Climbing Kilimanjaro with Type1 Diabetes
Kilimanjaro – Defying the odds – Setting New Standards
When I was diagnosed, and through my childhood, diabetes defined many of the things that I could and could not do. Back in the late 1970’s and early 1980’s insulin and food regimes were very rigid and participating in sport often led to hypos and from an early age I watched others participating in sports from the side-line. Many people told me that I would not be able to do adventurous things because of the risk that I would have a low blood glucose level whilst participating and that would bear is to my life.
By the time I was in my late teens I had reached a rebellious phase and I started to participate in a variety of unusual sports. This included disappearing into the hills for a few days with the world’s largest ruck sack, wild camping as we trekked through the countryside, kayaking and even for a brief period, rock climbing, I even became an instructor teaching young people the fundamental skills of bouldering and abseiling. It is only on reflection that I now understand that
all of these sports were in some way pushing the boundaries and limitations that others had placed upon me.
It was a way of demonstrating that diabetes is not a barrier unless you allow it to be.
However, as time went by I started to train in Karate and I spent 3-4 years where I would train 5 times a week and the outdoor pursuits slowly stopped. It was not that I was no longer interested; it was simply that I did not have the time, although it was always there in the back of my mind that I wanted to return to my outdoor activities.
At about this time my brother, Mark and his partner Linda, had decided to climb Kilimanjaro on an expedition organised by a mutual friend.
I was invited to go too but I had developed retinopathy and all of my investigations suggested that this would prevent me from safely reaching the summit. Therefore, I declined the offer and continued to train for the 3 peaks.
We continued our training and 4 months later we repeated the challenge, this time we were ready, and we completed the event in 15 hours and that even included a stop for a meal.
The lessons we were taught by our previous experiences had prepared us well, and reinforced my own philosophy that mistakes are valuable lessons.
It was only a couple of months later that I had yet another invite to climb Kilimanjaro, the universe was clearly telling me that this was something I should be considering.
I consulted with my medical team and my Ophthalmic surgeon confirmed that spending time at an altitude of 5895 metres would put my vision at serious risk and there is no way that I should participate in such an event.
I had already been reading the research material on this very subject and I felt that his advice was well considered and so once again I turned down the opportunity.
In my heart I really wanted to climb Kilimanjaro.
Once again, the memories of my childhood were coming to the surface, all of those times in my childhood when I could not participate in sports and events and I was feeling that in spite of all of the advances in diabetes management and technology, nothing much had really changed.
As Dennis recovered from his appendicitis, he persuaded me against my better judgement to take up running. You need to understand that I am not a runner, I have never been a runner and I never wanted to be a runner.
To my surprise I found I actually enjoyed running and within just 6 months I was running my first half marathon. My goals for running my first half marathon were simply to cross the finish line and to do it without having a hypo. I was successful on both counts and I had raised some money for JDRF whilst doing this.
One day, I received a call from Adele from the events team at JDRF. She told me that in June 2014,
a world record breaking attempt to get the most people with type 1 diabetes to the summit of Kilimanjaro was going to be happening and she asked me if I would be interested in joining.
My initial reaction was I would love to… …but I am afraid that my diabetes complications will prevent me from joining you, I found myself saying,
“that sounds amazing, can you reserve me a space please, I have some complications of long term diabetes that might prevent me from going but I will seeks medical advice and confirm my place with you within two weeks”.
There were several things that were different about this trip from the previous invites
I had to climb Kilimanjaro, there would be twenty people with type 1 diabetes together, there would also be a diabetes consultant, a diabetes specialist nurse (CDE), a dietitian and 2 GP’s with us on the mountain.
If I was ever going to climb Kilimanjaro, this was the right time. I phoned my own diabetes consultant to discuss my upcoming climb and he immediately told me that he could see no reason why I should not go but this was outside of his expertise, he did tell me to speak with the ophthalmic surgeon who had already operated on my eyes a number of times to preserve my vision, before I confirmed my place.
The ophthalmic surgeon once again told me that this trip might mean that I would never see again.
The surgeon went on to explain that because my macula is already affected by diabetic retinopathy that we should not discount this as a risk and that climbing at this altitude should be avoided.
I had spent a number of years looking into this exact question and had seen a lot of research theories but never any evidence that suggested the number of cases that this happened in.
To put it another way I knew the theories but I could not work out the likelihood that those theories might actually become the reality for me.
Suddenly I understood the advice I was given not to climb Kilimanjaro was good conservative advice but based purely on a hypothesis.
I phoned Dr Gallen’s secretary and she told me of his private practice and ten minutes later I had privately arranged an appointment that I was going to pay for – the cost was going to be in the region of £100.
Just one-week later I had driven 130 miles and paid my fees and I sat in the best diabetes consultation I have ever had in my life.
Dr Gallen could give me no guarantees but based upon the presentation of my diabetes, my management protocols, the relative stability of my eye disease and my fitness levels he felt that Kilimanjaro was not out of the question.
Let us not under estimate this challenge – people can and do die climbing Kilimanjaro. This was going to be both an exciting and terrifying challenge, I had never walked at altitude, I had never met the people I was going to climb with and we had no idea how my diabetes was going to behave at altitude. On the positive side this team were going to be amazingly prepared and the mutual and medical support was going to be amazing.
As the countdown to the climb began, we all started to get nervous about the challenge ahead.
There were going to be twenty of us with type 1 climbing together and 15 people without diabetes, those we affectionately termed the muggles.
With just a few weeks to go one of our team members was having some difficulties with her diabetes management and she suffered a couple of serious episodes of hypoglycaemia,low blood glucose levels, requiring help from others whilst on training – this really could happen to any one of us The medical team decided that this was too much of a risk for her and for us, suddenly our team was down to 19 people with diabetes.
It was a devastating moment when we were told this news, for her and for us and yet this amazing young lady plans to climb Kilimanjaro next year,
proving that even when diabetes changes your plans it really does not stop you.
You should know that the things that I achieve in my life are only possible because I have the most amazing and supportive wife and my daughters are truly remarkable.
The lesson for us is that we need to make the most of every single moment that we have together and we must make opportunities to do the most amazing things that we can imagine with the time we are given. I truly hope that this lesson travels with them forever so that they can live extraordinary lives, my plan is to lead by example.
Upon arrival in Tanzania
This was the first time the whole team, of thirty-one, were together.
It was also Kris’ birthday and we celebrated with nervous anticipation. As the briefing was delivered Henk, our mountain guide, made it clear that this was our chance to talk about the summit, he told us that after this conversation we were not to talk or ask about the summit again until summit night.
These briefings included topics as diverse as toilet facilities on the mountain, which varied between barely acceptable and rudimentary, washing facilities that for the most part consisted of a shallow bowl of warm water each morning, assigning us to medical professionals who would help us with our diabetes care.
The medical team led by Dr Omar Mustafa gave us a briefing about how our diabetes medical care would be arranged and what we might expect. One moment remains me about this briefing when we were suddenly advised by Vicky, our dietician that we needed to consume a Mars bar every hour whilst walking to prevent hypos; the looks on our faces were incredulous as we calculated that meant we needed about 40 Mars bars each.
Between 19 of us with type 1 diabetes we needed to buy 760 Mars bars
the only shop we would have access to would be the small souvenir shop at Marangu gate
The advice was based upon the good research that Vicky had been carrying out about how fuels are burned and consumed on endurance events at altitude and was given in good faith but the we knew that the liklihood of buying 760 Mars bars in a 3rd world country was small. However, one of the things we demonstrated as the climb progressed was that the evidence and research on this matter did not align with our experiences. We really did not need 8 Mars bars a day each, in fact I never consumed a single Mars bar the whole trek.
The following morning the team signed in to the Kilimanjaro National Park at Marangu gate, our climb would take the Marangu route up the mountain and each night we would be camping in huts on the mountain.
Our first day of walking would be in temperatures approaching 40°C and the humidity would be high as we walked through the lush forests that cover the base of the mountain. As we walked we saw small deer like creatures, called Mountain Reed Bushbucks, and Blue Colobus Monkeys were in the trees over our heads. In the UK this would have been an easy walk but we were already at almost 2,000 metres (circa 6,000 feet) and the effects of this altitude, combined with the humidity, heat and the tiredness from the long travelling hours the day before, were making this walk more challenging that I might have expected. On the first day we only walked for about 5 hours before we reached Mandara Huts where we would spend the night.
This was just another way of helping our bodies to adjust to the altitude, we would then get 30 minutes to sort out our equipment and unpack our sleeping bags and to wash. The team would reconvene for the evening meal and a briefing about the following days trek and timings for the day followed this.
Finally those of us with type 1 would check in with our medical team where health screening was carried out and our feet were checked. We would discuss the strategies that we had used that day to manage our diabetes and we would also agree the strategies that we would use the next day.
After this had all happened it would be time for bed and it was astonishing how quickly we became aligned to mountain time, rising with the sun and going to bed as the sun set.
The first night on the mountain was strange, sleeping in a basic hut with 3 other people.
After a long day of travel and changes to time zones the previous day, followed by a day of exercise it really was no surprise that between the three of us we had alarms going all night as blood glucose levels rose or fell. In fact James had some difficulty in bringing his blood glucose levels down that night and found it difficult to sleep; of course the elevated blood glucose levels meant that he had to pee a lot too.
The next morning Mark complained to me about feeling tired because of all the pump alarms, CGM alarms, toilet trips, hypo treatments and blood glucose testing that went on through the night.
We feasted on a carbohydrate-loaded breakfast before we began the trek to Harombo huts.
The trek that day would see us break the tree cover and as we gained altitude we would become more exposed to the sunlight.
In just a few moments the team were back to high spirits and the mood for the night was well and truly set and as we finished celebrating our arrival we stood there with the clouds below our feet watching the sunset and I felt grateful to have made it this far
we were staying at Horombo huts for 2 nights to allow our bodies to become used to the effects of altitude and this meant that we had an extra half an hour in bed in the morning before we had to trek again. This was seriously time to celebrate!
As we began the third day of climbing we knew that we would only be walking for about 5 hours as we were heading to a famous landmark called Zebra rock, named for the black and white stripes that run down this large monolith.
By now the landscape was really changing, we were walking through a lunar like landscape, there were few if any plants and the wildlife now consisted of a few birds and some rats that would scamper around if we stopped to eat. We walked through the morning in shorts and t-shirts with the sun blistering down upon us, taking care to make sure we had sun lotion on, sun hats and sunglasses.
When we stopped for a lunch break, I was stunned as the porters served us fresh hot KFC, yes Kilimanjaro Fried Chicken really was on the menu! I have no idea where that fresh chicken came from how they cooked it in the middle of nowhere at 4,300 metres or how they kept it hot. we were just finishing our lunch when the weather started to change and within a few moments the sun had disappeared, and it was snowing.
The walk through the wind and snow that afternoon was made so much harder as the path to Kibo Hut, the final base camp, is quite steep and although you can see Kibo hut for hours before you arrive it never gets any closer.
The effects of altitude were adding to the challenges that we were facing and as we passed 4,500 metres in altitude it was like somebody had flipped a switch for me.
Until this point, I had been massively sensitive to insulin, needing only 20% of my basal (background or long acting) insulin and suddenly in the space of a single afternoon I became massively insulin resistant. It was anticipated that this might happen, but it was still a shock as in the space of one afternoon my insulin requirements increased from 20% of basal insulin to a massive 300% of normal basal insulin – that means I need 15 times more insulin.
The craziest part of this was that even on this new super dose of insulin my blood glucose levels were still massively high, and we began to watch out for signs of diabetic ketoacidosis. Climbing a mountain with high blood glucose levels is challenging enough but the effects of altitude and the medication (Diamox) that I was taking to mitigate the effects of altitude sickness have almost exactly the same symptoms as diabetic ketoacidosis.
As we arrived at the final base camp that night I was feeling exhausted, as my blood glucose levels were massively high, and we were all suffering from the effects of low oxygen saturation.
I think that the low oxygen saturation and dehydration that is associated with altitude were the drivers behind my massive insulin resistance. In my own particular case my insulin resistance at altitude was following the text book, some others in the team were experiencing similar effects too but at least half of the team were not affected in this way; showing once again that diabetes is a very personal experience.
Our arrival at Kibo hut placed us at the foot of the summit trail, we were now at an altitude of 4750 metres and once again the porters welcomed us with the Kilimanjaro song.
It had been a hard day of climbing, we were all exhausted, yet somehow the amazing team of porters and guides were jumping around, dancing and singing and encouraging us to do exactly the same. The guides seemed to know exactly when the team needed a boost in morale, and they knew exactly how to do that.
Once again, we left our kit at the hut and climbed another 300 metres in altitude before we came back to the hut for the evening.
We gathered for our evening meal together and the mood was amazing, many of us were suffering with nausea and headaches but that did not stop the team for engaging in lively discussion. Henk advised us of the procedures for the next day, we would do a short acclimitisation hike in the morning arriving back at Kibo hut at midday.
At this point I was battling high blood glucose levels and feeling the effects of altitude.
The meals on the lower slopes had been great but as we neared the summit the quality and variety of food had diminished; I am grateful for the excellent service that we received and the cooks did an amazing job especially when you consider that they were making almost 300 meals a day and all of the food was carried from the bottom of the mountain.
I struggled to sleep that night, a mixture of anticipation and high blood glucose levels.
I used this opportunity to give yet another bolus of insulin to try and bring my blood sugar levels down as I thought about the next day and the upcoming summit night. I climbed back into my sleeping bag and spent the next 30 minutes trying to warm back up again.
I woke the next morning to the delights of a high blood glucose level and the feelings of tiredness and exhaustion that go with it. I was greeted with the normal breakfast of porridge and cassava and I struggled to eat any of it as I sat there drinking a mint tea.
Within a few minutes we were getting ready for our morning acclimatization hike and we set out practicing our summit walking, the idea was to walk really slowly in single file; ideally our toes should almost touch the heel of the person in front, if for any reason we needed to stop we were to step out of line and join back in nearer to the back. Some of the guides would be at the back of the line to make sure that everybody stayed together.
I was consulting the medical team and we were monitoring for ketones.
As the evening meal approached I had been giving insulin shots every hour, on the hour, in case the pump was not working effectively and I was still on 300% of my normal basals;
The last meal before the summit was an unusually quiet affair as each of us worked through our emotional and mental preparations for the challenge that we were going to face together that night.
After a couple of hours of much needed sleep I was woken up for the summit preparation, at this point Chris was putting on his very special summit pants, a pair of pink pants (briefs) that said Ski Bum on the back. The deal was that he was going to pull his trousers down and do a moonie at the summit wearing these pants in some crazy arrangement he had made with friends back home.
This whole adventure had been Chris’s idea in the first place as part of his 7 challenges on 7 continents campaign and Chris was no stranger to adventure as a person with type 1 diabetes and a professional snowboarder. His crazy pink pants certainly made the 20 guys in our dorm smile.
At exactly 11:00 we began our trek, we each carried 4 litres (almost 8 pints) of water.
Just 30 minutes into our trek the water bladder had frozen as the temperature dropped to a staggering -20°C, as I checked with other members of the team they were experiencing the same.
No amount of insulation or blowing the water back into the pipe had any effect – water bladders clearly are not the way to cope on summit night.
The routine for the whole night was that we would walk for one hour and then we would rest for 5 minutes, this was a punishing task and as we became more tired, colder and the effects of altitude had greater effect, we wanted to rest for longer but stopping and resting means that you get even colder and the risk of hypothermia increases.
All of us with type 1 were now focusing on keeping our blood glucose meters close to hand and warm enough that they would actually operate, keeping our insulin warm and for those of us on insulin pumps this also meant keeping the pump and its batteries warm.
We achieved these things by keeping pumps next to our skin, the logic here was that our bodies are at 37°C and if our core temperature drops more than 1-2 degrees we will have hypothermia and that is an entirely different medical emergency and we accepted that although the ideal temperature of insulin is considerably cooler than this, in the short term it was unlikely to do any real damage. Another challenge we faced that night was in performing blood glucose tests – taking gloves off to perform blood glucose testing when the temperature is -20°C is less than ideal and exposing the hands to low temperatures can in fact lead to hypothermia.
After a couple of hours of painfully slow walking we reached Hans Meyer’s Cave, this is a major landmark on the summit route and we were given a drink of hot, sweet tea. It was now about two thirty in the morning and we were all feeling tired and it was cold.
At this point it was 15 hours since I had last eaten and my blood glucose levels had actually stabilized in target range with the combination of huge doses of insulin, starvation and exercise.
I was climbing this mountain with a great team, but I wanted to summit Kilimanjaro with my brother and now he was at the front of the line and I was near the back.
I told the guide that I was going to summit with my brother and that we were going to catch him. He advised me that this would be hard on me because I was already fighting for oxygen, we discussed it briefly and he could see that I was determined to reach the summit with Mark and we picked up the pace and walked alongside the group until we reached the front again.
I was gasping for air but I was in a strong place mentally and my hands were beginning to warm up, I started to feel that unless the mountain decided to give us some additional challenges that I was going to make the summit.
Mark and I were still leading the team but I was struggling now, even though I was walking more slowly than I have ever walked I was breathing like I was sprinting and things were not getting any better, with each step I was longing for the next rest point;
I knew that with every step forward I was one step closer to both a rest and the summit and those drove me to continue pushing through the absolute exhaustion that I was feeling.
Finally we reached Stellar Point, the next summit of Kilimanjaro and as I staggered to the signpost in the darkness altitude sickness struck me like a bolt out of the blue, suddenly I was throwing up.
Instantly my porter Joseph was with me pulling my back pack off of me, rubbing my back and shoulders and assessing my health, I knew at this moment that he would decide if I could continue or if I needed to descend and there would be no room to argue or negotiate. I sat there for a moment gathering my thoughts, I was determined that my physiology would not stop me from walking the last 20 minutes to the highest summit.
I brought my breathing under control and I stood up, Joseph could clearly see that change in me and he told me that now I had been sick I would feel much better and that the summit was only a few minutes away. Sure enough he was right, Joseph now carried my rucksack and I could see the fingers of pre- dawn light in the distance.
We continued our trek and at 06:24 I reached the summit.
I shed a few tears as I watched the sunrise on this winter solstice morning from the highest point in Africa. The views were amazing as the sun bathed the glacier in a golden orange light and we could see the curvature of the earth and in the far distance
I could see Mount Kenya beneath us.
As more and more of the team joined us people were taking a few moments of quiet gratitude and tears were flowing as we thanked each other for the amazing experience that we had joined in together.
we had defined new standards in diabetes, never before had such a large team of people with type 1 diabetes joined together and performed and climbed Kilimanjaro, we had expanded not just our own knowledge of what is possible with type 1 diabetes but we had also educated an entire medical team in the amazing tenacity that you need to beat diabetes every single day. I am certain that it is this amazing determination and tenacity that we use every single day that drove us to the summit.
As I left the summit sign Siobhan, the team Diabetes Specialist Nurse was just reaching the summit. I stood there in awe of her as she had placed the needs of every single one of us before her own needs throughout the whole trip.
All too quickly I had to leave the summit,
I was still struggling with altitude sickness and my body was telling me that it needed help, I needed to get down this mountain.
As I began to descend I was sick one again, and as I looked up I realised that once again I was at Stellar point.
31 people attempted to summit Kilimanjaro on this trip, 19 of them have type 1 diabetes.
29 People made the summit, including 17 people with type 1
that is far beyond the normally accepted levels of success and it is amazing that the 2 people who did not make the summit were not stopped because they have type 1 diabetes, instead it was other external factors; an eye infection and early signs of hypothermia which stopped them this time.
This expedition taught me a great deal about my diabetes and how it influences my life. I learned a number of lessons about myself on this climb about how I cope with challenges and adversity but perhaps the single most important lesson for me was that the limiting beliefs of others should never define my life and the things that I am capable.
Once again I find that in some strange way I am grateful for the fact that I have diabetes,
I may never have climbed Kilimanjaro if I did not have type 1, I probably would not have done this with such an incredible team.
I truly believe that in reaching this summit I may have finally demonstrated to myself, and others, that the only barriers to success are our own limiting beliefs or the limiting beliefs that we allow others to define us with.
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