My daughter is 12 years old. She started on Dialysis when she was 4 years old. A tiny little thing full of life and not much of a clue as the the troubles she has already seen.
Funny as during the first few weeks of dialysis, I remember asking Dr. C is there like a support group or something for families, how do they learn to adjust and keep positive, and he said you are the support group, look around the rooms there are other Moms, Dads sisters and brothers and sometimes other loved ones whom sit with their Dialysis patient, who rub their feet when they cramp, who adjust the tv, and step away when the teacher comes.
At first I did not understand why there is not an actual group or something. Although looking back I totally get it now. You learn to become Kidney Families. We have watched so many kids get Kidney’s over the years. We have seen them come from Mom, come from Dad and come from Cadavers. We have seen the ups and the downs and we have experienced the losses together. We have lost patients and we have lost kidney’s.
I can easily say we know. It has been a very long time that we have been part of this group. My daughter had a transplant 1-1/2 years into dialysis. That kidney transplant failed and she was in very critical condition for 8 long weeks. At that time we were quite thankful for dialysis that clearly saved her life and continued to do so until last year when she received her 2nd transplant. This one works, She does have a healthy kidney, unfortunately she does not have a healthy bladder and she has very low immune system so there are viruses that have been trying to attack the kidney. We have had a lot of ups and downs with this kidney but overall so far so good as they say.
Right now our Kidney families are all going through something. Today is a 1 year anniversary of a little guy who is 3 now, his Mom gave her spare to him. It was a great transplant, a few bumps along the way this year but overall he is growing, and he looks to be the picture of health. Of course us families know looks can be very deceiving and each and every good day is truly a miracle.
Right now one of our Kidney families is sitting in the hospital fighting rejection. It is just a little less than a year for her kidney. We met her when she was 10 months old she will be 8 this spring. She is the most precious little one. She has been cracking me up since the moment she started talking and yesterday my heart was truly hurting for her and her family. We are keeping our hopes up that this will reverse as one of the first things they teach you is there can be bouts of rejections and there are treatments.
Of course that does not change how scary it is. How scary for the parents, how scary for the child, and how scary for everyone who knows and loves them. No one wants to see the downside of Kidney disease. When someone has Cancer, everyone automatically feels sorry for them, an instinctive compassion. When someone has kidney disease, people are like well you can get a transplant, you can have dialysis. Although that is true, more people die of kidney disease each year than most cancers. There are facts you can look up but I have seen it and experienced it myself.
When people find out my husband died of Brain Cancer, they automatically have this look on their face. When he was sick people were so kind and compassionate although most had no clue what he was really facing. My daughter alike all other Kidney patients has a huge battle ahead of her. She has a lifetime of medical intervention to be ok. So do most Kidney patients.
A few years ago we had a neighbor who was on Dialysis, he had been on for well of 20 years he was an older gentleman and was able to do dialysis at home. Two doors down from him was an older lady who also did dialysis, so my daughter grew up knowing the kids who went through it and the adults also. She would feel bad for the old lady as she was a druggie and her dialysis was the least of her problems. She would knock on our door looking for pills and drugs and cigarettes and we would have to walk her back to her house and tell her we can’t help her. And if you think she was a little nutty she lived with her Mom who is the one who started asking for the cigs, she would beat on our door with her cane. Come to find out my husband would feel bad for them and when he was at the store he would buy them cigarettes so they would come to him when they needed more. I did not find that out until he was very sick himself and he started confessing things he felt I should know, but that is for another story and well there is lots of those, I feel like sharing but then I am not sure I am ready. He was a huge support system in our Kidney Family, not just for us but for the nurses and the hospital, they always had little projects for him to do and the kids and parents loved him. When he passed they were as sad as I.
Once you have experienced a few dialysis treatments with someone you start to learn the process. You see how different people get hooked up differently, how their machines are set for different outcomes and you see when they did not follow their diets or fluid restrictions. Monday mornings were always rough, by Sunday night my daughter was a swollen mess by my standards but some kids would over due it even more. Especially the teenagers as they have a bit of rebellion, more than average they can’t just be teenagers they have to be sick teenagers, it’s really different and being part of that family you learn to adjust. My older kids would go when they did not have school as dialysis is never a day off, you can’t not have a treatment because it is a holiday as that is very bad. My older daughter became friends with the teens that were there when she was that age, they would play cards together and play on their ipods and such, talk about music and books and keep busy. My son always played with the babies as they adored him and he could entertain them with funny faces while their parents ran for a coffee, or talked with the docs or nurses. Once you are part of that unit you are always a part of it. Patients from 10 years before would stop by to give a nurse a hug or show them their new baby or something like that. Your dialysis nurses are like second parents, they will nurture you, care for you, discipline you and love you it is kind of amazing and honestly post transplant patients miss that closeness, they miss that 3 times a week togetherness and knowing they are caring for your kids, they find things sometimes long before parents do as they are trained and experienced in this disease and its many different faces.
And then there are the families who must experience lifetime dialysis, their patient can’t get a transplant, there can be a number for reasons why, autoimmune diseases make it very difficult as your body is already fighting with itself. Sometimes infections and certain antibodies cause no transplant, and immigration status can also cause you not be qualify for a transplant. It is all very complicated and some of it is just downright sad.
I do know one thing for sure, my daughter has had a long battle these 12 years and has a long battle ahead but knowing she has an amazing family, and an amazing kidney family helps more than you can imagine, Just a few months ago there was about 6 kidney kids all admitted at the same time. We called it the big sleep over, none of them were there with anything contagious it was all kidney related stuff so they had tea parties in the parent lounge and fun time in the playroom and it was great for the parents, if you needed to run home to shower, grab cloths or check on your other family members you knew your kid had another person that they could feel comfortable with.
I will say although my emotions are all over the place today. I am so thankful for my kidney families they have made me who I am today. I am stronger, more informed and more loved because I have them in my life. And to all those we lost touch with post transplant, I think of you all often and always have the best wishes in my heart.