Kidney transplant: Need support dealing with complications

Posted by las1262 @las1262, May 31, 2023

My husband had a kidney transplant March 28. He ended up in the hospital for three weeks went home. He’s been back twice for week at a time they keep saying there’s drainage around the kidney but really no explanation why the stent was pulled out and the uter collapsed, the creatinine the bunlevels are high and we just don’t get any answers and he’s feeling just horrible. Any suggestions or comments? ? It’s very disheartening when I have talked to several people and their home after five days and they’re living their life and he had excruciating pain down like in the groin area that he couldn’t even get out of bed then he got pneumonia. They finally did a nerve block and they’re just saying well. You got to suck it up and get up and walk around and he couldn’t even get out of bed because of the pain he still has a stabbing pain And he’s just not getting better and we had it at St. Luke’s hospital in West Milwaukee Wisconsin.

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Is it true that 75% of the kidney transplant patient go back into the hospital after the first month well we’re already on our third time staying and we stayed three weeks after the transplant because he had all kinds of complications extreme pain fluid build build up the Stent taken out the uter collapsed and we just never get answers. It’s always a run around and this shouldn’t be happening. You know this doesn’t happen and you should be out here with Tylenol and all kinds of crap. It’s a it’s just very disheartening.

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Talk with your transplant team. Have they did a kidney biopsy? They should be able to give you answers.

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Maybe get a second opinion at UW Health in Madison. We were working with Froedtert and St Lukes and were receiving unimpressive levels of care. We transferred to UW Health and the team there is amazing! I just think this is too important to not feel 100% comfortable with your team.

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Thank you whom would I get a hold of in Madison

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Call the UW Madison Transplant clinic and tell them why you are calling, they will steer you in the right direction. A remarkable hospital. I had 2 transplants there in 2021.
If possible, they will help you. God Bless:)

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@las1262

Thank you whom would I get a hold of in Madison

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I would just reach out to the transplant clinic there and get in touch with a coordinator. They have a large team and will fit you with the appropriate coordinator and nephrologist. The direct line to the Transplant Clinic is (608) 740-3875. Again, great group of experts that are providing amazing care and attention to my husband who is 3 months post transplant. Good luck!

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Once you are able to be admitted and or seen by the transplant clinic team of drs a CT scan may be ordered. There are a variety o reasons pain is present. Transplant doctor along with other specialities will check for hernias which can sometimes occur in kidney transplant patients. A thorough medical investigation will take place. I myself starting gaining weight around the abdomen a year and half post transplant and it was a hernia .... now I have to have surgery to fix this issue which I may have self inflicted. I thought I could cut bushes as I was so eager to return to my. garden. Scissor/ pruners may have been too heavy and compromised my intestines. Strange I had no pain whatsoever. When a person has pain after a kidney transplant the source of pain can be different for everyone. Nephrologist are quite experienced with pain post kidney transplant. Your husband may be seen by a gastrointestinal surgeon as well. Best of Luck.... take a deep breath

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@las1262 transplants can be tricky and sometimes there are unforeseen complications. My father-in-law and I each had transplants. We both had drainage issues and readmissions. I had trouble with the placement of a catheter (that caused pain). I also developed an incisional hernia that required surgical repair later. Others have suggested contacting your transplant team, getting a second opinion, and going somewhere else for help. Any of these suggestions might be beneficial. A teaching hospital such as at UW Madison is another good possibility. Whatever you decide to do, pain should not be ignored. It could be telling you something is wrong. A good place to start looking for answers is with your local physician. Can you do that?

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I received a kidney transplant 6 months ago and I too had some post transplant complications with multiple fluid buildup near incision and also near bladder. It was very painful. It was fairly soon after transplant (3-4 weeks after) I had to stay in the hospital for 4 days and they placed a second catheter to help with the fluid. After that things got a little better but still had a lot of pain and the pain finally got better after 4 months. Now at 6 month post transplant I occasionally feel a little discomfort when I bend down but it’s manageable. I also had a bad reaction to the pain meds so they gave me Lidocaine patches that definitely helped with the local pain ( near incision) and Tylenol. You should definitely talk to your team about pain management, they should try and find something to help , it’s not a good thing to have pain all the time for a long period of time because it can attribute to depression. Best of luck to you

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Perhaps a second opinion is in order. My kidney transplant was done at Mayo, Rochester. I can't imagine this behavior there.
I spent years with my brother at St. Luke's receiving cancer treatment, which is why I suggest second opinion.

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