Almost a year?

How did this happen? I received my notice (a bit early) that it’s time for my 1-year post-donation check-up. Next week will actually be 10 months, but it caused me to reflect a bit…. At this time last year, I had passed all my health tests that indicated I was in perfect health to donate. But….the transplant team was still hoping for a closer match to up odds of success. Yep – 12 months ago today, I was still in limbo. Lisa, as you might recall, really liked the idea of a back-up and asked me to not give my old left kidney to anyone else. Hmmm….didn’t have any takers. It pretty much amazes me that the transplant committee didn’t approve the transplant until the end of September. I’ll write more about those feelings next month, but on October 21, 2010, Lisa became the proud owner of my old left kidney – and since it was football season –Brutus (as in Buckeye) seemed to be an appropriate name. No Ohio State jokes or slams please, some of us are bit sensitive and other than getting to celebrate a year with only my old right kidney – can’t say I’m looking forward to this year’s football season.

I’m actually looking forward to getting my labs drawn in a couple months. I’m quite fascinated at this point at how the body heals itself. I don’t have any discomfort around my incisions and seem to have all normal sensation in the area. The only adverse health issue this year has been the whole vision issue. I have 3 pairs of glasses now – I rarely wear any of them. I guess I should, I’m thinking there’s a purpose for them, they just don’t come natural to me.
Otherwise, I’ve really been enjoying these last 10 months. Well – other than the wind, heat and drought of living in the southwest. I have replaced so many plants and keep hoping others will spontaneously burst to life contrary to what every nursery center in the area tells me – dead is dead. Ugh! I’ve made some great new friends and have had the opportunity to talk to a couple of women who were also scheduled to donate. One, Michele’s to her father was successful and they both sound back to normal and enjoying life. And the other, Margot – is in limbo. The transplant team for her cousin is seeking a better match. I’ve been hot air ballooning and subsequently joined a balloon crew. No, that’s not like a gang – well not exactly… basically, when needed, I’ll help the pilot and other crew members get a balloon in the air, chase it around from the ground until it lands and get it all packed up again to do another time. In return, I periodically get to ride. Oh yeah! This past weekend, there was a little ballooning contest and about 30 or so balloons went up. It was wonderful! This morning, chicken dog (Brin) had quite a scare – a balloon was totally stalking him and trying for an open desert dog abduction. Luckily, the pilot couldn’t swoop down with protector dog Gabby in little sister protection mode. Brin typically runs about off-leash – when a balloon (or 3 like this morning) is near – he practically puts his leash back on and pulls me home. Anyway, we made it home safely but he didn’t leave my side most of the day. Let’s see – my other highlight so far was finally seeing a concert at Red Rocks. I also feel very blessed that Lisa took a wrong turn and we missed seeing YES. They need to retire. 90-year old men jamming on stage is not pretty. STYX was reasonably good – the weather (since we missed the thunderstorm during our wrong turn) was terrific. Next up – Sugarland (birthday gift from my sister) this week in Albuquerque and the Zac Brown Band at Red Rocks (Thanks Christine!) over Labor Day. This reflection makes me think that the “Life is Good” folks should design a line of t-shirts featuring kidneys doing fun stuff!

To end – one of the blood tests that is monitored for both donor and recipient is a blood creatinine lvel. This is what WebMD has to say about the test: The blood creatinine level shows how well your kidneys are working. A high creatinine level may mean your kidneys are not working properly. The amount of creatinine in the blood depends partly on the amount of muscle tissue you have; men generally have higher creatinine levels than women. The moral of this story….all the work I’ve doing with my personal trainer could be impacting one of the most important kidney function tests! Oh well…I won’t know for a few more weeks.

And now, for those of you who also think in song….a few lyrics from Rent:
Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

Something to think about…. A friend posted on Facebook that today WOULD HAVE BEEN his wife’s 46th birthday. This friend is younger than me and is a widower. I’ve been thinking about his post all day. And I know I’m blessed to be alive, to have friends and family, to have too many animals, my health, a great job and so many other things to be thankful for – but are they really measures of a year in life?

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Milestones

I am still alive with only one kidney. Okay, haven’t gotten over my drama queen issues…. And am being a smart ass. 6 months is a big deal in the organ donor business. I don’t feel much different than I did at 5 months, or 4 months, or 3 months – but just happy. And still very glad and energized by this whole process. Every day I marvel at how blessed my life is/has been and how this experience has enriched it. Those of you who know me well, are probably wondering how the heck I can say that after the past 2 weeks – but you know what? A tea bag quote kind of sums it up – the heart sees deeper than the eye.

I wrote last week about Gabby’s experience with the pit bull – she has totally rebounded, stitches removed today and is fine. I took her off her pain meds after a day – heck – if I can do it – she can do it! (just kidding – she was no longer acting like she was uncomfortable) However, as we got through that drama – my cat Sebastian (white and black guy on the critter page) was noticeably declining. I won’t bore you with the full details, but after a couple vet visits and a few days – the verdict was that ‘Bas had cancer, was end stage, and I needed to make a tough decision. I had him “put down” on Monday. I can’t recall when I’ve cried so much, was so scared, or so sad. He was not even 10 – way too young for a cat. Part of the diagnosis process was both an x-ray and ultrasound. Both vets commented on how good his kidneys looked! So proud of my boy! So Sebastian is off in kitty heaven hopefully being brushed 24/7 and keeping everyone awake with his purring. Special thanks to all who sent nice messages and words of support and to my friend Amy (Gannon) who donated in his honor to Watermelon Ranch (www.wmranch.org – a no kill shelter in NM).

And while I’m super sad about Sebastian – I was also reminded how the compassion and kindness of others is so important in our lives. I had the great fortune of working with incredible vet offices through both pet issues and it was just a great reminder of the beauty in other people. And when I stopped perceiving the situation with “my eyes” and just followed “my heart”, I was able to just let go and trust. I’m a control freak and this was not easy! But it’s also something that you learn in the donation process. Parts of it go as we want, sometimes it doesn’t (the repeated delays of moving forward…), but in the end everything works out. I know I’m stronger since the donation 6 months ago – not only physically, but also emotionally. One of the great gifts of this donation is that I know I can do anything I set my mind to. I may not always like what I have to do – but darn it – I can do it.

I believe Lisa is going to post on her 6-month medical review, so I’ll let her report on her status. My 6-month appointment is May 6th. I’ll be in Denver for a meeting, so decided to just go back to the transplant center. I am quite anxious to see how my kidney is doing……

Struggling….

I’m an emotional eater. When I’m bored, I tend to eat. When I’m sad, I tend to eat. When annoyed, frustrated – you get the picture. I also ALWAYS can find excuses to make poor food choices when I travel. I thought I had last week covered because I told EVERYONE I was on weight watchers and I’d have to behave. I think I gained 4.5 maybe 5 pounds last week. That’s just dumb. And a setback for me. So, I went to a weight watchers meeting last week, but skipped weigh in. Worked my butt off (literally) this past week and weighed in tonight. I was still up 1 pound from my last weigh in. But, with renewed resolve. After losing 4+ pounds in 4.5 days – I know I’ll have a loss next week and I know I’ll hit my 10 pound weight goal.

On the topic of kidney donation – I’d like to welcome Margot as a reader of this blog. Margot is 62, lives in Santa Fe and is donating a kidney to a cousin on May 11th! It was great to meet her via phone today and hope that you all will pray for her and wish her and her cousin luck. I don’t know a lot of details, but the recipient is a young woman who lives in Greece and this will be her 2nd kidney. She also has a sister in failure and in need of a kidney. The sister is A- – so if any of you know someone considering donation, we can certainly get folks in touch with each other. Margot will be donating at the Mayo Clinic in Rochester, MN and has promised to update me post donation. I’m so excited for her- but that seems a bit wrong for someone who is preparing to undergo surgery. I guess I just know how much this has changed my life and know she’ll have no regrets.

And onto my soap box. Aggressive dogs should be on leash or not allowed in public. Gabby (pic above) was attacked by a pit bull this past Saturday. I’m not one to hate all pit bulls. I’ve met some perfectly nice ones. But this particular dog, Amber – attacked Gabby when I first got her 1 ½ years ago. Since that time, on our weekend walks – I avoided that dog and its’ owner at all costs. They would also watch out for me and get Amber on leash or change course. The other woman that walks with Amber’s owner has told me more than once that Amber has a short fuse and should not be off leash. Well – this past Saturday, while I saw their cars – I didn’t see the women or the dogs until it was too late. Gabby was attacked again. This time – it resulted in her needing 6 stitches, and she has multiple puncture wounds on her back legs and thighs. Brin was bit as well – but one bite and he just removed himself from the melee (so thankful for that!). Amber was euthanized. This didn’t have to happen. The owner knew the dog had aggressive issues – she had attacked her other dog last week – yet she still let her run off leash. When I called after leaving Gabby in the incredibly kind and capable hands of my vet office – my intent was to plead with the owner to start leashing and possibly muzzling Amber. I did not ask her to euthanize. It really breaks my heart because this could have been prevented. So if you have a dog that has aggressive tendencies or know someone who does – please encourage them to be responsible owners. Off box. (and epilogue – Gabby is doing well – she’s back to terrorizing Brin and dog toys that don’t have stuffing, but has decided she needs to sleep with her head on my pillow while in recovery.)

Gifts

It’s Christmas evening, and after a very enjoyable day – I found myself pondering what my favorite gift had been this year. My day started with an early (and rather chilly) walk with Brin and Gabby. And I’m certainly blessed and thankful for the gifts that come with having pets (Bas and Kirby too!). After that walk, my friend Tim and I went over to Placitas to check out a hiking trail there. Another gift – the ability to move my legs, observe and enjoy the great outdoors with good conversation. Back home, and I rounded up Brin and Gabs and we headed north to my sister Kris’s. She was working today, so I took my dogs, her dogs, and her neighbor’s dog for a walk. I’m not sure why, but at my house Gabby needs to be on a leash – up there – she runs wild, but always circles back. Anyway, the dogs (all 5 of them) were acting like puppies today – the gift of joy and amusement from watching the dogs cavort! Kris and I then met up at our friend Deborah’s house for dinner and we exchanged gifts both at Deborah’s and back at Kris’s. I received many wonderful things from my friends and family and won’t bore you with the details – but is it wrong to be super excited about 3 pairs of smartwool socks? And of course the pictures of my nephews are super special! But in really pushing myself, while I LOVE everything I received today – it struck me that the gift with most meaning this year is life. And I think I’m finally getting (and yes, for being brilliant it sometimes takes me a while to catch on to the simple things….) what this kidney donation means to Lisa, her friends and family. Last year at this time, Lisa was grasping for life, something most of us take for granted. Many of us have other friends or family members who are sick or who have battled cancer or some other chronic illness; and most of us have suffered loss of a loved one. And I’m sure you wondered if there is anything you could do/could have done for that loved one – but most times we can’t do anything but be supportive, considerate and kind. I may have gone a bit beyond that this year – but am happy to say that Lisa is alive and I’m alive. And, if you are reading this – you my friend – are also alive. And that, I believe is the greatest gift we have each and every day. And on this Christmas night 2010 – it is that for which I am most thankful.

I subscribe to a daily email from gratefulness.org – one of the quotes received this past week: Take care of yourself, you never know when the world will need you. (Rabbi Hillel). As we all reflect on yet another holiday season, I think it’s important to realize that we are all needed in different ways….

I hope that everyone is having wonderful holidays in 2010. And I’m looking forward to a spectacular 2011!

On Luck, Loss, Love and God

When I think back on the last year, it may sound strange but I feel lucky.  I would of course have preferred that the HUS and the kidney failure never happened, and I do find myself looking at pregnant women and being incredibly jealous that for most of them, everything will go totally normally and they will be fine.  But for me, it could have been so much worse.

For one thing, I could not be here, and Kate and Allan (my brother and SIL) could be back in the diaper changing business.  For another, I had, and continue to have, an incredible support network and medical friends who were looking out for me from the beginning and literally canvassed the world for suggestions on how to help me through this.  I have AB+ blood, which means I am a universal acceptor and opened up the whole world of possible donors for me, as well as made it easier to find the liters of plasma I received in exchange for my own.  I have an extraordinary group of friends and family who were there to support me as a single parent who, for a long time, could not take care of her children on her own.  I have many many friends and family who were willing to be tested to donate a kidney and of course found Sarah and Brutus who actually went through with it.  I have had the resources to get the help I need and know what questions to ask and to make sure that I have a great medical team doing all the right things.  And of course, I have the best children ever.

Now, I know most parents think their children are the best, and maybe I am biased, but those who know Daniel and Sophie know this to be true.  I have been truly blessed with the most easygoing, happy, beautiful, loving, funny, sweet, on schedule, best sleeping children ever.  I don’t know if I believe in god, and will talk about that more, but if there is a god, I figure having children who are so easy and wonderful was my trade off for having to go through all of this. 

I have thought a bit about god as all this unfolded, mostly because so many people were, and continue to pray for me.  I don’t know if it helped, but I appreciate the prayers and thoughts more than I can say. Even if there is no god, the positive energy and the knowledge that so many people are pulling for me is humbling and heartwarming.  I do believe we are put on this earth to learn certain lessons.  I have wondered all my life what I was here to learn, and now after this episode I think it might be to learn to accept help from others.  My typical MO is that I can do it all myself.  I have lived my life strong, independent, and always been able to take care of what needed to be done.  This time I needed help.  It was hard, really hard, both to need help and to accept it. I hated this more than anything else I have gone through.  I am still not good at asking for help or accepting it, but so many of you have helped me and I think not only am I a better person for having gone through this but I think my children will grow up being raised by a village and will be better people as well.

The reality seems to be that most of life is pretty hard.  I have one friend who has recently lost her father after a long battle with Alzheimer’s, another who just put her father into hospice, a third whose wife is battling a horrible debilitating disease and he has to watch her getting worse day by day, and a fourth who is far too young to be treated for rectal cancer with twelve rounds of chemo.  How do we survive these things? Where do we find the strength?  Part of the answer is the support and love of family and friends.  The messages, cards, prayers, and yes presents (J) mean so much.  Watching my babies grow and change every day is worth everything that I have gone through.  The other, for me at least, is that we have no choice.  You just take it day by day and get through one thing at a time, looking for the small victories and trying not to think too much about what might be. 

For me, right now, things are good.  I feel good, my creatinine and Brutus seem to be stable.  The stent is out so my bladder feels SO much better, and if all goes well, the last remnant of the past year, my dialysis catheter, will be pulled at the end of the month.  Hopefully I can continue to wean down on the prednisone.  We are still monitoring closely for the recurrence of the HUS – I will probably get my labs checked weekly for the next six months.  I am in Arizona now for my first trip since my return to work (note: United Airlines is not part of what is good in the world, at least not today) and I have actually started exercising again.  Thank you so much to all of you who have been there for me and who have helped me and my family.  I would like to send out love and prayers to those of you who are facing your own challenges right now – I hope you can find some comfort in all of those who are there for you and please be willing to ask for help.

Love and Support

I annnounced this blog on Facebook last night, and I’m simply overwhelmed with the messages of support for both Lisa and I. I’m kind of slow in getting this blog started and have lots of ideas for improvement, but not all the computer savvy – so bear with me!  Lisa will be adding stuff as well – but she failed to participate in my stimulating training session today – so she’s lagging. 

Now then, to recap the journey to bring everyone up to date.   The characters:

Sarah: that’s me!  The donor (see my page for more fascinating info.)

Lisa: she’s my boss; and the recipient, and mother of Daniel and Sophie

Daniel:  Twin #1; red-head, fairly troublesome at 9 months and counting

Sophie:  Twin #2; reddish-hair; very contemplative, lets Daniel try everything first (she’s a smart girl!)

Bingley, Brin, Gabby, Sebastian and Kirby – minor characters, all with 4 legs; the last 4 just happen to reside with me in New Mexico.

I’ll leave the details on why Lisa needs a kidney and her decision to choose to seek a live donor for her to share.   I decided years ago that the direct care of other humans route (i.e. becoming a nurse, doctor, other health professional) was noble, but not for me.  I’m not much for dealing with others’ bodily fluids unless its consensual between both parties – and the stories about puking, etc – nah….  I went the business route.  However, other than some early jobs working in fast food and a carpet store – every employer since has been health care.  I knew early on that improving the quality of care and access to care were my primary interests.  I’ve been blessed with some pretty darn good jobs – at NCQA we were responsible for improving health care (indirectly as a watchdog) at the national level and now at WellPoint my job is focused on improving quality of care for about 34 million folks.   But, I seemed to be missing that direct impact on 1 life or 2 or 3.  Always big picture…   There are periodically stories on TODAY (or other similar program) or in the newspaper about how some absolutely excellent person – adult or child really needs some sort of transplant – and they always caught my interest.  But not enough to move me to action.  I always thought – how sad (if things weren’t looking good), or how incredible (if they beat the odds…), but without a tie to that person, I just never thought I could donate a body part, bone marrow, whatever…  Sure, I’m a donor when I become a cadeavor, but in all honesty – I don’t even donate blood.  My veins suck!

But then, someone I know had a need.  Someone who just had two babies, who has a youngish dog, and had chosen to be a single mom – someone I respect.  I won’t claim that we are best friends.  Lisa is my boss (and for those past bosses reading this – yes – of course had you asked you could have had the kidney) – a colleague, a mentor, a friend.  But most of all someone who really wants to be a mom and that was being threatened.  I’m actually quite envious of Lisa – not the kidney failure part – but having the guts to decide she wants kids AND a career and societal perceptions aside – she went for it.  Unfortunately, dreams don’t always go as we plan and earlier this year Lisa announced she was in kidney failure, on dialysis 3x per week and needs a transplant.

I’m getting kind of wordy for the evening (gotta love that red wine!), but that pretty much summarizes my early thought process about why I started considering being tested as a donor.  I’ll share more about that early decision process tomorrow!