The Bonnie Sher Show, Boomer Life is a live 50‐minute Internet radio and podcast program dedicated to a generation of Americans who continue to be a major force ifor social change and poster children for independence and self‐expression.
My September 2016 blood sugar numbers are quite amazing. For Type-1 Diabetics, and our friends and family, it shows what is possible for all of us.
A Type-1 Diabetic for 35 years, I no longer take insulin and my life has abruptly and dramatically changed – all because of a City of Hope Clinical Trial.
The Bonnie Sher Show, Boomer Life is a live 50‐minute Internet radio and podcast program dedicated to a generation of Americans who continue to be a major force for social change and poster children for independence and self‐expression.
At day 14 after my second Islet Transplant at the City of Hope, I still require no external insulin. Recovering well, I’m starting to believe what is happening may really be true.
Day 14 – Absorbing The Results
Each day brings more surprises:
- I’m requiring no insulin.
- I have normal blood sugars.
- I eat normal meals.
- I am no longer using my insulin pump, my constant companion for almost 25 of my 35 years as a Type-1 diabetic.
- I go to bed with a 110-115 blood sugar, out of habit wake up at 2AM to re-check my blood sugar, finding it’s still the same, and wake up in the morning with anywhere from an 85 to 100.
- I’ve had no – zero – low blood sugar episodes since my first transplant on January 1, 2016.
What This All Means
To understand what this all means, we must go back to the stated objectives of this clinical trial, and to evaluate the results I have obtained so far. City of Hope’s stated objectives for this trial are:
- to evaluate the safety and effectiveness of islet transplantation using an immunosuppression drug called anti-thymoglobulin (ATG) to prevent islet transplant rejection, when used in combination with other immunosuppression drugs.
- To evaluate how your body responds to transplanted islets.
- To determine the quality of life of research participants receiving islet transplantation.
Primary Outcome Measures (all of which I am achieving 100% at this time):
- Proportion of subjects who are insulin independent, hypoglycemia free, AND with hemoglobin A1c ≤ 6.5%
Secondary Outcome Measures (all of which I am achieving 100% at this time):
- Reduction/Elimination of hypoglycemia
Other Outcome Measures (most of which are still pending for me, and that will be evaluated over the five year duration of this clinical trial):
- Duration of insulin independence
- Positive Stimulated C-peptide
- Reduction in daily insulin requirement
- Insulin secretion during Intravenous Glucose Tolerance Test
- Rate of alloimmune rejection
- Rate of autoimmune reactivation
- Incidence and severity of adverse events related to islet transplant procedure
- Incidence and severity of adverse events related to immunosuppression
- Incidence of change in immunosuppression drug regimen
- Incidence of immune sensitization defined by presence of anti-HLA antibodies post-transplant that were absent pre-transplant
- Incidence of discontinuation of immunosuppression
So, since I am currently having very positive results, I’ve obviously been very, very lucky so far.
Remember that these are my results alone, and I have no idea how other transplant recipients in this clinical trial have fared, nor does it indicate how others may do in the future. But it does give me great hope, and certainly an idea about the role that islet transplantation can play in a Type-1 diabetic’s life.
I very much believe that I am traveling on a road, and participating in a trial, that will lead to a cure – hopefully that I will see in my lifetime.
How long will this last for me? Will I have any complications? Are there difficulties ahead? All very good questions, but right now they are just not so much on my mind.
As I asked before: Has anyone ever had a better fourteen days?
For the first time in 35 years as a Type-1 diabetic, three days after my second Islet Transplant at the City of Hope, I require no external insulin.
If you’re a Type-1 Diabetic, or know a Type-1, you’ll hopefully understand how impossible this is to comprehend. At three days post-transplant, I’ve now had two days of complete meals and required absolutely no insulin injections. My blood sugars have been normal – in the 80 to 140 range – just like a non-diabetic. It it weren’t happening to me, and my body, I think I wouldn’t believe it.
The Days Before
I had my first pancreatic islet transplant at the City of Hope on January 1, 2016.
It gave me better control, eliminated my lows, and reduced my insulin requirements to less than 20 units a day, down from over 60. For the first time in the past 10 years, I found myself able to go to bed at night without worrying about not waking up.
I still had to count carbs, and give myself a small amount of insulin with every meal, but I’d never felt better. I was still requiring insulin because the islets that survived the first operation, now living in my liver, weren’t enough to produce all the insulin I needed.
Day 1 – The Second Islet Transplant
I had the second islet transplant at the City of Hope, on June 16, 2016. It has been five and a half months since my first transplant.
My Welcome to The Hospital
I was met at 6am at the hospital door by the two young women who have guided me from my first day at the City of Hope. Both named Jennifer, one a senior RN, and the other the Clinical Research Coordinator, they have lead me with sure and caring hands through every stage of my City of Hope experience. In front of the building on this particular Thursday morning, both wrapped their arms around me, understanding what was about to happen, and told me what it great day it was going to be.
From that moment on, until my operation at 3:30 PM, I was never alone. Through every final test, every transplant preparation, I was surrounded by caring, supporting City of Hope people. They built my confidence, and ensured every base had been covered, making sure I was ready.
The operation team was lead by two surgeons, assisted by a team of supporting doctors and nurses. No television patient on Grey’s Anatomy ever felt more important, a comparison these professionals probably wouldn’t appreciate.
This time I was getting almost 600,000 new islets from my second donor. Combined with the almost 500,000 from my first, I’ve now received more than a million new islets from these two young men who so unselfishly donated their organs, and which live on now in me.
At 3:30 PM, I was brought into the operating room and given a mild sedative. This meant I would again be awake for the entire procedure. I saw the transplant team, watching, on the other side of a large glass window. The doctors positioned me on my back, with my right arm over my head, and told me to remain very still for the duration of the operation. The first surgeon then made a small incision under my right armpit, and inserted a catheter directly into the portal vein of my liver. For the next 2 1/2 hours they injected the donor islets into the liver. They stopped and checked the internal vein pressure every few minutes, to prevent rupture, interspersed with injections of Heparin, to prevent clotting. I never felt any pain or discomfort, other than having to remain completely still for the entire time, resulting in a bad cramp at one point in my arm.
They also checked my blood sugar every 5 minutes during the operation, since the injected islets begin producing insulin immediately, and they wanted to make sure they are “taking”, and I am not over-reacting. It’s quite amazing to listen to them talk as they are working on you, ranging from serious discussions about the operation, through time call-outs for each required step, to more general talk about their days, or the prior weekend. Most surgery patients never get to hear this sort of talk during their operations. I chipped in at one point asking ‘how is it going?’, and they responded ‘just excellently’, but sort of in ‘just shut up and let us do our job’ tones of voice.
At about 5:30, the operation was over. There was an excited feeling in the room as they told me how well everything had gone. This was one of the largest quantities of islets they have ever done, and I saw great satisfaction on each of their faces.
Post Op – ICU
I was wheeled to Intensive Care, and as I entered I suddenly heard “Roger, you’re back!” The nurse I had during my first transplant was leaning over me, and I found myself relaxing as I felt her welcome.
The Jennifers are both still with me, watching over everything that had happened. The nurses begin testing my blood sugar every fifteen minutes for the next 2 hours. All are in the 80s, absolutely normal fasting blood sugars. I am pretty groggy, but I can’t really explain what was going on inside me when I listened to each result.
The Clinical Trial head nurse then arrived, broadly smiling, accompanied by the head trial Endocrinologist, who began to examine me. He is normally a very quiet and somewhat reserved man, but tonight he is almost beaming with excitement as he gets results from the nurses, and sees how well I am doing.
Later that night, about 10pm, I look through my room window and see Jennifer (the RN) still outside my room, hunched over a table working with my ICU RN and her assistant, going over my care. Having so many people caring for me, and so concerned with how I’m doing, is truly something quite difficult to explain. I’ve learned that this is the City of Hope “style” – each individual at each stage of care supremely qualified, absolutely dedicated to their job and to your well being.
Day 2 – Absorbing The Results
The next day I had a few gastrointestinal (GI) problems with all the drugs I’ve been getting, and require a few more tests, and some more drugs, to deal with them, but it’s nothing they can’t handle. The Lead Trial Doctor also spent some time with me, plus the rest of the team, explaining my results – all smiling, happy, and positive. They were a little concerned about the GI issues, but infectious good feeling filled the room.
Each of the ICU RNs and assistants have also been caring and concerned. Most have also been very curious about my operation, which is something much different than they normally see. They are all skilled professionals, and they always want to know more. As I’ve often seen with Type-1 diabetes, I find unexpected common ground with one particular nurse who has a young cousin who’s just been diagnosed with Type-1. We spend a lot of time drilling down into all the information I can provide, which she absorbs for her family. This is an example of one of the most positive things that’s happening to me. I can relay information about this groundbreaking City of Hope program, and how it is affecting me, to other people who are trying to deal with their own diabetes, or for someone in their family. It is a highly rewarding opportunity, and has become a passion for me. I talk too much about it, but find myself compelled to continue.
Day 3 – Discharge and Going Home
On Saturday, my Clinical Trial Team Lead Doctor returns and tells me I can go home. I am surprised by a visit from Dr. Kandeel, the chair of endocrinology at the City of Hope, who tells me he observed my operation, and is delighted with my results. Just more good vibes, all coming my way.
I am very close to a state of shock. I’m requiring no insulin, have normal blood sugars, eat meals without carbohydrate counting, and am no longer using my insulin pump, a constant companion for many years. Another team member comes by, bringing a large shopping bag of drugs, and gives me the details about administering them at home.
We schedule a follow up visit for three days later, and I am picked up and go home. At home, I check my blood sugar again, and have a small meal. I panic more than a few times, thinking I’ve lost my insulin pump, when I instinctively check my waist and it’s not there – how long will this take to get used to? I go to bed with a 120 blood sugar, and out of habit wake up at 2AM to re-check my blood sugar, and find it’s 104!
How long will this last? Will I have any complications? Are there difficulties ahead? All very good questions, but right now just not so important.
Instead, I am thinking about my many, many blessings. I’ve had a dedicated and caring transplant team, one of the best in the world, at the City of Hope. The support from friends, and the Type-1 community, has been the most emotionally rewarding experience of my life. I have a renewed and even stronger dedication to diabetes research, clinical trials, organ donation, and everyone and everything associated with these efforts. I’ve made new friends I know will be with me for the rest of my life. This experience has truly been “life changing”, in the best use of that phrase, and I am filled with emotion and thanks.
I wonder if anyone has ever had a better three days?
“I am writing to inform you that you have been listed as ACTIVE on the UNOS waitlist as of today, June 10, 2016 at 1:45 pm. We will notify you as soon as we learn of a donor pancreas becoming available.” ….. City of Hope
As I read the words in this email, my eyes blur a little. I’ve been thinking about this so much over the past two months, and now suddenly, like the electric shock you sometimes get when you touch someone, it makes me jolt back from my computer screen.
I immediately start thinking about what’s going to happen next – I now start waiting for the call that will come at any time, on any day, with the news that someone’s life has ended and their pancreas is now available for me. These awful conflicting emotions never end for me. I feel joy about moving forward, but an incredible sadness for the donor I will never know, and deep gratitude for the gift they are about to give me.
So I now begin thinking back about the recent six months, and the remarkable changes I’ve experienced since my first transplant in January.
Before The Transplant
Type-1 Diabetes exacts a big toll on every diabetic’s life. In the four years before my transplant, after 35 years with Type-1, my life had been begun to degrade, and every month seemed to bring an increasing set of issues. The insulin resistance I was developing meant my body had begun requiring increased amounts of injected insulin. I was having more frequent problems controlling my blood sugar levels, particularly the lows, to which I had also become unaware. Twice in December, at 4AM in the morning, I found myself on my bedroom floor, once with blood all over my face, and the floor, apparently from hitting the headboard while thrashing. In both cases I had no idea where I was, or how I got there, or even who I was. I was both depressed and failing.
After The Transplant
In contrast, since January, I have had not one low or high, blood sugar episode.
- I go to bed with a normal 103, and wake up in the morning with a 105.
- I rarely go below 100 or above 135.
- I play tennis 3-4 times a week, with no blood sugar issues.
- I drive and work long hours and never worry about a low.
- I feel just great – healthy, happy, and free of diabetic anxiety.
Earlier this month I found myself actually feeling, for a moment, like I didn’t have diabetes.
The only real negatives are that I still require a small amount of insulin, delivered by my insulin pump, every day, and I take a lot of anti-rejection and support drugs.
Why do I still need insulin?
They really have no idea how many islets survived the transplant into my liver. They also have no way of measuring how many eventually made it and remain productive. So when I was injected with a full complement of islets from my original donor pancreas, a large quantity did not survive.
They know as many as 50% may die during the procedure itself, and another 50% of those remaining may die in the first month as the islets attempt to “graft” – e.g. find a permanent home in my liver. So, it’s a big unknown how many end up really working. It’s the proportion that survive, and my body weight, that determine how hard the surviving islets have to work, and how much external insulin I continue to require, if any.
Thus these are the major questions they are trying to answer with this particular Clinical Trial, and that affect how this is going to work in the future:
- What is the overall combination of drugs required to help more islets survive?
- Does a large infusion of T-Cell reducing drugs administered at the time of the transplant help this survival rate?
- When, and for how long, and in what quantities and proportions, should the anti-rejection drugs be administered to try and improve the islet survival rate.
- Can we minimize the potential negative long-term effects of all these drugs by carefully regulating the dosages?
- Cam we elongate the effective time span of the transplanted islets to potentially last a lifetime?
Where I Am Now
So I personally have ended up with enough islets surviving my first transplant to:
- Produce enough glucagon to eliminate my low blood sugars.
- Produce enough insulin to reduce my external insulin requirements down to about 15-18 units, down from over 65 units a day.
As a result, I can also manage blood sugar levels much better – lower external insulin makes it easier – and I don’t have to worry about lows.
So yes, I am taking a lot of drugs, and yes, there have been some small side affects, and yes, there are certainly some long-term difficulties I may encounter. But oh how sweet this incredible experience of normal blood sugars has been, as well as being able to go to bed at night without worrying about not waking up in the morning.
So Why A Second Transplant?
A second transplant can introduce some potential complications, including producing an overall rejection of the first and second transplanted islets, putting me back to where I was before the first transplant.
So why do it? There are really two answers.
The first is purely personal, a bit selfish, and very simple – I now have had a taste of what life can be like again. I want to see if it’s possible to get insulin free. I want it to last as long as it can.
The second is a bit more complicated, but infinitely more important.
During the past few months I have had many conversations with people whose lives have been affected by Type-1 Diabetes. I spoke with a mother who lost her young son, a Type-1 since age 6, when it finally became too much for his body. I had a conversation with a woman who told me about not being able to afford meals when her insurance was lost, and she and her husband had to sometimes give up food for insulin. She later lost him.
I’ve also spoken to other transplant recipients, and heard their unique stories of coping, triumphing, and sometimes failing. At the same time, I’ve had numerous conversations with people who are coping well with their Type-1 diabetes, but without exception they tell how it has introduced difficult and significant problems into their lives and families These are, of course, lifelong issues.
While they all worry about the future, there is not an ounce of “feeling sorry for themselves” in any of these people. They just do what they have to do, when they have to do it, every day, to cope with their condition. But there is a common thread of hope in everyone. We all want to see a cure in our lifetimes, and we all want no one else, particularly children, to ever have to deal with this condition or it’s complications.
So, the point is: we need a cure, and we need it now. The sooner that we figure out what gets us there, the sooner that we eliminate future bad stories. In my quite personal view, this City of Hope Islet Transplant Clinical Trial, along with many other similar trials, offer definitive and real hope for a cure. I just want to be a part of this process, and I want to see exactly what we can achieve.
So, for me, it’s full speed ahead, and let’s see where it takes us.
Things that Matter
It Doesn’t Matter
When I was twelve, I first became aware that there were two basic categories of things in life. Things that matter, and things that don’t.
My mother had just died – committing suicide by putting a hose into the tailpipe of the car in our garage. I instinctively knew that was something that mattered.
When I was twelve, my aunt took me to New York. I’d grown up in Indiana, on a small farm, and she decided I needed to see something about the rest of the world.
She and I had been talking for a long time about other things – the things she wanted me to learn, and see, and that she thought might matter to me. I was always absorbed in books – even at 12 I couldn’t get enough of them. Mimi fed them to me, like food to a someone starving, and I sucked them down.
That trip, to New York.
Sent from my iPad
Approaching 120 days post-transplant, I feel very, very good. No Lows. No Highs. A1C’s in the 5’s. It may not last forever, but it’s pretty sweet right now.
Where I Am Now
At this point in the clinical trial we have a pretty good idea of how my body is adjusting, and how well the transplanted islets are working. I’ve been very lucky. I’ve had few problems, and received relief from some serious issues. I’m not sure exactly what I expected, but I know I’m very grateful for where I currently am.
The biggest surprises have been how healthy I now feel, how fundamentally my life has changed, and how fast it all happened. At this particular moment, I can almost imagine what it would feel like to be a “cured” diabetic.
What Does “A Cure” Really Mean?
Diabetes doctors typically hate to use the “C” word, and almost never want to talk about it as a short term possibility. Most long-term diabetics never really think much about it either – we all laugh when we hear “probably five years”, because we’ve been hearing that specific phrase for the last fifty.
City of Hope cautioned me strongly going into this clinical trial that while a cure for Type 1 diabetes was certainly the eventual goal, it was very far away, and certainly was not going to happen for me. I accepted that completely. I decided I just wanted to be a part of this experiment, albeit certainly with some short term selfish motivation, but primarily because I wanted to play an active part, no matter how small, in the long term search for a cure.
The Diabetic’s Perspective
What most doctors rarely understand is how diabetes is usually viewed by the diabetic. Doctors treat us every 3 months, but our personal lives focus every single hour of every day on our goal of alleviating and managing symptoms. To do this we carefully monitor our blood sugar with finger sticks, multiple times per day. We take insulin with every meal, trying to properly estimate the carbohydrates we are eating. We attach ourselves permanently to insulin pumps, or continuous glucose monitors, 24 hours a day, to try and predict and prevent problems.
And yet, even with all this attention, our bodies sometimes betray us, and we end up with a severe hypoglycemia (low blood sugar) or hyperglycemia (high blood sugar), and the potential of devastating results. Our parents, partners, children and friends worry about us, deal with our lows, and are subjected to our condition.
From a quite personal view, if someone can eliminate my symptoms, irrespective of how it is done, I can easily find myself feeling I am close to “cured” – at least temporarily – even though I know I am not.
How I Feel At This Moment
Prior to my transplant, I was having several severe hypoglycemic episodes every month, sometimes a couple of times a week. I never went to bed without wondering if I would be awakened by a Paramedic, or perhaps not wake at all. I never played a game of tennis without worrying about a low blood sugar on the court. I never went to a party, or a friend’s house, without worrying that someone might have to step in and take care of me at some point during the evening.
I had started to accept, in a quite fundamentally terrible way, that it was only a matter of time until a serious low blood sugar would end with bad permanent results, or perhaps kill me. My insulin requirements were also gradually going up – and I knew more external insulin automatically meant more likelihood of bad complications. I wasn’t in a great frame of mind.
I had also frankly given up on the idea of ever getting seriously involved again, or re-married – how could I possibly ask someone else to deal with situations that I could barely tolerate myself?
Suddenly, since January 1, the day of my transplant, I’m now in a different place. I’ve not had one hypoglycemic episode, and, as the months have progressed, I’m looking at things much more brightly.
I was quite skeptical at first, thinking surely this wouldn’t continue. Every time I checked my blood sugar, I was prepared for the worst. But, to my continuing surprise, my blood sugars are now almost always normal. I go to bed at night with a 110 and wake up with a 113. I eat breakfast, and two hours later it is 105. I work all day, have meals, and play a couple of hours of tennis in the late afternoon. 110 before tennis, 100 after. My highest blood sugars are never more that 140, whereas before they would be 300, 400, or sometime higher. My lowest are now never close to serious, and I literally never feel the fear of a low anymore, no matter what I am doing, or where I am.
I continue to take insulin, about 20 units a day, down dramatically from before the transplant, and I still require a pump. I am, however, relieved of the major thing that was destroying my sense of well-being, and I’m beginning to lose the constant, unrelenting fear of the next low.
So, no matter what happens from this day forward, I feel I’m at least temporarily free – read “cured”, in my mind – from the “worst” of diabetes.
Now that this is beginning to sink in, I’m experiencing a profound, overwhelming feeling of change in my day-to-day life, and I’m starting to think about a future I thought I might never have. I just feel better than I ever could have imagined when this started.
So What’s the Next Step?
So next the question becomes: where do we go from here? Stay as I am, and don’t push the envelope? Have another transplant now, and try to get insulin free? Wait for a while, and see what happens, then make the decision later if my implanted islets start to fail?
There are risks with each approach. Waiting for failure doesn’t appear to be a great option – if my islets begin to fail, it’s likely new ones would fail also. Staying with the present isn’t an easy choice either – I got into this knowing the risks, to see how far I could go, and to find out what they might learn as I went there. They also told me that a second transplant was more likely to work if done closer to the first.
The Decision – A Second Transplant
So everything seems to point to a second transplant now.
There are definite risks – the second may be rejected, and thus cause the first to also be rejected – destroying all the implanted islets and putting me back to where I started – low blood sugars and all. This recently happened with another patient, and they’re not exactly sure why. While not pleasant to contemplate, I finally got beyond this – there weren’t any guarantees going into this anyway, so that really hasn’t changed.
So after weighing the alternatives, and with a great desire to continue moving forward, I’ve made the decision to have a second transplant. I’ll go back on the recipient list after a few more tests, and it will happen whenever a matching donor pancreas becomes available. It could be quickly, or it could be weeks or months.
Do I Think This is Going to Last?
My good results won’t last forever. This is not a cure – it’s just one small step in the long process to get to a cure.
My transplant may last a few months, a year, maybe two, five, ten, or, who knows, even longer. The immunity from low blood sugars will last as long as any islets are functioning. No one can really predict, however, how long any of this will last, and of course that’s what this trial is all about. They’re trying different methods to see how long they can make it last. But, no matter how long it lasts, it’s been an absolutely thrilling ride, and I once again know the feeling of being “almost normal”. The talks I have with people every day who are part of other trials, or with people with Type-1 diabetes today, have been blessings beyond my ability to describe.
So even if it ends for me tomorrow, I’m a much better person today for having been part of it.
Doctors, Nurses, and Donors have made this all possible
I believe that clinical trials – this one and others – will eventually mean a lifetime of normal living for anyone developing diabetes.
The doctors and medical professionals involved in these clinical trials around the country are dedicating their lives to looking for a cure. There’s not a single person on my team who isn’t focused on this cause, and just working with them has been inspirational.
The pancreas donors deserve our highest thanks and prayers – without the donation of their organs, after they die, none of this would be possible. There’s a special place in heaven for these people, as they live on in our bodies because of their gift. I’ll soon have two inside me, and not a day will goes by for the rest of my life without me thinking about them.
My thoughts at this point center around my confidence in the City of Hope and my transplant team. I am stunned about how they have already changed my life.
In a process like this, you are reminded every day of how lucky you are to be part of it – by the disciplines you develop, the benefits you receive, and the promise of the treatment. I will never regret, irrespective of the eventual outcome, being a small part of this incredible journey.
Monday-Friday: 9am to 5pm
Saturday: 10am to 2pm