thru this surgery and went on and on and on about how bad it was ("brutal") and who begged for narcotics and took them for 2 MONTHS and NOW, a few years later, are saying they were up cooking the day after surgery and doing their own dishes and I call BS because that's not what they said at the time....

Can we try to reframe this...
I hear how hard this is for you, but I think when people say "it gets better" or "you'll do just fine", they're not trying to minimize your pain, but only trying to offer you hope. Everyones experience is different and your concerns are certainly valid. It might help to remain open to the possibility that progress will happen, even quicker than you're anticipating, even it your situation feels more difficult given your unique circumstances. You may be cheating yourself by avoiding well meaning friends. You always have the option of changing the subject, or kindly telling them that you're following your physicians guidance and timelines for recovery.

I wish you comfort, sound advice, a surgeon you trust and are confident in, loving nurturing relationships and peace of mind. May today be a good day!

 

[meecies]

Borrowing a recliner for 4 - 8 weeks would be SUCH a help!

thank you for your response
oh 4-8 weeks is unlikely to be possible but if I can borrow it for 2 weeks that would be a great help.
The person who offered it to me prefers to sleep in it herself, and she's had both knees done so she knows what a big help it is to have one, but I had a hard time asking her for this much. I have to find someone to move it from her place to mine too and if I don't get the job in Sept I may not be able to afford to do that, but I'm trying to take it one day at a time.

There is a thread about dealing with this stuff living alone:

yes I've read thru it, and I guess I'm still not in the "right" frame of mind yet because I have yet to find a single person in that thread who truly went thru this ALONE. They had varying amounts of help (and/or went into rehab, something I am dead set against- don't even get me started on that, it's a huge trigger for me)
I got a few ideas on how to do some things...but a lot of the best ones involved a lot of money.
It seems to be assumed that you will not be on your own for those first few days or weeks.
and I just get very sad thinking about having to hire a stranger to come in if I really can't manage those first few days.
I worry a lot about the carpet in my place AND the tiny bit of solid flooring- the tiny areas of solid flooring are INCREDIBLY slippery when wet! I spill stuff a lot and even a tiny bit of water sends me flying

the carpet on the other hand is some sort of awful indoor/outdoor industrial stuff- it grabs your feet (If I walk barefoot indoors it literally rips the skin off my feet!!) shoes and slippers 'catch' in it all the time. I have to be very intentional about lifting my feet up high enough to avoid tripping on the front of a slipper or shoe.
When I am tired, I trip ALLLL the time because I tend to try to scuff along...
so that scares me
I have been trying out different options for foot wear, I got these cheap water shoes that might work ok, as long as they don't slip off
might be good in the shower too. the bottom has some small ridges to make them "non slip" but they are very small ridges and the material so far does not catch as much as my shoes or slippers

I also got some plastic shoe covers that are supposed to protect your carpet from wet or dirty shoes or boots, I've tried those on my bare feet actually and though they do make my feet sweat, it's a better alternative then wearing socks which also tend to get stuck in the carpet

the darn carpet is like velcro!! never seen anything like it . There have been many residents who have fallen due to it - one broke her ankle (that was just after I moved in) and recently this poor woman who broke her hip, then her wrist , finally got out of rehab and came home and not 2 days later, she tripped on the carpet and ended up with a compound fracture of her femur!! she's a small lady and must have fragile bones to begin with (much worse than mine!!) the poor woman!!

anyway I digress
but you see where some of my fears come from., heh



I just don't know what to expect. Falling is a big fear of mine- I lost my balance getting in to bed last night and hit my head on the folding table I have set up next to it. Ouch! I mean, I lose my balance a LOT now when I am not drugged and not recovering from major surgery...
eek!!
but anyway right now my goal is to get my muscles as strong as I can and to try to make $ to hire help
I am pretty sure compression stockings are going to be ordered (I had a provoked VTE when I was 18 but in my records it says PE and my records also show that I have afib- except in the past 15-20 yrs (I can't find my records before 2010 but I'm pretty sure I had my first afib episode in my late 40s) anyway in all this time, I've had a total of 5 very short episodes, and for ALL of them, I self converted. The only one that went over 24 hrs was the first one because they tried cardizem (which is standard practice, they did nothing wrong there) and it put me into a much more dangerous arrhythmia and it took 3 days to get that sorted) I was quite angry about that.
but most cardios and most other drs assume you need to be on blood thinners for this condition and that is not the case. The cookie cutter medical system throws everyone on the fool things, which cost an arm and leg. You aren't at risk of a stroke for at least 24 hrs. I rarely have an episode that long, and I only have one every 3 to 5 years LOL so yeh....
anyway I know my insurance doesnt' cover those stockings and they are expensive.
I saw a vascular surgeon back in 2017 for a very painful vericose vein that I was hoping to get ablated but medicaid would not cover the surgery without a trial of compression stockings and they would not cover the stockings- and the surgeon said I had to get the prescription ones (over $60/pr back then - who knows what they are now!) and not the ones you can get for around $10 off amazon

so yeh...

but the thing is my arms and shoulders are very weak and I have trouble pulling up regular knee sox so even I got them I likely wont be able to get them on LOL

anywayyyyyyyyyyyyyyyyyyyy!!
this is tonight's ramble about misc things on my mind
I got a sewing job to finish up, just need to ice my neck and take a muscle relaxer for my shoulders

One good thing!!!!
let's try to end this on a positive note!!

I already have a lot of different things ON WHEELS!
I have a small rolling shelf unit , a tiny but mighty rolling um, not sure what to call it, but it holds over 100lbs- Used to use it to move the air conditioners even though my biggest one was around 65-70lbs (some years back when I was on the 3rd floor and could still lift that much-- now I can't lift 30 lbs - I'm not even sure I can lift 20, and I'm not going to check -I'll ask my PT to help me figure it out where it's safe)

anyway I have another cart on wheels and a actual bed table like they use in the hospital. It doesnt' really work well over my bed, I have a mattress on a metal platform frame thingie with no box spring and it gets caught on the metal supports but it's handy for other things

love things on wheels!! LOL
I have an old step stool/ladder thing but it's very wobbly, not sure if its' going to be safe to use in the kitchen
like this one but VERY VERY Old and wobbly and can't be tightened up (a friend tried and it didn't work) it's kinda rusty too but it's my only thing to reach top shelves so I keep it

Cosco Retro Step Stool with Sliding Steps | Ashley

Here's a chair that rises to the occasion. It is modern-meets-retro with chrome-tone accents, pull out steps and a padded seat and back. Rocket red faux leather upholstery enhances the nostalgia. This versatile bar stool does double duty as a step stool making it a handy helper in the kitchen or...

www.ashleyfurniture.com

Maybe I can borrow a high stool chair thing- I have friends who have 2 in their kitchen just for show and to put stuff on sometimes but they never sit on them, as they've got a kitchen table and a huge dining table so maybe they wouldnt miss one for a week or so IDK

They might be too tall for me though, I"m only 5 2 now ( I lost almost 2 inches in ht )

hmmm....
must think about this

 

[Jamie]

One suggestion is prior to surgery, take things you might need down from high shelves and put them on one of those carts or on counters. You should not be on any type of stool or ladder to reach things after surgery for quite a while.

Try to prepare some meals you like before surgery and freeze them in one or two portion baggies so you just heat and eat them. If there are any frozen meals you like, fill your freezer with those too. Stock up on canned goods you like such as tuna, soup, Spam, Mac and cheese, etc. They don’t take much time to prepare. Also have plenty of cereals both hot and cold and canned fruit. It’s also good to have a supply of a protein drink/meal supplement such as Ensure on hand.

 

[meecies]

Thanks everyone for your continued support.
My shoulders hurt a lot today so this will be shorter than my usual lol and that's a good thing, right??
Good news- no signs of Paget's disease in the brain CT nor the pelvic xray. Shocking surprise though with my left hip- I'd been told I had OA there but to my untrained eyes, it did not look too bad (I have copies of my xrays) I mean you can clearly see that my knees are really messed up! They are just destroyed, but even on todays pelvic xray my left hip does not look that bad to me. There's a bone spur on the underside of the socket but the joint space doesn't look too bad to me, but it's "severe" according to the radiologist. It has been acting up a bit lately (and for the first time ever, really) It will "catch" sometimes and once it happened when I was getting down off a chair and that was pretty scary. It happens at the garden sometimes too, and it's a bit achy but really- I would not compare it to what has happened to either of my knees. Any casual observer can see that I've got some serious issues with both knees. So yeh, I don't know how this will impact the surgery.

If I had my preference- and IDK maybe I do?
I would actually want the left hip; done first, then the right knee and then sadly the left is progressing rapidly (well, maybe regressing is the right term? it's going bad fast) This is a frightening and almost comical situation for someone who has been dead set against any surgery to be in...it's just, IDK. I have to call and see if there is any help available for me at all. I don't know if I'm going to be able to afford to hire any one, but one day at a time
I do not have Paget's!

Now to find out if I have sHPT or pHPT or nHPP (I def have one of those LOL)
and also to find out if I have renal calcium leak, or if the high urine calcium is from one of those 3 parathyroid conditions just mentioned. I am hoping for door #1 because doors #2 and #3 mean - guess what? More surgery! I'd need to have one or more para-glands removed- and that will delay Ortho surgery.


It's been a trip, but I don't regret not going ahead with the TKR last year because once they had done the pre op blood work - they'd have seen that the PTH issue has to be addressed first

 

[meecies]

Just heard back from the OS's assistant - she said they typically do the most painful joint first. Well- hahaha, that would not be my right knee- my right knee does not hurt at all! My right foot and ankle hurt but that's because of the biomechanics above. My left knee also doesn't hurt. My left hip does hurt, but not to the degree that I would consider I needed surgery except I just remembered something my PT said- he said the reason my left leg is so much weaker than the right is because I might be favoring my left hip! Just automatically without noticing or thinking about it, so- this is oddly enough, very good news. I am not afraid of having a hip replaced, call me crazy, you wouldn't be totally wrong haha, but from everything I've heard and read it's a much easier surgery. I am afraid of having my right knee done when my left leg is so weak because I already fall over all the time so this is actually the best possible situation given that I've got a lot of OA (it's in the right hip too but it's mild-moderate there)

Getting the L hip done first will lengthen that leg and then I can get it stronger so I'll be in better shape for the right knee and then, only if necessary, we'd do the left knee. So strange to be relieved by this news. It explains so much of what has been happening.

It's good I don't have Pagets-that has no cure and not much for treatment. I still don't know about the para (calcium regulating) glands but that should be sorted out soon. I don't think I'll need much if any help after hip surgery but I will go and check that out and um yeh! Wow what a strange turn of events!

It would be great if getting the left hip done makes it so I don't need the right knee done because honestly, my right knee has been thru so much and it's kept going and going and I feel like it's kind of "been there" for me and I hate to lose it. I really do. I love my natural knee, even as deformed as it is and at least for now it looks like I get to keep it a bit longer <3

 

[meecies]

Back from PT. Assessment didn't go the way I thought it would, so how difficult would it be to recover about 1 hour away from where your doctor is? I have an offer to stay with friends, but they live out of state, approx 1 hr away. This would be for the TKR not the hip, I don't think I'll need much if any help after that.

 

[benne68]

how difficult would it be to recover about 1 hour away from where your dr is???

It really depends upon how frequently your surgeon wants to see you during the first few months after your procedure.

I only needed to go in to see mine at 2-weeks post-op for an incision check, and then again at 6-weeks post-op for X-rays. My surgeon is a 30-minute drive away, so I had someone to drive me and I elevated and iced my knee in the car.

You should ask the surgical team about this, because they all have their own protocols.

 

[meecies]

It really depends upon how frequently your surgeon wants to see you during the first few months after your procedure.

There's no wound check here afaik, but 4 or 6 weeks post op you see the surgeon for your post op. I know I was shocked and so scared when I found out that I was not going be able to walk the 1/4 mile to the drs office at 4 weeks! This is a hard thing to comprehend. I will need people to drive me places for an awfully long time and that is not going to be cheap! I guess I forgot to mention that the problem most likely would be because I'll be in a different state.

I don't know if I can fill prescriptions in a different state with my insurance (medicaid is only good in your home state, unless it's an emergency) I don't know if you get your post op meds in advance or not... I would hope so. I can't imagine they expect you to go get a prescription filled on your way home from surgery! A lot of my friends and their friends, had a very hard time getting in touch with anyone after surgery for any reason. They kind of dump you and disappear after surgery. We already know I'm going to be hard to medicate, and I'm pretty sure I can't get any Rx's filled if I'm out of state. I've got to find out. Everything is up in the air once again.

We learned today at PT that weakness is not the reason I'm falling- it's likely more the fear of falling and being unsure of myself. My confidence is shot and having people come at me with all these demands about what I have to do or think or feel is not helping any. The only way this will work is if I can have someone with me that I trust to make sure I'm ok for the first few days or week. And then this happened! I got a surprise offer to stay with friends out of state... after having the KNEE done My head is spinning. I really want to accept, but there can't be too much extra work for them- they haven't even moved into their new house yet, or sold the old one. They each work full time, do a massive amount of volunteer work and have 15 pet rats to care for. I will be rat sitting for them in mid Sept. Afterward, I guess they decided it would only be fair to "sit" me

 

[Jamie]

Actually it is quite common for hospitals to issue prescriptions as you’re leaving that need to be filled on the way home. Sometimes they don’t know exactly what you will need until you’ve had your surgery.

I think you should figure out a way to accept this offer from your friends. It is kind of them, but sort of a good way to give back for taking care of 15 rats!!! Yikes! Fifteen of anything is a lot. You can find out from your doctor’s office or Medicaid about how you may be able to get your medications prior to surgery so you have a plan in place. If you have to drive back to your state, you may be able to have them take you after work or on Saturdays.

 

[meecies]

when your varus knee starts giving out on you and buckling- does wrapping it help any? like with an ace bandage?


TL;DR
went looking for varus knee info to see if what is happening to me is normal or perhaps part of my metabolic bone disorder


because NOW, my L knee is giving out on me- it's bucking if I put any weight on it when it's bent
but oddly mostly only while walking, but less so when go upstairs- or at least, so far, thank god, it's not buckled when going upstairs

these rapid changes in my hip joint and my knee-
this does not feel at all normal

I was able to verify with the endo that one of the symptoms of my "para" disease is MUSCLE WEAKNESS, so it's more than just aging that is making me weaker, it's more than just being deconditioned from winter blues and not getting out much


I still may be urinating out too much calcium, which is being taken out of my bones...
the re test for that is the first week of August

the pre op consult is the second week of August

regardless of the results of the 24 hr urine test, I still need to have my PTH, vit D and serum calcium all tested in the same blood draw to see if the relationship of those three values has FINALLY gone back to normal

If they have NOT, I get referred to an endo surgeon to get scans to see which of the 4 glands have hyperplasia (scans don't always show this, sadly)
I have no idea how long it takes to get in for this surgery- it will be difficult to get it approved as the condition is not well understood and many endos lag behind considerably in the newer evidence based treatments.

 

[mendogal]

An ace wrap only provides compression of soft tissue. It does not provide structural support.

The compression might offer a bit of increased, earlier sensation of giving way, so you might find yourself reacting to the buckling a tiny bit sooner, restabilizing yourself.

 

[meecies]

thanks!!
it feels like something rubbery is giving way- VERY different feeling from my R knee which never gave out on me.
It feels a little better wrapped up but maybe that's all in my head. lol so far it hasn't given out going up stairs.

I'm guessing its the ligament on the inside of the knee being stretched due to the outer side "crumbling" more or whatever it's doing LOL
I've seen the xrays and on the outer side the bones are smashed together, there's been no joint space at all for a few years now but it's never really bothered me til now

it did sometimes burn a bit on that side inside spot but grrr, this giving way thing is so not fun

as scared as I am of the surgery/surgeries, I'm going to be very disappointed if the surgeon has no openings soon. I am aiming for the last week of Sept or first week of Oct - I have two different possible support scenarios in the works for that time.
Go out of state for a week or less or have my brother come up for a week or less

 

[Layla]

I have two different possible support scenarios in the works for that time.
Go out of state for a week or less or have my brother come up for a week or less

There's no place like the familiarity and comfort of home for recovery...at least in my opinion.
It will also be easier than traveling to another state which I'd avoid with the easier option of beginning your healing journey at home.
You can recover alone. You wouldn't be the first, and if you have neighbors, or friends, that can check in on you, at least once daily, to help with anything you find difficult, you should be able to manage. Of course having a trusted loved one come and stay as a caregiver in support of your recovery will be wonderful!

as scared as I am of the surgery/surgeries

Be more afraid of the ongoing damage occurring with delaying. The possibility of a hip collapsing, or a lengthier recovery because you waited for an extended period of time. You're as young as you'll ever be, and likely as healthy as you'll ever be, so now is the time to get everything in order so you're able to proceed with surgery, heal and get back to living life in full. You can do this!

 

[meecies]

Those of you who used a recliner after TKR (or any surgery)

were you able to operate the manual ones?
often you need to kick down the foot rest with your legs, is one leg sufficient to put the foot rest down?

do these chairs normally tip over forward if you lean forward to get out of one, like if the foot rest is stuck?

 

[meecies]

Those of you who used a recliner after TKR (or any surgery)

were you able to operate the manual ones?
often you need to kick down the foot rest with your legs, is one leg sufficient to put the foot rest down?
if both knees need surgery, was your non-operated leg with OA able to push the foot rest down?



for anyone who did NOT use a recliner-

where did you spend your time when you were not in bed?
and how did you keep your leg elevated?

did you spend most of your time in bed and for how long?

did you have a sofa or upholstered chair or loveseat?

 

[meecies]

for anyone who did NOT use a recliner-

where did you spend your time when you were not in bed?
and how did you keep your leg elevated?

 

[meecies]

Be more afraid of the ongoing damage occurring with delaying. The possibility of a hip collapsing, or a lengthier recovery because you waited for an extended period of time. You're as young as you'll ever be, and likely as healthy as you'll ever be, so now is the time to get everything in order so you're able to proceed with surgery,

and what is your advice to those who are denied surgery for whatever reason?