TKR Rockgirl4's Recovery---already full of surprises.

[markbet]

@Rockgirl4 I fully understand about your frustration on your bend being stubborn, I have the same problem. I have a recumbent exercise bike I have been riding fairly easy, until last Sunday. I had my three year old grandson over, and was under the delusion I could entertain him and keep up with him outside. Wow was I wrong. Come Monday, my knee would barely bend, I made the huge mistake of trying to ride the bike, bad idea, and my knee definitely let me know about it. I have no clue as to when I can ride the exercise bike again, because my knee is still pouting and grumbles even if I just look at the bike. So I have been icing and resting my knee, I even canceled PT yesterday.

 

[Jockette]

So yeah-- I AM worried I'm worse off with bending than last Autumn, but time will tell right??!!

It will come back, mine did.

I had a really bad set back at 4 months, due to a weekend away visiting friends and I struggled the whole time with their low toilet and no “handrails” within reach. My ROM was pitiful by the time I got home. It took a month to even begin to recover.

At that point, at 5 months, my son got married. The wedding was 90 minutes from where I live and involved activities for 3 days in which I had limited opportunity to ice and elevate, and too much standing. I was back to square one.

My ROM was poor the rest of that first year with a really tight leg. But, after the one year mark it improved, and continued to improve even after the second year mark. And now at the 3 year mark it’s even better, even though I still have other issues.

 

[Rockgirl4]

Thanks @Jockette. Once again, you give me hope. I did have 2 better days following lots of icing and elevating, but then I ruined it with a trip to the outlet mall Saturday. It's SO hard to live life and try to be good to our bodies. This new house is MUCH more spread out also, so I'm working on my new "norm" and trying to avoid walking laps every hour.

 

[Rockgirl4]

@luvcats It's interesting you asked about my next Dr's appointment!!!!! I may finally have some answers. It sounds like my Psoriatic Arthritis is part of the problem. I saw my Rheumatologist on Friday. She noticed obvious swelling in my left hand/wrist/fingers, and especially my ring finger. I have struggled with getting my wedding rings off some days, but I kept blaming too much salt, gaining a few pounds, etc. She said this was NOT that kind of swelling. It's obvious inflammation in the whole hand/wrist, etc. In hindsight, I've had a weird sensation of swelling/stiffness in that wrist/hand since Christmas, so it makes sense. She's increasing my Methotrexate medication until summer, which is when I always go back to feeling wonderful.

Then I asked if there was a way to know if my knees were experiencing the same "flare-up" as my hand/wrist. She laughed and said it's almost a guarantee. Her opinion is inflammation usually increases systemically and not JUST in one area---most often in 2-4 areas, though some are easy to detect, whereas others are more difficult, especially if osteoarthritis is already in a problem in certain joints----like the KNEES!!!!! Yes---My knees are surely more swollen from the last 6 weeks of craziness surrounding the move, but the PsA is likely making it worse than if I DIDN'T have PsA. Changes in swelling are extremely easy to notice in the hands/wrist/fingers though, and she can easily see something has changed in the last 3 months. She does a thorough exam each time and documents her observations, plus I even have my own corroboration with my rings and the weird discomfort in that area.

In a nutshell, I'm supposed to lower my stress load, as that's not helping ANYTHING. All of this stress, craziness, bad eating (too much fast food!!), plus a lack of my usual exercise is "letting" the PsA get a hold again. To get it back under control EVERYWHERE in my body, I'm to get off my feet, ice/elevate more, sleep more (too many 5-6 hr nights in the last 6 wks), and improve my diet (now that we're not dealing with packed dishes and running between 2 houses and meetings). All in all, I need to stop letting both the physical and mental stress take over my life. She thinks that's why the PsA has really ramped up the last 15 months since my mom died. The stress is literally making me sick with stress, plus the stress is helping me make bad decisions NOT good for my body---and my knees are along for the ride unfortunately. If I want more improvement in ALL my joints, I need to get a grip and take charge!!!

 

[luvcats]

Ouch. It is so hard to make good decisions during a move. Everything is packed and take out is so much easier and faster when you're just too dang tired.

All this self-care stuff is just exhausting, isn't it?

I am glad that you are in the care of a great rheumatologist who pays attention and you at least have answers, even if the fix is not simple. Hopefully now that the bulk of the move is past you'll be able to find a better balance and get more rest.

I highly recommend knitting. lol

 

[Rockgirl4]

1 YEAR UPDATE ---From Someone Who Has NEVER had a "Normal" knee recovery!!

I had my 1 year post-op TKR appointment by phone conference last Wednesday. For any of you who remember me from last summer, I had the "acute inflammatory response" post-op and had the 15-16 large fracture blisters to show for it. I was determined to stay away from aggressive PT after ending up with "PT PTSD" following 4 nightmare knee procedures in 2015-16.

As for the phone conference, I'll try and summarize first.....
1) The state of my knee---80 to 85% improvement overall. It's a success, even if not perfect. It currently bends to 90-95 degrees when "cold"....meaning on a normal day when just doing normal "life" stuff. I had massive scarring in this knee from 2015-16, and the TKR got rid of most of the pain and instability, but it did NOT improve flexibility. I still have issues descending stairs. Going up is fine, but my leg wants to kick out a bit unless I focus on my gait.

2) I can walk further and longer than I have in 7-8 years, and I can stand in one place for long periods of time....even an hour or more if I need to, and then walk some more too.This is a huge win for me. I can handle not walking down stairs normally. I I just go slower, one at a time, and OCCASIONALLY go down normally if I've worked out recently and warmed the knee up. That's the only way it bends past 100 degrees (maybe up to 105-110). But standing and walking means I got my life back. I can vacation, I can talk to friends in a store when I run into them, I can go for walks with friends and family, I can finally go shopping and not be in a hurry to get home---Yep!! That's a WIN!!!

3) My surgeon agrees I'm in a category all my own. After all his years of revisions and other oddities, he agrees my knees are weird, their recoveries are always weird (major OR minor surgery!!), but I should expect to see decreases in warmth, swelling, and discomfort for at least another year. He sees some of us "weird ones" who continue to improve into the 3rd year, and we shouldn't compare ourselves to others. Hmmmm......where have we heard THAT before??!!Thank goodness for Bonesmart!

4) He suggested I push the knee to see what it will do. I focused so much on controlling swelling/inflammation the last year. Now he thinks I might be surprised what the knee will do when I stop worrying about it constantly. I'm glad he said this. I've been trying to warm the knee up differently before riding my stationary bike, as biking just does NOT feel good. I need <this much> more bend to do it comfortably. So instead, the last few days I tried doing my elliptical for 3-4 minutes first, and it helped drastically. I could then ride my stationary bike more comfortably. It's not a 100% improvement, but I've noticed the knee has been a little looser the last few days, even when I did a lot of walking/standing (the usual things that reduce ROM a bit). He thinks a few weeks/months of this might get me over that hump on the stationary bike where I can ride for cardio again, instead of just loosening the knee.

5) Knock on wood, but the other knee has held up well. We don't see a need to replace it any time soon unless a catastrophic situation comes up like in the past. BUT----things in my knee change overnight sometimes, so I have a plan in place in case something happens. One wrong step can turn the tide unfortunately.

6) As for that plan......he and his main partner are both retiring in June. He gave me 2 names in his medical group that he thinks I would work well with, knowing my extensive surgical history, the arthrofibrosis situation, and the Psoriatic Arthritis. Even if those 2 leave or retire eventually, all of the 7-8 partners in this practice DO NOT agree with aggressive PT. They are part of a current and research-driven teaching hospital/University and don't do things "just because" like many other surgeons. This makes me feel good, as it's the office's philosophy instead of 1 person's philosophy.

LASTLY---Now for the emotional junk!!
This surgery and recovery was the hardest and most painful time of my entire life.....something I never thought would happen after the "knee nightmares"of 2015-16 and having my son in '06. I have a high pain tolerance, so I didn't think anything could top those. Unfortunately, the TKR easily has the top spot!!! Even then, I am glad I did it!!!! I would do it allllllllll over again too. I have wonderful stability in that leg, and the strength is great. Balance could be better, so I'm adding that in and not worrying as much about inflammation/swelling. Mostly, I have to be nice to the OTHER knee, as I'd like another 1-2 yrs before replacing it. This should keep me from overdoing things.

If I could have ANYTHING though, it would be 10-15 degrees more bend.....but even if I never get more than what I currently have, IT'S OKAY!!! This is life now, and it's SOOOOOOOOOOOO much better than before. BUT----I have hope. I do believe I'll get more bend, and I think I'l have less irritation around the kneecap. I just think I need more time, as my knees don't like to be rushed, pushed, or battered into submission.

This novel is now over!!! I still hope someone gets something out of all the craziness that we, in our family, call "Lisa's bizarre knees!!"

---Lisa

 

[lovetocookandsew]

What a great report! I'm so glad you're doing so well. None of us go back to a 100% exact replica of our original knees after a TKR, but some get closer to that place than others. You still have time, and room, for improvement, and will likely see some over the next year or two. But, I love your attitude and agree with your doctor. Good luck and please keep us updated on your continued progress.

 

[Jockette]

Great report! I really do think you will continue to see improvement. We have to look at, and respect, our knee as the individual it is.

My partial was the first surgery on my knee, but it didn’t like it at all. I had a very difficult whole first year.


But, I’ve had a lot of improvement my second and third years!

My balance is still off, but much better in this third year, than in the first 2. Stairs are still very uncomfortable, but if the steps are not too high, and if there is a handrail, sometimes I can do the foot over foot.

I cannot put any weight on my knee when it’s bent, so that’s very limiting.

 

[sistersinhim]

Lisa, you have the right spirit! I think all of us would like to have a perfect new knee, but know that's just not going to happen. To have it better than what it was before our replacement to me is a win. Mine isn't perfect either, but it's better and I can do things that I was unable to do for over 20 years! That's a blessing!

 

[Rockgirl4]

@Jockette I completely agree with you and am glad you are still seeing improvement. Yes-my right knee has had an attitude since 1998, and she likes to play games and be mysterious. Lefty isn't nearly as troublesome and tries to behave somewhat normally.

@sistersinhim I am so glad you've also had enough improvement to call it a "win," and I agree we need to remember a TKR is never going to be a complete substitute for the knee we were born with.

 

[Rockgirl4]

@lovetocookandsew Thank you, and I will definitely keep doing updates.

 

[Rockgirl4]

ANOTHER MILESTONE
It's now been 12 months and 2 weeks since my TKR. I was rubbing lotion on my TKR knee the other day when I had a shocking discovery---the knee was no longer super hot---it was down to a "warm" level, for lack of a better description. Keep in mind this knee has been something between "hot" and "warm" since the surgery. I wasn't surprised, as my knees stay hot for a long time post-op, but I was very surprised that the heat seemed to decrease drastically almost overnight. I'm not complaining!!!

I've also noticed an amazing increase in strength the last couple of weeks. I started walking a lot in mid March, and FINALLY seem to be getting my fitness back. It has taken forever!

I'm mainly posting this so people can see that changes/improvements DO keep happening long past the 3-6 month mark and even past the 1-yr mark. My surgeon says he sees people improve in the second and 3rd year post-op more often than not. It's not the norm, but it's also not unusual.

ANOTHER FRUSTRATION
I know many won't see this, but I needed somewhere to put it. I had one of those jealous moments last night when I ran into a neighbor who had her first TKR 2 weeks ago. Her scar looks beautiful and like it's 10-12 weeks old instead of 2 weeks. Her leg has almost no swelling. She's wanting to drive because she's off all pain meds, but her husband wants her to wait a week longer. I was trying, I really was---I'm happy for her, but I was SOOOOOOO jealous. I have done everything right in the last 20 yrs with recoveries. I've followed the good advice, and when it failed me, I sought advice from the "extra special" knee specialists!! I just always-always-ALWAYS have a hard time with healing, and it makes me hate my body. I feel like it betrays me at every turn, no matter how kind I am to it. I know this is just ME, and there's nothing I can do about it....but I also have trouble talking to these people when they wonder why their recovery was so easy and mine wasn't--even when I can't bend as much as they can after a whole year. They always ask what my surgeon did wrong (NOTHING!!!), and did I go to PT (Yes, but not the mean kind, as that did more harm than good the previous time). There's always this subtle hint that I was a wimp or didn't do what I was supposed to. My husband likes to remind me to stop caring what others think, but I struggle with that. Then the anger sets in and off we go repeating the negativity cycle in my head. Ok--rant over---just needed to get that off my chest. It DOES make me think twice about what I say to others dealing with bumps in the road though. I don't want to offend them the way I get offended by others "solutions."

 

[Jockette]

I was trying, I really was---I'm happy for her, but I was SOOOOOOO jealous

My husband likes to remind me to top caring what others think, but I struggle with that. Then the anger sets in and off we go repeating the negativity cycle in my head.

As someone else who has had a really difficult time, I totally understand! And I “only had a partial.“ 3 years later I still wish I’d never had it done, even though I continue to see some improvements. It is what it is and I’ve come to accept it, mostly.

 

[Rockgirl4]

@Jockette I thought I had accepted that this is just my body and the way it heals.....but yesterday pretty much proved me wrong! I definitely have some work to do in that department.

 

[lovetocookandsew]

I doubt if anyone understands the frustration of a nutty body that won't heal, heals slowly or heals in crazy ways, more than me. Being jealous of someone else will only make one crazy; so I try to remember that every body is different and everyone's struggles are different. My overall life is pretty struggle free; I have really good health, and basically an easy life in most ways. Yes, I have a really bratty knee, but when I start to get really down about it, I think of all my blessings and that helps to pick me up. Right now I'm having a really hard time with my knee, and will soon have to have yet another dreaded surgery to try to fix the latest problem, so I am trying to keep a positive outlook through it all, even when it's hard to do so.

There are people in my life who've flown through their recoveries and never looked back, but I'm happy for them not to have to struggle like me, instead of allowing myself to allow jealousy into my attitude. I know it's difficult, but counting our blessings instead of wallowing in our struggles, really does help our attitudes.

As for people who try to make you feel bad for things you have no control over, you can choose to either let their ignorant comments get you down, or you can stop them in their tracks and refuse to listen to the comments. You have done nothing wrong at any point in your recovery, and for anyone to try to make you feel like it's your fault only shows their ignorance and unkindness. Hang out with positive, supportive people who will lift you up, not those who feel the need to berate you for not recovering at the same rate as they did, or have expectations of how you "should" recover.

 

[Rockgirl4]

@lovetocookandsew Thank you for the kind words and the reminders of gratitude and positivity. I tend to do so well for awhile, then something like this has me back into the land of negativity. We've been dealing with some negative family stuff on my husband's side, and I'm pretty sure that has me in a bad mindset regarding other people and their opinions. We try so hard to take the high road , but when it rains, it pours-----but you're right that the sun always comes out, and there are many people in my life who take me as I am and are full of love and support. Thanks for the reminder.

 

[JennyLynne]

I totally get it! My dad had both knees and hips replaced, like me. He was back to normal in a few weeks. He had a revision last year and same result. So whenever he asks about my progress, he says “that doesn’t sound right”. I take a deep breath, and politely get off the phone.

I also find myself watching others at PT to assess their progress and judge myself against them.

These recoveries consume our lives- sometimes for a brief period and sometimes for a long long time. It’s nearly impossible to just roll with it all of the time. I’m firmly in the “wallow” phase this week. I appreciate this site even more at the moment- somewhere to celebrate and commiserate, depending on what you need!

 

[Wolvesfan]

@Rockgirl4 I know what you mean! My brother in law came over a few weeks ago and said “I thought you’d be farther along by now. I know others who have made much faster progress.” I went inside and burst into tears (yes, the emotional side of recovery has overwhelmed me at times). But maybe I’m getting a little stronger, because when my sister in law recently commented that she thought I’d be “dancing pain free by now”...at 10 weeks post op...I said “Nope, every knee recovers at a different pace and mine just happens to be pokey.” But it IS hard not to compare, even when your rational side understands the futility. A blogger I follow had a TKR a month after my PKR, and wrote a post about how at six weeks post op, you can do almost everything except wear heels. Bam! I fell right back into comparison mode. She was walking two miles twice a day, cooking gourmet meals, and gardening, and I had just summoned up enough courage to drive. But I think it’s human nature to compare, and I’m glad we have this site to keep it real!

 

[JennyLynne]

Hey me again! Lol
I was at PT today and there was a woman who was doing some exercises while laying on her stomach. And when she was done, she got up by first getting to a kneeling position.

She had a TKR only 5 weeks ago!!! And she’s kneeling like no big deal!!!!

anyway... everyone is different, haha

 

[Steelergal]

Hi @Rockgirl4, great to hear your update. And I'll echo the others who have chimed in about comparing. I'm coming up on 1 year in July with my left knee and it's still being SUCH A BRAT. My ROM still sucks, the nerves growing back are causing pain and sensitivity, I can't walk down stairs foot over foot, the scar doesn't look as nice as I'd like, etc. I'm tired of falling into that 1%-2% of people who have to have the MUA or have nerve issues, etc. My parents have a friend who had a PKR 3 months after my TKR and he was bending his knee to 120 degrees within 3 weeks. He's 70 and I'm MUCH younger! So I get it, I compare with everyone and am frustrated that my knee isn't cooperating. I even compare this recovery with myself, because my two hip replacements were a piece of cake compared to this darn knee. But, like others, I'm try to find the silver lining. I'm now walking 3-5 miles a day and the knee doesn't hurt or swell. Even if I can't bend it very far, I can feel it getting stronger. So I'll focus on that for now and hope the ROM continues to improve!