Part 3- A Journey to my Daughter’s Kidney Transplant
June 2015, Typical Wednesday morning in dialysis. Chatting and watching TV, waiting for the teacher to come for school. Dr C comes in, says come here to me, in his always the same Dr. C way. You feel like your school Principal just walked in and is about to scold you for something you are not even sure you did. He said, its time. We have reviewed everything single thing that happened last time. We have gone over ever test and saw what is the same and what is different and we all believe it is time to move forward. You may or may not get a visit from the Transplant surgeon(He always checked in on her regularly throughout the years) We were hoping when the time came he would be the same doctor to do the surgery but of course we don’t get to dictate this type of event. He told me that The transplant coordinator would be over to see me in the next couple of hours so If I need to stay late after dialysis plan to do so. That today they will activate her on the official list. I don’t think I uttered a word, I just let the tears run down my face. I smiled and said I don’t know what to say. It’s so scary and so exciting and he smiled and quite frankly I don’t even remember what he said. What ever it was I continued to smile and went back into the room where my daughter was having her treatment. We got to use the isolation room as long as no one else actually needed. This helped for school. As she had only been schooled during dialysis she was really behind for a really long time. She has recently caught up to the best of her ability and we are actually looking at school for next year.
She said to me, Mom why are you crying. I said I am happy. Dr C said you are ready. You are ready to get a kidney and they could call right now or a year from now any time. I told her that we will wait for the transplant coordinator and she will explain some things and I may have to sign some papers or something. She was happy but did not really catch the excitement as she is the one who must endure all that goes with it. She knows long run she will feel better, short run it hurts. She is one tough cookie. When school started I went out to the floor with the other kids. When Dr. C motioned me to the desk all the older kids did their oh’sss and ah’ss ha ha your in trouble. So now they of course want to know if in fact I am in trouble, is the little one ok? I went and told them that she will activate on the list after all these years. The kids were all excited. My daughter could not hear the conversation as she was doing school and the door was shut. The walls are basically glass so we can all see each other. When I told one of the Mom’s she started hugging me and crying as that is what we do in Dialysis, we love one another. We get new members all the time. We lose members. Sometimes people leave the state, sometimes they get transplanted and sadly sometimes everything goes wrong and we actually lose a member. We hide if from the little ones so they don’t have to actually think of the reality. I recently told my daughter about an older girl she did not know passed on. She was truly heartbroken and she said she thought once that me and my older daughter were being weird and went out all day she did not know why. That is the reality of living with Kidney disease it is a treatable disease but it is also a terminal disease. If you have Kidney disease likely your end will meet with complications of Kidney disease. I know people who have lived into their late 70’s with dialysis daily and still went to BBQ’s and drank a beer. People can live with Kidney disease but each person’s severity will of course be different.
Told you I get off topic easy. I would venture to guess I am likely ADHD. I have been hyper my entire life, I never stay focused, yet I can accomplish anything if you leave me alone and let me figure it out for myself. If you pressure me into doing your way, likely I will screw it up.
So now we are on the list for a few months. Life as it is has changed for our family. I am now a widow learning to live on my own again after so many years of having a partner. I learned just how hard it is to get by on your own with limited income and limited resources. My daughter’s medical needs are a priority and unfortunately it is not possible to work full time and care for her needs. The state does not offer me any cash as an option as they state to get welfare you must volunteer 40 hours a week. I told them if I had 40 hours a week surely I would just work. I have learned to live on 20 hours a week. It does not go far and does not allow for much extras but we are living. We have a great apartment in a terrible neighborhood. We have food and we have our internet and we make due. I have a great family that knows this. They compensate where they can, Take us out to eat, take us to a movie they have even purchased us tickets to the amusement park that is local so we always have something we could do if we are able.
My oldest daughter moved on, she lives in her own place now. She has started to show some serious signs of maturity so I am able to worry a bit less. So now at home it’s just the three of us. My teenage son, and my little one and of course our dog. Our dog has been a big part of helping my children heal when they lost their Dad. He got them this puppy that no one was prepared for. He turned out to be a big baby and we have since trained him to be a Service dog. He is not the most intelligent service dog but he is their for emotional support and does that well.
We were living in a rental house. This house was literally falling apart and the rent was higher than I was comfortable paying. I was struggling financially and my stress level was at an all time high. Finally I gave into looking at low income apartments. I did not want to. I know they are all in crappy neighborhoods, with crappy neighbors and crappy stores and all that. I also knew that the apartments are kept up with, big, fairly new and cost a comfortable amount for me to pay. I had no choice but to either pack it in put my stuff in storage and beg from my family or move to the apartments. I chose the apartments. A couple of months had past since my daughter became active on the list. I joke with her nurses I said if I know our life, we will get “The Call” the day we are moving. They laughed and said if I know you guys, you are right that is just when it will happen.
Moving day approached. We packed we went through our stuff and really got rid of things we did not need to move with us. A big job and with as stressed as I was I was proud of myself for accomplishing most of it on my own. My son and daughter of course helped but I am used to my oldest daughter and my husband helping me with all the big stuff. The day before moving. I was getting everything in order. We had packed everything we could possible pack and I finished working for the day. We decided let’s watch an episode of our favorite show.. SuperNatural. I left my phone in my room and I was sitting on the couch ready for tv. I hear my phone ringing and I said to my daughter Answer that. I hear her on the phone and say I will get my Mom. I said who is it and she said I think it’s Dr. P, my eyes widened and she said I have a Kidney for your daughter. I am not sure it is perfectly healthy but if it is healthy it’s an excellent match. Please head to the hospital now. I started crying, just like I am now when I re-tell the story. I knew my oldest daughter was at work so I text her and Facebook message so I know for sure she will see one of them on her break. I called my sister’s. I started crying in the message , Don’t even know if she could understand me and I called my Dad. We went to the hospital. We did a fun night time dialysis and all of our family showed up. We waited and waited to see what direction the Kidney would go and all the old emotions came up. The night moved on and by 1 in the morning we still did not know anything. I told my daughter that me and my son are going to go home and walk the dog and make sure he is well and we will be back in a few hours. For her to go ahead and get some rest. We went home took care of all last minute moving things, not sure what was going to happen there and fell asleep for a few hours. At 5 am the phone rang and Dr. P said I am sorry but I really just don’t like this kidney. It is not showing me the signs I had hoped for but, hey the good thing is we are there. She is at the top of the list and the next match will be better. I said ok should I come get her now she said no I would like to do dialysis this morning anyway since we are going into the weekend. So I said ok I will be there by the time she is hooked up. We did a shortened dialysis and gathered all the treats everyone brought to her and went home. We waited for our moving truck. It was late and the day got hectic but by 10 that night we finally had all our stuff in our new apartment and the old house was emptied and cleaned. We realized we were starving and my Dad and Sister and Grand- niece took us to IHOP for some very needed nutrition. We were exhausted from the night before’s hospital and the move. We went home and fell asleep once our heads hit the pillow.
5:30 AM the next morning. I am sleeping starting to stir, realizing I am in a new place I think the phone was ringing. I answered it half asleep and it was Dr P. She said good morning and I think time we have a perfectly healthy kidney but your daughter is the back up the kidney came for another patient. That patient is having some health issues and we can’t be certain that now is a good time for surgery. If in fact that happens surely your daughter will have surgery by tomorrow morning at 6 AM. She said since it has only been 24 hours since your labs were drawn we do not need you to come in yet. She said don’t let her eat or drink anything after 10 AM just in case it comes earlier. The day started passing and we tried to unpack. It was not possible to stay focused as we knew(well we hoped we knew) any minute we would head back to the hospital and this time was going to be for real. We already did our practice run. Finally around 6 I get the call for sure this is her Kidney, but since they have not harvested the organs it will still be a while. Wait for a call around 9 ish and let her eat up until 8 PM. I was so excited, I was about to take her anywhere to eat and then we realized what if it is noisy and we don’t hear the phone. So we opted for some sandwiches and took care of her medical needs and bath nice and early. I told her this call can come at any time so lets just lay in the bed, watch TV and Nap. We fell asleep. About 5 minutes into sleep my son came in my room, screaming at me. Mom why are you sleeping they are going to call any minute and you are not going to hear the phone. I agreed that he should hold my phone and wake me when the doc calls. At 1:45 AM he comes running in my room, Mommy get up the Transplant Guy from the Hospital is on the phone. He said I need you here within the hour to prepare for 6 am surgery. I made a few phone calls and we headed to the hospital. I will never forget walking through the parking lot to the main hospital to admissions. We ran in the security guard and he said what are you guys doing here its 2 in the morning. I said she is getting a Kidney. We had a happy dance party for a few and he escorted us to the ER where they do middle of the night admits. We tried to be patient waiting for transport but now it was approaching 3 AM and I just wanted her to be with her Nurses and make sure they take care of all the last minute details. They lady at the desk told me I won’t tell anyone if you guys just found yourself in room such and such she gave me a quick wink and we ditched the ER and went straight to the pediatric floor. We know that hospital better than the employees so this was easy for us. When we finally got to the room life turned into slow motion. My sister showed up and brought me coffee or soda or something. I called my oldest daughter about 4 million times. Poor thing was sound asleep and never knew anything until she was halfway through the surgery. My Dad and sisters and son sat with me during the surgery.
We were told the surgery should be about 4 hours long. Before we went in my daughter told the surgeon. Hey Dr B can you take a picture of my Kidney. He explained that at his age that would be technically challenging but he would ask and see if he could make that request happen. Well he did and he had it framed for her. I do believe I told you before she has the entire staff wrapped around her fingers. We waited and waited and the 4 hours turned to 7. I started to panic and just when I thought I could take no more, out came Dr. B He said well she is doing great. He said this is your daughter you know she is a complicated tricky one so surgery would have to be complicated and tricky but it is done and we believe everything is doing great. By the time I go to see her she was already off the Vent. This was the exact opposite of last time. She was producing urine. At first it was a little slow. I was semi panicked but the docs were happy. The nurses were happy, everyone that was there 7 years ago and remembered all that went wrong, we’re confident that this time would be different. The days started passing. She started producing more and urine. She started tolerating the pain and she started eating. Things were truly looking up and by the end of the week they were talking about transfer out of the ICU to the Floor. This is a huge step and about another week passed and we went home. Although she had to get a Urostomy and that is a complication of not having a functioning bladder. That just a complication for now. In the future someone will figure out the next step and build her a bladder and hopefully it will be functioning.
It is now 8 weeks post Transplant. All labs are within normal ranges for a person with healthy kidney function. She is having a few issues with the Urostomy that we are working through and her blood pressure is finally trending down to a more tolerable number. She is eating and drinking like a champ and each day she gets better and better. Each day we watch her skin get clearer and softer, her incision is almost totally healed and most of the bruising is gone. We have started taking daily walks, resumed school( still at the hospital) and we are actually learning what it is like to have life Post Transplant. It is a true miracle. We could not be more thankful to the donor family for making that unselfish decision to donate and truly make my daughter’s life healthier therefore better.
Thank you for taking the time to read our Journey through her Kidney Transplant.
There are 3 parts to this story in total….