Author: Sarah

July 22, 2011

It’s Been a While__9 months to be a day late and a kidney short

I’ve been thinking of blogging, but as we all know, thinking is not the same as doing. So, yesterday was the 9 month anniversary of becoming an organ donor. I have to admit it really seems like so long ago. I have been extremely tired lately, to the point of total fatigue on some days and I like to blame it on having one kidney, but reality is – I’m just getting older and it’s darn hot outside! Oh, and that lunatic kitten that started living with us in April thinks 4 am is a great time to pounce on sleeping people. Josey Wales is really a good name for her – I have a few others that are used at 4 am, but they aren’t exactly appropriate for a blog.

I can’t remember if I wrote anything about this after my Utah hiking vacation – but one of the guides at Green Valley Spa has this childlike philosophy on life and it reminded me that sometimes it’s the best way to go. This hiking guide was pretty much like a cat or monkey in his hiking progression – he almost danced up the trails and it was incredible to watch. When I asked him why he hiked the way he did (spinning, hopping, back and side-stepping) he had 2 answers – one is it had a lower impact on the environment and two, it made him happy. And carefree. Hmmm…I need that. So I tried it a bit and felt silly, but then decided, so what? What is wrong with just being silly? Thus, I’ve been seeking silly opportunities.

I was in Ohio last week and my deepest apologies to those friends I didn’t get to see. My personal time was really limited to 1.5 days, I otherwise focused on work or family. Anyway – the highlights – a couple family members and I escaped a cookout (I will not divulge names) and headed to Cake in a Cup. This is an incredible little cupcake shop close to my old stomping grounds on Central Ave, near McCord. The owners won an episode of Cupcake Wars – so I had to try them…right? Oh my. If you live in Toledo or are in the area – go. Don’t think – just go. I may have spoiled my dinner and certainly desert, but eating that chocolate peanut cupcake was fun. And delicious. Next up – a week in Mason, Ohio. It was hotter than hot and super muggy. One night a couple work girlfriends and I went to Kings Island. They told their kids and husbands it was girls’ night (but only of a certain age) and off we went. Dinner…french fries, pop (yes – I was in Ohio, grew up an Ohioan and I call it pop), and ice cream. Graeters ice cream to be exact. Graeters buckeye bash ice-cream – chocolate and peanut butter! We went on a bunch of roller coasters and I screamed my head off and laughed and giggled. Have I mentioned I really enjoyed the french fries and ice cream? I also met my friend Kirsten for lunch. Kirsten and I have known each other since kindergarten and reconnect on Facebook. We met at Cap City Diner in Columbus. And I hate to admit it, but I’m fairly sure I’d been there before, but not sober. It was one of those places where there are memories, but they wouldn’t let themselves out. I won’t say any more about the time I lived in Columbus and why I might have some memory issues from that time. But, it was Bastille Day, so Kirsten and I split some crème brulle. It was all her fault! I think I ate my way through Ohio…..

My nephew Eric returned to New Mexico with me. I was beyond embarrassed when I had a bit of an issue making it through security at the Cleveland airport. I had shopped at Crate and Barrel and totally, I mean totally forgot I bought a cheese knife and it was in my carry on. TSA didn’t like that. My nephew now considers me a criminal. And after dealing with TSA and then being turned over to the Cleveland Metro Police – I kind of feel like one. I was told to NEVER do that again. What never forget? That’s fun – right? While Eric was visiting, we ran a 5k – the Chunky Monkey – free Ben and Jerry’s at the end! And saw the last installment of Harry Potter. I’m super sad the series is over….

In summary – at 9 months, I’m searching for my inner child and found some of it in Ohio until it was cruelly snatched away by TSA (nice rhyme –huh?) , I ate a bunch of ice cream and enjoyed it immensely and am just trying to remind myself to take more time to have fun. Can someone tell my boss that? Now back to trying to get to a normal BMI before the 1 year kidney assessment.

June 9, 2011

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….

May 12, 2011

43…

That’s how old Brutus and I are today. I imagine Brutus had a stellar day, it caught a ride to Italy with a new owner. The last time overseas, it (he? She?) was forced to do a full marathon in Greece. I don’t think Lisa has anything so strenuous planned. So – sure – guess that’s a better life. Me and my un-named right kidney – we walked the dogs twice, spent an hour with our personal trainer, mowed the lawn, went to Lowe’s… Seems like the right kidney got kind of a raw deal. But the highlights – my mom and I went out to breakfast and I’m pretty sure I ate all my weight watchers points by 11 am. Had dinner this evening with mom, Kris and a bunch of friends. If you ever come visit Albuquerque, make sure we go to St. Clair Winery and Bistro – great dinner. Scrumptious desert. Great conversation. Fairly good wine (for NM!). And gobs of great wishes from family and friends on Facebook. Oh, and definitely a highlight when my little friend Belita Martinez sang happy birthday to me into my voicemail. At 4 ½ this kid is great! As I write this, I’m enjoying a little nightcap of Fulton’s Harvest Pumpkin Pie Liquor… not a bad day at all!

I will now readily admit that I had some fairly significant anxiety around my 6-month post donation check-up. Since October, I’ve had little to zero interaction with the health care system, and no interaction surrounding the actual kidney donation. However, as a living kidney donor I’m expected to have lab work and a brief physical exam to assess my current health status. The national transplant requirements are that these occur at 6 months, 1 year and 18 months post-donation. While I could have chosen to see my primary care provider in Rio Rancho (New Mexico), since I had plans to be in Denver last week – I saw the nurse practitioner (Vonnie Bagwell) whom had been my donor coordinator during the early process. I am pleased to report that there was no need for worry! My blood pressure is 120/80 – which is in the normal range for a 1-kidney human. The majority of my lab work was right on track. My creatinine remains elevated, but it’s holding steading since donating and not a concern to the transplant team. As a reminder, the things we are watching closely are my blood pressure and creatinine levels. Blood pressure, because hypertension impacts overall renal health. And creatinine because it’s a measure of kidney function.

Animal life on Buckskin Loop has settled down a bit. The most expensive free dog in the world (Gabby) was at the vet again yesterday. While she’s fully recovered from the pit bull encounter, she now has an ulcer on her cornea. Kirby goes to the vet tomorrow for his annual check-up – can’t wait to see that bill! Oh, and for those of you who don’t know – we added a new feline. I was just too worried about Kirby to be alone when I travel. So, Miss Outlaw “Josey” Wales joined us a couple weeks ago. She’s a kitten. Which for the inexperienced – means awful. She’s beyond high energy and starts at 5 am. Sort of like having a Tasmanian Devil in your bed – or so I imagine. When she’s sleeping, she’s super sweet. Kirby is slowly warming up to her (he doesn’t beat the crap out of her every time she walks by anymore), the dogs fear her. Kind of funny since she’s a twerp!

April 20, 2011

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……

April 12, 2011

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.)

April 1, 2011

a quick blog

1. Sorry for my melodrama over the need for glasses. If this is the worst thing that can happen to me “health”-wise – then I remain a very lucky person.
2. I went to Weight Watchers this morning. I had a new scheme that since I’m traveling next week and it’s really hard for me to stick to a low fat, low calorie, good for me food choices when I travel – weighing in later in the week this week, and as soon as I get home next week – I’d have more incentive to behave. Very happy to report that I’ve now lost a total of 9.6 lbs and hit my 5% goal.
3. I received a note from weight watchers that I was losing weight too fast. They recommend 1-2 pounds per week. Tough. I have momentum – I’m going to keep doing what I can.

I really need to schedule my 6-month post donation transplant physician check-up. These 6-month visits are entered into a database to track outcomes and health status of living donors. I continue to have an incredible life and much to be thankful for. I’m amazed each and every day how much incentive and drive becoming a living kidney donor has given me. I wear my “I’m a living donor” t-shirt to bed because I’ve never wanted to publicize the experience for attention. But, I’m strongly considering starting to wear it in public. A bit more weight off – and I can wear it as a dress! Hope everyone has a healthy, happy weekend.

March 28, 2011

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…..

March 16, 2011

A different perspective on “spares”

Last week, had the opportunity to chat with Harvey Mysel, founder and president of the Living Kidney Donors Network (www.lkdn.org). Harvey is a kidney recipient and now devotes his life to helping other recipients. We really had a fascinating discussion and I want to share a few points that really resonated for me.
1. People (patients) in kidney failure often don’t know their options for living donor transplant.
2. Our health system, quite simply, is not geared toward living donation and this is multi-faceted:
a. Physicians, by accepting their creed as doctors of medicine – first must do no harm. And while Lisa’s physicians’ goal was to help her, by taking a kidney for a live being (that’s me) they are actually doing me harm. I was (am) healthy – by undergoing surgery – they were risking my life and health in order to help another. That’s against their very basic principles.
b. Dialysis centers profit from people in kidney failure staying on dialysis. Their goals are not to get people OFF dialysis, but to treat them with dialysis. Educating dialysis patients about a transplant could hurt their profits.
c. Hospitals, most specifically transplant centers, certainly have incentive to help their established and even new patients receive a transplant – but only when that transplant occurs in their center. Sharing willing donors between hospitals is sharing with a competitor and potentially losing income.
d. Health insurers – it’s actually more cost effective for insurers to promote transplant. The costs of long-term dialysis and lost quality of life, productivity, poor health outcomes outweigh the costs of transplant.
This all just seems wrong! I have not hidden that my primary interest in this blog is to advocate for living donation, to eventually turn my experience into something that can help other donors or those considering donation – but good grief – people with kidney failure have some pretty steep battles to fight. One of my current frustrations is recognizing that there are thousands of people in the U.S. and the world in kidney failure. They don’t know all their options and our health care system just isn’t adequate nor incentivized to help them. I always thought being in health care was about helping people. I think we need to get back to those basics…..
Overall donation status update: I’ve mentioned in past posts that I periodically have discomfort along my incision – I don’t recall feeling any at all this week! As I’ve been losing weight, I’m noticing my tummy in that area is rather lumpy. Will have to keep watching that – I don’t want lumpy abs unless they are 6-pack! My quest to prevent diabetes and hypertension via weight loss continues. I lost another 3 pounds in my 2nd week in Weight Watchers. That earned me my first 5 lb star (and an overall total to date of -6.6 lbs). I am really pleased with that level of weight loss this week. I’m an emotional eater. I had a really crappy evening on Monday, and I didn’t turn to food. I re-directed and called a friend! For me, that’s a great success! More to come next week. In the meantime, think about what you might be able to do to help educate people on their health care options – don’t assume our system will be their advocate.

March 8, 2011

Small Successes

Today was my 1-week weigh-in at Weight Watchers. I lost 3.6 pounds! That’s almost 10% of what I want to lose. Sure, I’d love to lose 30 pounds in one-week – but I’m a real person, with a real life – thus will accept 3.6 and continue to work everyday to change my eating habits, turn up the notch on physical activity and get it done. I’ve started working with Gabby on jogging with me – that’s a bit problemmatic. She has 2 speeds – plodding and an all out sprint. However, I think she’s my best canine candidate. Brin, at 67 pounds is all muscle and I can foresee some desert face plants should I attempt that route. So, with that – I’m celebrating with pretzel sticks and looking forward to another week of trying new recipes and working hard to continue on my journey of preventing hypertension and diabetes. Anyone else have a success to share?

March 2, 2011

Another stage of the journey

In reflecting on the last year, plus or minus a couple months, I can summarize this kidney donation gig in the following bullets:
1. Pondering getting my blood drawn to be tested as a possible match for Lisa
2. Actually getting tested and waiting for results (I actually still remember being really nervous when I told Lisa what I had done…)
3. Finding out I was a match. Not a perfect match but viable
4. Full steam ahead – tests, tests, and more tests to figure out if I was healthy enough
5. Being told the transplant team wanted to find a closer match (but I was also REALLY healthy and had nice looking kidneys!) Maybe I should use that with online dating: Normal outside, and darn good looking kidney
6. The waiting game, with Lisa periodically reminding me not to give my kidney to someone else (don’t interpret this as coercion, it actually got to be a joke. I didn’t exactly have people lining up hollering pick me, pick me!)
7. Disappointment and frustration for Lisa when her closer matches fell through and the dawning that I was “it” again
8. The final cross-match and wait for the transplant team to approve my donation
9. Full steam ahead – again – this time we actually scheduled a surgery date
10. Going on Atkins to lose as much weight as I could in 3 weeks. Note – this was not required for me, I was just trying to be proactive. I figured if I lost weight before surgery, and felt sufficiently like crap after surgery that I’d lose even more and actually be close to goal. I did, however, lose 9 pounds in 2 weeks on Atkins before I started to hate barn animals with great intensity.
11. Surgery
12. Recovery
13. Realization that not only was I not at goal weight, and didn’t feel like crap long enough to lose more weight – my plan to lose weight and hit my goal had failed.
14. Reminder that family has a diabetes history and I best get my arse in gear and start losing weight

So, to summarize – it’s been about 10 months of some pretty big highs and lows. Over the past month or so that I’ve been traveling more than normal and not always exercising nor eating nutritious, weight conscious foods – I’ve gained weight. I’m up about 10 pounds from pre-surgery. Three years ago, I lost 30 pounds on Weight Watchers. I’ve regained 15. Ouch. But now, it’s time to celebrate successes and focus again on being proud of my body. So from the above summary – my corresponding successes.
1. Getting the nerve to actually be tested.
2. Having numerous and I mean numerous vials of blood drawn.
3. Losing 9 pounds in 3 weeks.
4. Not chickening out of surgery when I was TOTALLY freaked out in pre-op.
5. Waking up from surgery and not killing anyone when I simply wanted some friggen’ ice.
6. Losing 12 pounds in 1-day – you have to love IV fluids just to see it happen!
7. Walking around the hospital floor in a hospital gown, dragging my IV.
8. Going to get real coffee in hospital cafeteria – in jammies (to id myself as a patient).
9. Removing myself from vicodan within 5 days of surgery. Because I really didn’t need it. Wahoo – pain threshold!

And probably the most important one since surgery – Joining Weight Watchers again and going to my first meeting last night. If you’ve never tried to lose weight or never been to such a thing – let me tell you – going in and getting weighed where someone else sees that number is HARD. It sucks. It’s all about facing the facts. And I didn’t want to face those facts, yet know I needed to. So, today is day 2 of weight watchers. I peed enough in my first 2 days to be very confident about my next weigh in. And I’ll let you know how that goes next week….