This is to msLo, I have a daughter who will be 19 next month, who was on dialysis for 9 1/2 years. We were told that this kidney transplant was a blessing, as my daughter was near death. Just like you, my daughter regrets getting her kidney transplant, she actually coded the morning we were to be released from the hospital, which delayed our going home by 2 days. She was hooked up to an EEG, a heart monitor, and several other machines, to monitor her, trying to find out why she coded. Everything came back negative and we went home. Needless to say, that was the beginning of the nightmare she has undergone. She has literally died on me several times since her transplant, has had 5 mini strokes, numerous hospitalizations and 3 more major surgeries, do to other issues that arose from her kidney transplant. Praise the Lord I still have my daughter, or I should say, what’s left of her. The prednisone has caused her to have severe psychosis and she was hospitalized for this and believe it or not, the Childrens Services in our State, tried to take her away from me, she was nearing 18 at the time. They claimed I wasn’t fit to take care of my daughter, do to several suicide attempts. Pfft! I’ve done everything within my power and beyond, to keep my daughter alive since birth. She also went from being 100lbs soaking wet, to 180lbs, do to the prednisone, she hates it. She is still beautiful, but to listen to her talk about herself, it breaks my heart. She has lost all self esteem since her transplant and regrets having it done. She, like yourself, says she wishes they would stop giving her the steroids. Another thing you mentioned is shaking from the tacrolimus. My daughter shakes so bad, she can’t even write legibly any longer, another down side to her transplant. My daughter has also developed seizures since her transplant and is now on a high dose of antiseiziure meds, which prevents her from getting her license. When we inquired about a support group for others like my daughter, we were handed a website to go to. Seriously? A website for psychosis and everything else the two of you have paralleled? Wow! My daughter was sent to a program called the CAT program, which is a mental health organization for children with severe depression. To add insult to injury, she was put on yet more medicine for her depression and honestly, she did NOT benefit from this program at all, or the meds. It was only an invasion of our privacy, as these people came twice weekly to our home. I appreciated their efforts, but they were not on point with what my daughter was going through, they had NO experience with transplant recipients. As you know, not too many people understand and know what you guys have been through. It’s so sad that you both were given a gift, that keeps biting you. The plus side to all of this, is that you are both here to complain about it. Lol! Perhaps the two of you can help each other and others like yourselves. Where are you located, what state? We are in Florida. I think it would be nice if you and my daughter became acquainted on Facebook or one of the other social media’s and then perhaps you two could talk on the phone at some point and help support each other. We have yet to find a real live support group anywhere here in Florida, where they actual have some type of support for young transplant patients, or any transplant patients. I hope you are doing well, and like I mentioned previously; at least you are both here to complain about his. God knows, I wouldn’t know what I would do, if I didn’t have my daughter and I’m sure your loved ones feel the same way about you. Take care and may God Bless you.
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