Dear Friends and Family,
How are you?
I miss all of you so much, and deeply thank you or all the prayers and thoughts you have sent me this summer. Because, Oh man! This summer has been hell and heaven all over, and I am ready to go home! :) Have never spent this much time away from San Francisco. I'll be home in time to see the buildings of downtown all lit up for Christmas, I'll be able to work at the ice rink in the Embarcadero, be able to reclaim my entire life which I had to just stand up and leave and leave it all hanging.
Okay--brace yourself--this is a long letter. . . .
This is the first time I have documented any of the happening this summer with my hospital experience. . . I thought I should write some of it down you know, in case some news paper or radio station wanted to you know. . . interview the great me in ALLL my glory DARLING! You're like "umm. . . Milo? Get over yourself!"
But anyway, little by little I knew a lot of it would slip away so I am writing it all down.
I am pretty sure you have heard that I was in the hospital this whole summer, I went in on July 15th because I was having asthma symptoms and for a while I had been feeling lethargic and under the weather, and we never left the hospital. Within a hour my heart alerted the doctors that it wasn't the asthma that was the problem. . .
So I was immediately transported in a ambulance to Stanford's Lucile Salter Packards Childrens Medical Center here in Palo Alto and was taken to the Pediatric Intensive Care Unit. I don't remember the first week I was in the hospital very well at all because during that time I had four different surgery procedures done trying to see if my body was strong enough to handle and be put on a machine called the Thoratec or L-V.A.D. (Which stands for Left Ventricular Insufficiency device.) Which is actually two different machines, the first one was round and almost like a giant compass about 5 inches by 6 inches, that rested on my stomach and is clear so you could see my blood pumping through it. Two tubes came out of the top of it and went into my stomach, up under my rib cage and attached to the LEFT side of my heart (i.e. LEFT ventricular device) because my ventricles on my old heart were switched, I was born with it (Which I will explain later).
So anyway the compass part hooked up to a huge machine that was the size and basic shape of your average washing machine, which on the face of it had hundreds of little "star trekie" looking buttons and consoles and computer screens and colorful lights(no rainbows). Anyway for the duration of the total of three weeks that I was on the machine while waiting for my donor heart, the machine stood at the foot of my bed. It wasn't noisy or anything it was silent, the little compass part that was on my stomach ticked like the tin man's heart though and so for the first week I was on it, it got annoying, always 24/7 I could feel the vibration of the ticks in and on my stomach and could hear them. Oh and when the put in the machine? They said that it was a good thing they did it when they did because my heart would not have lasted another 8 hours without the machines help.
Anyway I was in the hospital for a total of 6 weeks all together.
I waited the shortest time in the Stanford's history for a heart, 3 weeks. We found out why I received my heart so fast. It's because during the summer especially around labor day, is when the get the most organs donated. It's because it's young men doing stupid things in the water, showing off, young people with alcohol. Depressing isn't it? That's not how my donor died though, he was only 15.
I was the fifth person in the world to be on the Thoratec.
I am the first of those five to be strong enough for me to be on Prograf instead of a drug called cyclosporin which is much heavier and nastier and has all these really awful side affects, everything from body hair growth to photosensitivity to liver infection.
The machine I was on, the Thoratec, I was amazed to hear cost 2,500 a day to keep it running and have me on it.
I am type Ab-, which means I would be compatible with any bloodtype heart, so that helped with the shortness of the weight.
I am had 6 different procedures and surgeries all together.
Luckily my heart failed quickly enough in my lifetime so that it had not had time to disease or affect any of my other organs which would have resulted in other organ transplants for me or surgeries.
At one point during my stay in the hospital the two Cardiac doctors on call, two very nice and very skilled ladies, kinda camped out in my hospital room on the couch and stayed for 23 hours straight because my heart was failing so fast that they wanted to be there the whole time if anything happened. Only once though did the doctors tell my mom that I probably wouldn't make it through the night.
August 12th, 1999 at 2:00pm, was the day I got a second chance at life. My heart was donated to me by a donor who was almost exactly my age, Male, his bloodtype ab-, identical to mine, his tissue, identical to mine, a strong athlete so it was a healthy heart, and it came from the John Muir Hospital in walnut creek. Dr. Ryghtes, the surgeon who did my heart transplant said of all the almost 40 years he had been doing surgeries at Stanford it was the most perfect and identical match he had ever seen. Seven different people made a point to tell me that when Dr. Ryghts left the Operating room after the transplant he was crying and smiling. Dr. Ryghtes later said that the transplant surgery was expected to take 6 or 7 hours, which would have consisted of removing the thoratec from my body and then doing the transplant, but that since I only had the Thoratec in for three weeks rather than the expected time of like 4 or five months, my tissue hadn't even grew around it yet so they had no trouble removing it quickly. And then since it was such a perfect match with my heart it took a lot shorter time than they thought it would. All together it took them over 3 hours shorter than they thought it would to do my transplant.
No one ever knows how much they are really loved, how much just being them in their normal live affects people, and to the extent that it affects people, until your dead. But then your dead and so you can't know. . . Well, it's like I died because I got to taste something almost nobody gets, I got to really see how many people love and care about me and would miss me, and to me that's the most wonderful and the most depressing thing I the world. All of the hundreds of cards from all the past and present kids that went through my moms preschool, all their parents, my family, our friends, everyone. All the cards, All the letters, all the many many gifts, each one was like a little bit of strength, a little bit of love and a lot of distraction from what was really happening to me and my family. Every night going to bed having to be afraid that i may never wake up. Every minute of every day having to think what would happen in a blackout? A fire? A earthquake? I am attached to a 400 lb machine that is pumping my heart, I can't exactly run to safety. The tension from that alone was unbearable, the fear of it. Every single minute alone, the emptiness suddenly would feel as if it was surrounding me, the room would feel so cold and my thoughts would be too loud. Would the machine keep my heart pumping long enough for me to get a heart? Or would it not. At any moment my heart could have given out even on the machine, though when on the machine it was less likely. It's so depressing knowing that I might never see my 16th birthday which is coming up.
Really the entire time I was in the hospital besides the very beginning, I broke records left and right at Stanford for the best and fastest recovery from a transplant.
A week out of surgery I was walking. . . slowly. :)
Two weeks i was rough housing in the PICU halls with my friend Josh(Another boy my age who had been on Thoratec and had a transplant about a year earlier) and my brothers and sisters.
3 weeks, I'm out of the hospital and staying in some apartments that the hospital owns for patients who don't have to be IN the hospital but have to stay within a certain radius of the hospital, and Jogging, going to the mall with my sister and friends.
One month anniversary of the transplant, September 12th, just happened a couple of days ago. And hey! I can wear my hat again, I actually feel like myself! :) Going up stairs is still a little of a challenge though because it uses completely different muscles than walking.
Interesting fact: My heart is no longer connected to my brain. The tools and technology needed to connect my donor heart up to my brain and the stem exists only on Star Trek. So that means that say while watching a scary movie? My heart will not speed up. On a cute date with a hot guy and I'm really nervous? My heart will not speed up.
My heart will only respond to my body, so if I start walking, running, or whatever my heart will respond to the need of more oxygen and more blood. Cool huh?
Second interesting fact: When the doctors opened me up for the transplant they said my old heart was so big and bloated, flabby and thin that it didn't even look like it was beating, just shaking. It was so big in the space it left they could have fit a adults heart. The doctors are also questioning whether I actually ever had asthma too, because the combination of my heart being so big that it had been pressing against my lungs and also my ventricles being switched and my heat being diseased so it leaked fluid in my lungs giving me asthma symptoms, but not actually asthma. I have used my asthma inhaler only once this entire summer.
As most of my close friends know, I am a really active person with all the dancing and ice skating and everything I do. I always thought all the stuff i did was a lot, and i was doing all that on a sick heart! Now? The doctors say I will have twice as much energy and up to three times as much stamina because that's what i should have had.
I do have scars because of all this that are very large and noticeable and didn't exactly heal flat, so I have two about a inch deep discolored indents where the Thoratec tubes went in. Also my scar on my chest. As if I'm not already self conscious enough, right? My mom saw them and has offered me plastic surgery (Which she can't afford, but hey who can?) because of what they look like but I am not sure about it, I mean for one, it's just one more surgery and two, look how are society abuses it. But still. . you know? I don't want to have awful scars the rest of my life. . . But I wouldn't do it -even if I did decide to- for a while. Also when you see me next probably you'll notice that my face is rounder and puffy, it's a side effect from one of the medications I'm taking, it's only temporary but i hate not being able to recognize myself.
A lot of the medications I have been on affect my memory. Like for one, It's scary not being able to remember what your own house looks like or how to get there. Things like that.
Anyway this is getting really long so I'll try and wrap it up, it just that this is the first time I have actually written anything down about it all so I am getting kinda into it.
Before I go I am going to right down some good or funny things that came out this summer. You know, So you guys aren't too depressed walking away from your computers.
1. While I was on the Thoratec, one of the times my sister, Jordan was visiting I was talking about that I'd have to be there most likely for my birthday and very likely x-mas. And you know what that quick tonged smart ass said? She had the nerve to say "Oh you shut up, Miles, with you dying here in the hospital, you'll be getting yourself so many birthday and Christmas presents, you don't even know!" LOL, she succeeded in making me laugh.
Also a good thing. . . Make a wish foundation came to me and told me that they would grant a wish for me, that i qualified for a wish. But when you think about wishes in your mind you always know right what you want. . . but when someone comes to you and says I'll grant you a wish, anything you want doesn't matter. Then you have no idea what you want, and it's only one wish too! anyway I have no idea what i would like to do with it. I have unlimited amount of time to think about it though. . . so that's cool.
Okay, I'll write some more another day if you can stand it.
Much love and hugs,
Miles