I have been diabetic for almost 25 years and having been diagnosed at the tiny age of just 4 years old, I don't fully remember when my family - who were shaken to the very core by the diagnosis - were first told about it. What I do remember is confidently telling people that diabetes was going to be cured in the next 5 years. I was 12 at the time. I am now 28. Many things have changed in my life since then and with both the benefit and burden of wisdom, there also came a point where I had to accept that ten years had passed since my cocky assertions as a 12 year old and diabetes still hadn't been cured. Maybe it never would. It was at the age of about 22 that it really began to sink in that this cure may be nothing more than a pipe dream and that the cure' that I had spouted about so self-assuredly at the age of 12, may not come in my life time. If ever.
Like many other people with the condition, I have always been aware that there is a great deal of research going on 'out there' all the time. We don't always know where, when and what about, but we know they exist. We hear talk about these projects in the newsletters we receive, the charity fundraising letters we open asking us for money and on the websites we scan. But it can feel as though we rarely see their outcomes - even if the evidence is right there in front of us, in the form of an insulin pump, slow acting insulin or blood glucose meters.
So when I recently signed up to a Diabetes Wellness Day and found out that one of the speakers was the recipient of a Pancreatic Islet Cell Transplant procedure and she was coming along to tell her story, the 12 year old inside of me started to surface, albeit cautiously and with a hint of scepticism. Last time I heard this research was going on but still not effective enough to warrant the cost, and that most people went back onto insulin with unstable sugars within months - if not weeks -of the procedure. This must mean there is good news on the horizon.
Pancreatic Islet Cell Transplantation is the process of removing healthy cells (known as the Islets of Langerhans believe it or not!) from a donor and implanting them into the liver of diabetic patients. These cells will then begin to produce insulin according to the needs of the donor. For many years this has been and still is, one of the most promising avenues being traversed in search of a cure. But this conference was the first time I had had the opportunity to meet anyone who had actually been through it and could talk about it.
I don't want to ramble on for too much longer, but to give you an idea of where Rae came from, I need to tell you a bit about her first. Rae was diagnosed with Type 1 diabetes at the age of 35, frustratingly close to the upper limit of when a person can be diagnosed with the disease. She was a healthy, fit woman with a high-powered job and fast-paced life. She had to adjust to the disease just as we have all had to, but being someone who already ate well and as a keen runner who exercised regulalry, she had a bit of a head start in incorporating some of the aspects which all diabetics need to be aware of, and the first 10 years after diagnosis passed without great incident.
But after around 10 years, Rae began to show signs of severe diabetic complications, including Retinopahty (death of the blood vessels in the eyes), Gastroparesis (spasming of the stomach causing extended periods of sickness) which in Rae's case led to numerous hospitalisations, a worryingly close call with a foot ulcer which narrowly avoided becoming an amputation and severe hypo unawareness leading to multiple and increasing episodes of hospitalisation. Rae eventually lost her driving license (which I am glad to say she got back!) and had to leave her job.
After the complications continued to worsen and the hospitalisations became more frequent, Rae was eventually told she would be a suitable candidate for a pancreatic islet transplant therapy trial taking place at Churchill Hospital in Oxford. Rae had to go through a rigorous selection procedure and had to wait a long time for the eventual donor to be found. Despite almost getting the procedure and missing out at last minute. Rae remained on the waiting list and eventually was called in for her first transplant. In total Rae had two transplant operations a few months apart.
I don't want to write too much more here because I think it is really important that you hear as much of the story from Rae as possible. But when I met Rae in March, she was insulin free and had been for several months. Her blood sugars were "better than her Doctors" in his own words, and she had suffered no hypos or hypers since the completion of her second transplant.
Rae's story has stayed with me in vivid detail since I met her and I can assure you by the end of the talk there was not a dry eye in the house, in part I believe down to the sheer appreciation and thanks you could see spilling out of Rae herself.
Here are the answers to the questions you put to Rae:
How old are you?
I am 60 years old but was 59 when I had both transplants. I was diagnosed at the age of 35 with Type 1 diabetes and have had it for 25 years.
What do they look for in a suitable candidate for Islet Cell Transplant Therapy?18-65
Had Type 1 diabetes for over 5 years
Weight within height Ratio
Not a smoker
Not a heavy drinker
Not pregnant or planning to become pregnant
Not to have been diagnosed with a serious illness such as cancer or heart disease
To be suffering from severe recurrent hypo's - requiring outside help - for at least 6 months
Development of diabetic complications e.g. retinopathy, neuropathy, gastroparesis etc
To be referred by the patient's own diabetic Consultant, who needs to complete an official referral to the Islet Cell Team at Oxford
Do you have any idea how many people are undergoing these kind of procedures?
It is quite difficult for me to answer this question with any degree of reliability. However I understand that the numbers are still quite low. I think Oxford had done approximately 20+ procedures however some recipients such as myself have undergone 2 transplants and some will need three. I am unsure if they go on number of patients or total procedures. Also Oxford through the isolation facility provide islet cells to other regional hospitals so nationwide the figure is likely to be higher. Also not all the cells are used for transplants. The website gives further information on how these cells are used.
Do you have to take any medication at all?
The answer to this is yes and is key to the maintenance of the transplant. Immediately after the transplant a dose of CAMPATH is injected into the vein. Following transplant, two main immune-suppression drugs are taken every day. In addition an anti-viral and antibiotics are prescribed for several months after the transplant. In addition any drugs taken prior to the transplant are resumed.
I did experience some side effects following the transplant, but am not sure if these were due to the procedure or the drugs. This was related to having Gastroparesis for 5 days following the transplant, and had a debilitating effect on my recovery. In addition five weeks after the first procedure I developed a chronic ear infection which required hospitalisation. However probably not related to the drugs. Additionally I did experience Diaorrhea for some time after this procedure also this was resolved.
The second side effect last several weeks following both procedures was a low white blood cell count and resulted in temporary suspension of one of my immune suppressant drugs. I am very organised in taking my medication as it is important that it is taken at strict times/doses.
Was the immune suppressants better than having diabetes?
From my perspective it seems a small price to pay for my current experience of being off insulin. However I do naturally have some concerns about the long term effects of taking these. I understand that current research has a focus on transplants in the future and could mean that these do not have to be taken and is the reason why this procedure is currently not available for children.
How did you find the donor?
This is something that as a recipient you have no control over. I understand that the current criteria takes cells from people 30 years old and under.The blood group/tissue type have to be complatible and time on the waiting list are also taken into account. However you must be available to travel to the Transplant Centre within a reasonable time. There have to be a minimum amount of harvested cells in order for the transplant to take place.
Following the transplant you are given the opportunity to write to the donor's family anonymously, and this is coordinated through the transplant coordinator. I found this very emotive but was pleased the opportunity existed to extend my appreciation.
Was it strange not taking injections? How did you feel about eating your first meal without having to inject?
I was on a Medtronic insulin pump for around 10 months prior to the transplant and did not come off it until Christmas 2010. However my doses after the second procedure was so small that I was advised to cease taking insulin. It took me ages to adjust to the habit of setting basal/bolus doses. Initially I felt not being wired to the pump really strange, especially the tasks associated with using a pump such as replacing catheters etc. The overwhelming feeling I got about not injecting before eating was really weird. Like I was forgetting to do something!!
Was it worth it?
A resounding 'Yes' to this question, however I feel appreciative of the opportunity to be a recipient. I can't help feeling emotional when I think of all the people who made this possible. All the fundraisers. The curiosity, commitment and passion of all those involved in the research, particularly the brilliant team at Churchill Hospital, Oxford led by Professor Paul Johnson. Locally my consultant Philip Coates. Of course my Donor and the generosity of their family for giving their permission for organ donation.
My own friends, family and colleagues all played major roles in supporting me through this process.
I understand however that guarantees do not, and cannot, exist regarding how long this will last and the implications for the future. It requires long term commitment to attend regular appointments and to protect and take responsibility for my own health.
However I clearly feel that most diabetics are already well-practised in being disciplined!
I hope you found this interesting and if you ever have the opportunity to hear a transplant recipient speak I would urge you to go. Rae's story truly inspired me and to be alive in the time when this is being done is truly humbling.
But it is also still important to remain realistic. These trials are still at the very early stages and remaining healthy and dedicated now will ensure that WHEN (not if) this procedure is ready for the masses, you will still have a healthy body with which to join in.
We also have to remember that the efficacy of the procedures is not yet known. We have all heard the stories about people being back on insulin after two years. It is too early to think that by next summer all of us post-diabetics will be cured for good if we get the opportunity to do this. There is still a lot to do and a lot to learn. Don't go bulk buying the maple syrup just yet!
But for people with diabetes, their parents and loved ones, this is a step forward which signals a brighter, better and healthier future for diabetics. While there is part of me that is sad that I am not someone who would be considered for a trial and while I am sure my friends and family would rejoice if I was ever put forward, I am confident in the knowledge that people like Rae are leading the way for the rest of us. It is only with the help of willing participants that these trials and the precious results they provide, that people like you and me, your child, your mother and your friend, have a twinkle of hope on the horizon.
Please share this post with your friends, family and especially with all those in 'Club D'.
People need to hear this