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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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They measure the amount of inflammation in your body by taking your blood weekly and checking those levels to determine if the staph is gone. Normal is between 0-20. Although it's not an exact science. When I was in the hospital it was 119. After 4 weeks I was down to 43 but it stayed at 43 for 2 more weeks. My infectious diseases Dr. said some people never get down to 20 or below. Since it stayed the same for 3 weeks he pulled the PICC line. Surprise,surprise! Staph wasn't gone and 6 days later I was rushed to the ER septic and close to death (what they told me). They pulled out the whole thing and then all the we can "attempt this and attempt that" started flying around. I said no way. I'm done. Too much too handle. I'm a little surprised by some stories on here though. People who have had numerous surgeries and numerous infections who have been told that they need to wait a year or more before they can get another hip. I was told by my new surgeon that if I was going to get a new hip it would have had to be within a few weeks after the infection was gone. He says even if I wanted to go ahead with a new one now they couldn't do it because I've been walking around with no joint for 7 months and during that time the femur has been pushing it's way up into the pelvis trying to find a place to settle. So putting in a new joint would involve trying to lengthen the leg. According to him that's not easy and sounds like something he can't do. Now, the MAYO clinic is a whole different ballgame so maybe that's easy for them. Either way, I'm not interested in any more surgeries. In fact I'm so scared of Staph that I don't think I'll ever have another surgery for anything. That's how exhausting and depressing it was to do 14 weeks of IV's. I'm glad you have family there for you, It probably makes it easier for you to deal with. I didn't have that and even though I had people shopping, driving and visiting me, It was all me every 8 hours and it was lonely and hard. It would be great if I could be in contact with your friend in Seattle. Have a good day. Robin
Thanks Justin. My problem is that I have been dealing with depression and anxiety for 40 years so it's not surprising that it got so much worse after this.I developed PTSD about 7 years after an incident that I'd rather not discuss. I've been debating writing to Dr. Phil for a long time. He seems to have connections with everyone. He works with these dual diagnostic centers that deal with the whole person physically. emotionally and psychologically. I'm thinking that he would be my best shot at getting my life together. But I have so many issues I wouldn't even know where to start if I wrote to him. I keep hoping one of my friends will write to him about me. I've brought it up but no one thinks I'm serious, I guess. I'm very serious! I started making jewelry again but I'm not very fond of or good at selling it. I don't want to do etsy, craigslist or e-bay because setting up a web page and paypal and all that involves, I have no idea or interest in doing all that. I've looked around at local farmers markets too but it's usually about $50 for a table and literally every other booth is selling jewelry. I need more than a hobby, I need a job. One where not having a hip won't be an issue. Because I'm not doing any more surgeries. None, ever never ever. That's what I'm trying to deal with. Sorry for being a downer but if I can't be honest there's no point in participating. Thanks, Robin
Still wanting to hear from anyone living without a hip joint, for life. I can't possibly be the only one? If you are or know someone who is please contact me. I really need some guidance and ideas from others with the same condition. Thanks, Robin
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1 ReactionHi my name is heather I had two hip relplacements on left hip after the second one I got an infection and had to have another opperation to clean out the wind and it was packed with antibiotics when I went home after that operation I fell and shattered my pelvis on left side they took out the hardware and placed a spacer and the plan was to remove the spacer and put hardware back but be for that the Dr took fluid from my hip and said there is bacteria there no infection but he said that he couldn't put hardware back and completely took out the spacer which has left me with no hip joint at all on left side. I was walking somewhat because after everything my left side was still my stronger side. But last week I got sick and was in bed for a few days. Saturday I tyres to get up and had lost a lot of strength in my left leg and my arms. It scares me because I can hardly get up now I have had 7 surgeries on right leg also so that is not strong eather
Hello Heather. I'm so sorry to hear about your hip and your fall and shattering your pelvis. I can't even imagine the pain you must be feeling. I hope you are working with physical therapy and a home health aide. I was falling a lot when I first got home from the THR removal. I'm pretty steady now but I do use a cane in the house and a walker or electric cart when I go to the market or lunch etc. I tripped getting into the shower last week, it's a single shower stall and I have a grip bar that I usually grab onto when stepping up and in. Well, I hit all my toes on my good leg stepping in and down I went winding up on all fours and feeling a sharp pain in my groin. Thank God I didn't pull a muscle but, the following week I was very sore. I still have to take pain meds daily (usually just once, sometimes twice). It sounds like you need to be working on building up the strength in your arms and legs and I can assure you that doing it in bed is very easy. Your therapist should be able to put a program together for you that you can work on several times a day. Do you have help at home? Husband?Roommate? If so, that's great. I'm not married, have no kids or roommates and that was really tough for me. Having to go through 4 surgeries with no daily help. I did have a therapist every other day and friends who would stop by and do laundry or clean a few times a week. I think mentally I was falling apart mostly because I couldn't believe all that was happening to me and how my life would be so different from then on.It's been almost a year now since the final removal of my hip and I feel i'm doing really well. Hang in there. If you'd like to talk, send me a private message and we can exchange phone numbers Robin
Hello, my name is Michael (60 yrs old) and I am in a similar situation. They have recently took out my hip joint and I am trying to learn hoe to walk without it. It seems difficult as hell. my story is a little similar. came into the VA hospital in Houston Tx. with osteoarthritis and advanced d-generated hips.
3 surgeries 4 dislocated, then caught a Staph infection so they did a fourth surgery except they left the stem in and put another ball and cup liner in. and that one gave me big problems so I complained and the doctor from the antibiotics dept. were supportive because the antibiotics couldn't rid the infection, so they went in again and took it all (equipment) out. Put the spacer etc. So they tell me. but an intern or Doctor told me they took my some of my muscle and balled it up and stuck it in the joint cup. The top of my left thigh fattens when I do PT. (presently still in the hospital) and the fatness only goes down halfway. My right hip needs replacing too but I doubt that will happen soon. I have been told conflicting stories and still trying to find out more information; for Non Service connected disability, will I get another shot at another hip replacement, when could it be and what about my right hip and knee. A total of five surgeries since July 7, 2017.. Anyway, this is my first time researching this matter and I used to be work living on farm/ranches England horse ridding and showing. that was 25+ yrs. ago so I understand your feelings to get back into that environment. Between you and me, your the more experienced in this matter.
I'm presently trying to get a rating on this disability plus my lower back and knees. in the first 3 surgeries they made my left leg 2" taller, in the last surgery ( Dec. 1, 2017 and 5th surgery since July 7, 2017)after taking the hip joint equipment out and cutting some of my femur bone off. I'm still not strong enough to walk far without my arms giving out., so I'm still using a wheel chair. I will be doing searches on the web to hear other peoples stories and find out how life is, say a year latter or more. I will share what I find with you if you like My prayers are with you. Stay strong and don't lose hope..
Hello, it's Robin (froggyone) I just re-read your message and I'm trying to figure out what to say. First off, I hope you're out of the hospital and are on the mend. I can't give you medical advice on whether you should have more surgeries. I'm the wrong person to ask about that because I'm very angry about the way things happened to me over the course of 4 surgeries and 2 staph infections. It's crazy to me to read about people that have had 6,7 or 8 surgeries and 6 or 8 staph infections because I had 2 of them and I don't want to ever have another procedure done, no matter what it's for, because I'm far too scared. I can't go through that again ever. I'm also extremely bitter and sad because I'll never be able to work on a horse farm again. I was really in my element there and I loved it so much. I also had a housecleaning/organizing/packing,moving business for 25 year and I'm used to being strong and mobile. I loved all that work too. I can't even fathom what I'm going to do for the rest of my life. I'm bored stiff. I am very determined to get another job, since I love animals so much it will probably be with animals. I never had to use a wheel chair. In fact, within 2 days of the final hip removal I was up and chomping at the bit to get moving. I even practiced on the stairs! My surgeon was blown away. Do you think you'll have to stay in a wheelchair? I hope eventually you are able to use a walker, cane or even crutches. I have some good advice for you for when you start using a walker. Get back to me when you have a chance and let me know how you're doing and when you get to go home. I'll give you any pointers you may need. Or just listen to your worries or concerns. Take care, Robin
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1 ReactionYou’ve found another one hip wonder. No hip since dec 2018. 13 hip surgeries- 3 separate bouts of different infections plus dislocations. How r you doing now? Oh i’m 55.
Hi, I’ve had multiple surgeries on my hip. 3 debridements since August. I have 2 infections in hip. A wound draining but almost closed. I’ve been told Hip hardware has to come out. Not able to put new hip in. I had to go see a plastics surgeon to see even if hip could be taken out due to a “flap” needing to be made for closure. That part of the Surgery is very brutal! 18 inches off my back to build flap. I am waiting to see if Mayo hospital could possibly help. Im going to start palliative care. This pain is unbearable! All my life consists of us Doctors!!! No quality of life! I’ve had 26 operations on my body. Mainly due to complications from car accident at age of 12. I’m now 49. Every time I have surgery, I develop a 2nd condition and on and on it goes! My body looks like a road map! I’ve been told no possibility of a new hip put in due to not enough bone to work with. I’ve been told that I would barely be able to walk. I have other damage to back, knees... I’m done with surgeries. No cement spacer. Now I have to watch for Sepsis.
Robin, take heart, there are others in same or similar situations. First of all, are you on Disability. If not you should be. No one could need it more. Please check asap cuz you would. I have had approximately 4 hip surgeries starting from hip replacement that became infected and had to be removed followed by spacers, 7 week iv meds. At this point they don't recommend another revision because surgron thinks there may be dormant infection lurking inside which eould start the whole nightmare again. At this point I am having rehab ordered by the doctor to strengthen my muscles at empty hip area. I have read on this newsfeed anout 2 people that were able to get around with walker and one lady possibly be able to use a cane. People have said to me "I don't know how you do it" and I either say or think that you do it because there are no otjer options except laying down and giving up. I am a survivor and will NOT GIVE UP.. I walk with a walker and sometimes use a scooter although PT prefers walker to gain strength.
I too have a dog, also a rescue and cannot imagine being without her. She is my deae friend. My husband and I are retired and our 70's. Please stay tough and use any socias l services that can be available to you. God Bless You and I will pray for you too. Please be in touch.