A year ago today…

I sort-of officially learned I was to become a living kidney donor. September 20, 2010 was a Monday and I was in Washington, DC – odd since that’s where I am this year too! Anyway, I was scheduled to speak about WellPoint’s obesity programs at a Capitol Hill briefing coordinated by the Blue Cross Blue Shield Association. While I’ve had the pleasure of speaking publicly on a variety of topics over the y ears, never had I been “on the Hill.” I was nervous. My mind fails me a bit, but either on the way to the Hill or on the way back, I got a call or text from Lisa indicating that “I was it….” There had been another potential donor going through the final stages of testing and at her physical had been removed from the process. Lisa had spoken to the transplant team and they were now ready to present me as the donor to the final evaluation committee. Odd game of tag – playing with a kidney! As you might recall, while I had learned I was a match back in May – I was “on hold” in case a closer match was found. I was a bundle of nerves that day due to my Hill briefing, but was then put into a spiral of emotions – scared. Happy. Terrified. Anxious. Giddy. In reflecting, it was just crazy!

The plan as of 9.20.10 was that our “case” would be presented at the end of the week, we’d know that day if approved and all systems would be go for scheduling. The day of actual approval, I remember well too….this time I was in Denver at a skill building session called Candor and Confrontation. Hmmm.. for those of you who know me, you may surmise that I failed that skill building – but really – my diplomacy skills have improved!!! So, there were numerous calls that day about how soon, which day, travel for my mom, surgery coinciding with my sister’s birthday, critter care – and all the logistical stuff I HATED. And again – more of those feelings – oh crap – this is really going to happen! I really think even though I had mentally processed everything, due to all the delays, I never thought it would actually happen. And maybe I stayed in that limbo mode until the day of surgery….
Fast forward. It’s 9.20.11; I’m back in DC. Tomorrow will be 11 months post-donation. Somebody recently asked me why I did it. And lately, I’ve been observing a lot – and feeling like as a society, we’ve lost that concept of giving. For giving’s sake. Not for personal gain or notoriety or anything self-serving – just because. I also had someone ask me – if roles were switched – would Lisa have volunteered to be your donor? I don’t know. I don’t care. It really doesn’t matter. I did it because I wanted to be sure Daniel and Sophie had their mom. I did it because I am blessed to be healthy enough that it wasn’t going to be a detriment to my health. I did it because I could. And although my OSU Buckeyes are a bit challenged this season (example of diplomacy!), Brutus seems to be cranking along in his new home.

TTFN!

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Day by day

I really mean to blog more often, but this thing called life seems to get in the way. And then there are days that I just want to sit and read or watch tv and have nothing to do with my computer once the workday is over. Anyway – I’ve been a bit bummed and during bummed out times, it’s just hard to write. As I publicly announced a few months ago, I re-joined Weight Watchers. And my first few weeks went very well. But then – I’ve been on this plateau and it’s infuriating. I’ve lost 10 pounds in something like 3 months. In 3 months, if losing 1-2 lbs per week – I should have lost 12-24 pounds. Me, being an overachieving sort feels that 24 should have been the number. But no, I’ve lost 10. And over the past few weeks – nada, zip, nothing. Of course I haven’t really been strictly following weight watchers either – but still. So, about a month ago I signed up with a personal trainer. While I get a great deal of cardio exercise with the super-mutts (Brin and Gabby) and working in the yard, etc. I decided I needed an edge. So, in steps Camila. Camila is a physical therapist, but is also working as a personal trainer while awaiting admission to the University of New Mexico for Medical School. I work with her twice a week, I come home from such sessions exhausted, sweaty, stinky and elated. But, have also shared with her my frustration over this weight loss plateau. I decided I might feel better if my body measurements have changed. Wahoo! Yes! They have! After 4 weeks of training, my body fat % is down 3%, my muscle mass up by over 2%, my resting metabolism has improved, and I’ve lost inches in my waist, chest and calves. My thighs and upper arms have increased – but those are also large muscle groups. So, while the scale seems to indicate I’ve been lazy, eating poorly and otherwise not behaving – it’s a poor judge of character. I’m getting fitter! At first Camila started me out pretty wimpy, but today she had me do pike movements on a balance ball. So – my feet/toes are balanced precariously on one of those big exercise balls – my body is extended, arms in plank or push-up position and I have to use my core to force my rear up into pike. They are hard. I always thought I couldn’t do them. I did 30 today. 🙂 So, while I still want that scale to continue to show weight improvement so that I ultimately hit a normal BMI – I’m pretty darn happy to have made some progress in other areas. All of this is an essential part of my quest to ensure I remain a successful living kidney donor.

Otherwise, I don’t have anything overwhelmingly exciting to report. No animal catastrophes. I still have to push myself to drink 80-90 oz of water per day. I do need to get back on track in choosing better food options and less super sour candy – but that seems to be a day by day, lifetime goal. I hope everyone reading this is well and safe and enjoying their summer. Till next time….

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.)

The land of what ifs…

As I’ve mentioned before, I try to live my life without regret. But sometimes, that means having to leave some “what ifs….” on the table. When donating a kidney – the what ifs are numerous – what if a family member or sibling needs a kidney in the future? What if Lisa (or any recipient) rejects quickly? What if Lisa’s HUS comes back and it kills off the kidney (lovingly referred to as Brutus…)? What if something happens during surgery? What if I get diabetes or something else and I end up needing a kidney transplant? I’ve made my decisions about the kidney donation and decided the what ifs didn’t outweigh the potential benefits. Now, I’m faced with another “what if” and I can’t make a decision. I have a lazy eye. I’ve always had it, but it wasn’t glaringly obvious (pun intended) when I was young enough to fix it through eye exercises and an eye patch. Fortunately my left eye has always compensated for the right. But today, its official – my left eye sight is finally giving in to age. It seems that as humans move past 40, their vision begins to blur and we become nearsighted. Well, my left eye is finally at the point where it can’t compensate for both. The ophthalmologist says my right eye contributes very little to my overall vision. We’re talking a damn lazy eye! Anyway – the appointment was very eye opening (another poor pun). He asked me if I go to 3-D movies. I told him I’ve never sought them out because I don’t seem to “get them.” He said because it’s impossible for me to see 3-D. In 42 years and numerous eye appointments – NOBODY has ever told me that. But it certainly confirms why I’ve always believed 3D is a waste of money and why it’s so hard for me to even try to experience it. So, back to my dilemma. He said to help with my advancing age blurry vision problem – I could get reading glasses from the drug store. But, for me, they probably wouldn’t work well. But what he REALLY recommends is I get glasses, bifocals to be exact, and plan to wear them ALWAYS. Why? Because of a what if…. If anything happened to my left eye – I will be legally blind. Not legally blond. Legally blind. I will not be able to drive, nor read, etc. My right eye just can’t do it. I really didn’t have long second thoughts about living with one kidney and those what ifs. (in addition to the above – there is the what if I want to join a gang and get shot in the abdomen, or what if I want to start playing ice hockey or tackle football?) But this what if – I’m not comfortable with. I won’t be able to use contacts – those won’t be protective. Sure, I’ve gone through 42 years and nearly 11 months without eye damage – but is the risk still worth it? I’ve always taken great comfort in being able to decline vision insurance on an annual basis – the ophthalmologist said I should reconsider that too. He was quite the smart ass.

Anyway – for those of you who thought I didn’t do a blog last week because I had gained weight – WRONG. I lost 0.6 pounds. Okay – not stellar – but still a loss and overall I’ve lost 7.2 pounds. I’ll weigh in again tomorrow. Not so confident this week…..

Risky Business…

A dear and wise friend of mine posted the following on Facebook this past week: success happens when you lose your fear of failure. And of course, I “liked” it. And then went on to think quite a bit about that today. This is a blog about kidney donation/receipt, and that quote can’t be more accurate with something as big as the decision to not only choose to donate, but also for Lisa to choose to ask people to donate. To ask people to risk their lives so she would have a better chance for hers. Sometimes you hear the concept as you can’t succeed unless you try – but I think that is too simple. How many decisions do we have that really ask us to risk? Risk our lives. Risk humiliation. Risk failure. Seems to be a glass half-empty philosophy which is why I like Shannon’s (Whetstone Mescher – another BUCKEYE!) take on the concept. In health care and finances, another way to consider risk is by weighing the benefits and harms. And when the harms outweigh benefit – the risk just may be too high. But when they are equal, or when benefits outweigh harm then the risk may be well worth it. In being a living kidney donation – clinically, medically – the potential harms may outweigh the benefits. For me, the benefits are increased incentive to live a healthy life (maintain or increase my physical activity level, lose weight, drink bunches of water), feeling a sense of accomplishment of having done something that helps another, and a renewed interest in re-prioritizing my life and the choices I make in many areas. I’m not suggesting everyone reading this should go out and become a kidney donor just to prove you like potentially risky behavior –but I do think there are times in our life where taking a risk will lead to incredible rewards in so many areas.

As part of her brilliant post – Shannon finished by writing: in 2011, I challenge you to dream big, sacrifice as needed, take the road less traveled and believe that failure is never an option and mediocrity is never acceptable.

That advice is true for so many things beyond living donation….. My risk in 2011 is one that had I not gone through this experience, I would not be sharing. But in 2011, I’m going to risk getting my heart broken again. For years, I’ve sabotaged my own dating life for one reason or the other, but in my ponderings these past few days about Shannon’s post – I really think the risk that I’ve been reluctant to take, but with the biggest potential pay off is to just seriously try dating again. And hopefully, with luck and fate and everything else behind me – 2011 will be the year where I leave a mediocre social life behind, and finally meet that guy with whom to spend the rest of my one-kidney life.

And now a quick music plug – the cd that has not made it out of my car in weeks is Zac Brown Band, and the first track is Let It Go – it’s my theme for 2011.

But you only get once chance at life to leave your mark upon it
And when a pony he comes riding by you better set your sweet ass on it

You keep your heart above your head and your eyes wide open
So this world can’t find a way to leave you cold
And know you’re not the only ship out on the ocean
Save your strength for things that you can change
Forgive the ones you can’t
You gotta let ’em go
(More lyrics: http://www.lyricsmode.com/lyrics/z/zac_brown_band/#share)

So to the Zac Brown band and my dear friend Shannon – thanks for your inspiration. Love ya!

On the fence

On the fence

As you might recall, Gloria Neal with CBS Channel 4 in Denver is working on a story about Living Kidney Donation. Once complete and aired, we hope to provide a link on this blog so people across the country can watch it. I finished up my part of the interview with Gloria on Monday. She asked me a question that I don’t think I did justice to in my response. The question was: “with my experience behind me, what advice or guidance would I give to someone considering donation, but on the fence?” I think I rather diverted my response, because my first reaction is not all that positive. In my opinion, someone “on the fence” isn’t ready to donate. And if you are going to go through living donation – e.g. surgery, removal of an organ – you need to be ready and committed to following through. So, I’d like to provide a bit more perspective to someone considering donation.
1. Be informed/educated about the entire process. Too often in our health care system, as patients we allow the system to take care of us vs. being empowered to take care of ourselves and protect ourselves. I’m not saying the system is evil – but that as a potential patient (remember this is voluntary) that your expectations are realistic. You need to ask questions. You should not assume that if you haven’t read something or been told something that it’s not in your best interest knowing. If you have a question, and there is no dumb question – ask it! As an example, while I don’t have any plans to get pregnant, I still had a question – what if – I got a wild hair and decided I did indeed want a child? Is it possible with one kidney? Would I have additional risks – other than being over 40 years old? (the answer is kidney donation does not prevent pregnancy. Women with one kidney are perfectly able to have children. The one caution –which I read about – is that there will be special attention paid to pregnancy related hypertension). You are donating a part of your body, it is your responsibility to ask questions and protect yourself, do not assume the health care system will do it for you.
2. Really, really think hard about your motivation and be sure it’s pure. Is your motivation in-line with your beliefs and value system? If you can, picture yourself in the period post donation – do you think you’ll regret your decision? What is nudging you to action? I’ve mentioned this before, but for me – I needed to know that my kidney was going to someone I could trust would do everything she could to keep it. Some things are outside of the control of the recipient and the health care system, but for me – I’ve taken care of my kidney, I only wanted to give it to someone who would do the same. It’s really important to identify your motivation and confirm it’s consistent with your beliefs. The entire process takes strength and courage and you’ll need that from within yourself.
3. Verify that you have the support of your family. While I spoke to the most important family members to get their reactions, I didn’t learn until after surgery that my donation was causing some stress and anxiety and it wasn’t likely to go away. At that point, I could do nothing. I don’t know that had I known I would have done anything different. But I will admit to anger. So, I had physical support post-donation, but not sure I had the emotional support I expected. Fortunately, as I mentioned previously, I’m stubborn. I chose a course of action, I stuck with it and I have no regrets. I can’t control others. But as a potential donor, will your family support your decision? How will you react/cope if they don’t?
4. If you know the recipient, have a discussion about what your donation means to them and what they expect from you. You both need to be on the same page. This goes back to the blog about the psychological aspects of donation and post-surgery implications. Things change post-surgery. You’ve done what you decided to do. It’s now up to the recipient. For altruistic donors, this is still an area you need to ponder. What if your recipient never wants to know you? What if you never have contact? Are you okay with your kidney being out there in the world and not knowing? I’ve aired my views on this topic and my expectations in a past blog – no need to make anyone cry again.
5. Do you have the support of your employer? Provided you aren’t independently wealthy or retired early… can you take at least 2 weeks off? Do you have the vacation time to cover your time off? Or sick time, or other kind of leave? If you do – GREAT! But if not, you need to think about the financial implications of taking time off or using short-term disability which doesn’t typically pay at 100%. And keep in mind, that while most people seem to return to desk-type jobs at about 2 weeks post-surgery – this isn’t true of everyone. Consider worse case scenarios where you might be out longer. Do you have enough money saved to cover all of your obligations?
6. What expenses will be covered by the recipient? Remember, you cannot accept money for your donation. However, your basic needs right prior to surgery (if you have to travel to the surgery location), health care costs, etc. might be covered by the recipient’s insurance. In our case – Lisa and I both have Anthem Blue Cross Blue Shield. However, other than some mistakes by the medical laboratory, all of my expenses were covered by Lisa’s policy. My travel to and from Denver, my hotel the night before surgery and all care provided to me in the hospital and leading up to surgery. Lisa was also very generous and paid for my mom and sister to get to Denver and home as well. I don’t know if her policy would have covered my expenses in the days post-surgery when I needed to stay in Denver. I stayed with friends. But, that is something to consider – while I only asked 3 transplant centers, all wanted the donor in the town of surgery for a week post-surgery.

There are probably some additional considerations I’ve missed, and I’ll add those when I think of them. For those living donors following this blog – if you have anything you’d like to add to this discussion, please let me know and I’ll be glad to put up an additional blog on this subject. Perhaps the most important aspect of this and most important consideration is how will your sacrifice benefit another? How will that make you feel? What could that decision do to change your life?

I have no regrets. I’m super pleased that Brutus is doing well with Lisa and it has given her hope. Hope for a life off dialysis. Hope for a long future with Daniel, Sophie and Mr. Bingley.