When a woman is about to give birth she wants that baby's room all set up and flawless for when she returns home with her new little person from the hospital. That's just fact, human nature whatever. Even though that baby is probably going to sleep next to her in a bassinet for a month or so. Nonetheless, there's the unfortunate but obedient father in a panic (induced by the soon to be mother) painting his unborn child's room at 3am the night before her due date.
Well that's a laughable version of myself, only this time it's not a new child it's a new kidney. Sandra, my kidney donor said it's going to be her left kidney - but my team told me it was going into my right side. So how the blazes can they nestle her left kidney nicely into my right side? Do they put it upside down? I doubt that.
Well these are the crazy, odd details I'm faced with. Probably the bigger stuff to focus on are just TOO big. For example: how will I deal with these immuno-suppressant drugs and their side effects for the rest of my life? Or heaven forbid, what if my body rejects this beautiful new kidney from this incredible selfless friend who is donating it so generously?
So... I cleaned my linen closet.
Of course I did. I also got up early this morning, the day before this blessed event of being potentially split open from below my sternum to below my belly button, unless they manage to be able to remove the kidneys laparoscopically, (I'll show you the scar later), and I ran through the laborious process of 3 loads of laundry. Really? Because 3 loads of laundry weren't going to be Ok sitting in it's basket for the 4 days I'll be gone?
And Saturday, I just pulled everything out of my linen closet and I folded each pillow case and sheet and towel I own and put them in neat little rows back in the same closet. I've lived in my house for 4 years now, and have not ever done this. So am I nesting? This non-control freak is trying to find some semblance of control? Oh who only knows.
I think I was 16 when I knew I was going to need a kidney transplant in about 30-40 years. But like every invincible youth, I felt like that was a lifetime away and hey I was feeling just fine! "Polycystic Kidney disease?" My Mom said to the pediatrician. My life has probably been different ever since, but then again seemingly not.
Regardless of my PKD, as a kid, I still played soccer and ran track and later ran a marathon in Hawaii (which after my bloodied toenails and severe knee pain I will never do again, kidneys were fine it was the rest of me!). I always walked 18 holes of golf, I contributed in renovating my old house in Newburyport swinging a sledge hammer to expose 18th century brick and pounding nails, after going broke I mowed my own 2 acre lawn in Sherborn, I have moved myself 2 dozen times then returned the favor to friends who needed a hand in return, coached my kids soccer team. skied all my life, including this past winter. So. I'm not the kidney diseased patient who was laid up, dammit. I refuse pity and have refused limitations regardless my kidneys have become the size of footballs. But alas. I have given in, because my kidneys have given out officially, now almost completely. I went from skiing White Heat at Sunday River this past February, to not being able to hold my blow dryer over my head.
But it's ok. Even though I was told by my nephrologist,
"you've been sensitized and are a going to be a pretty tough match, Aim" Greeeeaaaat I thought. out of 100 people 94 of them we cannot use. You only have a 6% chance at finding someone with out any DSA anti-bodies.
To hear the dejection in her voice I knew it wasn't going to be easy. First up, my boyfriend, Jim, came forward to be tested as a potential kidney donor but it was (ironically) an instant rejection of antibodies. Then my nephew, also Jim, was tested and he was a closer match but still not great. So in my infinite confidence in the universe, I just let it go and did my usual loud mouth thing and keep nothing to myself and people started to come forward on their own to be tested. Amazing people.
Enter Sandra Macinnis. My friend of 12 years who's a part of a group of 13 women who mostly live in Framingham, MA and who started as a group of about 6 and grew from there. Sandra and I were both the add-ons in this group, she's the tallest I'm the smallest, we love our martinis, we compete for being the loudest (in the best possible way) , we are now both divorced and we both have 10 year old daughters. But the bottom line is we both love and deeply care about each other.
Out for my birthday last June she offered to be tested - and was like "HEY! I'll give ya my kidney! Just tell me where and how to get tested" "Ok Sandy...are you sure?" I said. And she said "Absolutely!"
Well the results were back and she's not just a good candidate, she was a "perfect candidate" (I have no DSA antibodies that fight hers)...in other words a near perfect match. Then, I believe her first reaction to the doctor was "Are you FUCKING kidding me?" And, once they told her what a tough match I was gonna be, I'm sure she was like "Shit now I HAVE to do this...holy crap!" Tat was when shit got real and after a hospital change and a few life challenges and postponements we got it all straight and viola, she has signed on as a most willing party not only to save my life and keep me from the strains of dialysis but to become organ donations newest crusader.
Check out her post on Facebook yesterday. Her words are as inspiring as her gift:
After spending a great night with the friends who started the circle of friendship. I sit and reflect about the personal journey I started almost a year ago. This Tuesday my journey will come to its peak when my left kidney finds a new home within my sweet friend; Amy Brooks
I'm overwhelmed with beautiful sentiments such as "you are an amazing person, you are selfless and brave, you are giving the greatest gift , you are saving a life". My thought process was none of these, my goal was to extend the gift of time, "healthy" time to a friend in need. So that Amy can spend healthy time with her children and for her to continue to live life like she currently does with spunk, energy and boldness.
There are cliches such as everything happens for a reason, or the universal works in mysterious ways or your exactly where you need to be. Signs and fate and I can attest that all of these hold true to me. Who would have thought 12 years ago when I was introduced to this tiny spitfire blondie that in a few days we will be forever bonded . My journey began with a blood test as I could not fathom my friend having to partake dialysis or play the waiting game for a transplant. When I got that call that I was a "perfect" match I was filled with all kind of emotions, there was fear and tears and overwhelmingness. But that was the exact moment I knew this was my journey, this is where I was suppose to be, this was the universe intertwining our lives for this very purpose.
I feel like the blessed one as I have the most amazing support system wth the endless love and support from my family, my childhood friends, my college friends, my co workers and peers and of course my village. And to all the people I have met along the way who now are an intrical part of my experience. More importantly if my journey can inspire one person to consider being a living donor than I know in my heart I made the greatest decision. I recently met a Kidney donor who told me " You will never feel the way You will after April 25th that it's truly indescribable ".
I thank everyone for their positive thought and prayers.
Amy I will see you under the bright lights of our own Grey's Anatomy episode????
Such an incredible person, right?
Now, I have my ducks in a row (mostly) with home and work (I'll be off the air for at least 2 weeks), she has hers in a row (I'm sure more than I do) with her job and family etc and we are DOING THIS...tomorrow Tuesday April 25th, 2017 at Mass General Hospital, and I'm surprisingly, not terrified?!
But tonight, I was thinking I should really wash the windows.