Sunday mornings random thoughts…

When I wake up feeling pretty good, I like to take advantage. I get up start my coffee, clean up the mess my son leaves overnight in the kitchen. If the weather and my knees permit, I like to go for a morning walk. I don’t like to walk in the heat or pouring rain. This morning was perfect. I got up and said wow it’s sunny and cold a perfect morning for a walk.

I grew up in New York. Long Island until I was 12 and then Queens. I was by nature a city girl. I love the excitement of it all and I most especially loved the people watching. My friends and I would go into “The City”(Manhattan) , go to Washington Square Park and people watch. I am sure we did more stuff but that is what my memories like to serve me.

With that being said I am the kind of person who say’s Good Morning, or Hi. I usually smile and go on about my business. I do not expect people that are random strangers to stop their lives to politely give me small talk. I do, however expect a simple return smile or a quick Hi.

Is that a lost way? Do people not say Hi to random strangers? Do they not start their day’s off looking for a way to have a good one? I am so confused. I walk past so many people on an everyday basis and I smile and say Hi to most of them. The ones I do not smile and say Hi to are the ones who never smile back. I have neighbors that walk down the stairs with me most mornings and won’t utter a Good Morning back. Now I choose to walk behind them so I don’t have to let them see the disappointment on my face. Why I allow this to disappoint me I have no clue. I just am friendly and kind and prefer to be around like minded people.

I have been told over and over what Rude people New Yorkers are. I am usually appalled by it. Perhaps it is just my own personal experiences. I really don’t know but I have been in Florida for 24 years now. I have yet to live in a neighborhood with friendly people. I have had friendly neighbors after I forced my friendliness on them. I am not aggressive by any means but I am persistent.

I really thought when I moved into my current apartment complex that I would meet some nice people. I thought there people here are basically in the same financial boat as me. Likely there are a lot of single parents as this is an income restricted complex. Boy was I wrong the people here are mostly rude. I just walked past two neighbors in the hallway that were so busy not saying Hi back that they damn near fell down the steps. I walked past a young girl, perhaps 14 or 15 I smiled and said Good Morning, Nice morning for a walk and she rolled her eyes at me.

I sure hope my experiences are limited and that there are still polite, friendly people walking this earth. Either way, I always see it this way. When I go to bed at night , I have no concern that I have brought anyone else any harm for that day. I feel like I did my best to be a good person and be nice and polite to people. So I don’t lose sleep over it, but it does sadden me to know that something a easy as a smile is something people even young people just don’t do. Perhaps they do it only in closed enviornments? Maybe their families have thought them that everyone is a stranger and horrible people so never smile , never be nice to random people? I don’t know but surely one thing I know I will keep being me. I will keep doing the same things I do and hopefully maybe just maybe it will rub off on others.

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Part 3 – A Successful Transplant

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….

Part Two-It does not always work out…

Part 2

 

After 9 weeks in the Pediatric ICU, my daughter started to gain strength and start to heal. She was transferred to the floor where she immediately started going back to her regular self and was home with-in about 2 weeks time. We went back to our Dialysis and school routine. We were so happy for Dialysis and our daughter being alive and getting back to what was her normal. We told everyone we are happy to go to dialysis for as long as it takes for her to be healthy enough to try again.

In the end of the day Kidney Transplant is just a treatment for Kidney disease. It is not a cure. It does not come without risks or without worries. Kidney Transplant has ups and downs just like dialysis but it seems to have more ups. I saw several other children go through successful transplant and I did not understand why my little one had to endure so much. Why did she have to be born with all this extra crap, that believe me you would not want to wish on anyone. Why did she get a matching kidney and she not be able to tolerate it. The kidney transplant failed. She did not reject the kidney. As bad as all that was, not rejecting is good because that will affect the future less than if it did reject. So I guess that has to be the silver lining. Fast forward to today I will state the future is brighter in many ways and yes we are quite thankful that this past failure I am telling you about was not a rejection. A medical professional could explain it better but basically you have antibodies in your system and so will the donor. They have to work out or it will not be successful.

Several weeks after we were home from the hospital, we got back into our routines and we watched out family as everyone changed. Seeing your child on the verge of life and death and being completely powerless is lifechanging. That goes the same for your baby sister and that is what our kids were feeling, powerless to help their sister and afraid to hurt her when she got home.  Finally things were almost going in a good direction and I got laid off from my Job of almost 14 years. Now our family dynamics completely changed. My husband stayed home with the kids for many reasons. One was that I had a good job and with day care and such the difference of what he would bring in to what I was making was just about even for the most part. He had some specific issues that interfered with his ability to work certain jobs, although truthfully he was qualified for more than he believed in himself for. That is a story for another day. He qualified as a great Dad, up early in the morning, walk you to school or the bus stop, be back to pick you up the same with lunch or candy or  something fun more often than not. Discipline and rules were often bent to accommodate the needs of having a sister with a bunch of extra needs. I started going to dialysis regularly and my  husband started managing some apartments and we made ends meet. Not so great but well we got it done.

The truth is, although the little one has had all these health battles, you can hear our story and say wow or whatever you feel but the truth is this little girl is tough. She has been through it all you as long as she is dressed you would not know. You would not have a clue, until we told you or perhaps you noticed she is small for her age. Her brother became her hero. He would do everything for her to the point where  he would sacrifice his own fun for hers. But in a all reality he hung out with her all day, and was by her side but he was a brother, an annoying typical pick on you brother. Her sister bossed her around and yelled get out of my room just like any other sister does. So that was alway the good thing. She got treated like any other kid, but she did not of course, she had everything she could ever want that interested her at what ever age and everyone knew it. She had the entire staff at the hospital wrapped around her little fingers and she still does. They still tell stories of her many hospital stays the random things she would say and do. She is blessed to have gotten a perfect mix of the craziness of both of her parents. Mom (me) and Dad each have a crazy way about life, we beat to our own drums as people  say. She got the mix and that surely carries her with personality.

The years start passing and family members and hospital family would ask, when is she going back on the transplant list, its been 2 years, it’s been almost 4 years and we would answer , we don’t care whenever Dr. C say’s it’s time, then it will be time and not until then. We hoped and dreamed of a successful transplant for her but we just made dialysis a part of life and tried our best to live life , to the best of our ability. After about 4 years of being in dialysis the doctors decided it was time to start seeing if she has made any of the milestones they believed would make transplant successful. It took a long time and a lot of appointments to decide that it was not time. She was not ready. Success would not be a likely out come. We were ok with this. We knew at some point that would change. Another year or two past. This time when we started taking the different tests, things were starting to look better. Transplant did not seem so unlikely and it did not seem so far away.

The doctors asked me what do you think about putting her on the list. I stated that when he felt it is best then I will know time for me to feel the same way. We started to make certain goals and as we started to accomplish them we talked more and more about when she will truly be ready to be active on the list.

She needed spinal surgery and they decided would be good to have done before transplant. Less risks for infection after the transplant. We had surgery scheduled but it got cancelled. That is also another story for another day. Then we finally got the surgery scheduled again. We were looking forward to her healing from that surgery and then having those final talks about actually becoming active on the list. We scheduled the spinal surgery . Now it is about 6 years into dialysis. Everything is pretty routine for us. We got to have her spinal surgery. It had to be done in a different hospital. We wound up having to cancel the surgery and find a surgeon that would do the surgery at our hospital. This took about 6 months to accomplish, As they needed a special laser that our hospital does not have. Well they have it now and my daughter received her surgery.

During the days up to her spinal surgery my husband started having terrible headaches and vision problems. Looking back he was showing signs for much longer but of course hindsight is always 20/20. I brought him to the emergency room to find out his brain was totally swollen and bleeding. He was admitted, transferred hospitals twice. The day before her spinal surgery he had a brain biopsy. It was totally hectic having him being sick and her needing the surgery. Luckily we know some great people in the hospital and they did everything they could to help us manage this situation. The biopsy revealed he had Glioblastoma( a terminal brain cancer). We were told he would have 6 months to 2 years depending on how he responds to treatment. My daughter’s surgery went well and within a week or so they were both home.

Back to Dialysis, Started Radiation and Chemo it was a very hectic couple of months. Your family truly learns what hectic means when you have two people fighting major health issues. I tried to continue to work but it was difficult with taking them to appointments and caring for them both. He had 6 weeks of daily radiation and of course it was a 45 minute drive each way to the hospital so half the day was spent driving back and forth between their appointments.

Time was passing and the doctors really wanted to move forward with transplant proceedings. I was not ready. Emotionally there was no way for me to deal with the possibility it could all go just like the first time. Especially as our family had to face the fact that Dad’s life was coming close to an end. We did not back burner the transplant all together , we just push it away a bit. We continued to go to appointments, We made sure that we did all the tests we just did not push as far as becoming active on the list. My daughter made it to the top of the list in 2009 with her failed transplant. She was never taken off the list. She continued to accrue time and when she would eventually be placed as active she would pretty much be at the top of the list, barring obvious emergency needs of another patient.

The months passed and my husband got sicker and sicker, He went from his happy self to a person who lost their entire left side, from legs to eyes nothing worked on that side. He was a very stubborn man and refused to give up. He would do things just like before, except he would fall a lot and cause more pain for himself. Eventually he realized that he really needed our help and gave in to letting us help him. A doctor explained the disease to me and the kids this way. This is a horrible life taking disease. This disease will have its ups and downs. You will see him sleep for weeks on end and then he will have ups. He will feel ok and be able to have visits or go for a little walk outside. He explained that right after radiation you will see more ups, then time will pass and the ups will be less and less and eventually he will fall asleep one day and likely not wake back up. That as awful as this disease is that is the bonus he should simply fade away and not really know its happening. Looking back I agree. I am glad that he fell asleep and did not have to see the looks on our faces when we knew he was no more. For those last months a lot happened. That is stories for another time another topic.

My husband passed away in August of 2014. The next morning my daughter needed to be in dialysis. All the people we know that truly never understood what she went through, saw it that day the little girl lost her Dad but she could not take the day off or she would be in the same boat. Off to dialysis we went. Luckily for us our nurses there know and love our family and they helped make it not so overwhelming. They allowed us to come in a different time so we would not have to face the other patients. This was we could deal with our emotions a little more privately. Of course our dialysis family is as much family as our actual family. The next weeks were a blur. Everything routine but we were all walking around zombies. My oldest daughter turned 21 and 15 minutes after her birthday ended her Dad passed away. She did what may be typical of a 21 year old. She ran to her friends and stayed drunk for several weeks. She was unbearable to be around. Refused to deal with emotions and only wanted to think of happy things. I wanted so much to help her and reel her back in but I could not. I was broken hearted and sad. I wanted her to be my leaning post but truly she needed to branch out on her own to deal with these emotions. My son he still to this day prefers not to talk about it unless he remembers funny things. My step daughters shut down. His two daughters from before me were of course heart broken. One of them lives in the same state so she was there with us the night he passed but have not seen her since. I do talk to her from time to time but she is married to a man who never respected her Dad or us so our relationship is flawed. We do how ever love one another and we talk on the computer and such. The other one is different , she never grew up with him and their relationship had only gotten on a good path about 6 years before he passed. She was heart broken and we still talk regularly. She is a part of my world although we never have seen each other. We talk on the computer, the phone and text. We share emotions and strangely we have formed a bond, She had a bad relationship with her Mother and Father and only decided to give him a chance because she figured half of what she knew was probably a lie. I am always glad she did that as that truly made his life better. He always tried to reach out to her but it took a very long time for her to reach back. She did and they worked through it.

So now a few months pass and the doctors tell me, Time to discuss transplant. Truth is she has been on dialysis now for 7 almost 8 years and for all the health reasons it is a good time to move forward. The dialysis was started to affect her in lots of ways, bones and skin and diet and parathyroid and all kinds of issues she was having.

We started to do all the testing again to make sure everything was in order for transplant. We saw urology to see if they still recommend Urostomy after transplant, we Neurosurgery to make sure the back is ok for now, We saw Endo to make sure her hormones doing what they are supposed to. We saw the Dentist and the eye doctor and the pediatrician. We did all the recommendations…….

 

For more on our Journey to my daughter’s Kidney Transplant see part 3

A Successful Transplant….

The Journey to my Daughter’s Kidney Transplant

Part 1

 

My daughter is almost 12. She was born with a condition called VACTERL/VATER or Sacral Agenesis or Caudal Regression. They all basically mean the same thing. They basically mean that my little one is really complicated. Her first 48 hours started off with fear, surgery, uncertainty and some more fear. They also started with Love. You can’t imagine the emotion seeing your tiny little person so sick and so helpless, yet so full of life. She may have been complicated but she sure was a little  fighter. Time past and we learned of just what all this would mean and the amount of actual health-care she would need just to be ok.

It was in those first few days that we learned about her Kidney’s. We actually knew from sonograms that she was likely to have Kidney problems. We were also told people live with one Kidney. We did not make that our biggest concern at the time. The next 4 years we learned so many things. We watched her endure, surgery after surgery, sickness after sickness, pain after pain. When she was 3 we watched her Kidney Function go down. By the time she was 4 it was obvious that she would be on dialysis before to much longer.

When she was 4 she had her dialysis catheter placed and she started dialysis that day. By the time she was 5 we had gone to LifeLink for Transplant evaluation and to see if either myself or her Dad would be a match. Neither of us was a match for her. The few family members that would have been willing to test for her, had other health issues that automatically disqualified them. A living donor from a family member was not in the cards. That was not the worst news. There was good news. She was an excellent candidate for a cadaver donor. Although no one likes the idea that someone will die for you to live, the reality is that person will die anyway and they or their family chose to make the worst possible scenario, a little less, not so bad.  As my daughter was so young and had already endured so many health issues she was placed fairly high on the transplant list.

Just over a year on dialysis, we got “The Call”. I will never forget when the phone rang early in the morning. We were all up, I was getting ready for work, we were all getting ready for dialysis and school. My husband saw the phone and right away recognized the phone number as he was the one taking her to dialysis and appointments while I worked(there are lots of stories inserted here for future reference), He told me, Get the phone it’s yours ringing. (as I later found out he already told the Doctors, like she is always at work and feels bad that she does not go to dialysis please call her when the call comes) So I answer and I start crying like the sap that  I am . So instead of going to work and school, we ditch the book bags and all head to the hospital. They do a normal dialysis treatment, and everyone is talking and excited and there is so much going on. Our unit was blessed with not one match, but two. My daughter and another little boy(her kidney brother as we fondly call him) were to receive a kidney that day back to back. My daughter was second as she is more complicated and well I don’t really know why but that was the decision they made for whatever reason they made it.

I remember making phone calls, my Dad, my sisters, my job and so on. I remember one of the supervisors at my job telling me that everything is not as easy as I am making it sound so I should prepare myself that this is a big surgery for my daughter. I remember thinking why is she always such a bitch. Well in turn she was right. The surgery went off perfectly. The surgeon was pleased with the way things went and off to ICU she went and we not very patiently waiting to be able to see her. Soon enough we were all really excited, looking forward to everything positive that would come from her having healthy kidney. It was something we just can’t describe unless you truly witness and experience on a personal level. The gratitude for the family that made the unselfish decision to donate. The gratitude for top of the line surgeons that can get a kidney in a child that has no bladder and everything has totally been re-constructed.

That night she started producing urine. The doctors were ok with the amount but not thrilled. They told us that she is so sedated that we should go home and rest as when she starts waking up it will hurt and she will need tons of attention getting her comfortable. We listened. Very early the next morning we went back to the hospital. Sat quietly with her and waited for the doctors. They said that the kidney needs to wake up. This is not uncommon and there are big technical words to describe and explain all this. They continued to work at getting her kidney going. Lots of going ons. Finally she started waking up and they were able to get her off the vent. This was a fabulous day. We were so happy to see a little progress after several days of watching her basically sedated.

When we put her to bed everything was really looking up. Nurses assured us go home. Better for the kids to sleep in their bed than sleep in the waiting room. They need to have somewhat of a normal life. Well well all went home. It was my husband, the girls and my son and we were tired, excited and hopeful. We Just got home and we were hungry we started making some scrambled eggs. Just the second I flipped off the the stove the phone rang. It was the nurse. She said  you should get back to the hospital, you daughter had an episode, she stopped breathing and we are putting her back on the vent. We flew out of the house so fast that we literally arrived, with the kids upstairs as they were still intubating her. It was the scariest possible moment I ever could tell you about, except if I keep writing and I fast forward 6 almost 7 years later, I will tell you so many more scary and even scarier moments.

So, now the next 9 weeks pass. She is on and off the vent for various reasons. She is back on dialysis. Our dialysis nurse was our save all. The only time we felt comfortable actually going home and being home for 3 hours together. The doctors still held  high hopes the kidney would recover. A biopsy revealed that their hopes were founded. This kidney should recover. We watched and worried and hoped. Each day passed and those hopes started to fade. After the initial night that she had the breathing event, I spent every night in the hospital. Feeling like I would neglect one child for the next I struggled with the whole situation I was facing. My daughters health was literally in the balance. I would sit in the morning when the doctors would do rounds and listen. I would hear these brilliant voices discussing my child. They would talk if we do this , this will happen and if we adjust would this cause this to happen. It was like she was a puzzle that required great intelligence as well as balance. You must piece together this puzzle while you stand on a balance beam suspended in the air. That was what I saw. I continued to gain admiration for my daughters medical staff. I continued to be thankful for my family. My husband forced me to toughen up and be brave so I can take whatever may come. I would cry to him and he would cry to me and then we would say no time for crying, time for being tough. We were but our family struggled. We had two children suffering, with being distracted in school or missing school. We had one child who’s life was supposed to be getting better get worse.

 

During that 9 weeks, eventually she did lose the kidney. After everything she went through. Us watching her in a medically induced coma for so long and her being on life support caused fluid in the lungs and things were truly not looking good. Our doctors knew that they must piece together this puzzle and balance and that she would eventually be ok. After they removed the failing kidney they were able to get her back to her normal with dialysis and lots of medication in a few short weeks. ….

For more of our Journey through Kidney Transplant see Part 2