Mighty Community

 The community stagnates without the impulse of the individual. The impulse dies away without the sympathy of the community.
William James 

Almost 3 weeks ago I announced I'd be volunteering as a crew member for the 2011 Kidney March. If however I raised enough money, I would instead opt to march. I gave myself about a week to raise at least half in order to make the choice. I was fairly certain I could raise more than $300 (required to be crew) but $2200 seemed daunting, especially when I did the math on how many people would have to donate how much money (ie 44 people @ $50, 110 people @ $20). But you don't get anywhere if you don't try right?

Being the online communicator that I am, I sent out two emails-one to family members I hoped would sponsor me and another to friends and select co-workers who had shown an active interest in my kidney donation and recovery. I shared a blog post about the Kidney March and my intentions on Facebook and Twitter.

In under a week I was over the $1000 mark. By the end of the second week (with a few more tweets and Facebook posts under my belt) I was rapidly approaching the $2000 mark. I hung out there for a bit and then it happened. I did it-I had raised $2200 in under 3 weeks. Wowsers. But it really wasn't me. It was my community. My mighty, wonderful, online village. Sure, many of the people that donated I know and see in person. But  the conversation, connection and commitment happened all online. Which I think is pretty amazing.

What is more amazing though is simply how generous and supportive so many people were. I cannot begin to express my thanks and gratitude-not just for the money that was shared so easily-but for the kind wishes and the words of encouragement. For the sharing and promoting to their friends about what I was trying to do. You really do feel like you can do anything when your "village" so to speak is standing behind you, cheering you on. I knew I would have some support from certain people-but there was so much unexpected support too. Here is what my mighty community looks like:

My very first donor was a total stranger to me. She does however have a strong connection to the kidney community and is a Kidney March participant as well. I had other "strangers" step forward and sponsor me as well. With a little digging to find out who they were, I found that most had a strong , vested interest in the Kidney Foundation because of a family member touched by kidney disease. They had learned about me through my blog and were happy to support. One stranger though had no connection-he told me he just believes in supporting people who support the communities they live in. Awesome.

I had a fabulous group of coworkers sponsor me. As I've mentioned in earlier posts, my co-workers and employer in general were extremely supportive of my decision to donate "Leftie". Many of those same people stepped forward to sponsor me in the Kidney March. But there were also surprises.  Two donations came from people I hadn't even asked and to be honest-we don't see eye to eye on much at work (that is me being polite). But I guess our hearts are in the same place. For me that was a reminder that just like a "village" our communities aren't always made up with people who support everything about us-but they come forward when they do. Also cool were the number of former co-workers who not only cheered me on when I had my surgery, but did so again with this march.

I have many friends, old, new, American, Canadian who also came forward. I had high school friends I haven't seen in 17 years donate-on the flip side I had people I just met at a #SMBYYC breakfast 10 days ago give as well. And all the wonderful people in the middle.

And finally there was my family. In laws, birth family and family-family. Aunts, an uncle, a cousin and  two moms. Oh and yes, of course my brother (he'd be perturbed by a lack of mention).

Forty people. Forty mighty people. You helped me accomplish something I wasn't entirely sure was in my reach. Your faith in me and your generosity will power me through three days of marching, and help me step every step I need to walk that 100km.

Thank you. So much.



PS...sorry to  "Sally" for wearing my emotive hat today

Less Under Pressure

My 24 hour blood pressure test is thankfully OVER. It seemed longer-maybe because due to the initial mid-day appointment time I had two days of work disruption.The highlight was a 25 people meeting this morning including several executives (some of whom wanted to know if I brought a monitor for them). The monitor went off three times, always throwing whomever was speaking off-both at the start and finish of each reading. I can only imagine what my readings those times were.

The good news however is that overall, I am doing well in the blood pressure department. This is important for two reasons: kidneys play a key role in keeping a person's blood pressure in a healthy range, and blood pressure, in turn, can affect the health of the kidneys. High blood pressure(AKA hypertension) can damage Righty and lead to chronic kidney disease. Which of course we don't want. And for the record, donors like myself are not the only ones who should make sure they know their blood pressure levels are good-one of the leading causes of kidney disease (and for that matter heart attacks and stroke) are people living with high blood pressure who aren't aware of it. Knowledge is power! Even if your resting blood pressure is low, if life (kids, work, husbands, wives, parents) has your BP high frequently throughout the day, the same damage to your body can occur-it is not just about diet and exercise.

My average daily reading was 117/74 (if I recall correctly). I had many lower readings but a few "spikes" in the later part of the day that drive up the average (totally stress). This falls within the normal range for a regular, two kidney person. I am please with the fact that I am doing well after just three months but I also know my increased exercise has probably done a fair bit to help. I'm also trying to be a little more mindful of salt intake where it can be controlled (although sometimes you have to surrender yourself to the salty snack gods). The technician did note I dip a little low blood pressure wise at night and that I should be careful when I get up from sleeping as dizziness could be an issue. I'll take low over high any day as it is a lot easier to fix!

All the other tests I'll do next week. I have to admit though I am feeling pretty confident with the blood pressure being good that everything else will be in line as well (although they all aren't connected otherwise one test would cut it!) Hopefully after the blood and urine tests, no news will be good news!

Good work Righty-good work.

Three Month Tests

One thing that has really impressed me about most Living Donor programs out there is that they now seem to recognize the need to continue to monitor the health of donors to a) make sure we are okay as individuals and b) track as many donors' health overtime so that they can better evaluate the risks of living organ donation. Each program has range of tests that they order with varying frequency and most are voluntary (although here in Canada especially, where all of our healthcare costs are free, why wouldn't you??!). In my case they do the tests at 3 months then every year there after. The results are shared both with my family doctor AND a nephrologist with the program. While I am sure my family doctor is more than competent at reviewing the results, the second set of eyes looking through "kidney" glasses is comforting-they'll spot even the slightest reading that is off.

Today (and half of tomorrow) I am doing the 24 hour blood pressure monitoring. Unlike the last time where I picked up the machine first thing in the morning, my appointment this time around was mid day meaning I'll have two half days at work of beeping and buzzing through meetings. At least this time around most people (if not everyone) knows what I did so I wont have to explain things as much or try to hide it. Which is good because I swear this machine beeps louder than the last one. It is smaller but mightier maybe?

The nurse at the clinic was great. Unlike the last one, she said showering is approved! I told her I wasn't supposed to shower last time and she rolled her eyes a bit and said "I like clean people. If people seem scared to take it off to shower then fine but something tells me you can handle getting it back on your arm. It's only velcro". Ha! As she was making sure the machine worked properly (the first one didn't) she took my BP manually. I asked her what it was and it was 112/79. Woot! For those of you not sure about what that means, it is low normal, which for me always was the normal (when I am not stressed). That is a great indicator that Righty is doing her thing and doing it well!

I have a lab form as well for blood and urine tests that will look at:

Serum Urate: measuring uric acid levels-specifically if it is high as that can cause a type of kidney stone

C-Reactive protein: I did a whole blog post on this one

Serum Homocystine: high levels of this can lead to heart attack, stroke and /or bone weakness

Micro albumin/creatinine: determines if there is presence of the albumin in urine. If there is, something is up with Righty and can be an indication of cardiovascular disease or kidney disease

Urine C&S (eGFR) serum: looks for bacteria in the urine (in case of a urinary tract infection) and also looks at overall kidney function. Your eGFR score is out of 100. A regular, healthy person has 90+. Under 60 you should be taking steps to protect your kidney(s) from more damage. Under 15 and you are on dialysis (likely) and in need of a transplant (if that is an option).

Hempglobin A1C: checks blood sugar control in people who might be pre-diabetic and also monitoring blood sugar control in patients with more elevated levels who are diabetic
Glucose Fasting: measures the amount of glucose in the blood right at the time of sample collection. It is used to detect both hyperglycemia and hypoglycemia, to help diagnose diabetes, and to monitor glucose levels in persons with diabetes.
Triglycerides/LDL/total cholesterol: screens for the risk of developing heart disease
CBC:  This is like a buffet of tests that actually test for a range of things (and one you hear them call for a lot on medical dramas, usually coupled with "chem" if they don't know what is wrong with a patient). The complete blood count or CBC test is used as a broad screening test to check for such disorders as anemia, infection, and many other diseases. It is actually a panel of tests that examines different parts of the blood.


Phew. Thankfully I just provide the blood and other outputs for the tests in one quick visit. The lab techs have their hands full. I have to say there is FAR less pressure from these tests than the first time around-even though I guess there should be more. Had I "failed" them before they just wouldn't have let me donate. If I fail them now, I'm more at risk because it could mean Righty is struggling (although she does have till 6 months or so to "normalize". Funny how that works though. I put more pressure on myself to pass to donate than I am to pass and be healthy. Maybe I am just more confident in my health now...something to think about.

Sproing!

Not an actual demonstration of what I did

Last Monday morning of August. I arrive at work, make myself a coffee and sit myself down in front of the computer. I start checking emails and at some point feel the urge to stretch. Arrms up, back arched and....SPROING!!! I feel a popping/tear/bolt of pain inside my abdomen in the area of my larger incision. Awesome.

Hours later it is still panging. I've felt around, there isnt a bump or anything (which might indicate a hernia*). I've probably just pulled something. This is the first time since the week of my kidney donation surgery that I've had constant (albeit insignificant) pain in the abdomen.It's just another reminder: I had major abdominal surgery.

My recovery has been good. I think I'm on track in terms of reintroducing activities into my life. I can do just about everything I could before the surgery, and some things better because I am now in better shape. The one area where I still feel behind though is abdominal strength. It just isn't there anymore. My right side has a little but my left side is so fail it seems to negate anything my right side attempts. There are fleeting moments of ever-so-slight improvements in strength. I dont rally notice the weekness in day to day activity but I do in exercising whether I'm doing exercises that directly target the abs or those that rely on core strenth.

Why is this? The internal incision areas themselves can take 4-8 weeks to heal. Nerves, muscles, skin and other tissues heal at different rates, so its normal to have some pain pang, numbness, feelings of pulling etc spread out over a couple months. Healing is not a straight curve, but  a series of  ups and downs in which one type of scar tissue forms, then dissolves and another type forms. While these stages occur, that new tissue is vulnerable to damage.

Skin numbness and burning are also common in a nerve healing stage. I read that nerves regenerate around your incision at the rate of about an inch a month Also not all abdominal sensations from cut nerves go away, even with time. So the bottom line is this: A surgical patient has at least two months of healing to do and it isn't uncommon to still be feeling the healing process up to 6 months after.

After a surgery like laproscopic kidney donation, a person can expect to go through these tissue healing stages for at least two months, and it takes six months to a year to reach maximal healing. So given that I am 11 weeks post surgery, I am thinking my experience is pretty darn normal. While that won't help the pain I have right now as a result of the SPROING or make me feel better when I can't plank at bootcamp. it is good to know what to expect.

*Obviously if the pain continues or gets worse I will go see a doctor-it is never a good idea to diagnose yourself, even if you are a doctor (which I'm not) or rely on Dr. Google or his partner Dr. Internet. When in doubt, call a real doctor and get checked out.

Kidneys and Culture

Recently a kidney friend of mine told me a story of being approached by an audience member after a speaking engagement she had done. He was with his significant other and seemed anxious to meet her. He introduced himself and explained that his partner was also a kidney donor (but had donated prior to his meeting her). Despite the fact that they were obviously a committed couple, he shared that had grappled with this part of her past as his religion and culture was not supportive of organ donation. The fact she was a woman made organ donation even more inappropriate. As a result, she was, in his eyes, slightly damaged goods.

Now I am as WASPy/white/generic-protestant-sort-of-Christian as they come. For me culture and religion has more impact on the foods I eat and maybe the holidays I enjoy the most, than it does on bigger life choices. Hearing this story made me realize that for some people there is a whole other set of religious and cultural influencers on the decision to donate an organ that I never had to factor in to my own decision. It also made me realize I know nothing about other cultural view points on organ donation. I don't mean so much how they do things in Dubai or  Indonesia etc. but how ethnic cultures and religions here in Canada (or the US) impact whether or not people donate their organs (living or otherwise).

In trying to look into this more I realized that for some cultures and religious groups, there isnt an easy answer. For example, I found a website that lists about 25 of the most common religions or branches of religions you'd find in North America. And guess what-they ALL officially support organ donation. Even Jehovah's Witness, who are frequently portrayed in television shows as being anti blood transfusion (which they are but transplants are officially okay, so long as the blood is drained from the organs first). Most religious groups are pretty clear that it is an "individual's choices should the circumstances make sense". Which is where I think the cultural community steps in and makes its own rules about when organ donation may not be appropriate from a cultural standpoint. In some religious communities, the decision about donation suitability is left to the discretion of the local church on a case by case basis.

In some cultures, donating an organ to someone of another race or religion is also considered taboo. On the other hand, some religions make the argument that by donating so someone outside of your religion, someone who is of your religion waiting on a list will get to move up the list as a result, and be saved sooner (so giving is a good thing). Most religions seem to agree, at least in policy, that helping others is a good thing and should extend to those outside one's own community.

Obviously no religion or culture wants to see its people be unnecessarily harmed. So as it pertains to living donation, most stress that the donation (or receipt of donation) is only permissible if it does not harm the donor (ie giving a heart or full lungs wouldn't bode well for the donor) or cause undue hardship and stop the donor from participating in a normal life (donating an arm or leg). I think its at this point that debates occur within certain communities as to what "harm" mean or what "participating in a normal life" means. I think maybe this is where the man at the beginning of this post and his culture took issue with his partners decision. In his culture, a key role for women is to have children and raise them. And there is a slightly greater risk in pregnancy to any woman who only has one kidney. Pregnancy can impact blood pressure which can harm the kidneys and its something uni-renal women are closely monitored for if they decide to have children. However millions of women do it every year around the world. I do however understand where someone could see the added risk as less than ideal, especially if he was not part of the original decision to make the donation.

Truthfully I am glad I never really had to worry about cultural influences being a part of my decision to donate. I can only imagine the pressure and judgement, deeply rooted in tradition, that some potential/actual donors may have received from their families and communities in some cases. I'm not saying its a good or bad thing-it is just a whole other set of reasons to consider. It is really interesting to read all the resources about how different religions view organ donation. What's also pretty cool is to see how much attitudes have changes in really only the last 30 years. For example, 40 years ago organ donation was not permitted by Jehovah's Witnesses in any way-and now officially they do allow for it. Similar changes in mentality have also occurred in various different Islamic cultures and most interpretations of Jewish law. Again I think it's a question of awareness....the more people learn and understand about both the spiritual, altruistic and medical processes of donation, the easier it is to support and in turn encourage more donors to come forward in that community.

In the end, the reason the gentleman at the start of this post was so anxious to meet the speaker was this: he HAD had lingering feelings that perhaps his girlfriend was damaged goods in some way because of how he was raised and what his culture /religion had influenced him to believe. But with an open mind he had listened to a complete stranger, my kidney friend, tell her own story story (and crack a few kidney jokes) and realized that it was a powerful thing his girlfriend had done. And that she was most certainly not damaged at all.