Finding Support While Waiting for a Transplant
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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.

 

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Jaime Scholl
OTS Receives Award From HSN Cares

OTS Recognized on National TV on April 26

 Board President Carol Olash

Board President Carol Olash

HSN Cares, the philanthropic arm of the Home Shopping Network (HSN), is excited to announce that Organ Transplant Support, Inc., will receive an award of $1,000 as part of the annual $1,000 a day give-away campaign.  

HSN Cares selected Organ Transplant Support from a pool of hundreds of entries.  The entry from OTS was submitted by OTS President, Carol Olash.  Asked to submit a charity she is passionate about, Olash stated: 

“I was a very sick mother of an eight-year old son and I needed a heart transplant.  When I was introduced to Organ Transplant Support they answered all my questions and reassured me.  It has been 15 years since I received my new heart and I have found a wonderful group of transplant friends through OTS.”

In addition to receiving a check for $1,000 from HSN Cares, Organ Transplant Support will be recognized on HSN television on four different times during April 26, 2018.   HSN will announce Organ Transplant Support at these times on April 26:  1:00am, 6:00am, 1:00pm and 8:00pm, CST.  

Organ Transplant Support, Inc. sincerely thanks HSN Cares for this special recognition and award.  

Carol Olash
Chicago Organ Summit
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On March 8, the Gift of Hope Organ and Tissue Donor Network, local and state government officials and Chicago’s top experts from area transplant centers and hospitals came together to honor organ donors and discuss important issues and advancements made regarding organ donation in Chicago. Bill Kurtis, former CBS news anchor, served as the emcee for the Chicago Organ Summit.  Representatives from Chicago’s diverse transplant community, including all the transplant centers, UNOS, kidney and liver foundations, and Organ Transplant Support, Inc., also attended this summit.

The event kicked off with a special message from Chicago’s mayor, Rahm Emmanuel, who encouraged all Chicagoans to support organ and tissue donation. Illinois Secretary of State, Jesse White, presented on the new Drive for Life law, which went into effect January 1, 2018 and allows 16- and 17-year-olds to now join the organ and tissue donor registry in Illinois.

At the 2017 Chicago Organ Summit, the transplant community made the collective commitment to transplant 2,000 organs a year by 2020.  Gift of Hope CEO Kevin Cmunt reported that there were a total of 1,273 total transplants from deceased organs performed in Illinois in 2017, and this number represents an increase of 28% in transplants during the last two years.  While the total number of transplants performed increased in 2017, the number of living donor transplants decreased slightly in the last year.   The focus of the 2018 Chicago Organ Summit was on living donation, and ways to increase these numbers.  Chicago Police Superintendent, Eddie Johnson underwent a very public kidney transplant in the fall of 2017. His son was his living donor. Johnson was joined on stage by the Chief of Police from the Toronto Police Department, Mark Saunders. Saunders also underwent a kidney transplant three months ago. His wife was his living donor. After sharing their parallel living donation stories, Johnson and Saunders encouraged everyone to support organ donation either by becoming a living donor or registering to become a donor.

Leaders from all seven transplant centers in Chicago participated in a panel discussion about living donation, which was moderated by Bill Kurtis. Discussion focused on improving legislation to help make living donation more accessible, increasing public awareness for living donation and the social and medical barriers currently associated with living donation.

A second panel discussion featuring community hospitals, focused on the role community hospitals play in the organ donation process. The conversation covered how these hospitals honor their diverse donor community and the barriers and challenges around donation and the resources needed to care for donor families. 

Kevin Cmunt concluded the summit by reminding everyone that there are currently over 4,600 people on the waiting list in Illinois for a life-saving organ.   The leaders of this summit want Chicago to become a national leader in the number of both deceased and living organs that are transplanted.   They are all working together to reach the goal of 2,000 organ transplants per year by 2020.

Carol Olash