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….

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