If you're living without a hip like me, please reach out to me.....

Posted by Anonymous122054 @anonymous122054, Nov 28, 2017

Hello. I’m a 52 year old Female living in Seattle Wa. Last Sept I had a THR which was going well at first but at 3 weeks I dislocated it. E.R. popped it back in and 2 weeks later it dislocated again. I had to wait until the second week of Dec. for the revision. Because On Dec 5th I had breast cancer surgery. (when it rains, it pours) and Dec 12th I had the revision. Dec 19th I had a fever of 104 and went to the ER. They sent me to the hospital where I had the hip surgery and 12 hours later was told I had an infection and that the hip needed to come out. They put in a spacer and a new piece in my femur and told me when the infection was gone that they would put in a new THR. I was in the hospital the week of Christmas and had to do the IV infusions for 7weeks. I lived alone except for a 1 1/2 y.o. boxer dog who I had rescued between dislocations. I already have severe depression and anxiety along with PTSD so this whole ordeal was more than I could handle. My surgeon (I found out later) was a huge ass who didn’t give a crap about me (or anyone who wasn’t him) and lied to me about several things, including trying to convince me that I could live a normal life with the temporary hip. I knew that was impossible because the pain from the spacer was horrible and later found out that the pain was caused by the spacer shifting because he didn’t use enough cement to hold it in place. I wanted a new surgeon and had to fight with his office to get someone else to replace the hip. I met with the new surgeon (who is great) the day they were pulling out the PICC line and we talked about the following month of checking my blood and my hip fluid before proceeding with the new hip.The PICC line came out and 6 days later I was back at the ER septic and close to death because the staph infection wasn’t gone. The next time I saw my new surgeon he was leaning over me in the ER saying ” I’m sorry but I have to remove the whole thing and after that you’re done. He cut me open and I had a pus pocket the size of a football that exploded when he cut me. I spent another week in the hospital and had another 7 weeks of the PICC line and IV infusions. I spoke to the surgeon while still in the hospital and he said he could “attempt” a 2 stage surgery when the staph was gone. I opted out. I felt that 4 surgeries was way too much for me (5 if you count cancer). I had to move from where I was living in 30 days and am currently renting a room 50 miles from Seattle where I know no one. I still have the dog (she’s the only reason I made it this far). and with the rent in Seattle going through the roof, I can’t even afford a room for rent so I’m trying to find a live-in caregiver position that I could trade for rent. It’s been a really long year and I’m still trying to comprehend the fact that I’ll never be the same. I was living on a horse farm before the surgery, trading work for an apt. on the farm. I loved it more than I ever thought and was hoping to get this hip done and find another farm to live on. That will never happen now because I can’t risk being knocked over. I had a house cleaning business (no employees, just me) for 25 years and I can’t do that anymore either. I’m going crazy with boredom and don’t know what to do with myself. I’m still on painkillers twice daily and to keep the pain somewhat at bay can’t drive too much or stand, sit, walk or lay down for too long. I would love to hear from people who are also living without a hip to share thoughts or ideas about a common situation. No one I have spoken to, including surgeons, physical therapists and the like knows anyone living without a hip. My friend found this site for me. Please reach out to me. I think it would help me to know I’m not the only one. Thank you, Robin

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@cheryl99

Was thinking about you today. How are you doing with therapy? Hope you are making progress.

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I'm doing really good I'm able to get around better by my self leg are more stronger and I'm actually using crutches instead of the wheel chair I'm very happy with my progress thanks for asking

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This is an old post – how are you doing now Robin? I have been without a hip since December 2019. Female aged 58 – I'd be more than glad to share my experiences with you if you'd like – 13 hip surgeries; 3 separate implant infections – multiple dislocations – yup have seen it all.

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@jaqavious20

I'm doing really good I'm able to get around better by my self leg are more stronger and I'm actually using crutches instead of the wheel chair I'm very happy with my progress thanks for asking

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Wonderful…I’m so happy for you. Keep us updated on your progress.

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I broke my left hip in a freak accident two years ago. About three months later I also broke the femur in same leg. I have battled infections, including those with hallucinations and delusions, because it was so bad. (MRSA and Staph). I had to have the entire hardware removed. I have been undergoing wound vac therapy for almost a year and half. I am so tired of this pump!! I did go through physical therapy, and have been able to walk with the help of a walker. I can transfer and sorta get around a little bit. But I am still pretty much bed bound, and cant get up and do for myself so much. And yes that means someone has to be here 24/7 to take care of me. Including cleaning me up with sponge baths and having to wipe my butt. I hate this. I feel so useless and depressed. Thanks for your time.

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@trinab47

I broke my left hip in a freak accident two years ago. About three months later I also broke the femur in same leg. I have battled infections, including those with hallucinations and delusions, because it was so bad. (MRSA and Staph). I had to have the entire hardware removed. I have been undergoing wound vac therapy for almost a year and half. I am so tired of this pump!! I did go through physical therapy, and have been able to walk with the help of a walker. I can transfer and sorta get around a little bit. But I am still pretty much bed bound, and cant get up and do for myself so much. And yes that means someone has to be here 24/7 to take care of me. Including cleaning me up with sponge baths and having to wipe my butt. I hate this. I feel so useless and depressed. Thanks for your time.

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So sorry you are going through this. Compared to your lack of a hip joint, my knee infection is a breeze. I hope you can find someone in the same fix to "talk" to. My husband had a wound vac for only 2 months following knee replacement and indeed it was a drag. It must be so hard needing full-time care, but I sure hope you have found competent and happy caregivers.

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I’ve have an antibiotic spacer in my hip for over four years and that was after four failed hip surgeries. I also had staff infection that got septic.
Fortunately it’s very strong and I have an excellent doctor at Cleveland clinic in Weston put it in. So far it has not giving me any trouble.
Your case sounds so much worse than mine and I thought mine was horrible! I was between the hospital and rehab for almost 8 months and I also went broke from a loss of work etc. super depression set in and I just about lost my faith in Jesus. Finally and I mean finally somehow I took another leap of faith and I am totally out of depression and put all my cares on God. I will pray for you and I will pray that HE blesses you

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I broke my left hip 11 years ago falling off a bike. I had almost immediately after my first surgery. Seven replacement surgeries later I was told by my UofM orthopedic doctor that I need to have all the metal removed. I’m probably going to have that done within the next couple months. Fortunately, I don’t have an infection. I’m so worried about how my life is going to change after having the surgery.

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I had hip replacement surgery in November 2021. On Feb of 2022 I was diagnosed with a micro bacterium Abscessus in my hip. By the time it was found, the infection was from the bone to the outside of my leg behind the incision. They removed the hardware and put in a spacer. The area had to be debrided at the time also. So here I am months later, numerous different very strong antibiotics I have my second pocket of infection showing up.
I have had a 2nd opinion and he tells me I have a 1 percent chance of getting rid of this rare infection unless I have the spacer and other hardware removed from my hip.
Right now I'm in pain constantly and living a restricted life .
Please let me know what your healing process was like and are you pain free living without a hip .
Thanks 🙏

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@bernese53

I am not living without a hip but I read your message and just wanted to reach out to you. I suffer from chronic depression and pain from all kinds of spine conditions but I at least have both hips. Welcome to Mayo Clinic Connect.

Helen

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Thanks Helen. This has been a challenge for me! I'll keep you in my prayers.

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@koala78

This is an old post – how are you doing now Robin? I have been without a hip since December 2019. Female aged 58 – I'd be more than glad to share my experiences with you if you'd like – 13 hip surgeries; 3 separate implant infections – multiple dislocations – yup have seen it all.

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Would you please share what the healing process was like after you had all the hardware removed? How long did it take, mobility now.
My Drs want to remove mine also.
Thanks

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@brenda02

My pain level is moderate but once it starts, I have difficulty calming it down. I am able to walk without aid for very short distances like in the house. When I am out I always use my walker. I just started driving again which gives a person more confidence. My biggest concern is the leakage. This has been going on since 2018 and they haven't stopped it. If the wound heals over, it collects inside resulting in a hematoma. My 1st infection was Haemophillus influenzas, the 2nd was Staphyloccus epidermidis.
Has anyone else had an open wound draining? We still visit the hospital 3 x's a week and my husband does the rest of the wound dressings.
I am trying to rule out all possibilities like allergy testing (still need to be tested for metals), internist (waiting on bloodwork results), my body is full of osteo arthritis but my Rheumatologist feels that is not contributing anything to this situation, and I am waiting on the information from the hospital where I had both original hip surgeries done to advise the manufacturer and components of each.
Has anyone else leaked continuously, and how did they stop it?

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Yes I also had an open wound stubborn to close – it drained daily sometimes heavy and homecare nurses attended daily to change – this went on for well over a year – we were considering a wound vac when it finally started healing – happy to report all healed and you would never have known there was a wound there.

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