THR A new and improved Cindy?<

[Cindy99]

Hi Friends. I know I've been silent for over a week. I've been dealing with issues which have been dragging me down. I've been lurking but uncommunicative.

Twenty-four hours after I stopped Dilaudid (eight days ago), and on the occasion of my 61st birthday, I dropped into a deep depression. The triggers were probably several: perhaps withdrawing from opiates cold-turkey, my birthday, and a sense of "ok my hip is done, what do I do with my life now?" I have no good answers. My dog is also having serious mobility issues and will not be able to return to our living quarters upstairs when I move back there. He'll have to live in my studio. I'm very sad about that.

As several of you know from my past postings I suffer from depression, and am on disability because of it. The severity of it comes and goes, but is easily triggered. I am now trying to figure out what work I might be able to do since my hip pain is gone, but the work rules for SSDI under the Social Security Administration are so convoluted that that becomes a trigger. I'm trying to hang on but it is difficult. I've been dealing with SSA for over 20 years on these work issues, and they've worn me down. Now I understand someone in Congress is trying to mess with the system, and perhaps not for the better.

Meantime, I saw my surgeon last week for a post-surgical follow-up visit. He said everything looks perfect. He was very understanding about my depression, and said that I should pay attention to it because there is a correlation between joint replacement, depression and recovery outcome. [Hummm, why wasn't a psychiatrist on my hip surgery treatment team?]

With regard to my life-long depression I am what is known as "refractory," meaning difficult to treat. I've been at the depression treatment game for over 35 years to no avail. I began to engage with a psychiatric program at the same hospital last winter but the drug the doctor wanted to try didn't play well with opiates which I was on pre- hip surgery so I postponed that. I have written to him saying that I'm ready to try now that I'm off opiates, but I haven't heard back. I am seeing my PCP this week to get her involved...

In the meantime, and since I saw my surgeon, I've had a reoccurrence of mid-thigh pain. I did not mention it to the surgeon in our visit last week because it had been transient and wasn't present that day. When it came back on Thursday I called his nurse and she told me about "end-of-stem pain." At least now I know it's a real thing. My PT guy had been previously baffled by this pain and was interested to learn from me on Friday that it's an actual medical thing. Reluctantly I took 2mg Dilaudid this am because I'm tired of the pain.

So now I have a couple of problems. End-of-stem pain and depression. And while the food poisoning is over, my IBS has returned after several years of dormancy. Yippee.

@Josephine Does anyone have any ideas, thoughts, experiences? Should I go back to using a crutch? I've been walking without devices for two weeks now (mostly) and trying to walk as straight and upright as I can. Even though it hurts I try to not limp.


Thanks, and I hope that everyone is doing well in their recovery.

 

[Cindy99]

Oh, I forgot to say that I learned (from a patient in the waiting room) that my doctor is leaving the big hospital at which I had the surgery for a small one 20 miles further down the road. I asked him why he was leaving and he said that my present (big) hospital only pays lip service to the concept of being "patient-centered" (although they practically invented the term), and that it was a "machine" with the feeling of administrators being out in the hall saying "why did you spend twenty minutes with that patient instead of the allotted fifteen?"

I like him even more now that he said all of that, but moving to another more-distant hospital complicates my life. I will see him at that new place in August for another follow-up, and hopefully will only have to see him infrequently in the future (fingers crossed).

I have been very disgruntled with the big hospital but they have a lot of experts so I'm very entangled with them. It will be interesting to see what life is like at a smaller hospital.

I do wonder when I was going to be told that he was moving to another practice if I hadn't found out in the waiting room?

 

[wcgirl]

@Cindy99 Good to hear from you. I too have that thigh pain. I am still using the cane as I put more weight on my hip. 500mg of Tylenol before my standing, sitting and lying down exercises works for me. My out patient therapist is working to strengthen that thigh muscle with stretches and gentle exercises -- hard not to be discouraged that I'm not moving forward faster. I'll be getting back to my pool exercises tomorrow when she'll have a new set for the pool. As I read through other posts I see we are all expecting quicker recovery but, as Poppet posted, there is a real physical healing process that can not be hurried. Glad you are being proactive about what you need.

 

[Josephine]

I called his nurse and she told me about "end-of-stem pain." At least now I know it's a real thing. My PT guy had been previously baffled by this pain and was interested to learn from me on Friday that it's an actual medical thing.

Apparently only about 5% of patients with an uncemented hip develop mid-thigh-pain (also called “end-of-stem pain). The cause is unknown but is thought to be related to a mismatch between the rigidity of the implant versus the elasticity of the bone. It has been found that the larger the diameter of the implant installed (above 17mm) the more likely is “thigh pain” to develop. According to articles, the pain is usually mild and almost always resolves after 18 to 24 months.

 

[alexthecat]

I had end-of-stem pain. It was annoying, but not debilitating. It never kept me from doing anything that I wanted to do. It improved gradually over time. I don't remember when that pain went away completely. I think it took about two years.

Sent from my XT1060 using Tapatalk

 

[wcgirl]

@Cindy99 I received my OS's Operative Report when I had my follow up. It reads that I have the Stryker system with a cemented #7 stem. So I'm blaming my discomfort on rebuilding muscle strength. Stay strong!

 

[Cindy99]

I haven't seen the surgeons report but apparently I have a DePuy uncemented.

 

[Molly12]

@Cindy99 i understand your depression. I too have suffered from clinical depression in the past and understand how dark the world can feel. I would not be surprised if the narcotics have also exacerbated it. Only those of us who have unfortunately suffered true depression understand how it robs us of our soul. I was worried that I would slip back into depression with this hip replacement but so far so good. I am fortunate that I did not need any heavy duty pain meds and can get by on Tylenol.

Hoping things improve for you!

 

[craftdee]

Feeling your pain @Cindy99 ... "ain't no way around it... just gotta get through it"... and you will. I KNOW (you know I know) how you're feeling; all I can say is this too shall pass; I hope for your sake that it is sooner than later. The only big plus is that it hasn't hit you full force before you can get out and about, so that's the thing to do... get somewhere with people and distractions - MAKE yourself get somewhere that's not "just me", that's a start.

Of course you're wondering "what now?" You've had years of something to focus on (your failing hip) and now THAT focus is gone, finding another is a challenge, but doable, could even be pleasurable. When my Father In Law died my MIL (a nurse, ten years his junior) had MAJOR changes to make to her life; he was very ill, requiring 24 hour nursing for the last few years - she had only two weeks respite a year when he was in hospital and spent them sleeping!! She felt guilty that her first feeling when he died was one of relief, told me "now I can start doing something ELSE with my life" ... then a few weeks later was bereft that all those "things" she thought she was missing out on weren't presenting themselves; I mean she just didn't KNOW what they were... it had always been so nebulous "if I wasn't so exhausted/tied up/on call all the time I'd be able to do 'something' else"

It took her a little while (a few months) to find causes and interests but man, NOW, she (at 86) has a social life that would knock us into the park. One of the first things she did was sign up to help at the local primary school... this surprised me as she never seemed particularly interested in her own grandchildren! ...where she helped with reading a couple of times a week... last year she got a community award for her volunteering, as 20 years later she is still doing her "school".

In the early days she did some volunteer work in a charity shop, she was offered some paid employment there after a few weeks but declined as she had reached pension age and thought that someone else would benefit from the extra money (albeit only a small amount at the time, the girl - a single mother - who got the opportunity went on to get a full time job through that experience, a true success story if ever there was one)

Point is: options... you have some! Not having a dodgy hip has opened the range up and you're just not familiar with the territory, you'll get more comfortable with it all and I'm sure your life will be better - not just your hip!

BTW, Happy Birthday (my hubby was 61 in April, he always says '54 was a very good year, I always say self-praise is no recommendation )

Donna

 

[Sullivand]

@Cindy99
You are in my thoughts and prayers. There is a good thread on depression @Elle6 . I liked the advice and articles that suggest nutrition changes and help explain why maybe your depression has returned. I have had sadness too~ the humor and empathy on this forum can be a lifesaver. Take care of you.

 

[Elle6]

Thanks a lot!

 

[wcgirl]

Hello @Cindy99 just dropping by to say hello and let you know that I am thinking of you. I am without my cane and now that I'm putting 100% weight on my hip I have to remember to lie flat and rest occasionally. I don't know if you are wanting to do more now and running into a bit of energy drain like me. Now that the weather has improved, minus the threat for tornados, I want to get out and do more. I haven't had walks in my life for so long. I used to walk with a friend almost everyday about 5 miles. Had trouble sleeping last nite and then too busy today. And now I have to figure out what's for dinner. Hope things are easing up a bit for you.

 

[Cindy99]

@wcgirl

Hi Joan. I'm back. I'm slowly digging myself out of the funk I was in. Thanks for asking about my progress. I'm actually doing much, much better than I thought I would be at this point. I still carry a cane and crutch in my truck in case I get in trouble, but I haven't used them at home for several weeks. And yes, I run out of steam rather quickly. My brain is still somewhat fogged -- anesthesia?

I started outpatient PT two weeks ago. I love the PT person -- she is very serious and said that her job now is to make sure that I am doing things correctly (as opposed to previous PT people who primarily wanted me up and moving). I am viewing this as an opportunity to use her expertise to begin the process of whipping myself into shape (something I've been wanting to do for years) to see how fit I can get.

Because I've been so restricted for so long most of what she is having me do are stretches. My hamstring and calves are VERY tight. Every stretch burns. She did say that eventually that will ease. I don't suppose I'll ever be able to put my hands flat on the floor like I did when I was 15, but I'll take what I can get.

The good news is that I definitely have more functionality than before. I ditched my toilet risers (mostly to challenge myself) -- I still use grab bars to get up and down but I'm trying to use them less.

I can actually trim my big toe nail! Not the rest of them yet (without great contortions and no visualization), but that's progress. And I can pull the velcro on my shoes tight and I even think I could tie a shoe. Yay!

I do have one potential issue which I've mentioned before but now the PT person is concerned about. I still have persistent weight-bearing mid-thigh pain. She originally assumed it was muscle, but I think she now thinks it's end-of-stem pain. She said that if it doesn't abate by next week she will alert the surgeon. I previously contacted my surgeon's nurse and asked at what point anyone would get concerned, and she said give it a year. Quite contradicting points of view.

This means that I'm still two-stepping it up the stairs. She has me doing stair-step exercises but I yelp every time. It's that damn mid-thigh pain.

The PT person is also taking my lower back pain seriously. She's added in core stabilization exercises. I really need them and she's the first medical person to acknowledge that all of this is connected. She's a keeper.

I discovered this week that I've gained ten pounds since surgery. I shouldn't be surprised. First, I'm very sedentary. Second, I've been eating somewhat self-indulgent stuff more than I should (part of my depression). Third, I'm very sedentary.

I've been itching to walk and now have even more motivation. After PT last week I (inadvertently) took a long walk with someone and paid dearly for it the next couple of days (I kept wandering around saying to myself, sometimes out loud, "I wish I had a hot tub!") I asked the PT person if the hospital had a whirlpool or something like that I could use and she said no. Rats.

However, despite the pain of last week, and motivated by the scale and how my pants (don't) fit, I took a long-anticipated walk on my property today. The total is only about ¾ of a mile, but it's up and down a few hills. I did much better than I thought I would, but we'll see how much pain I'm in tomorrow. I felt very liberated.

The sad part of all of this is that while I've moved back to the upstairs of my house/studio, my dog is living downstairs. He just can't manage the steps and I can't help him. He's confused but slowly adjusting, probably better than I am. Also, I fear that I won't be able to take him on my walks -- we used to walk to the back of the property nearly every day. It's quite hilly and while I'll do what I can to give him PT (!), I don't know if he'll be up to it. Plus he gets this funny wheezy sound after walking a bit. Oh well. If nothing else I'm spending lots and lots of time with him.

I spent ten minutes today contemplating my hip. I mean contemplating my actual hip. I picked it up from Pathology last week and plunked it in hydrogen perioxide to clean it up a bit. I decided today was the day to take it out and expertly decide how much deterioration I actually had. The ten minutes yielded nothing except a bit of a creepy feeling that I was holding my femoral head in my (gloved) hand. I resorted to Google Images to look up photographs of normal hips and decided that mine at least showed it's 61 years and then some. Of course I have no idea what I'm doing.

I told the PT person I had picked up my hip and offered her photos -- she was interested and said that this was the first time a patient of hers had actually retrieved (never mind photographed) her own hip. A local nurse (the one who brought me that ill-fated chicken dinner) also said that she'd like to see my hip. Maybe I should charge money for viewings?

I had perversely thought that I might gold-leaf the thing or something equally weird but no one told me that Pathology was going to slice into it and ruin my plan. Now it sits in a Tucks jar bathed in hydrogen peroxide waiting for that next person to say "can I see it?"

Cindy

 

[webbie73]

Cindy, just sending you a hug. I hope the depressions gets under control.

You have your hip?????? Wow I never would have though to ask for mine or even if they would have given it to me. That is pretty cool. I would have loved to have seen mine.

 

[copsham]

@webbie73 My surgeon said he is not allowed to give out body parts!! it is like a love hate relationship with our hips isn't it? Want it gone but want to keep it!

 

[agileHippie]

My dad taught me to always ask for the parts back when you take your car in, so why not????

 

[Cindy99]

@agileHippie You said it exactly! Not sure what I'd have done if they handed me a perfectly good hip-in-a-jar.
No refund policy in this wonderful medical system we have.

I did have a perfectly good appendix taken out once...

 

[wcgirl]

@Cindy99 so good to hear from you! I am sad to hear about your dog but glad he is there for you and visa versa. It is so good to hear that you have found a good PT person. Yes, the stretching was tough the 1st few times but wow it sure did help with some of my stiffness. Isn't it funny. I just packed up all my aids this past week, one at a time. The cane is literally hanging around… just in case. ;-)
The weight is always a constant battle and now that I am out and about it's tough. But, oh, how good it is to get out and about! With @webbie73 we are reaching for those toes and getting those walking shoes on. It's the socks that give me trouble. Wait, I need to try again, maybe it'll be easier this time!
I do remember that you were going to ask for your hip. You amaze me! An inquisitive mind for sure. I did think about it… but I think it lasted 2 minutes. So gold plate like baby shoes? You are too funny!
I can see you doing a series of bone sculptures -- skeletons? Are you doing any art? Hugs!

 

[Cindy99]

@copsham @webbie73

I don't know exactly why I was so determined to have my hip, but it became a priority to remember to remind the doctor on the day of surgery.

I asked the surgeon if many people wanted to get their hips, and he said no, not many. He did say that most of them were Native Americans -- apparently there is some thing where they bury the body part now and when they die they join the body part. There was a reference to Native American burial practices and beliefs in the new PBS series First Peoples but I can't remember the details.

When I had my follow up appointment with the surgeon I asked him for my hip and he said "that's hazardous material, you have to go to Pathology to get it." When I finally picked it up it was in a bag marked "poison" and I had to sign a paper acknowledging that I was receiving hazardous waste. I figure it was my waste so it wouldn't be poison to me...and I have no plans to chew on it.

I have quite a collection of bones in my studio because every time I make beef stock or something with big or interesting bones I keep them and clean them in the event I ever want to work them into my sculptures. So far I haven't used a single one. I know that the day I get rid of them I'll think of something to use them for.

I wonder what my next boyfriend will think of the jar on the shelf labeled "L. Hip"?

I know what I'd think if I met a guy with one of those on his shelf.

 

[Cindy99]

@wcgirl Yes, I'm trying to do art. I got out lots of materials and have been starting to play around. I'm also thinking about making a transition into jewelry-making so I'm researching that and getting out materials. I have worked alot in copper and love working with metal. I'm trying to motivate myself. Some days are better than others.

I'm thrilled that I have three months of summer left -- my plan to have surgery in late April and recover by the end of June worked! Well, mostly. At least I can do 75% of things.