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?