I just finished my application to serve on the Patient Advisory Council for Transplantation (PACT) at Carolinas Medical Center. To quote the invitation to apply:
PACT allows patients and families to offer leadership and input on policies, programs, and practices dealing with care and services for the patients and family members we serve. The importance of this council creates a win-win situation for everyone involved.
This month marks 20 years since I made the first major move of my life. I left Cincinnati for Phoenix in July, 1994.
I still find it hard to fathom that it has been that long. I recently visited there and a lot of it still felt very familiar. I am quickly approaching my nine year anniversary of moving to Mooresville from Phoenix. Again, it doesn’t feel like it has been that long.
I have at least one more major move planned. At some point I want to move to the Pacific Northwest. Initially I would love to live and work in urban Seattle (Queen Anne/Downtown area), but that may be more or less a pipe dream. That would require the perfect job opportunity (one that I could walk to) as well as a major downsizing (or investment in a storage locker). I would also love to live on the Oregon Coast in the small town of Manzanita. That will most likely have to wait for retirement, which in these uncertain times may be a pipe dream as well.
Today marks the one year anniversary of my donation surgery. I thought I should take a few moments to reflect on everything that has happened since then and the lessons learned along the way. I will also discuss some if the things I would do differently or offer as advice for anyone else who may consider a similar journey.
I am finding it hard to believe that it has been a year already. As I age I am finding that time is passing too quickly for my comfort. We should all remember that our time here is but a speck in a very brief moment of time. You should treasure it and make the most of it. Okay, enough of that, it’s time to get on with it.
The First and foremost item to discuss is my health. With the exception of my little scare in the Grand Canyon, I have had no significant medical issues or complications from the surgery. I had my one year follow up appointment just over a week ago and everything came back fine. My creatinine levels continue to decrease. It was 1.46 at my six month and 1.42 last week. This is a good indication that my remaining kidney is continuing to get stronger and take up the slack.
As for my scars, they continuse to fade. Not that they will ever go completely away, not do I want them to. Here’s a photo comparing them from two weeks after surgery and today.
My recipient, Tripp, is doing well also. I saw him a few weeks ago at the National Kidney Foundation’s Kidney Walk. Though they still have not removed his dialysis port yet.
Unfortunately I have backtracked on my soda consumption. I had weened myself down to one (and sometimes none) per week. I have allowed myself to get where I am having one per day. I hope to someday reduce that again. I’ve also gained back about half the weight I had lost since I started the process. I feel I am back to a healthy weight and have also started hitting the gym.
Looking back over the past year it is impossible not to see things that I would now do differently.
I hate to admit it, but my desire to schedule my surgery to fit with the planned Grand Canyon hike is one of the things I would probably change. There are a couple of reasons why I say that.
The first one is that, had I delayed, I could have possibly started a chained donation and had that much greater an impact with my donation. That being said, things could have gone wrong with that as well. The recipient of my kidney could have had issues and not fared as well as Tripp has thus far. So I try not to second guess myself too much about this.
Another reason to have delayed surgery would have been so that I would have been in much better shape for the hike. I lost a lot of conditioning and prep time during my recovery. But, I do believe that my having that to shoot for providing good motivation during my recovery.
I do occasionally wonder if meeting my recipient was the best idea. Maybe I should have waited longer before making that decision.
Finally, one thing that I do regret is my lack of patience during the whole process. Yes, it was due to my scheduling desires. But all those involved are working for such a great cause that I should have had more patience and cut them some slack.
In closing I can’t say enough about what a personally rewarding experience this was. The support and love I received from my family and friends was overwhelming. The care I received from everyone at CMC was top notch. I would not hesitate in trusting them with my life again. Let’s just hope it doesn’t become necessary any time soon. I thank you all!
On Tuesday at 6:00 PM, I will meet my recipient. There may be media there as well. My coordinator let me know that he is nervous about meeting, but really wants to. I told her I am the same way and that I would probably be pretty emotional when I do. The current plan is for him to already be in the clinic and I will walk into meet him. Wow! I’m getting shaky and teary eyed just thinking about it as I write this. There will be no more updates until then.
First, I finally heard back from y coordinator this afternoon. As of right now, she is working on scheduling our meeting my recipient next Tuesday (10/29) evening.
The second major update is that she asked this:
What are your thoughts on the hospital’s PR dept and maybe a news station doing a story about your journey and the promotion of organ donation?
Of course I replied with an emphatic “Yes!”
No, I didn’t hear back yet. I finally broke down and sent an email to my coordinator asking for an update. I did remind her that I had left a message several weeks ago. However, I got an automated out of office reply saying that she was out yesterday, but that she would be back today. So, now I’m waiting for a reply.
It’s now been over three weeks since I left a message for my coordinator. I’m still waiting. I’m tempted to send an email, but I’m going to hold out a little longer.
This past Friday (October 11) marked two weeks since I called and left a message with my coordinator asking her to call me. Still nothing, still waiting.
Today marks four months since my donation. I’m still feeling great, even in spite of my issues with my Grand Canyon hike.
One thing is bugging me though. I spoke to my transplant coordinator on August 26th about several items. One was my desire to be very involved in assisting others and being an advocate for donation. She said she would be giving a couple of different organizations my information. I’ve not heard anything back from anyone regarding that. I also had said that I was ready to meet my recipient and she said there would be a questionnaire that we would both need to fill out before that could happen. I’ve not heard anything back from that either. So I called her again last Friday (September 27th) and left her a voice mail. I’ve still not heard back.
I’m writing this post from the plane on my way to Arizona. This is the weekend of my big hike. My penultimate quest for my recovery is to be able to hike across the Grand Canyon. Based on my training hikes, I’m feeling good about this trip. This is my first trip back to the canyon in several years, but this is, by far, the best shape I’ve been in for a canyon hike since I moved to North Carolina eight years ago.