Pancreas Transplant: Brenda's Story

"Thank you Ms. Katen-Bahensky for running the highest quality institution I've ever experienced. This transplant experience has been a wonderful experience for me, truly a miracle, and I owe so much of its success to you and your excellent staff."
- Brenda, who underwent a successful pancreas transplant operation at UW Hospital and Clinics
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Brenda Juhlin of Rockford, Ill., wrote the following letter to Donna Katen-Bahensky, then President and CEO of UW Hospital and Clinics, following her pancreas transplant in June 2012.
BrendaOn June 14, 2012, I underwent a life-transforming experience at your hospital by being a recipient of a pancreas transplant by Dr. Jon Odorico. After being called up there two times prior to the 14th, I knew what to expect and most of all it was the utmost of the best care I’ve ever experienced.
Prior to these calls to come to Madison for a possible pancreas, I had done my research on transplants, success ratios, skill levels and level of care your institution provides. On Monday following Thanksgiving in 2011, I had a scheduled appointment with Nancy Radke, a Transplant Coordinator and her team including Dr. Odorico to discuss the options and if I would qualify for this surgery.


As my first inquiry was to ask about the islet program and finding out that this was not accepted by insurance and way out of my affordability, we discussed pancreas transplant and would I possibly qualify. My mother, Sally, accompanied me on this visit which was a day of information and ample opportunity to ask questions of all those I met with. As my career has had me in the healthcare administration arena, working with some of the area's finest gastroenterologists at Rockford Gastroenterology, I have study articles readily at my fingertips to gather information on the transplant successes and outcomes of various institutions and procedures.


When I went to my visit in November, I presented several articles to Dr. Odorico with my list of questions I had compiled prior to my visit so I would remember all that I needed to ask of him. Several of my physicians at the office also prepared some "physician-type" questions that I also brought with me. Dr. Odorico answered all my questions at my level of understanding and also those for me to explain to my physicians once I returned back to the office. At no time during this 6-hour appointment did anyone make me feel rushed, hurried or non-important. I can't begin to express to you how much that, to begin with, made me feel like this institution was for me and how I hoped I qualified to be in their care.


I went on the transplant list on Monday, April 30 and on May 14, I received my first call at 1:30 p.m. Here it was, I was going to head up to Madison and get my new pancreas. I knew there was a chance that Dr. Odorico could refuse to use the organ, but it was well worth traveling the hour and a half to Madison to begin this experience. As I was admitted that evening, the prep for the surgery began. At 11:30 p.m., the resident came to the room to share the news that Dr. Odorico was not going to be accepting the organ as it was related to the expiration time of the donor and he felt the organ was compromised. As disappointed as I was, I had no problem going home because not only did I know he wants the best outcomes for his patients, therefore, he will not settle for mediocrity, but now I knew what to expect the next time I'm called.


Weeks later, my second call came on Monday, June 11 around 7 a.m. With my suitcase still packed and ready for the next call to come, my mother and I headed up for a second time. This organ was to be coming from Milwaukee, therefore, they requested I come up right away and they would begin to get me ready for the procedure as soon as I arrived. I was told this was a 4 antigen match and that Dr. Odorico felt this would be a very good match for me. We arrived at the hospital, receiving the same professional welcome on B4/6 floor, everyone was glad I was back and they began the prepping process. This time they put in a PICC line in my left arm which made it feel like this time it was really going to happen. Now I was beginning to get a little nervous, "Wow, this is really going to happen now!" is what I thought. After waiting a few hours, Dr. Odorico came to the room. He explained to me that once the organ arrived, there was too much fatty infiltration and he was not going to accept the organ on my behalf nor would it be used on any other patient. I could tell he felt bad about me going through all this again and turning me away. I was OK with this, he wants only the best for his patients and that's what I wanted as well. That evening my mother and I returned back to Rockford, yet having another experience on what to expect when this does take place.


On Wednesday evening, June 13, I received call number three. The Transplant coordinator on call called me around 7 p.m. to say that Dr. Odorico had another 4 antigen match pancreas and would like to accept it on my behalf if I was willing to give them another try. This time, she stated that Dr. Odorico had spoken with the procurement surgeon and felt strongly that this pancreas would work out for me. This organ was also local and I would need to be there as soon as I could leave Rockford, as he would want to do the transplant as soon as he approved the organ once he had seen it and ran the testing that needed to be done prior to the surgery.


Arriving at UW around 11:30 p.m., the prepping for surgery process began. When arriving to my room on B4/6 a sign on my board saying "Welcome Back!" was posted. That meant so much to me as many of the people that evening were there when I was admitted previously and they remembered. Around 3 a.m. the OR staff came up to take me down to the block room where I would wait to hear from Dr. Odorico after he had examined the organ. Arriving down in the Block Room the nursing staff and anesthesiologists were so comforting. What a great group of professional, compassionate staff you have! Of course, I was a little nervous at this point, but we joked around, talked about my sorry Chicago Cubs and waited to hear from Dr. Odorico. Shortly after 3:15, Dr. Odorico came in to say it's a go! Oh my gosh, the nerves were now on alert, this is really going to happen. I remember thanking him for taking such good care of me, making sure he was well rested because I knew he had a long surgery ahead of us and he assured me he was well rested and ready to give me this organ.


Wednesday afternoon, waking up in my room of family and nurses, it was over. I was now a recipient of a new pancreas from a giving donor and family that will change my life. No longer would I have to worry about living alone and worrying if I would bottom out with low sugars and know it was happening or no longer would I have to worry about going in to DKA at a moments notice and ending up in the ICU or worse, a coma.


The first three or four days were not good for me as nausea and vomiting from the anesthesia and pain meds had me feeling terrible. This is where I really want to share with you. In all the days I was there, I did not have one bad nurse, nurse assistant or anyone that did not want the best for me. One nurse that sticks out to me most of all is Dan Edgette. ... (He) was the most compassionate nurse I've ever had the pleasure of taking care of me. I could tell that Dan truly felt bad for the things I was experiencing and wanted to try anything that would make this better for me. He truly needs to be commended for his patient care, and I hope that you also share this letter with him and his supervisor. Dan worked several days in a row and was assigned to me which was such a blessing for me. He would come in on the evenings, and come to see how I was doing and if things were getting better and if they weren't, he would try to see what we could do to make that happen.


While on the subject of the B4/6 staff, Ms. Katen-Bahensky, the level of professionalism and work ethics is commendable. From the nurses to the housekeeper that came in to clean my room, not one person every complained about their long hours, their job duties or anything of that nature. My mother stayed with me 24/7 and each time anyone would walk in the room to care for me, they would make sure they asked her if she needed anything or could do anything for her, how amazing was that? Here in our hospitals, it's almost an inconvenience for anyone to ask if your guest needs anything never mind get it for you! You should be so proud of your staff! In getting to know some of these people during my stay, you were also praised for your dedication to your staff and making sure they are important to the success of your institution.


On Thursday, June 21, I was discharged home to Rockford. I felt wonderful and ready to go home with my new organ. Your staff had done their job by educating me through the daily nurses I had and the classes offered each day. Even though it's a wealth of information, the nurses did so much educating along the way I felt confident that once I got home I could do this, and if I had questions, I could turn to Nancy Radke at any time with questions. I arrived home with no pain meds and my bag of pills that will be with me for some time now, but I knew some of them were temporary and that now all I needed to do was listen to what they told me to do and not to do and begin my healing process.


Ms. Katen-Bahensky, I’m sure you also are aware of the expertise of Nancy Radke and what a quality nurse she is and brings to your transplant program. From the first e-mail I sent to UW Hospital and Clinics as an inquiry, Nancy seems like my new friend. I can e-mail her with a question, call her with my lab values and get answers on how she feels things are going. This is so extraordinary, I commend you all.


Thank you Ms. Katen-Bahensky for running the highest quality institution I've ever experienced. This transplant experience has been a wonderful experience for me, truly a miracle and I owe so much of its success to you and your excellent staff. I look forward to my follow-up appointment with Dr. Odorico and also look forward to stopping in to say thank you to those on B4/6 for taking such good care of me and making this experience so special.