BK Virus and Kidney Transplants

My daughter received a kidney transplant in 12/2015. She is now 12 years old and she was on dialysis for 8 years prior to receiving her transplant. She has other health issues, besides her kidney disease and it was a combination of reasons that she needed to wait that many years for a transplant. We knew going into it that Kidney Transplant is another treatment option. One of our dialysis nurses constantly reminded us of that. I did not completely understand why until now. She  wanted us to be prepared that although some things will get better others may not. She also saw other patients go through different battles and all of them did not have the best outcomes. Being a medical professional is not simply having the job of hooking someone to a machine, or taking blood or performing a surgery. It is so much more, it is learning to help people understand it all, help people accept it and so many other comforting things that just go along with most compassionate people. I have watched a nurse love my daughter back to health.

My daughter had a failed transplant when she was 5 she was one year on dialysis and all the signs showed it was a great time for her to receive a transplant. We all tested to see if any of our family members could be a live donor. This was not the case and she went on the National Donor List. She received the kidney, surgery went great, first night went great and then the urine output slowed down. Then she stopped breathing then came intubation and a very long recovery. During that time the kidney failed and she wound up in a medically induced coma to try to heal her. She had surgery they removed the failing kidney and back on dialysis she went. During that time one of her dialysis nurses came daily to give her dialysis and she would read to her, love on her, talk to her and pray for her. She not only did her job but she went miles above it. That was the only time her Dad and I would feel comfortable to go home together, shower and pay a little attention to our other children and family things that needed to be done like laundry every now and again and giving the other kids some kind of stability. Luckily for us our kids are amazing and they took care of cooking and cleaning and going to school and just doing what they would do if we were home. We were fortunate in those ways.

After the failed transplant, her Dad and I told everyone we will go to dialysis as long as needed or forever to not ever see our daughter like that. She was truly suffering and we very easily could have lost her. We did not and we gladly went to dialysis for years. About 5 years later the doctors started talking transplant again. We told them we will make ourselves ready when you believe she is healthy enough. They did testing each year until they decided it was time. They saw it was time right around the time we found out about her Dad’s health failing him, he was diagnosed with terminal Brain Cancer and I was not mentally prepared to watch his life go and then risk a repeat of the first kidney transplant. I told her doctors my concerns and they agreed that I needed to be prepared so that I could continue to be her caregiver and support.

About 1 year after my husband passed on, the doctors approached me again. They said that health wise she is ready for another transplant. Some of the issues with being on dialysis for so long was becoming obvious and moving forward to transplant was what was best. They also told us that since her age, the amount of time she has been on dialysis and the list and the amount of health issues she is having she will go to the top of the list, not first as she was still doing ok with dialysis but the top meaning could get a call same day they activate. We joked and said that won’t happen we are moving in two months, we will get the call five minutes after we get our moving truck. Well we were close, we got the call the night before, it did not work out the kidney was not healthy enough. We went home , went to dialysis in the morning and prepared to move that afternoon. We moved went to sleep and 5 in the morning we got the call again.Transplant went great, Kidney started working right away and we did not experience any issues that we dealt with the first time. This time we saw what successful transplant was all about.

We followed strict lab schedules and medicines. On time without fail everyday. Followed rules, drink tons of water!!! We did and continue to do what our doctors recommend. After the first month they did Viral Studies through blood and urine tests. They found she has the BK Virus, which is the number one reason for loss of a transplanted kidney(graft). At first it was not high in her blood and was just high in her urine. Then it started creeping up in her blood also. They reduced one of her Anti-Rejection meds, Then eventually they took her off of it. Then she started having dark and bloody urine. She spent about a week in the hospital and she wound up having angioplasty and a stent placement in her Ureter.

On this past Friday she went in for Labs. I was waiting all afternoon to hear about her lab work, of course  hoping for the best. I did not hear so I said that is probably good news, but I left a message anyway. On Monday I waited to see if they would call but they did not. Now I  said one of two things, they are totally slammed with kids that need more attention right now or they are deciding what direction they want to go with something. Yesterday I got a call from the transplant coordinator, I missed the call but her message was that she was still trying to get some information from the doctors and that she would call me in the morning. This morning came and I got a call from her Doctor. The BK is higher in her blood. Even though they took her off the one anti rejection and reduced the other and had strong antibiotics it did not boost her own immune system enough to reduce this viral load. So now tomorrow we will go to the hospital in the morning for labs, iv fluids and a medicine that will hopefully attack the virus and then more iv fluids. This medicine is pretty much a last resort at fighting this virus. This medication is also toxic to the new kidney. We will of course keep positive and hope that somehow she beats the odds, knocks out the virus and keeps the kidney. But reality has already set it that that might be the case and she can very well lose the kidney. I would love to hide in my room and cry right now but that will just scare her and right now she totally understands it that one way or another we will fight it with everything we have but we are not guaranteed a win.

On a good side though, she was approached by an organization called a second wish, my daugher was approached by Make a Wish when she was very little. She was granted a wish when she was 3. We went to Give kids the world and it was amazing, Sadly she was way to young and does not remember a thing. We have pictures and I try to show her and spark a memory but that does not happen. Well we met with the founder of this organization and she was amazing. My daughter wished to go to New York, She wants to shop, and go to shows and or museums and parks and she wants to meet her Big sister from her Dad that she has never actually met in person. We have this crazy relationship on the phone, computer and text but situations have not allowed us to be together in person. This wonderful lady is putting together this trip that surely will be a highlight of her childhood. So with all the good comes bad and with all the bad comes good.

I am hoping tomorrow goes smoothly and that this medicine does not make her feel like crap. Doc said it should not, hoping it all goes ok and that her kidney finds a happy balance. But no matter what the outcome she will have me and her brother and sister and other family members that adore her and will do whatever to make her at peace with whatever her body does.

Another Gift from Beyond….

Yesterday was a pretty good day. I went to dialysis in the morning with my daughter. It was a fairly smooth treatment for her. She did not get sick at all or feel bad and she was giggling listening to videos with her headphones on for most of her treatment. I sat chatting with the older kids and the nurses and took care of a few phone calls I needed to make. My Dad had told me the other night on the phone that he needed to talk to me but it was not a conversation for the phone. I thought one of three things,see my Dad will be 80 this year. My Mother Passed away 15 years ago next month. The three things I thought was Oh My I hope he doesn’t tell me anything worse with his health, Possibly he wants to take my son shopping for school cloths.(this was a tradition of my Mom’s and Dad took over when she passed, All the Grand’s get new school cloths from her) or I was in trouble for spending something I was not supposed to and he knows about it. See I am not working due to several things, one my husband passed last August and he was the one who took our daughter to her treatments and appointments and I worked full time, Two I just had knee surgery two weeks ago and prior to that I could not walk for the last 7 months and three I can’t find anyone who is willing to hire me and work around my schedule and need to sit down at work. So that being said we are living on a budget that is smaller than our lives. For a while I had some money that was left to my from my Uncle and that was helping and then my Dad helps with everything else. It is a crappy situation for me and him. I wish I could figure a way out of it and I am hoping this surgery heals soon enough to help at least the standing part of the situation.

Well I was wrong all around. None of the three things I thought came to play at all. My Dad come over, It was a really bad thunderstorm and we sat and chatted while my kids acted like kids(they are way too old, 22,15,11) but they were having fun and really getting on Grandpa’s nerves. He can’t tolerate their immature conversations and the noise is also bothers him. Well after the big one went off with her boyfriend and the TV lost our interest we decided to go out to Lunch. Funny the kids were being annoying but he said on the phone OK we will get lunch, now it was 4 in the afternoon and they were starving and he was saying well guys, your big kids you can go in the kitchen and find something to eat. Well eventually he remembered and just He and I and the little one went out. It was a great lunch/dinner but the place was freezing cold. None the less when we pulled up back home I said Daddy are you coming in?(see he never told me why he wanted to see me in person) He reached into his pocket and said you know this is kind of late. See your Mother wanted you to have this, A beautiful gold bracelet, it is heavy gold and probably has some value. He had two of them they were slightly different. He said one was your mothers, and one your grandmothers, I no longer remember who’s was who’s but she wanted you to have it and she wanted your sister to have the other. I am guessing my other sister probably got something too but since she lives with him now he probably gave to her a long time ago. My Dad worries with my financial situation I will feel desperate to buy my kids something and pawn it. He knows me and knows that anything materialistic nice but I really don’t care about it one way or another. But what he does not know is I cherish every little thing they give me. I still keep an old broken ashtray from a incents thing he brought back from a trip years ago, I still have my Mom’s locket she gave me years ago, I still have all my kids first’s so many things and I am quite sentimental about these things. I have old curtains I will never hang nor will I ever get rid of just cause my Mom gave me them after she died. My sister makes fun of me how I word it but when she passed over the next three years my Dad slowly gave me little items that she picked up along the way, he would always say oh your Mother bought this a long time ago and here so I would tell my sister’s ha ha Mommy gave me another present. So not only did I get this awesome bracelet that will look very nice when I do ever get job interviews or have opportunity to go somewhere nice, I have another piece of my Mom or Grandma. Then the bigger top it off is My Uncle. My Uncle never had kids. He was my Dad’s younger brother and growing up he was the favorite relative. He was funny and always told jokes, he was cool if he caught you doing something bad he would yell at you and make a deal I wont tell your parents if this is the last time. He caught me with my first beer, first cigarette, and first joint. He never got mad just a little yell and lecture only one time I yelled at my mother and I had to hear it for a long time. Well this Uncle not only was a really cool guy he was very generous. He would rather give you his stuff if getting new, this has come from stereo hand me downs to cars to any thing you can imagine. Currently,half of my home is furnished in things he either gave me or left to me when he passed. He always split it between me and my sisters but they swore I got the better end because I was the youngest. Who know’s when he passed it was the worst. When my mother passed my uncle filled that void for my Dad, he was not in the best of health and gave my Dad lot’s of opportunity to hang out and go places together. He always loved having all of us over to swim and have bbqs he could no longer get out of his wheel chair the last few years but he was fun to play dominoes with and have a few drinks or just hang out and shoot the shit. He was a cool old guy. My whole family adored him. Well back to the story. My Uncle was fighting a law suit. I have no idea what it was for. When he got sicker and sicker and transferred everything to my Dad and had and attorney deal with all his stuff. My uncle was Smart and he made some investments which he left to my Dad and my Sisters and me. Well My Dad told me the lawsuit was lost a long time ago. I forgot all about it. Well it went back to court for and it was won There is some big settlement coming. My Dad said he did not want to hurt my feelings when my sisters get their cut and I don’t get mine. He said that he is going to keep it like a bank account and he will pay my bills and I can actually try to live off the little money I am getting. It sounds like he is treating me like a baby but he is not. My kids are used to me bringing home 800 bucks a week and money not really being an issue.Now we live on 700 bucks a month and its very hard on me as I am feeling like crap about having no money ever. So now I can worry less. When I want to buy a new mop or get my kids hair cut its not going to be begging my Dad, I will just tell him at the beginning of the month which bills and the amounts and if I need more I will tell him. This should keep me going while I figure out my other knee and heal and find work again. I wont be doing good and I wont be out shopping and spending money and having fun but I will be taken care of and that is beyond amazing. So yeah , I have a really cool Mom she might be dead and all but she is very much still giving me gifts, I will cherish that bracelet forever. I have a really cool Uncle too. I can close my eyes and picture my life with out everything he has taught me and given me and my life would be crap with out it. So yup even though my Uncle might be dead too he continues to give me gifts from the beyond also….

So with all the bullshit I have been dealt in life, I also have been dealt some really cool, amazing and generous people in my life and their words, thoughts and actions have molded me into me. For that I am extremely thankful.