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If you're living without a hip like me, please reach out to me.....
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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I am on here for my mom she is 72 and had hip replacement surgeries on both hips about 15 yrs ago, had breast cancer 5 yrs ago and 2 yrs ago she had MRSA in her leg and had to have several surgeries to get the infection out and also they removed her one hip replacement. She lost a lot of blood and and will not take blood no matter what I or anyone told her, then she got infections when she went to a nursing home to heal had a quite a few mishaps from the care there and then covid hit so everything was shut down and her surgery was not considered essential so it was postponed. Now she has been 2 yrs in a hospital bed this month and they said she will need at least two surgeries but a couple of doctors don't think she will be handle them. My family is no help they all aren't very motivated getting her help to get better and I live far away if someone knows of any one or anywhere to get her help or go over options or even talk to her for support, I would greatly appreciate it. Thank you.
Dee
I'm a 44 yrs old male here in Puerto Rico, I just had my third hip surgery a week ago. The first one they just cleaned it out, second one they took out the ball and rotator cuff, now the third one they took out the metal that goes inside the femur.....I also had a pus pocket coming out of my scar few mo the after my second surgery...I'm thinking they should of took the whole thing out in the first place...your story is almost s mirror image of my...but my is in the left hip, I'm still active in what I can do, but you are right we can't be in the same position for too long, can't sit enough, can't stand enough, can't lay down enough......it sucks but I'll get through this...
Hope you are feeling better now, would love to hear an update if possible thanks, God bless.
Hi Robin...My name is Bev Rials..right now I am writing you from the hospital where I have been for almost 3 months..I have had 4 surgeries and a yeast infection that they can not clear up...unlike you I was born with a congenital dislocation had surgery in 1946...the are sending me to UC in SF where they will problably take out the hip...I also live by myself with my little dog Susie...I do not want to go threw another hip surgery at my age.
would love to hear from you!!
Hello my name is Marilyn I also dealing with my hip I have had 2 hip surgery 2 elbow surgery and a wrist surgery my last surgery was done October 2021 take my hip out due to staph infection and now the doctor are saying they are not going to put my hip back because of a bone that was broke in my hip I just can't accept that I'm very independent and I'm tired of being in this situation
Marilyn I feel your pain. I have been without a hip since 2016. I have learned to deal with it and do live a independent life. I have the shoe for the leg without a hip built up about 1 3/4 inches and use a walker most of the time. I can walk with a cane short distances such as going in a restaurant and doctors office if it isn’t far. I use a rolling walker and have a basket on the front so I can get around pretty good in malls and grocery stores. Just have to keep my upper body strong so I can put the walker in and out of the car. The hardest thing is cleaning the house especially vacuuming and scrubbing floors, but I manage. Don’t get me wrong, the first year was the toughest because I had bacteria all over my body because of a cat bite and had dama age to my bones from radiation due to cancer in 2002. The bacteria.finished the job on some of those bones. I was in a wheel chair for about 4 months but worked really hard to get to a standard walker. Once there I was able to recover pretty quickly. I had a great therapist who knew I wanted to walk the best I could and be independent. She was one that you had to be careful what you wished for because she worked you hard to get there. When I was stronger I joined to gym so I could use a treadmill to help build my legs since I had to hold my self up by my arms, the treadmill really helped. I also did other leg and upper body exercises there. All I can say is don’t give up, you will be surprised just how well you can do without a help if that is what you want. I wish you the best and if you have any questions that I can help with, let me know.
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1 ReactionHi Marilyn - my husband has been without a hip since April following a fungal infection and then a staph infection in his femur. He’s still in some pain but is managing to get around using two crutches. The hope was to check for infection and if all clear they would try and put it back in but he has since developed a blood clot in his lung which has postponed it happening. They have told him that the likelihood of recurrence is high due to the type of infection. I have read many posts on this site and some have said that the longer the hip is out people learn to adjust. Look back at some posts and hopefully this will give you more hope that things will get easier in time. I wish you good luck for the future.
Thank you I just stressed about not getting my hip put back in see this is the second time I have got the staph infection in my left hip I was bed bond for eleven month before they put my hip and elbow back in and a year later the same thing on my right side my doctor is not putting my hip back in and that the part I having a hard time accepting it this month (December) I can start putting weight on it but I'm scared how do your husband do it is there alot of pain help me source this out I'm thinking if the doctor don't put my hip back in I will never walk again
Hi Marilyn. I’m so sorry that you’ve had such a bad time. My husbands surgeon is hopeful that in January they may be able to put the hip back in, but they’ve also told him that the infection will probably come back as it’s a rare yeast and fungal infection he has…. Time will tell. He’s now able to put some weight on his other leg. If this was going to be permanent then he would probably need a shoe made due to the shortness of the leg where he has no hip. He would also need to attend some physiotherapy to build up the strength in his leg. Your doctor should explain this to you. My understanding is that a walking aid would always be required, but you should be able to walk again through time. I’m noticing changes in what my husband can now do independently more each day. My suggestion would be to speak to your surgeon and ask for some PT sessions and enquire if a shoe is required. I wish you good luck or the future and have faith that things will get better through time. If you have any questions please get in contact. Ann Marie.
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2 ReactionsMarilyn and Cheryl I completely understand what the two of you are going through I have been living without my left hip for three years now I am 41 years old and have three daughters to take care of! I have two girls in high school and one in first grade. It is hard for me to accept that they have to deal with this as well. I just hate that so much has been taken from them and put on them because of what has happened to me. I ended up falling one night while waiting to get a knee replacement and broke my femur bone in half. I went to the emergency room where they did a hip replacement and it was fine for about 2 or 3 weeks then it dislocated and I got another one, from the time I got it I had problems with it, it stayed infected and ended up getting staff. I had to be in a recovery hospital (nursing home) for 6-8 weeks then sent home on Iv antibiotics with home health. I was in the hospital for Christmas and Thanksgiving of that year. The doctor ended up taking the hip completely out and told me that I was not a good candidate for another one so I've been living like this since then. Now my other hip has started bothering me because I put so much on it.I need one of those shoes to help with the difference in size of my legs where would I even find one of those?
It's nice to know I'm not alone in this, even though I definitely feel like it at times. You all understand in a way noone else could!! It would be great to hear back from someone! Sorry this message ended up being so long just wanted to share my story with people that actually get it! LOL! Anyway thanks again for listening hope this holiday season brings you all good health and happiness!!
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