Finding Support While Waiting for a Transplant
June 20, 2018 was a glorious day. My sister, brother in law, her three kids and spouses, along with my six great nieces and nephews were in Wisconsin at a cabin in Elkhorn. I had traveled little the past few years so that I would be within a four hour radius of the University of Wisconsin at Madison should a kidney be available. We spent the day in Whitewater with friends on the lake. The kids swam and enjoyed time fishing. We were out on the boat and the kids took turns on the Jet Ski with my niece’s husband. I was in heaven cuddling with the little ones as they came out of the water cold and shaking. Bundled in dry towels we snuggled together…
When we got back to the cabin around 7:00 for a late dinner, the little ones were going down for bed. My niece happened to check her phone and excitedly told me that there was a call for me on her cell phone from Madison. She read me the number which I immediately called. The transplant center had left a message on my phone, my other niece’s phone and my sister’s home phone fifty minutes earlier. We had missed them all! Once I was connected to the caller she asked me to stay on hold with her as she needed to contact my home town police as they had been sent to my house in one last attempt to contact me. She said this was her last call and then she would have gone on to the next person on the transplant list that was a match. My transplant took place the following day, June 21st, 2018.
I have dealt with CKD for ten years and I was on the transplant list for two and a half years. The last few weeks before the transplant I was having a great deal of difficulty walking. My next appointment with my local nephrologist was scheduled for July 2, 2018. While I may not have expressed it out loud, I realized the likelihood of dialysis was going to be discussed at that doctor’s appointment. My two kidneys were only operating at 9% and it was clear that one knee and the other ankle were being greatly affected by the toxins my body was no longer able to manage. The fluid buildup was possibly moving into gout and that was my next challenge. The turning point was when I was trying to walk from my car to my great niece’s softball game. I had no business attempting that outing and I stood there thinking if this is my life now, will I be able to do it?
The last two years in particular were difficult. The anxiety of waiting, dealing with limited activity due to being anemic and working to accept my new reality were all things I struggled with. I looked for a local support group that met monthly in the far west suburbs. I wanted a support group that was specific to chronic kidney disease. I checked all the local hospitals and roamed the internet. I belonged to OTS and appreciated the newsletters and Facebook page but I wasn’t attending the meetings. Once I was registered on the transplant list, realized dialysis was a real possibility and I knew I needed more support I thought perhaps it was time to attend a meeting.
My first OTS meeting was the September luncheon a few years ago. I attended by myself and was kindly welcomed by Carolyn Kutsy one of OTS’s members. Carolyn celebrated her 31st anniversary of her kidney transplant this past year! She was so welcoming suggesting I sit with her. She shared her phone number with me at that first luncheon before we left and would call periodically to check on me. I called her too with updates, both good and bad. We have enjoyed the September anniversary celebrations together the past three years. I am so grateful for her hospitality. I would encourage each of you to reach out to a new member or someone you don’t know at the next meeting.
In an effort to make this journey work for me, I knew I needed to find more avenues of support. I have a wonderful family and a large group of supportive friends but I needed contact with people working through kidney disease, specifically. I did come across a Facebook page with over 10,000 members related to chronic kidney disease. Probably the most helpful “discovery” was the affirmation of the fact that, yes, there are lots of tired people out there. That tired feeling, lack of energy, need for a nap was indeed very normal. I was not alone. Facebook: Kidney Disease and Diet Ideas and Help.
Another resource that I relied on was Caring Bridge. This website allows you to reach out to family and friends as a way to keep them informed of your condition and changes along the way. The idea of explaining the situation over and over to each and every person was exhausting and somewhat defeating for me. I never minded if people asked questions but I didn’t want to have to retell everything all the time. This site was another source of support as people could respond on the Caring Bridge site or in some cases people chose to reach out with encouragement, prayers, or with cards, notes and emails. www.caringbridge.org
No matter where you are at in your journey keep looking for resources specific to your needs. Create your path to support, keep your eyes open for ways to learn more and extend yourself to others who might just need that welcoming hello. Carolyn Kutsy surely did that for me.