Post kidney transplant issues

Posted by Charlie @ca426, Fri, Jun 28 7:48am

A little over 4 years post transplant, and the kidney has hydronephrosis ( swelling) , their are going to put a tube through the kidney wall into the collection duct, there’s a name for this which I will not attempt to spell, it relieve’s the pressure in the kidney and they can find the blockage or restriction.

@lindajo

Thank you for the reply. My big concern is that by him laying around all day he’s losing muscle tone. I’ve noticed that he gets out of breath just walking a few feet. I keep telling him that he has to force himself to get up and move around.

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@lindajo, Have you thought about recruiting one of his friends to help with this? maybe a friend might he helpful here. As a patient, I got tired of my husband 'nagging' me, and would be tempted to ignore him ..

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@jolinda

@lindajo
I would tire very quickly after kidney transplant. Mayo had me take Vitron C which is an over the counter Iron supplement because my hemoglobin was so low which can make your oxygen low. Maybe ask if it is ok for him to take. Once he is stronger physical therapy might help too, it's a tough process to go through everything he has had to endure. Meanwhile how are you doing? Are you resting and taking care of yourself?

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Hi. Boy have we've been going through a lot these past three weeks. My husband has been in the hospital twice. His creatinine went real high, had a sonogram done and they said his ureter had collapsed. They are calling it Hydronephrosis. Is this a normal thing? They have a tube going to it with a bag to catch his urine. All they can tell me is they dont know why it happened.

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@lindajo

Hi. Boy have we've been going through a lot these past three weeks. My husband has been in the hospital twice. His creatinine went real high, had a sonogram done and they said his ureter had collapsed. They are calling it Hydronephrosis. Is this a normal thing? They have a tube going to it with a bag to catch his urine. All they can tell me is they dont know why it happened.

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@lindajo I had my transplant 8 years ago. About a week or two after the transplant, I got very sick and was readmitted to the hospital. It turns out my ureter had failed. They placed a stent to drain the urine (the kidney was thankfully going strong), which stayed in place for about 3 months so that everything could calm down. I then had a repair where they attached my native ureter to my new kidney. It was quite a rare situation, but a success! 8 tears post and I’m still going strong!
I had a lot of depression during that ordeal and it took me long time to feel good again, but my care team was awesome, as was my family. Everyone’s recovery is different. I remember dragging myself in for labs one morning and in comes this young man, fit as a fiddle, saying he was a week post op! So full of energy and excitement! And then I remembered I’m at least 40 years older and that maybe in my 20s I would have bounded in too. We all do the best we can.
Good luck to your husband and prayers headed your way.

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@mollyv

@lindajo I had my transplant 8 years ago. About a week or two after the transplant, I got very sick and was readmitted to the hospital. It turns out my ureter had failed. They placed a stent to drain the urine (the kidney was thankfully going strong), which stayed in place for about 3 months so that everything could calm down. I then had a repair where they attached my native ureter to my new kidney. It was quite a rare situation, but a success! 8 tears post and I’m still going strong!
I had a lot of depression during that ordeal and it took me long time to feel good again, but my care team was awesome, as was my family. Everyone’s recovery is different. I remember dragging myself in for labs one morning and in comes this young man, fit as a fiddle, saying he was a week post op! So full of energy and excitement! And then I remembered I’m at least 40 years older and that maybe in my 20s I would have bounded in too. We all do the best we can.
Good luck to your husband and prayers headed your way.

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Thank you for the reply. I know and understand that everybody heals differently. It just gets so frustrating seeing him go through all this. He's not the energetic man he was before the transplant. Our visit Wednesday was exhausting, they drew blood and his magnesium and phosphorous were low so he had to have a 4 hour drip. We are a little over 3 hours one way from the hospital.They took the bag off and clamped it, so far he has been urinating. We have to keep a daily urine count. If he goes 8 hours without urinating then we have to put the bag back on. We go back next Thursday and they might remove the tube to see if the ureter stays open. If not they are talking surgery.
Im glad to hear you are doing good 😊

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@lindajo

Thank you for the reply. I know and understand that everybody heals differently. It just gets so frustrating seeing him go through all this. He's not the energetic man he was before the transplant. Our visit Wednesday was exhausting, they drew blood and his magnesium and phosphorous were low so he had to have a 4 hour drip. We are a little over 3 hours one way from the hospital.They took the bag off and clamped it, so far he has been urinating. We have to keep a daily urine count. If he goes 8 hours without urinating then we have to put the bag back on. We go back next Thursday and they might remove the tube to see if the ureter stays open. If not they are talking surgery.
Im glad to hear you are doing good 😊

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@lindajo, I have been traveling. I did find this information about hydronephrosis that I want to share here. I apologize for the delay in getting it to you. https://www.kidney.org/atoz/content/hydronephrosis

I hope that he is showing some improvement. Has the tube been removed? What do the doctors say about any future treatment?

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@rosemarya

@lindajo, I have been traveling. I did find this information about hydronephrosis that I want to share here. I apologize for the delay in getting it to you. https://www.kidney.org/atoz/content/hydronephrosis

I hope that he is showing some improvement. Has the tube been removed? What do the doctors say about any future treatment?

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Good morning. Thank you for the information. He's back in the hospital. I didn't say anything about the x-ray he had done of his stomach about 3 weeks after the transplant but I will now. It showed a piece of metal on his right side. The doctors said it wasn't theirs and they dont think its nothing to worry about . I keep thinking, did this metal puncture his ureter. I took him to our primary care physician cause he just kept getting weaker. The doctor sent him for a stomach x-ray and now the piece of steel is on the left side. I took him to the transplant hospital and they admitted him. They are going to do a scan today then decide what should be done. I sure hope they can get him back to feeling better.

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I just read this today and wanted to alert all of the post-transplant patients to it, although I think it could benefit everyone. Apparently when you are flying and use the toilets you are better off not washing your hands at all, rather than using the airplane water! Carry sanitizer.
I knew to not drink the coffee made with the water on airplanes but it never occurred to me that the water could be so bad that even washing hands could be bad. Our last flight was coming home from Denver on JetBlue in August. Thankfully none of us had any ill effects.
JK

https://www.huffpost.com/entry/airline-water-quality_l_5d8152f7e4b03ec1bc96639b?ncid=APPLENEWS00001&guccounter=1&guce_referrer=aHR0cHM6Ly9hcHBsZS5uZXdzL0FzZDJXYmZVelM5eXZDMC0wWFZjUlBB&guce_referrer_sig=AQAAAK1sgRTeIPGFWafHWbSmYCHKqqa8e0NyOWmNw_rR4XwVYYlaVyDs0GAV20rTl7HQGNQQqYpUiYs-2BI8Sa-3DUOZoijTy4hsO4H10kIBEuyKbQ3melm0VQZ4nxOi7r14-m4GxgtQlSBZIsscVbJcRUtmZnk_8-qgrSsY_cw2Z4VP

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@contentandwell

I just read this today and wanted to alert all of the post-transplant patients to it, although I think it could benefit everyone. Apparently when you are flying and use the toilets you are better off not washing your hands at all, rather than using the airplane water! Carry sanitizer.
I knew to not drink the coffee made with the water on airplanes but it never occurred to me that the water could be so bad that even washing hands could be bad. Our last flight was coming home from Denver on JetBlue in August. Thankfully none of us had any ill effects.
JK

https://www.huffpost.com/entry/airline-water-quality_l_5d8152f7e4b03ec1bc96639b?ncid=APPLENEWS00001&guccounter=1&guce_referrer=aHR0cHM6Ly9hcHBsZS5uZXdzL0FzZDJXYmZVelM5eXZDMC0wWFZjUlBB&guce_referrer_sig=AQAAAK1sgRTeIPGFWafHWbSmYCHKqqa8e0NyOWmNw_rR4XwVYYlaVyDs0GAV20rTl7HQGNQQqYpUiYs-2BI8Sa-3DUOZoijTy4hsO4H10kIBEuyKbQ3melm0VQZ4nxOi7r14-m4GxgtQlSBZIsscVbJcRUtmZnk_8-qgrSsY_cw2Z4VP

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@contentandwell
Thanks for sharing this it is such important information. I used to always get coffee when I would fly because I was cold and I thought it was hot so therefore safe until someone said it's so unsafe the flight crews don't drink it. Yuck!!! I have also heard that the airport kiosks are the germiest thing you come in contact with traveling followed by tray-tables and arm rests. So important to stay safe!

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@jolinda

@contentandwell
Thanks for sharing this it is such important information. I used to always get coffee when I would fly because I was cold and I thought it was hot so therefore safe until someone said it's so unsafe the flight crews don't drink it. Yuck!!! I have also heard that the airport kiosks are the germiest thing you come in contact with traveling followed by tray-tables and arm rests. So important to stay safe!

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@jolinda. I always thoroughly wipe down the tray table immediately. I know it can be really gross. Being on immunosuppressants that is the last thing I need.
JK

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@lindajo

Good morning. Thank you for the information. He's back in the hospital. I didn't say anything about the x-ray he had done of his stomach about 3 weeks after the transplant but I will now. It showed a piece of metal on his right side. The doctors said it wasn't theirs and they dont think its nothing to worry about . I keep thinking, did this metal puncture his ureter. I took him to our primary care physician cause he just kept getting weaker. The doctor sent him for a stomach x-ray and now the piece of steel is on the left side. I took him to the transplant hospital and they admitted him. They are going to do a scan today then decide what should be done. I sure hope they can get him back to feeling better.

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@lindajo, I am thinking of you and your husband. I hope that the scan provided the necessary information to find a resolution for this. Is this being done by or in coordination with his transplant team?
Drop me a note here when you get a chance. Rosemary

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@rosemarya

@lindajo, I am thinking of you and your husband. I hope that the scan provided the necessary information to find a resolution for this. Is this being done by or in coordination with his transplant team?
Drop me a note here when you get a chance. Rosemary

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Hi Rosemary
He's back in the hospital. He needs a blood transfusion (again) . They are saying everything that's going on with him is rare.
When he was in the hospital last week he had a fluid sack so they cut a hole by the new kidney so it could drain then they packed it with gauze . They set up for nurses to come to our house and change the packing. The nurse who came yesterday did not like the way he looked so he called for the ambulance. As soon as I get more information I will let you know.

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@lindajo

Hi Rosemary
He's back in the hospital. He needs a blood transfusion (again) . They are saying everything that's going on with him is rare.
When he was in the hospital last week he had a fluid sack so they cut a hole by the new kidney so it could drain then they packed it with gauze . They set up for nurses to come to our house and change the packing. The nurse who came yesterday did not like the way he looked so he called for the ambulance. As soon as I get more information I will let you know.

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@lindajo That's really strange about them finding a piece of metal inside of your husband. If it wasn't from the transplant where could it have come from, and what are they doing about it?
Please keep us updated. How frustrating to wait all that time for a transplant and then have other things like this happen.
JK

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