Transplant for my husband has gone seriously wrong. Dont know what to do...
Im writing my story here to see if anyone else has experienced the same situation as my husband or can give me some advice.
My husband is 53, got a kidney transplant almost 8 weeks ago now. We were so happy when he got the call from the hospital as he has been on peritoneal home dialysis for 2 years.
The transplant operation went very well, he recovered quickly and after 10 days he was omitted from the hospital. He was advised that they would take out the catheter 4/5 weeks post op. We were starting to make plans for the summer holidays and just enjoying this new chapter in our lives. It was amazing to see him with such a new positive outlook on his life.
He was so careful with his medications, never missing them or any of the biweekly hospital visits and going back to the hospital to get checked out for any issues (muscle pain). We wore masks around each other and didn't even sleep in the same bed together anymore to avoid transmission of virues or infections. He rarely went out for fear of infections and we literally did not have any social life. I also stopped going into the office and worked full time remotely to avoid contact with too many people.
He started to have diarrhea and some admonial pain 5 weeks post op. After a routine visit including blood stats and a scan on his new kidney in the hospital nothing came up showing anything abnormal. So with some new prescriptions for stomach issues and some slight changes in his medications we went home. His condition worsened and 3 days later he was admitted to hospital with severe dehydration caused my constant diarrhea.
He and I was told he was stable and would be out in a few days once they treat the dehydration and also remove the catheter inserted in his stomach for the peritoneal dialysis. However, the situation did not improve and after 5 days they told me that he has caught a very bad infection. This infection turned out to be sepsis... they had to reduce his immune suppressant medication putting his new kidney at risk. They told me that they had a infection expert that was recommending the correct course of antibiotics for this specific bacteria.
After another 6 days in hospital his condition worsened as the infection was too resistant even with the antibiotics. They tried to perform hemodialysis which caused a severe drop in blood pressure. He was then rushed to ICU and he has been there ever since (4 nights counting). He has been incubated and battling the sepsis infection.
He is fighting for his life in ICU at the moment. The doctors have confirmed that his new kidney no longer works. They have also said that they need to amputate his left foot which has a closed artery (he was trying to get it operated on but was called for the transplant so was unable to do so before the transplant operation) and is too damaged beyond repair due to the sepsis infection.
I am in complete and utter shock and despair that this has happened to the love of my life. I am angry that he caught this infection in the hospital, the place where he should go to get better not to get worse. I dont know what the future will hold for us if he makes it through this nightmare. He will have to go back on dialysis and he has a big fear of doing the hemo dialysis in the clinic. I have been asking myself everyday was this transplant that he wanted so badly even worth it. Was it a big a mistake bcos now he is fighting for his life in hospital, he will be physically disabled and there is still no positive feedback from the doctors to say he will survive this. We should've been told more about the risks.
Please someone tell me theyve been through something similar and things will get better? Right now I can't see the light at the end of this dark tunnel 😢