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.
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.
It’s definitely been a while since I posted anything, but I really didn’t have much to post recently. I successfully completed the training hike I mentioned in my previous post. Though I was really wiped out by the end of it. Still, it felt great to be out and to have accomplished that. It made me feel much more confident about completing the Grand Canyon hike.
I was on vacation a few weeks ago and during that I time I got to have dinner with Kerri and Bryce again. I had a nice discussion with them about whether or not I would like to meet my recipient. And following that discussion I thought about it some more and I have decided to do it. Regardless of how the meeting actually goes, it will give me an opportunity for closure. As for other kidney related items. I’m still doing great. I still only have a slight area of numbness and my scars are still a little tight, but nothing I can’t live with. I did call my transplant coordinator yesterday and spoke at great length. My recipient is doing great (he was actually coming yesterday for his check-up). I let her know that I would like to meet him, but not until after my Grand Canyon hike. She said we could arrange something for October. She also said that we both needed to complete a questionnaire prior to our meeting. I’m not entirely sure of the questions or the purpose of it, but I’m sure it’s to protect both our interests.
In addition to discussing that with her, I also offered to volunteer to provide whatever support or advocacy I could to others. She asked if I was interested in the Transplant Center’s patient advisory council she had mentioned previously and I said “Definitely.” She is also going to put me in touch with someone from LifeShare of the Carolinas. It will be interesting to see what, if anything, comes of that.
Today marks nine weeks post surgery. Not much new to report. I went hiking again this past Sunday as part of our training for the Grand Canyon hike in September. We did Mt. Mitchell which is the highest point in North Carolina. To simulate the Grand Canyon experience, we started at the peak (~6600 feet) and hiked down to a campground that was at 3200 feet elevation and then hiked back out. I did pretty well, I was pretty tired at the end though and I think the elevation near the top had a lot to do with it. I still need to work on my stamina and energy, but I felt accomplished having completed this hike.