I first heard about islet cell transplants to treat type 1 diabetes in 2000 when Dr. James Shapiro and his colleagues at the University of Alberta presented a breakthrough report describing what became known as the Edmonton protocol. They described seven consecutive participants in their research program who went without insulin injections for at least four months following one, two, or three islet infusions. The Edmonton protocol differed from the previous attempts at islet transplant in a number of ways: the islet cells were extracted from the donor pancreas with a new enzyme mixture that did not injure them; more than one procedure was performed on each patient using two or three different donors; and the Edmonton protocol used a new combination of immunosuppressive drugs.\u00a0 I remember remarking to friends that \u201cthis might really be it!\u201d \u00a0I followed the results of these patients for years, never dreaming that I, a person who had been living with type 1 diabetes for 25 years, would become an islet cell recipient myself.<\/p>\n
I was diagnosed with diabetes at the age of 24.\u00a0 It was a complete shock.\u00a0 I didn\u2019t know anyone who had diabetes.\u00a0 The only knowledge that I had of the disease was what I had learned in my training as a medical technologist.\u00a0 That knowledge was useful in understanding lab tests, but I had nothing to help me cope with the lifestyle adjustments that were necessary. \u00a0My diabetes care was difficult.\u00a0 I tried to improve it with new technologies as they became available.\u00a0 An insulin pump, a continuous glucose monitor, and the drug Symlin all helped somewhat. \u00a0I was very serious about both my diet and exercise.\u00a0 But none of these could control my blood sugars.\u00a0 I couldn\u2019t to achieve any consistency or predictability.<\/p>\n
After 25 years of battling diabetes, I began to worry that my body would lose the fight sooner rather than later.\u00a0 I was showing some retinopathy and was suffering more and more from hypoglycemia unawareness.\u00a0 My problems with diabetes were creeping deeper into my life and even into my job, which required a high level of concentration. Emotionally, I was transitioning from feeling frustrated to being completely discouraged, even hopeless.<\/p>\n
In the summer of 2007, I happened to read a story about a clinical trial involving islet cell transplants at the University of Minnesota.\u00a0 Recalling the Edmonton protocol,\u00a0 I immediately filled out the online application.\u00a0 A few days later, I received a call from the study recruiter at the University of Minnesota who asked several questions to determine if I suffered from hypoglycemia unawareness.\u00a0 At first, I wasn\u2019t even sure what she was referring to.\u00a0 It had been so long since I had felt the shaking and sweating that used to accompany my low blood sugars levels, I had all but forgotten that part of the disease.\u00a0 Next, I received forms to distribute to all of my doctors.\u00a0 These were to assess my general health and to demonstrate that my diabetes was severe enough to warrant the risks of the procedure, but that I was still healthy enough to handle the possible challenges.\u00a0 My endocrinologist was asked to state that I was doing all that I could to manage my diabetes, but achieving little success.\u00a0 A C-peptide test of zero, confirmed that I had no beta cell function.<\/p>\n
After reading the inclusion and exclusion criteria<\/a> , I felt confident that I was a good candidate for the study, but decided to increase my chances by applying to three other transplant centers as well. \u00a0They all had similar research protocols and requirements.\u00a0 In the end, they all wanted me.\u00a0 After reading all that I could find on each center, I decided to enroll in the trial at University of Minnesota (now the Schulze Diabetes Institute<\/a>), led by Dr. Bernhard Hering.<\/p>\n My mother and I drove from Ohio to Minneapolis in December through a blizzard for my screening test.\u00a0 Thinking back, it was a crazy thing to do.\u00a0 But I was determined and sure that I needed to do it.\u00a0 The screening tests went well and I was put on the transplant list.\u00a0 I felt very relieved to have met all of the qualifications to participate in this study and was so excited about the opportunity.<\/p>\n Six months later, I got a phone call.\u00a0 A pancreas was available for me. Right away my husband, Gary, and I left for Minnesota.\u00a0 During the drive I thought about the risks of immunosuppression and the possible complications I would face.\u00a0 Despite this, I still felt confident I was doing the right thing.\u00a0 I was more excited than afraid.\u00a0\u00a0 We were almost to Chicago when I got another call.\u00a0 The transplant team hadn’t been able to harvest enough islets from the donor pancreas for my transplant.<\/p>\n On the long and quiet drive home, it occurred to me that all I felt was disappointment. \u00a0There were no feelings of relief at all.<\/p>\n I got the<\/em> call on July 19, 2008. \u00a0This time, the transplant team was able to obtain the required amount of islets from the donor pancreas.\u00a0 Two days later I underwent a minor procedure to insert the donor islets into my portal vein.\u00a0 From there, the islets were carried to my liver.\u00a0 The procedure took about 90 minutes and disappointingly, I slept through all of it.\u00a0 I woke when I heard someone say that it was over.\u00a0 I began to thank everyone in the room.<\/p>\n Transplanted islets begin to function immediately, but supplemental insulin injections are given at first to allow the islets to acclimate and grow strong.\u00a0 As the islets increase in strength, insulin is gradually reduced until – ideally- it is no longer necessary.\u00a0 In my case, this required two months. The study protocol allows for up to three islet transplants if necessary, but probably due in part to my small stature, I needed only one transplant to become insulin free.<\/p>\n It was exhilarating to watch my insulin requirements and my worries decrease.\u00a0 I felt a freedom that I had forgotten existed.\u00a0 My energy level was (and still is) higher than it had been in years.\u00a0 It became a challenge to see how far I could push my limits and it seemed endless. \u00a0My lifelong enjoyment of physical activities like golf, biking, walking and kayaking were no longer interrupted or hindered by sudden events of low blood sugar.\u00a0 I didn\u2019t have to leave my workstation because I could no longer trust myself to report results accurately.\u00a0 My whole body felt strong and efficient.\u00a0 After living in terror of hypoglycemia for 25 years, I quit carrying snacks with me.\u00a0 I really didn\u2019t need to worry about going too low.\u00a0 I could even skip a snack or delay a meal.\u00a0 I no longer had to get up at night to test or eat.\u00a0 Not having to eat when I don\u2019t want to remains one of the things that I appreciate the most about my new islets.<\/p>\n The downside to this was the immunosuppression.\u00a0 Despite the fact that my new islets were working perfectly, and I was feeling so well, because of the side effects of the immunosuppressant drugs, I wasn’t at all problem-free.\u00a0 One drug caused stomach discomfort for almost a year.\u00a0 I\u2019ve been through a few infections, mouth sores, colonitis, and am currently watching my kidney function tests closely.\u00a0 I take about 30 pills every day.<\/p>\n Just after the two year anniversary of my insulin independence, my blood sugars began drifting upwards and I needed to start taking some insulin.\u00a0 I was disappointed, to say the least, and I was extremely worried that I would continue to need more and more insulin until I was back to my pre-transplant levels. \u00a0Now, when I think back to my \u201cold self,\u201d it’s painful to realize that that person is really me.\u00a0 This \u201cnew life\u201d is the reality I want.\u00a0 I don\u2019t care about the needles and strict diet.\u00a0 It\u2019s the freedom and feelings of wellness that I can\u2019t stand the thought of losing again.\u00a0 I\u2019m glad to say that my worst fears have not realized.\u00a0 I\u2019ve been very stable this last year.\u00a0 I take about 11 units of insulin a day and maintain good control.\u00a0 It has even been somewhat rewarding to find that I can successfully manage my blood sugars with insulin.\u00a0 That never seemed to be the case before.<\/p>\n Since my transplant, I’ve become much more motivated to reach out to other diabetics.\u00a0 I live in a very small town and until I attempted to form a group for a JDRF Promise meeting I didn\u2019t even realize that I don\u2019t know any adults living with type 1 diabetes.\u00a0 I write a blog<\/a> that has chronicled my transplant experience from its beginning, and this has enabled me to interact with other diabetics and their families.\u00a0 I have become active in fundraising for JDRF and as a government relations advocate. \u00a0I\u2019m also attempting to learn how to train dogs as diabetes alert dogs.\u00a0 These outlets have been very rewarding and have opened new doors. \u00a0I\u2019ve had the opportunity to connect with other islet cell recipients<\/a> on a designated Facebook page.\u00a0 This group of people has become very important to me.\u00a0 There are so few of us and it is comforting to be able to share our amazing experiences with those people who can truly understand.<\/p>\n I feel that having lived with diabetes for so long and then having the chance to live without it, has given me a unique perspective.\u00a0 It has also evoked some strong feelings about this disease and the roles that people are forced to play within its confines.\u00a0 When I meet children with diabetes and their parents, sometimes I feel as if I have somehow cheated fate and escaped from my still struggling group.\u00a0 Sometimes, I find it difficult to read the blogs written by type 1s who are dealing with the daily challenges that I remember so well.\u00a0 I want so badly for the rest of my group to join me here.<\/p>\n I understand that this is not considered to be the <\/em>cure.\u00a0 But, it sure feels like it is to me.\u00a0 I am also aware that the immunosuppression can have both short and long term consequences.\u00a0 Luckily, the short term ones, in my case, have been treatable and temporary and the long term ones are not all that different from those that I was worried about before with my fluctuating blood sugars.\u00a0 Most importantly, throughout all of this, I feel good and healthy. \u00a0I also have the sense of helping the diabetes community in moving this research forward.\u00a0 Participating in a clinical trial is truly giving of oneself.\u00a0 I’m proud of myself for this.\u00a0 It feels like the ultimate win\/win situation.\u00a0 No matter how my story ends, I will never question my decision to have tried.<\/p>\n My participation in the trial concluded in July 2011 when I reached three years post-transplant.\u00a0 I’d had 15 scheduled clinic visits to Minneapolis and I enjoyed each one.\u00a0 The doctors and nurses who cared for me were professional and compassionate.\u00a0 I realized at some point that they are a very optimistic group of people.\u00a0 They sincerely expect success from this study and for me.\u00a0 I find this to be heartwarming and motivating.<\/p>\n Recently I learned that the main islet cell transplant clinical trial, the CIT<\/a>, has transplanted the final patient to conclude this study.\u00a0 In a year, all of the data will have been collected from each of the patients.\u00a0 The data from each of the transplant centers will then be analyzed and submitted to the FDA for approval.\u00a0 Dr. Hering announced this at a Diabetes Symposium<\/a> held in Minneapolis in September.\u00a0 His hope is that in 2013, islet cell transplants will be available as a treatment option for all diabetics.\u00a0 My hope is that this news will spread hope through our diabetes community, will inspire fundraising for the possibilities that will evolve from this research, and that my trial, and others like it, will one day be viewed as having been an important step in the quest for a diabetes cure.<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" Participating in a clinical trial is truly giving of oneself. No matter how my story ends, I will never question my decision to have tried…<\/p>\n","protected":false},"author":87,"featured_media":23037,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"image","meta":{"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[1446,1435,1445],"tags":[246],"yoast_head":"\n