After transplant - be very careful of yo... - Kidney Transplant

Kidney Transplant

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After transplant - be very careful of your knees

mtwskk profile image
27 Replies

I’m a kidney transplant patient who is extremely blessed and want to pass on info I just learned about that others don’t really talk about. I’ve had my kidney from a deceased person for 6 years. The other day after going on vacation, I came home because of leg pain in both legs primarily my knees. Went to the family doctor who said it was arithriis and sent me to an Ortho doctor. He provided some steroids and surprised me in saying I needed a knee replacement. I said this is crazy I’m to young and figured I’d get a second opinion. Second doctor confirmed. I called my coordinator and figured she’d like to talk to the doctor. Again to my surprise she said it was very common for Kidney transplant patients to get knee replacements. It’s the meds we are on. I was thankful and somewhat surprised. I wish someone had told me to watch and protect my knees. If you get any pain don’t wait as your cartledge could be wearing out. Take care it and don’t wait as if you do it’s bone on bone and they can’t help you except do a knee replacement. So just be aware and watch your joints. Meds are doing more to our bodies than we realize. I’m not being negative as all transplants are blessings and we must take care of ourselves. I just wish the doctors would inform us what to watch out for in the long run. It’s more than just watching your kidney numbers. God bless.

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mtwskk
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27 Replies
Donaldson0007 profile image
Donaldson0007

Wow! Thank you for this info! I am almost 36 mos post and began having knee issues but had assumed it was (age) 48 year old knees are not what they used to be (?) Ha ha

So thank you again! I can talk to my Dr about the knee pain!

May I ask which meds you are on, or which they attribute to the knee deterioration? Thanks!

mtwskk profile image
mtwskk in reply to Donaldson0007

Its the Predisone that's doing it according to my coord. Says I can't get off it either. And No I can't use any spices (Ginger and Turamic) to combat the pain per my coordinator, as it would increase my immume system. So it's info to others just so they know and don't fall on their knees. Which I've done a few times.

in reply to mtwskk

Hola mtwskk, Gracias por la informaciòn!!!! tendre cuidado con mis rodillas!!!, soy transplantada renal hace 37 años y, hace 6 meses atras comencè con dolor en los dedos de mi pie izquierdo y en una mano...tengo comienzo de artritis reumatoide. Es lamentable que las drogas para mantener nuestro riñon transpl. en buenas condiciones, nos deterioran otras partes de nuestro organismo!!... igual hay que seguir, de por vida, tomandolas!

Estoy con medicina alternativa, cuidando mis dedos del pie izquierdo y mano,masajeo 2 veces al dia, (mañana y noche)con aceite de eucaliptus, ricino y sesamo....hasta ahora, excelente resultado, se me ha pasado el dolor!!! e hinchazon!!

Te agradecere me cuentes como te va con la operacion de rodillas!! Saludos cordiales, Chicho .

Santiago de Chile, Sudamerica

metalminded profile image
metalminded in reply to mtwskk

That's exactly what my orthopedic surgeon told me as well.

hogolyo2 profile image
hogolyo2 in reply to mtwskk

Can I ask why can't you get off of prednisolon?

mtwskk profile image
mtwskk in reply to hogolyo2

See trail of last message to see my Creatine went up when I went off the prednisone. Since I last wrote this I’ve learned that prednisone is protecting you and your kidney.

hogolyo2 profile image
hogolyo2 in reply to mtwskk

I see, thank you.

LivLife07 profile image
LivLife07

People forget, simply do not know, or were not told that our transplant medications affect our whole body, not just protecting our transplanted organ. Many have experienced gaps in transplant education. People do not all experience the same side effects as the next person, we all react differently. So it is difficult to draw conclusions that everyone will experience the same medical complication. We need to be vigilant about what is going on with our health and ask questions and sometimes that may be a second or third opinion. Please be sure to coordinate your knee surgery with your transplant team so that everything, including recovery, goes smoothly without additional complications. Transplant is not mainstream and it takes the expertise of your transplant team to weigh in and provide their expert overview prior to any medical procedure.

SaraEads profile image
SaraEads in reply to LivLife07

Just getting over right knee replacement. Have had kidney transplant 15 years, but I am 77, so perhaps need for new knee not unusual. Had a good experience thus far. Approaching 3 months post replacement. Driving, walking without any device, no pain.

LivLife07 profile image
LivLife07 in reply to SaraEads

Glad to hear you have had a good experience so far since knee surgery! Not that anyone steps right up for a knee replacement but when it is needed and it is successful, it opens up a whole new world of vitality again. You sound pretty active for 77 years with driving and walking without any 'devices' which I would assume could possibly be a cane. Keep up the good work both in keeping active but in taking care of your kidney transplant for the past 15 years! Wishing you much health and success for your 'senior' years! We are only as old as we think and our mind can make as young as possible. We just need to help our body keep up the pace every now and then.

LivLife07 profile image
LivLife07

Hey, good luck with your knee surgery! Wishing you a great recovery!

Yankcg70 profile image
Yankcg70

Yes this is one of the topics they need to discuss with patients. I have had my cadaver transplant for 29 years now. I have had 1 rotator cuff surgery on right arm, 3 years ago, looking to have it done on left arm in next year. Along with bone spurs in back, hair loss, inability to get pregnant and other issues of the osteo aspect. This has gotten to the point that at the age of 47 i have seriously considered the option when the time comes, if this transplant fails which is a possible likely hood since its been 29 years, of not doing another one or for that fact even not doing dialysis. I think about how i spend my life worrying about how i will continue to afford everything. Even with decent insurance you have hefty deductibles and co pays. I just found out today that, in my brilliant idea to be proactive, i am ineligable for Long term care insurance. Its all so frustrating.

mtwskk profile image
mtwskk in reply to Yankcg70

I hear you, I'm about 10 years older and totally get what you are saying. Also long term care isn't what it's cracked up to be. Read the fine print, there is a limit to number of days they will pay, and it's really expensive. Don't do it.

Anyhow I get the whole forget another transplant, i'm there too, as to many troubles and I've only had my 6 years. And Dialysis, I don't have a vein they are all too small. We'll let's be blessed and positive. Hopefully both yours and mine will last many years as long as we care for them. The side effects, ie hair loss, surgery for arms and legs are still better than the alternative. God Bless and keep your chin up. It could be worse. I just wanted to tell others about some of the things that I wasn't told. And yes I did read all the books they gave me about what would happen. Losing your muscle and bones wasn't in there.

FrankF profile image
FrankF

I am on my third kidney transplant and have been on prednisone for over 50 years. I recently had both of my knees replaced and it was one of the best things I have ever done !! My knees feel like they are 20 years old again.

RUKIDNEYME profile image
RUKIDNEYME

I take calcium with magnesium to combat the side effects of prednisone. I have been on prednisone for 20 years and have not had any bone issues because I spend about 200 dollars a month on different supplements

Klevq profile image
Klevq in reply to RUKIDNEYME

I just had a transplant this new year day. Lucky me with God's blessings. The transplant has no complications and went smoothly.

May i ask what supplement you take to combat

Prednisone side effects? Knock on wood that i may not have knee issues. I seriously want to increase my knowledge

Thank you much.

mtwskk profile image
mtwskk in reply to Klevq

Unfortunately there isn’t anything you’ll get to 5 mg and you just need to take it. I tried going lower and my creatine went up so I went back to my 5 mg. Not fun but it’s still a blessing.

3kidney profile image
3kidney

Thanks for sharing, good to know.

mickfoxx profile image
mickfoxx

I’m 8 years into my Kidney/Pancreas Transplant and have been very blessed as well but have had painful knee pain in both knees, I just thought it was from all of the years of playing ball but now that I know about the knee issues associated with a Transplant I’m going to an orthopedic doc to get them looked at. Thanks for sharing this info and good luck.

RP2015 profile image
RP2015

Th

RP2015 profile image
RP2015

Thanks for the info. I had my transplant in 2015 and was not aware of this.

metalminded profile image
metalminded

Thank you very much for your post! I had my transplant almost 6 years ago. I'm a 49 year old male.

I just had rotator cuff surgery in February of this year. So far that's holding up. My surgeon did tell me once he got in the tendons looked terrible and wasn't sure it was going to hold. He explained because of the daily steroid use the tendons and everything else in my shoulder was not in very good shape.

I'm grateful for having a kidney, though this one has a virus and I will have to get another eventually, but you're so right. It would have been nice to know.

I started having some pain and weakness in my hip and knee on my right side. I'm going to go see my doctor now!!

Thank you!!!

mtwskk profile image
mtwskk

What kind of virus, there are only two that I know of and you can get rid of the virus. I had BK and they thought I was going to loose the Kidney. Your coordinator should work with your Kidney doctor and you can work thru it. I've now free of the virus and have been for 2 years. My kidney went back to where it was, which wasn't great but it works, my creatine is about 2.0 but it's been between 1.6 and 2.0 (when I didn't have the virus) for about 6 years, which means it my normal count. Check it out you can beat the virus. They can do a lot these days. Good Luck! Keep your kidney going! Rejection sucks, but can be beaten.

guido46 profile image
guido46

Thanks for sharing this info.

alimesoda profile image
alimesoda

So glad to hear so many transplant recipients have had successful orthopedic surgeries. My husband, a 2x kidney transplant recipient, needs a hip replacement. We are very nervous given that the surgeon reported a 10-20x higher chance of infection from surgery for a transplant patient. What antibiotics or other meds did you take before/after surgeries?

RhenDutchess123 profile image
RhenDutchess123

My Husband had knee pain for 35 years...we just figured it was from high school football....we finally figured out the knee pain was from PAD...Perifiel artery disease....or clogged arteries in his legs...it was severe...almost lost his feet...3 surgeries later he it's doing great...dont assume that just because your bones hurt it is the bones that are the problem...a simple test can tell you...the blood pressure and pulse in your feet should be as the same as the blood pressure and pulse in your arms....

Herewegoagain12 profile image
Herewegoagain12

Hi. I think this may be the case with liver transplants as well. I had a liver transplant and 18 months later I had to have complete knee replacement on right knee, 18 months later they had to do the other knee. 7 years post transplant both my shoulders are a mess. I also now have ckd from the medicines.

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