Six Months Later

Here we are...six months later (just about-tomorrow is the actual anniversary). To be completely honest it seems like a lifetime ago now-a big blur of tests, tests and more tests, a little drama and finally an operation.

Obviously by my lack of posts, you can make the assumption that no news is good news. I am healthy. My 3-4 month check up revealed that my pep talks to Righty have not gone unnoticed and she is functioning at a level doctors would consider good if I had two kidneys. My cholesterol is low, my BP is on average about 15PT lower than it was before and to top it off I am healthier, having lost (in a healthy way) about 20-25lbs. My nephrologist was impressed (yes he used that word)-he said I was ahead of the game. I feel good most of the time. When I do get extra tired, it does feel like I'm a little more tired than I would have been under the same circumstances before the surgery. But that is rare so I can't complain. Next check up at the one year mark.

I do wonder about Leftie and how he is doing, or more importantly how his new owner is doing. I hope with everything in my that the surgery was a success and Leftie and his new home are getting along okay. I've thought about writing an anonymous letter (which the program could send through on my behalf) but I'm still at a loss how to get past the opening line.  Erin, who also recently donated her kidney in a non-directed donation (aka Jessi in earlier posts) wrote a letter to her recipient that I may just borrow. With permission of course. She managed to get passed the opening line (and she is doing awesome in her recovery!).

I've also been approached to work on a collaborative, volunteer project to promote and provide resources about living donation.  More to come on that one but it is something I am really excited about.

In other news, my e-friend Kerry Mortimer recently wrote about the power of social media, my donation and Erin's donation (which the Globe and Mail covered as it was #100 in the LDPE program!) on her sister's kidney website (check out the article here). It is a good look at how small social media can make our world. I remember way back during the blog talks with my friends at Foothill's someone said "the kidney community is very small". The fact is...its a very large community but I will concede that social media makes that community much more accessible and easier to connect.  There is also another great article on her site about another prospective donor and why he decided to get tested. I shared so many of his emotions as I was going through the process; I could really relate to his story.

I know I've been ignoring the blog a bit as of late. I'll have to give some thought as to what is newt for "To Make  A Choice". Until then, here's to Leftie and Righty, and the last six months!

Kidney Day

Perhaps Jessi and I will celebrate one
of these days in person

Today was a pretty Kidneyriffic day.

My kidney friend, who I haven't met but have talked a ton with online, donated her kidney to a stranger. I think I've referred to her as Jessi in this blog so we'll call her that until when/if we opt to use her real name. The important thing though is that she is doing well after surgery and everything went as expected. I can't believe how nervous I was for her.

Yesterday I woke up with a million butterflies in my stomach. At first I couldn't figure out what I was anxious about. Work? No. I mean lately its been  a circus-like environment but that wasnt it. The child? Charlie? No. I ran through the usual list of things to worry about. Everything was fine. Then I realized...I was worried/nervous/excited for Jessi. And I think a part of me was reliving the day before my surgery through her. All the thoughts, feelings, ideas and questions ran through my head...for the second time this year.

Today was no better. I was excited all over again. I was thinking about her and her recipient and how surreal things must be for them as they get suited up at the hospital and get ready for surgery. I wondered if Jessi was calm and collected or if her mind was going a mile a minute like mine had been the morning of my surgery. I wondered about her parents and boyfriend and how they felt leaving her at the hospital. I'd catch myself throughout the morning thinking about what was happening, if the surgery had started and how everyone was doing. Part of me thinks it might be a little weird pondering the fate of a stranger but at the same time I feel like I've been a part of so much of her journey thus far that this was just a natural next step. I am so glad that she made it through a-okay and that Canada has another non directed donor out there.

The next kidney moment happened today when I was poking around on Twitter (looking to see if there was a Jessi update). I noticed Alberta Health had posted a link to a story about a "transplant first" for Alberta. I opened up the link and there was Dr S and another lady from Foothills smiling in a picture talking about a chain of transplants they did back in June, kicked off by yours truly (aka as the "anonymous donor" in the story). The article is great, albeit a bit after the fact and I know Dr S. is probably thrilled it was done. I think the spirit of the article is in the right place. I do take issue with how they kept mentioning the "anonymous" factor. Non-directed living donation CAN be anonymous but I'm not convinced it has to be, especially after the fact. The anonymity label also worries me a bit if it leads to irrational hospital procedures like the lockdown "you do not exist as a patient" policy Foothills put me through. Thankfully despite her non-directed status, Jessi is not going through the same thing where she is donating-they have her in with the other renal patients being cared for my nurse and doctors who are used to treating post donation and transplant patients. And she isn't a secret patient.

I hope the press release gets the living donor program more attention. It seems like the more the word gets out there, the more people step forward to be tested. I do think that the stories featured in and on the news of people waiting for kidneys or people who have opted to donate a kidney help more than hospital written stories. The difference is definitely the people factor. When you see pictures of people involved, you can relate to them. You can put yourself in the position of their families. And you want to help them. Or in the case of donors, you look at what they've done and think "I could do that-they are no different than me".

A couple of other Kidney related things happened as well today but I'll keep those under my hat for now. There are a lot of rules and guidelines and secrets in this world of kidney disease and kidney donation and I don't want to rock the boat for anyone awaiting transplantation or donation.

Watching Time Fly

I've had a lot going on lately hence the no posting. It's also meant I delayed getting my three month blood tests done till I was virtually at the fourth fifth month mark Let's split the difference at four and a half months.

I headed up to Foothills for the test although any lab would have done. I like the Foothills lab in the South Tower though. You never have to wait more than  5 minutes-at many of the other labs I've been to even with an appointment delays occur. Foothills I can walk in and poof...I'm in the next three people seen. They are just nicer there too. I don't know if its because they are used to more living donor patients (and recipients) but you are treated much more like a person there than at the other labs.

I haven't been to Foothills since my post surgery check up[ in late June. I really had a feeling of returning to the "scene of the crime" I found it funny how smells, signs and people I saw (like lab techs) brought back all the feelings and thoughts from when I was going through the testing period. Something felt anticlimactic in these test though. I care about the results-good results mean I am healthy and Righty is doing a good job. But before the donation the same tests seemed so much more important, like so much hinged on each drop of blood they drew. It is hard to explain. It was also strange looking at "kidney Donor" on my lab forms, instead of "possible kidney donor". Different doctor ordering the tests too-one I've never met or heard of. No more Dr S. I haven't talked to him in months either-time just moves on right?

Back to the tests: they told me when they sent the forms they were optional and that a copy would go to both my family doctor and a nephrologist (the weird name on the form). I can confirm nothing has gone to my family doctor EVER despite all assurances along the way that results would be shared. I went for my annual check up this year and she knew NOTHING about my donation. She got more than she bargained for when she asked casually "So...what's happened in the last year". I let her know about the kidney donation. What surprised me a little (and honestly was kind of nice) was that there was no fuss, no blinking, no questions. She simply asked if I was okay and was the recipient. I said I'm fine and let her know why I had no idea about the recipient. She didn't even raise an eyebrow-just said good for you and asked me which side so she could put it in the computer. Her only other comment about the subject was to let me know I could put vitamin E on the scar as long as it was still pinkish purple but when it turns white, don't bother. And she gave me her fax number to increase her odds of receiving future test results.

I did receive a call from the Living Donor program. Very strange to see a 403-944-.... number flash on the call display. They let me know I had the option of meeting with the nephrologist this time around to go over results. I hope that this doesn't mean anything bad. I did get the feeling it was optional but the fact that you traditionally don't learn test results unless there is a problem has me a smidge worried. But on the same note, it is within the realm of "normal" right now not to have 100% kidney function. Righty is still growing and catching up in her duties as uni-kidney. We'll see. I booked something for the end of the month-if anything I'd like to see what they have to say overall.

Otherwise for the most part I'm feeling good. My blood pressures been on the low side lately but I'm not sure what is causing that (it isn't the kidney thing-if anything that should make it higher than normal). If I still am feeling symptoms of low blood pressure at the appointment, I'll let them know.

I'm getting close to the first year anniversary of this all starting. On the eve of my 36th birthday all I can say is "Time Flies". It really does. Epically fast. Although I know several times in the last year I'd have begged to differ.