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 Warm greetings to everyone, my name is Lola Fortier and I am the network coordinator for the Chronic Renal Insufficiency Division (CRI).
Well over a and year and half ago my son's Nephrology nurse, Dina Mac Donald mentioned that a wonderful organization called MAGIC was looking for a mom of a child with chronic kidney issues/disease to head up a new group. Dina sent me home with a huge packet of information about The MAGIC Foundation for some good bedtime reading.
My son at that time was still on the waiting list for a kidney transplant and we were going to the hospital three times and week for his dialysis treatments and all that that entails. In short our life was very hectic with his constant medical regimes, appointments, health issues, hospitalizations and minor surgeries and so I did a cursory review of the MAGIC information and put it away.
A year or so later after Dylan's successful kidney transplant a new life opened up for us. I now found I had some time for myself and feeling grateful for this new found freedom and wanting to give back to my community I re-opened the MAGIC packet and called Mary for a chat. That is how I came on board to head up the CRI network of families.
I want to share with you my son's medical background, which is quite extensive (I will spare you its entirety) and our journey through renal disease. Chronic renal health issues are multi-faceted and as with any chronic disease/syndromes we as a group can feel very isolated, lonely and confused.
My intention is to give hope to families that there is a bright light at the end of the tunnel. And for any family that is seeking answers and support they will not need to feel alone after reaching out to Magic. First, I will give you a short description of how kidney disease can affect growth in children.
: Dylan's father and I watched as my mother and my two-year-old son pulled away from the curb after dropping us off at the airport. This was the first time I would be away from my child for more that a couple of hours at a time since his birth. We were going on a much needed mini-vacation to Cabo San Lucas. Our marriage was strained and we needed to talk about some issues. As my mom pulled away and I was looking at Dylan I thought that his eyes looked a little puffy and glassy. Oh no I thought to myself I'm leaving my mom with a sick child (thinking of a cold).
Dylan was a healthy, happy, loving child who was rarely ever sick - even with the typical childhood ear infections etc. but everything changed the day we got home from Mexico. Mom was at the airport to greet us looking frantic and worried. Dylan looked puffed up like the Pillsbury Dough Boy, was lethargic and didn't even smile when he saw us. Something was terribly wrong. His pediatrician gave my mom a ridiculous diagnosis of conjunctivitis of the eyes and sent her home with eye drops. The next day we had him admitted to Children's Hospital in San Diego and our nightmare really began.
He was diagnosed after a biopsy with Nephrotic Syndrome Minimal Change and we started on the medical protocol to get his condition into remission. Nothing worked on Dylan and he became very sick and malnourished. He was put on fluid restrictions and diet restrictions and he was only two. At times he could only have 350cc's of fluid in a twenty-four hour period (that's around a cup). At his most severe restriction we had to include the fluid in his food in the total count of 350cc's. It was nearly an impossible task and more so because he couldn't understand why he wasn't able to have one of the life's basic elements …water to drink.
One day, I found him drinking water from a flower vase which was sitting on a table in the living room. After a year and a half of living life in and out of the hospital, we got him in remission by using the anti-rejection drug Neoral.
Life got a little easier for awhile but by age five he started leaking protein in his urine again and another biopsy showed a new diagnosis. He now had FSGS. They don't know if he had this disease in the first biopsy and the little piece of tissue only showed nephrotic syndrome minimal change or if minimal change progressed to FSGS.
By age six he had to have both kidneys removed because they were hurting him more that helping him and the doctors knew that he was in end stage renal failure they just didn't know how long before his kidneys totally failed. It was one of the hardest decisions I have ever had to make to ok this surgery but he actually got better as soon as he went on peritoneal dialysis.
He was on dialysis machine every night for twelve hours at home and stayed stable. Dylan went on the National Kidney Transplant List and we waited. It was also around this time his doctor's thought that he would benefit by going on growth hormone injections. He was at the 5th percentile and had not been growing well for quite sometime
March 16, 1998 Dylan's eight birthday we got a call that they thought they had a good match for him. Oh how excited and hopeful we were to finally have a kidney available, what a gift! Not so, the kidney never functioned (he didn't reject it it just didn't work) and it was removed three months later. The disappointment was extreme and I as the mother fell into a dark hole of despair.
 He went on hemo dialysis at this time and had to go to the hospital three times a week and sit hooked up to a machine for 3 hours each session. Dialysis has it's own set of complications of which I will not elaborate on in this story. The good news was Dylan was growing with the growth hormone injections and staying relatively healthy.
Because of blood transfusions due to complications from the transplant Dylan did build up anti--bodies in his system against the general population and he was now going to be very difficult to transplant. He went back on the waiting list and we waited and we waited.
Fast forward to February 10, 2003 almost six years later (with much medical history in between which I will leave out except to say he did go into cardiac arrest on Mothers Day 2000 and coded blue four times in twenty-hours. He lost some oxygen and suffered some brain injury. Dylan had to learn to walk, talk, eat etc. again but has made a phenomenal recovery). Now back to the GOOD NEWS. I got the second transplant call at 1:45 AM and from that point on our lives started to make a miraculous change. The transplant has been a success, he is disease free and we are grateful every single day. What a transformation!!!!
Many children start growing on their own quite well after transplantation and some don't. Dylan didn't and is now back on the injections, growing once again at a consistent rate. He just hit 5'1" and is fourteen.
*** A side note; we have written to his donor family but have not heard back from them as of yet. We hope in time we will be able to meet the family that lost the life of dear one. A family that had the grace and compassion in their grief to give the gift of life to us. We look forward to that day when we can hug them and tell them how much their selfless decision has impacted and changed our lives for the better.
If you need help- please contact me through The MAGIC Foundation!
Lola
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