Anyone have a child awaiting kidney transplant? How do you deal or cope with all the emotions, not to mention anxiety and depression? Our 12 year old needs a kidney and my husband is not a match. I am a blood type match however, I have scar tissue on my kidneys from many many infections and I am over weight and on blood pressure medication. so I am not a viable candidate. we have had several people to be tested but we don't have a donor match yet. the waiting is stressful to say the least.
~C
Oh, mama. I don’t have any advice but wanted to send you loads of support and good vibes. Has your husband looked into the trade program? He donates to another family, they donate to your son? Ask your nephrologist. Keeping you in my thoughts.
Hey there , my son a kidney transplant last year. I understand your pain , mixed emotions. Neither me or his father was able to give him a kidney because I am blood pressure medication and his father is borderline with high blood pressure. It’s ok to cry it’s ok to scream and yell . You have to let it out . Just don’t let your child see you . What helped me was praying , asking all the questions that you can for his transplant team. Also you can ask your child’s transplant team if they have a parent that will be willing to give you some advice. Do whatever the transplant team tell you to do . If you like me I had no one to turn to and it’s really depressing and feel as if you are in this alone . But your not , I wish I had found this blog sooner because it helps. It’s going to be ok . If you want you can reach out to me anytime. Once your child receive the transplant you will be overflowing with joy . My son was behind developmentally , not eating, low energy. He has started reaching milestones and catching up . The day after surgery and he woke up and said mommy I feel better, it is truly amazing how instantly the child know. My son was 5 years old when he received his transplant and 2 year when he was diagnosed with chronic kidney disease. We had to go with decreased donor. I just want you to know your gonna go through the emotions and it’s ok . Best thing you can do is let them out . Because you have to be strong for your baby . So you’re baby can be strong . I will be praying you’re family. Be strong!! You got this mom!!
Hi. Thank you so much for your post. Well... I haven’t been very lucky with this website. Over a month ago, I’ve reached out to a few parents asking their advice and to see how their teens with kidney disease are doing and no one replied.
Hi there! You are welcome. I hope all is well with your child . My son is is only 6 years old but if you have any questions you can reach out to me . It’s hard going through with no one to look to for advice . Also there a lot peer to peer support for teens . You can ask your transplant team about the support groups.
Hi ! I really appreciate your reply ! Thank you ! Currently, we are just at the “suspecting” stage / phase for the past few years. No formal diagnosis yet of kidney disease for our 17-year-old son. So far, since the past 3 years’, his blood and urinalysis came back normal but the bubbly / foamy urine has been persistent daily along with other symptoms such as itchiness, low back, knee and bone pain, acne and backne, etc... Around your son’s age, my teen was diagnosed with hematuria which later subsided. Pediatrician is not worried.
I just wanted to know what were your son’s symptoms before he was diagnosed with kidney disease ? May God protect him and give your family lots of courage.
Problems started when my son born , he was premature . The symptoms stop until he turned 1 1/2 years old . He was not gaining weight, fatigue a lot , and very very thirsty. Thank you so much. May God be with you,your son and family. I would get a second opinion from a pediatric nephrologist. When all my son’s symptoms started the pediatrician kept telling me that nothing was wrong . And it was very obvious that something was wrong his eyes were sunken in as well as his soft spot . It was not until I asked for additional testing and his sodium levels were in the very dangerous level . And he had to be hospitalized immediately . I will keep you all in my prayers.
Hi! My son too was a premie : 6 weeks early. He stayed at the NICU for 2 weeks. What you are describing is exactly what we are going through (pre-diagnosis). Because the test results came back normal, his pediatrician is not sending my son to a pediatric nephrologist. Instead, my son is being sent to physical therapy for his persistent knee and low back pain after x-rays came back normal (thank God). But as far as I know, low back x-rays are not the same as kidney x-rays! My son too, drinks a lot of water and craves salty foods. I asked for eGrf but they won’t do it before 18 unless warrant, so I keep praying day and night. But thank you so much for your input. May God bless your family.
Your welcome. Lower back x-rays are different from the kidney x-rays. Ask your pediatrician for lab work for his sodium levels . You can contact the pediatric nephrology yourself as well . Not sure if you would need a referral from your insurance company but it’s worth a shot. Stay on your pediatrician , you are yours son biggest advocate. Don’t let the pediatrician tell you no, when you know something is not right . Make your concerns known . Just from experience because my son pediatrician did that with my son and I changed pediatricians. May god bless your family as well
Hi! I am new here as my son was just diagnosed with IgA Nephropathy kidney disease this past month....he too is 17. For us he had zero symptoms! He went to a random wellness visit and showed alarming amounts of blood and protein in his urine while nothing was visible health wise. It is my understanding from the nephrologist that this is very typical. We had no signs but were told puffiness and swelling along with high blood pressure were a good sign of something wrong but our son never had any of that.
Hi, thank you all for sharing. Just know there are people out there experiencing the same things, same feelings, same fear, same sadness helps. My son 16, just got diagnosed with IgA. No symptoms ever, then one day his urine was red like red wine, the pediatrician sent him to a nephrologist. The nephrologist diagnosed him with IgA. One day he's a healthy teenager with his life ahead of him. But now, I'm afraid to think about the future. How much time will he have? I'm scared. I'm very scared. If any of us can change the world, we would change it for our kids.
Hi. I am so sorry to hear about your child. May God be with your family. About my teenage son, I’m just at the suspecting stage and I am experiencing all the feelings you described. You are very strong Mama.
