Wednesday, August 3, 2011

The Last Official Check In

I need to get me one of these
A few weeks after donating a kidney, they normally give you one last "check up" in the form of a post op appointment around the three week mark. In some ways I am surprised they don't do more but considering how quickly and well I healed, I guess that makes sense.

The post op appointment involved a brief chat with the program coordinator (in my case Tina) who asks all the standard medical questions (pain, peeing, pooping, gas, appetite). I told her I was fine except only really being able to tolerate yogurt and oranges. She said that was fine as they are healthy although she could empathize that one would get bored of eating those quickly. She asked when I was going back to work. I let her know I already had and she seemed a little surprised but not overly.She said to make sure I keep listening to my body and rest when I need to. She said no exercise beyond the walking till 4-6 weeks post surgery. And I can give blood again in August.

Tina mentioned if I were ever interesting in knowing how Leftie's home was doing I could write a letter and they would sending it, blocking our any identifying info (shades of adoption right there!). I don't think she was aware at that time that a possible meeting amongst chain participants was being felt out. She did say she had been told by the recipients coordinator that they were so grateful and that I have impacted not just the donor but their family in so many ways. I have to admit for maybe only the second time in this process, I got teary in front of one of my medical peeps. Of course the harder you try not to get emotional, the worse it gets. Thankfully she left so I was able to regain my composure (or at least I felt like I had in my head).

I waited to see the surgeon for a post op exam. I was sure it would be Dr. S or maybe Dr. Y. If not maybe someone else in Doctorpalooza. But no. It was a complete stranger. A man I had never met or seen before in my life. He even asked who got my kidney (did not read the chart!). I have to admit that was kind of come this far, got through all the tests and then the surgery and your last touch point is with a stranger. Tina filled him in on my emergency visit the week before. He seemed indifferent. She left and he took a quick, 20 second look at my incisions. As I didn't have any questions (for him anyway) and I had no concerns, we were done. Just like that, I was essentially done with the program and they people. They will send me lab requisitions for tests in the future to make sure I am okay long term and also to collect data on donor health but that's about it.

It did seem kind of anticlimactic. "Thanks for the kidney, maybe we'll see you around". I am not sure what would have changed that feeling-probably nothing. They say this is a normal feeling to have; you spend so much time emotionally and physically gearing up for the surgery that when its over it is typical to feel a little sad or empty. IT is a big decision to donate a kidney and I think anytime you make a big decision, the aftermath is a little emotionally weird. I do think having a familiar face aside from Tina at the final appointment would have been a bit better but I understand the surgeons schedules are hectic and sometimes unpredictable. I've since learned June and July were very busy for the transplant team so I can understand it better, but at the time it felt odd to be meeting with an unknown doctor.

I might see some of them again if I opt to volunteer for the Transplant Games being held here next year. Tina said they also have "program" celebrations from time to time that I would be invited to. And I know they would contact me if they ever had questions pertaining to my experiences. There has been talk off and on about helping to promote Living Donation to the public down the road and I really hope that is something I can lend a hand to.

It surprises me how passionate I've become about this "cause" although I still cringe a little that I am one of those people who promotes something to my community. I've always believed in signing your donor card, talking to your family about your wishes etc. I never thought though I'd be actively suggesting to whomever is listening that Living Donation is something more people need to consider. It IS a very personal decision and while no one should be coerced, it is something more people should do if they can. I think sometimes we get so wrapped up in our lives, our jobs, our things that we've forgotten how to be a community, a village helping each other out. I know I had.

Two weeks. When I look back at everything now, it seems like really it was about two weeks of  inconvenience for me. Maybe a little more if you count the tests ahead of time. But really, it feels like I "lost" just two weeks of my regularly scheduled life. For some donors it may be a little more-I appreciate that. But if someone has a chance for YEARS being added to their life, much higher quality years at that, in exchange for my two weeks, that is totally, 100% worth it.

Tuesday, August 2, 2011

To Meet Or Not to Meet

I received some news on the weekend that left me a little disappointed. For the last 4-6 weeks, there was a tentative plan in place to arrange a meeting between the people involved in my kidney donation chain and potentially do a press conference. I believe, based on what the doctors thought at the time of my donation as well as a conversation I had with another potential donor in Edmonton, that this was the first "one hospital" chain done in Alberta. To have some media attention to that would have been awesome for the program and to promote awareness of living donation.

But everything was contingent on all involved in the transplants being willing to participate and somebody wasn't. I totally understand peoples desire for privacy-I support their decision 100%. I'll admit the idea of participating in a press conference was a little intimidating but I was looking forward to stepping outside of my comfort zone because of the opportunity it represented to educate people about organ donation. I also think that the doctors, nurses and others involved in the living donor program at Foothills Hospital do wonderful work and any chance to highlight that to our community is wonderful.

I was a little surprised how disappointed I was when I got the news. I was content in not knowing but I guess not as much as I thought. I still have no idea what I'd say to Leftie's new home but it was exciting to think I might be able to connect with them briefly. Of course that's not to say that there won't be an opportunity down the road. As cliche as it sounds, if its supposed to happen, it will happen.

I was recently looking at videos of donor recipient meetings. I really liked how the University of Maryland Medical Center handles these types of situations (see below). They allow for donor/recipients to meet but if someone does not want to participate, they don't and their privacy is protected. I think it would be something worth replicating in Canada as non directed donation and chains become more commonplace. I did offer this as a suggestion to one of the program people at Foothill's as they may not have considered this as an option. It may be another case of "this may not help me but it will help future participants" which I am fine with.

The whole concept of a meeting raises some interesting "what ifs" for people. If you were a donor would you want to meet your recipient? If you or your family member received a non-directed living donor kidney would you want to meet the donor? And what would you say if you did? If you didn't want to meet, what would be your reasons?

Monday, August 1, 2011

Top 10 Tips For Living Kidney Donors

It is a holiday today (for most of Canada anyway) so I thought I'd go simple and do a "Top 10"

1) Be as fit as you can pre-surgery. This sounds like a no brainer but there are a lot of people in okay shape who don't really exercise or do a variety of exercising. I found yoga really helpful before to increase flexibility-I know it was a big influence on how quickly my range of motion returned.

2) Pets. If you have dogs, arrange for someone to walk them while you are in the hospital and for the first couple of weeks you are home because your partner/immediate family will be wanting to spend time with you and not worry about Rover. If you are a cat person and live alone (I am not assuming all cat people live alone-ha) put their food supply at waist level before you go to the hospital so that when you get out and are back home you can more easily feed them

3) Prior to surgery, buy some "comfort foods" that you know you crave when you aren't feeling great. That way you will have them there when you get home. Whether it is ice cream or cheese and crackers, have it on hand. You may not end up eating it but I found my appetite was kind of off the first few weeks and if I wanted something, I really wanted it. Be careful to eat things in small doses though as your digestive system will be a bit off and you may be sensitive to things like salt. Don't worry - it gets better.

4) Buy spare slippers for the hospital as you will probably want to throw them out after. Hospital floors can be kind of gross in ways you will never see.

5) Buy PJs and/or track pants that are 1-2 sizes bigger than you normally wear. Your stomach will be bloated after and even once that starts to go down, the looser the pants the better around the incision area.

6) If you are a "plugged in" kind of person, bring your smart phone and of course a charger. Most hospitals allow them now (even if their materials say otherwise), as long as you aren't using them in an area where it isn't permitted. If you do want to take a phone call or play a game or something with sound, be mindful of who can hear and turn the volume down. If I hadn't been able to use mine to stay in touch with friends and family, I would have felt a lot worse I think.

7) Ask questions. Ask your doctors and nurse questions but also ask the internet. Read about other donor programs. Find other donors via sites like Living Donors Online  Every hospital does things differently and every patient heals differently. If you see something was done differently elsewhere or the recommended you do somethign different in your recovery feel free to ask why. A lot of programs, especially in Canada are new, so they may be open to doing something differently. At the very least in reading about other experiences, you'll have a wider knowledge of all the what ifs and ways things can go. And you will be more prepared.

8) Keep a journal. Or a blog...something. You will wish you could remember all the little details and trust me-some you won't without writing down some notes. You'll be amazed to look back and see what you were thinking, what you went through and how you got through the good and bad times

9) Learn to ask for help. More importantly learn to ask for help and not feel guilty about it. Every donor I have met, online or otherwise, has being a feisty, strong willed, determined, independent type. These people often are the worst at relying on other people (i might know a thing or two about that). The more you get over not wanting to inconvenience people, the better off you'll be. Easier said than done. But try.

10) Listen to your body. Know it well before surgery so you will understand it better after. After surgery pay close attention to every pain, gurgle and twang and what helps with your comfort. Rest when you need to. Eat when you are hungry. And if you don't know what it is trying to say and you are feeling off-drink two glasses of water and go for a little walk inside or out as that seems to settle everything down.

Sunday, July 31, 2011

Teaching & Learning

Foothill's Medical Centre is a "teaching hospital". Most hospitals are to an extent because all doctors, nurses, technicians etc learn as they go and experience new patient situations. However Foothills is the largest medical centre in southern Alberta with many programs the others in the area don't have., It is affiliated with the University of Calgary medical school and is a place where many medical professionals from other schools come to learn. I was "warned" of this a few times during the kidney donor screening and that I may, at times, be subject to things like more questions, slightly longer exams or "extra" people being in the room for tests. It was always fine with me although sometimes it can make you feel a bit like a lab rat.

I was required to go for an ultrasound the day after I went to the ER for the "Pain in Ma Belly". Apparently Ultrasounds are hard to get on weekends so unless it's a life or death situation, they get patients to come back during regular hours. My appointment was at 7:45AM and even at 7:15 when I arrived there were several people waiting. A nurse soon came and took a group of 4 or 5 of us down to the change room area where she instraucted each of us to put gowns on in different ways, depending on what we were having done. You then were to sit in your booth until called.  Everyone was called within about five minutes except for one older man and I, because we were having "more complicated" ultrasounds done.

I felt weird sitting in the curtained booth, essentially in the dark, so I tentatively opened the curtain a little and peered out. The older man was pacing nervously back and forward-he wasn't keen on staying in his booth either. He was shirtless and kept massaging his right arm which had a large scar near the shoulder. He saw me and said hello. He pointed to his arm and told me that it was sore and numb at the same time and that it was the oddest feeling. I nodded, not really sure what to say.  I think he just wanted to talk because he was nervous. SO I let him. I learned about his wife, how they had been together through over 40 years together good and bad. I learned he thought he was the luckiest man in the world because of this. I asked him if he had hurt his arm (hence the massaging and impending ultrasound). He told me he had had cancer throughout his lymph nodes on that side but that they were pretty sure they had got it all. He said with some chemo and radiation they expected him to live another 10-15 years. I guess my face had a "that's it?" look on it so he responded with "that is much better than the alternative and I'll gladly take it". He had so much optimism, so much hope. I was reminded again about time and how when you are told yours might have a sooner than expected end date, you'll do whatever you can to prolong things.

He asked me what was wrong with me (I think he may have phrased it exactly that way lol). I suddenly didn't have it in me to give a vague reason so I told him: I donated a kidney, I caught a cold, the cold made me cough, and now I'm worried I hurt the internal stitches. He asked "who did you donate your kidney to?"  "A stranger. I don't know who but I've heard they are doing well". No blinking from him. He just said "I think that's the nicest thing I've heard anyone do. You made someone really happy".

I smiled and before we could say anything else, a technician came and got me. I wished the gentleman, who was still massaging his arm, well. He nodded.

The technician was a student so she needed to have a guide in the room. She was very thorough (and also asked who got my kidney....) and a perfectionist. She mostly spoke to her instructor, other than when she needed to tell me to breath or not breath. But, at the end, she pointedly stopped to thank me for my patience-she had taken a little longer than normal. She said she had never seen someone missing a kidney, this soon after surgery and it was an extraordinary learning experience for her. She seemed absolutely thrilled and excited.

It's funny how that day at the "teaching hospital" I got to learn a few things too. I learned from that other patient that love and optimism can see you through a lot. I learned that you can be thankful for something like chemo and radiation and surgery that leaves your arm limp and numb if it gives you a chance at another 10 years with your wife. I learned that I could make a student's day just by being short a kidney.

Who knew.