My Story

I don’t remember my diabetes diagnosis. I remember small things, snapshots, of what happened at the hospital, but I couldn’t give you a full account even if I tried.

I remember the huge walk in closet they had for night gowns, and that I got to choose whichever one I wanted. I remember pulling out the feeding tube out of my nose. I remember playing outside in the hospital parking lot. But that’s about it.

Perhaps that’s because I was only 2 years old? Or that it was so frightening that I’ve repressed it?

My diabetes story started pretty much exactly 30 years ago, when I was diagnosed with Type 1 Diabetes in 1985. Being so young, I didn’t understand what was going on, but I know my diagnosis hit my parents pretty hard. My mother was petrified of needles, but had to give her 2 year old daughter daily insulin injections anyway.

They did the best they could in terms of taking care of me, despite the lack of technology that we have today, and the dietary recommendations that they got for me (and that diabetes patients still get today). Nobody understood at that point that it was the “healthy whole grain” and “five servings of fruit” that made me increasingly worse, needing more insulin and breaking down my body step by step.

When I first started taking care of diabetes myself as a teenager, everything went well in the beginning. That was until my hormones kicked in and started wreaking havoc on everything, to put it mildly. It got so difficult for me to cope with diabetes, in combination with “normal” teenage angst, that I actually stopped caring. Completely.  

This meant that I didn’t check my blood sugar at all, and rarely took my insulin. In hindsight it’s no wonder it all got so messed up and complicated, I didn’t get the help or medical support that I needed. By this point, my family and I had moved across Europe, so I didn’t even have my usual support systems to fall back on. In any case, the help wasn’t there when I needed it the most.

For 10 years I kept trying, back and forth, to regain control over the monster that diabetes had become for me, with one try ending up worse than the next. These experiments and trial-and-error based tries had me going in and out of hospital, being screamed at by various doctors, nurses and dieticians because I “didn’t try hard enough”. Dangerously high blood sugars were followed by deadly low ones. And it all left me exhausted, thinking “what is the point”? I felt defeated, lonely, misunderstood and confused.

Fast forward to beyond a few more years of trying and failing, it wasn’t until I re-educated myself to become a nutrition coach that the coin finally dropped. I finally understood how the body really works, what effect carbohydrates have on it (and especially so on someone who doesn’t even make insulin), and that I had been terrorizing my own body with sugar for all those years. In the belief that I was doing the right thing, I had listened to my health care team and believed them blindly when they said that “not eating carbohydrates as a diabetic” was “extremely dangerous”.

I slowly took my health into my own hands, I slowly started reducing the amount of carbs I ate. I slowly started doing my own research on what actually works and what doesn’t when it comes to diabetes. And I slowly started to understand.

Understand that I had been lied to for 26 years. Understand that my body had been beaten up badly on the inside. Understand that I could have saved myself so much pain and suffering, had I only thought a little bit ahead. And, understand that I was in for a rocket ride in terms of my health, well being, blood sugars and A1c improvements.

I’ve honestly never been as well as I am today, 4,5 years after starting to figure things out. I’ve been able to reduce the amount of insulin I take to ⅓ of my previous dosage, my blood pressure medicine by half and my A1c has gone from double digits to under 6%.

Although the food part has been a huge step for me, it’s certainly not the only thing that has helped me. In my opinion, there are three basic things that you need to figure out in order for diabetes to cooperate more: food, lifestyle and mindset. And only once you figure out what works for YOU will you see the results you’re looking for. Diabetes is so individual, every treatment plan is unique.

This is also the reason for me doing what I do today. As a diabetes lifestyle coach, I help other people with diabetes to find their way of living a fantastic life with, and despite, diabetes.  (See http://www.hannaboethius.com/.)

My personal journey hasn’t been easy so far. The amount of tears I’ve shed, panic I’ve felt, horrible news I’ve gotten, amount of things I’ve tried aren’t few, and should definitely not be denied. It’s been part of my journey, and it’s helped shape me into the person I am today.

Perseverance, stubbornness, resilience and tough skin are all vital characteristics for living with diabetes. You live and you learn, and you need to be thankful for what you’ve got, but most importantly, you can never, ever give up.

“Life is not over because you have diabetes. Make the most of what you have, be grateful.”

– Dale Evans Rogers

Diabetes Burnout

I’ve seen it before. Nine years back, slumped on my kitchen floor, unable to move another step. It got me so good, I couldn’t even figure out how to get up.

I sat there in a puddle until my husband recognized what was wrong and what needed to be done.

It wasn’t low blood sugar that demolished me, though. It was burnout. And at that moment in time, it had burnt every last piece of me.

I had been fighting diabetes for a solid twelve years without any support. Sure, I checked in with my doctor every three months to have my efforts graded based on one solitary blood test and then sent away. But that was the closest I ever came to talking to any person besides my husband about diabetes.

I was fighting alone and I was starting to lose. The fix was to find other people to fight alongside me.

After my husband demanded that I take the day off work and spend some time for myself, I went online to find other people who were fighting diabetes the same way I always had, through adventure.

Over the next few years, I dove in deep with the amazing crew of people living right around the corner from me who were running marathons, racing Ironman, and going on climbing adventures as a way to deal with diabetes.

Over time, the diabetes burnout faded and was replaced by a fellowship that, not only increased my knowledge of the disease, but surrounded me with people who understood the emotional aspects of a life-long situation that has the ability to suck the life out of the best of us.

I began to share my story with people who might not have had the built-in community that San Diego is so blessed to have. And for the past seven years, I have been going on outrageous adventures and sharing them with anyone who wants to listen.

In 2011, I sailed 100-miles down the Florida Keys alone because my first endocrinologist told me that as a person with diabetes, I would never be able to sail alone again. In 2012, I wrote and published a book about that first trip, Islands and Insulin, an adventure in itself. In 2014, I led a team of Type 1’s in a 12.5-mile Swim Around Key West. 2015 brought another 100-mile trip, this time on stand up paddle boards in the Intercoastal Waterways of North and South Carolina.

Every adventure gave me a year of intense physical training, which, as we all know, is essential to having good blood sugars. Each one introduced me to a new group of people.  And each stretched me as a person as I learned to share my story with larger audiences, a very difficult thing to do as a naturally introverted person.

Now as I finish out 2015, I have begun to notice the signs again. Each September, I begin to dream and plan for the next summer’s adventure. This year, I couldn’t decide on an adventure. The natural excitement this time of year usually brings was noticeably missing.

I stopped writing. I stopped posting anything on social media. I stopped reaching out to make plans with friends. I climbed further and further into my introverted cave.

I let myself off the hook and decided that, for all of October, I would not do any work for the Sea Peptide Salties, the website I run as a vehicle for sharing my story. When October passed, and I still had no excitement, I finally realized the scope of what I was dealing with.

In endurance training, athletes walk a fine line of pushing their bodies to their max without pushing too hard for too long. Without any athletic stress the human body will not get any stronger. Runners run longer each week. Weight lifters increase their weights and reps. Paddlers will paddle more and more miles.

But, if too much stress is applied, athletes will go into the dreaded “over-training.” Their bodies no longer get stronger and faster; they get weaker and sicker. It can take three to six months of serious rest to get back to training again. There are no short cuts.

However, if an athlete recognizes the signs of impending over-training, a zone doctors call “overreaching”, and can rest appropriately, they can avoid a six-month hiatus. A few days or a few weeks off, followed by a redesign of the training plan that brought them to the brink of over-training in the first place, will fix the problem before it becomes disastrous.

My lack of interest in next year’s adventure and my desire to drop off the face of the diabetes world were early warning signs of impending over-training.  After spending every waking moment fully invested in my day job, in helping my kids to grow, in enjoying my relationship with my husband, tending to my diabetes, and in going on and sharing my wild adventures, I was overreaching.

If I kept up that pace, I would burn out. I would throw in the towel on the Sea Peptide Salties. I would have to take off years to recover. And we all know, with a disease like diabetes, you don’t get to take years off without some horrible consequences.

If I was going to do a good job with my health over the next 58 years of life that I have left, and continue to try to help others, I had to do something before I got to over-training.

As soon as I discovered this, I scrapped my plans for another 100-mile adventure in 2016. But I can’t motivate myself to exercise unless I have some sort of adventure on the books, so I had to do something.

I needed something simple. Something more medium-sized. Something that takes about ten minutes to plan. And I needed to do it with someone I know so well that I won’t be stretched to be outgoing with people I don’t know.

With those requirements, the adventure I had to go on became clear. It would be an overnight backpacking trip with my best type 1 adventuring buddy, Michelle.  After an afternoon planning, the trip was set.

Hundreds of hours planning, training, building a team, securing sponsors, and getting media coverage had now been taken off my schedule for the next year. I was left with the unheard of “Free Time.”

After making this decision, the first time I found myself sitting and not doing anything, I realized it had been about three years since I spent any time doing nothing. Every minute had been utilized to accomplish one goal or another. Most days it was well after nine at night before I sat down for the first time. Well, more accurately, collapsed.

And now I was watching TV, playing with my kids more. This November, I turned off my automatic sprinklers and watered my yard with a hose, just because I had the time to do it and because it was so relaxing. I sat in the sun, and just sat. I didn’t return emails or write blogs or work on the Adventure Academy. I just sat and did nothing.

So far it has been amazing. My desire to go out and paddle again is coming back. I am excited to start writing again. Slowly I can feel the overreaching start to fade. I am coming back out of my cave.

We all walk a fine line between wanting to do everything we can to combat this disease and doing too much. And we have to walk this line for the rest of our lives (or at least until one of the many cure possibilities makes it through the FDA and we get our insurance to cover it).

There are so many amazing things we can do to stay healthy. We test. We shoot up. We analyze data that would make any statistician cry. We worry and cry. We exercise and stress. We share our heartache publicly. We support others in our community. We fight our insurance companies to do what is right. We fight our politicians to do what is right. We fight employers to treat us with dignity and compassion.  We try not to worry our loved ones with our ups and downs.

But if we fight too hard, if we don’t look up once in a while to notice when those first signs of over-training arise, we will burn out.

With all we have to carry, we need to remember that it’s ok, every once in a while, to let ourselves off the hook and just kick back. To sit in a chair and enjoy the beauty around us. To surround ourselves with people who let us be ourselves without having to try.  To not accomplish anything for a day, or at least for an afternoon. To do nothing.

As this year wraps up, it may be a good time to take stock of your current level of burnout. Are you at a point where it may be necessary this year to let go of a few things that you have convinced yourself you have to do, so that you can still do diabetes well? Maybe you just need a good weekend off. Maybe you are at your prime right now and can carry a few more burdens for those of us who need a momentary rest.

Whatever your level of burnout, take stock this year. Take stock every year. Don’t let diabetes burnout sneak up on you. Attack it before it gets the best of you.

Very Light, No Sugar

I currently work full time in Veterans benefits.  At the end of this month I will have my Master of Science in Healthcare Administration degree from Salve Regina University in Newport, RI. I have been blogging for a little over a year now, and it has been exciting to learn from various perspectives in the healthcare field. I look forward to putting my degree to good use.

How do I live my “lyfe” with diabetes?

Each day with diabetes is different. Diabetes is always there. Some days it roars loudly and persistently. Other times, it is reduced to a quiet lull in the background.

Diabetes is like the pesky younger sibling who wants to hang out with the cool older kids on the playground. The situation is tolerable; yet sometimes it is a nuisance; yet sometimes you still love it for opening up your heart to the goodness in the world. For me, type 1 diabetes is all of the above, all of the emotions, the ever-present giver-of-perspective.

I live my lyfe with diabetes because this is the life that I was given. Everyone has a cross to bear. Diabetes is mine. I refuse to lose hope of attaining a cure for diabetes in my lifetime because we have a moral obligation to leave this earth better than we found it. Our accomplishments already prove that anything is possible with diabetes. Why not make the journey a bit easier for future generations by advocating for and obtaining a real cure?

The best advocacy we can provide is to live well despite diabetes. Recently on my way to graduate class, my continuous glucose monitor sensor (a device that alerts me to my blood sugar range) was acting funky. I stopped my car in a grocery store parking lot so that I could change the sensor site before class. Admittedly, I was a bit grumpy about the inconvenience. But I only flinched for a millisecond as the needle shot into my abdomen. Afterwards, I drove to class and greeted my friends, who never would have guessed what I had just done in order to maintain my health while we studied.

This example illustrates how the everyday moments with the disease are often unseen, our strength humble as we show up for our jobs or our classes after tending to our health. These unspoken moments where diabetes strives to interrupt lives are frequent; yet in order to live, we have to keep going.

Being transparent about my lyfe with diabetes has allowed me to foster genuine connections with others. Professors and classmates have trusted me with their own stories of adversity. Online communities with worldwide membership are linked through the common thread of advancing healthcare. Diabetes is often the conversation-starter. Human connection and resilience are the morals of the tale.

There is still lyfe to be enjoyed despite diabetes, or whatever cross one bears. All of these brave people have showed me this is so. I challenge you to be that example for someone else.

Thank you

Live Kidney Donation and Life Insurance

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In June 2015, my Home and Auto insurance provider, AMICA of Rhode Island, sent me a letter offering Life Insurance under very favorable conditions. I expressed my interest and was told that the premiums required for the insurance would be based on the results of a medical examination.

The results of this examination were quite normal except for some renal parameters that had changed irreversibly after my kidney donation in March 2009.

According to the medical experts of Columbia Presbyterian Hospital in New York, kidney donors have increased Creatinine levels and reduced glomerular filtration rates (GFR) compared to their pre-operative baselines. However, unlike other patients with reduced GFR, kidney donors are not at higher risk of end stage renal disease (ESRD) or cardiovascular complications.

The leading medical research centers and organ transplant centers of the US, including Mayo Clinic, Columbia Presbyterian, University of Minnesota, University of Alabama, UCLA, etc.[1], all inform prospective live kidney donors that both their quality of life and life expectancy will stay about the same after the kidney donation.

As with all surgical procedures, there is a risk involved in extracting a kidney, but outcomes are generally positive and life expectancy, as studied by Ibrahim et al in a paper published in the New England Journal of Medicine (NEJM 2009, Vol. 360, pp 459-469), is similar to that of persons who have not donated a kidney. Those findings were also confirmed in a study  by S.J. Taler et al, published 2013 in the American Journal of Transplantation (Feb 2013, Vol. 13(2), pp 390-398).

These results are hardly surprising: Kidney donors are screened for underlying kidney disease and therefore represent a sub-segment of patients high above average in physical fitness and healthy habits. It would be an expensive waste of medical resources to transplant the kidney of an unhealthy donor, and it would put both the donor and the organ recipient at high risk.

In view of all the above, I was surprised to learn that AMICA determined that an adequate risk premium for my “poor renal health” would be $30,000 over 10 years. I was informed by the AMICA Life Insurance underwriting department that insuring people like me at normal premium levels would bankrupt the company. When I explained the reason for my “abnormal” renal parameters and provided a letter by Columbia Presbyterian, I was informed that they their procedures could not take into account events such as a kidney donation.

My next step was to write a letter to AMICA’s CEO, Mr. Robert A. DiMuccio, to give him an opportunity to correct the mistake made by his underwriting department. I attached the letter from Columbia Presbyterian and provided statistical details regarding the life expectancy of kidney donors.

Five weeks later I received the final verdict: There was no way AMICA would reverse the $30k kidney donor penalty, because my poor renal health was putting me into a high risk category.

This final decision was not surprising, given the fact that AMICA’s CEO conveniently referred my case back to his underwriting department: The same “medical experts” who were previously unwilling to evaluate my renal parameters in the context of my kidney donation, were asked a second time to review my case.

What this AMICA experience has done to me is to further strengthen my resolve to exercise 45-60 minutes daily, and to stick to healthy food only. I cannot control my risk to suffer from an accident, but I can optimize my lifestyle to ensure renal health and hopefully extend my life expectancy.

The AMICA experience is also making me think about ways to help increase the number of live kidney donors, currently at the 6,000 level in the US.

The mission of the American Transplant Foundation[2] is to save lives by reducing the growing list of women, men, and children who are waiting for a transplant. ATF does this by maximizing living organ donation, which is the most effective way to fulfill its mission.

On average, 21 people die every day from the lack of available organs for transplant. Seven percent of people on the waiting list—more than 6,500 each year—die before they are able to receive a transplant.

For ethical reasons, it is not allowed to buy or sell human organs in the US. So how could more prospective live donors be incented to help patients in need?

Certainly not by learning how AMICA is handling the underwriting of kidney donor life insurance!

But how about the following: Could prospective donors be encouraged by their families to make a life saving sacrifice if they would be offered a FREE life insurance until, say, age 75 or 80?

Which Life Insurance company would be willing to take this step that could potentially eliminate the donor bottleneck? And which charitable foundation would underwrite the expense for such an initiative, and perhaps even sponsor more research and follow-up?

Take your power back as a diabetes patient!

unnamedLiving with diabetes is difficult. Let’s not deny that.

Sometimes more so, sometimes less. On a day-to-day basis, there are many ways you can make it less difficult.

And then there are those times when it all becomes just difficult.

You feel unsupported. Alone. Misunderstood. Frustrated. Angry. Unheard. None of which help your blood sugar to stay stable either, right?

One of these instances that many a diabetes patient has experienced at least once throughout their diabetic career, is at a doctor’s appointment.

Not only do you have to see various types of doctors regularly, but it seems as though most of them don’t even listen to what you say.

You know what it’s like. You explain your case, how you’ve been feeling and what’s going on with your blood sugars, which don’t seem to make any sense, not in this, nor in any other possible parallel universe.

And all your doctor says is something very comforting along the lines of: “well, to me, it just doesn’t seem like you’re trying hard enough!”

*sigh*

It’s just as if they haven’t even heard what you just said, or, alternatively not even cared one little bit.

But what about if you have been “trying hard enough”, done everything in your power to get diabetes under control and, if for no other reason, not have to listen to that one sentence being said at every appointment? What are you supposed to do then?

For a long, long time, all I did was say “yes, doctor, I’ll try harder for next time.” And I’m sure you’ve done it, too, if only to get out of the doctor’s office and go back to your, apparently, according to them, unfulfilled life.

As soon as I got back home after those appointments, things got back to what used to be my normal. I’d do exactly what the doctor told me to do – try harder with all the tips, tricks and tools they had given me. Which only left me as disappointed the next time I had to endure another doctor’s visit.

I’m not certain when I had had enough of this circus, actually. But one thing was for sure, I felt I couldn’t keep disappointing myself like that anymore. I cleaned up my act, what I ate, how I exercised, how I viewed blood sugar numbers and what role my doctor played in this cobweb that is diabetes care. This took me quite a long time as I did it with baby steps, very gradually.

This was despite my mother always telling me since I was diagnosed with Type 1 Diabetes at the age of 2; “you are your own best doctor”. What she meant by this was NOT that I could just ignore health care professionals opinions and treatments, but rather that I know my body the best, only I can feel what treatment (or anything else) is the best for me and only I have the power to make the necessary changes to my care to make diabetes-magic happen. Sure, my doctor can help, advise, check and support me, but ultimately I’m the one who needs to make the decisions regarding my own care. And that requires a lot of preparation, skills and knowledge. Oh, and a little dash of courage, too.

I want to share my 5 best tips on how to become so confident during a doctor’s visit that they can’t help but listen to what you’ve got to say.

1. Knowing your options

I can’t tell you this enough: Research. Your. Options. It’s about keeping up to date with new tools, new science and new helpers.

Often I’ve arrived at my doctor’s office with a bucket full of new information that I’ve spent time and energy researching, only for us to come up with some kind of awesome solution to whatever is going on right there and then. A solution that my doctor, nor I had thought of. We got there together because I brought her new information.

Also, knowing what your test results mean without having to rely too much on your doctor to explain them to you is pure gold. That way you can get to a solution quicker as a team, as well as it enables you to be able to ask for extra investigation (i.e. more tests) should they be necessary. This goes for all test results, from HbA1c to thyroid tests to cholesterol to vitamins and minerals.

It also gives you the power to say no to suggested treatment options that you, through your research, have found out won’t work for you. For whatever reason.

This is a lot about taking responsibility for your own care. Knowledge is power!

2. Your Dream Health Care Team

This is one of my favorites!

Assembling your Dream Health Care Team is essential for you to get access to the best care for you and your needs.

What does this mean? As soon as you can’t be completely honest with a healthcare professional and your relationship isn’t working, it’s time to look for a new one.

For example, say your endocrinologist only wants to push more medications on you, whereas you would like to explore options for as long as you can, is when it could be in your best interest to find a new endocrinologist whose thoughts are more aligned with your own. This goes for any healthcare professional, from the aforementioned endo to CDE to nurse to nutritionist to ophthalmologist to GP.

In the end, you’ll end up with an awesome Dream Health Care Team that you know has your back whatever may or may not happen. I know I love my Dream Team of ladies helping me with whatever I need!

3. Get to Know Superheroes

Batman, Superman and Catwoman are all on your side!

Jokes aside, superheroes in this case means people that are going through the same thing as you are; other diabetes patients!

The absolute easiest way to do this is through the diabetes online community, or DOC for short, where you can find all kinds of diabetes related questions, issues, stories, experiences, and, first and foremost, help and inspiration to find a solution that suits you.

So check out a few diabetes related Facebook groups, blogs and forums. Your questions are there to be answered, preferably by people who have gone through the same thing themselves and live with diabetes 24/7.

4. The Fine Line

Empowering yourself with all this knowledge is fantastic. And necessary. But it can also easily come to a point where it’s all just too much.

Watch out – knowing too much and being a besserwisser about it is annoying. For everyone involved.

There is a very fine line between being annoying and being just-informed-enough-to-get-your-point-across-efficiently. If you push too much, the only thing you’ll achieve is to leave both your doctor and yourself feeling frustrated and unwilling to find the best possible solution for you. You still want your doctor on your side; they’re the key for you to get exactly the help that you need.

Remember that your physician also has years of experience with you and other patients individual forms of diabetes, so completely dismissing their opinion and suggestions is just as silly as just accepting everything they say. You need to find the fine line between these two.

5. Celebrate!

Don’t forget to celebrate!

Celebration is unmatched in terms of effectiveness for motivation and continued self care, especially when it comes to people with diabetes.

And it’s all about celebrating the small stuff, like a great blood sugar reading, a well-bolused meal, correctly guesstimating your basals for exercise or a successful visit to the doctor’s office.

The more small things you find to celebrate, the more you are able to appreciate yourself, with diabetes being a part of that self.

Learning these steps and daring to take them in preparation for, and during, your next doctor’s appointment is a very courageous, yet necessary thing to manage your ride with Diabetes as well as you possibly can.

“You are your own best doctor.” Remember that.

Winter and the BUGS

Autoimmune diseases such as MS, Rheumatoid arthritis, psoriasis, Crohn’s and ulcerative colitis all have the basic problem where the individual’s immune system turns against itself as opposed to fighting the outside world. Something beyond the genetic set up is needed to trigger the disease and so far, celiac disease (or gluten intolerance) is the only autoimmune disease where we know what the trigger is – gluten. There are about 100 different autoimmune diseases, and in the US alone, about 50M people suffer from one or more of these conditions.

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Type 1 diabetes is also an autoimmune disease, but in contrast to the ones I mentioned above, the treatment is rather different due to the progression of the disease. When a person is diagnosed with T1D, their insulin-producing cells are almost already all gone. Although scientists have shown that the human pancreas may have some regenerative capacity under certain conditions (obesity and pregnancy for example), we are not leveraging that in today’s clinical practice since there is no drug approved for that purpose yet, and we have not come up with a safe way to combat the immune system at the same time. That is the very issue with T1D, it is a constant battle between the body’s own immune system which is trying to destroy insulin-producing cells, and the lack of the body’s regenerative capacity in the pancreas. This battle can be distorted for years, and that is why some people are diagnosed as toddlers while others in their 40s! When one is diagnosed as an older individual, most often the disease is less aggressive, and perhaps these individuals still have some cells left and thus some endogenous (their own) insulin capacity.
Back to the contrast with other autoimmune diseases – in diabetes the treatment is to replace the missing hormone, insulin or to enhance the effects of insulin, while in other autoimmune diseases the treatment is to reduce the autoimmune attack since the tissue that is being destroyed often is regenerated in between flares. For example, in Crohn’s disease, the intestine is the target, but during long periods of time, there are no symptoms at all, and the goal of course is to maintain that status for as much time as possible without impacting other functions of the immune system.
So what are the risks now that we are entering the winter months? Well, for one, the flu season is upon us, children are gathering inside rather than outside, incubating their germs and spreading them more easily. There is no good scientific episode to show that the cold weather would trigger virus and bacterial infections, but common sense still says we seem to get sicker when we are cold. A person with an autoimmune disease, who needs daily medication to inhibit the immune system from destroying an organ system or tissue, is more vulnerable to catching and developing a more serious infection. The bigger problem is when the individual has caught an infection, and it spreads, since the best way to limit the damage is to improve one’s own system, but by doing this, the autoimmune disease is less restricted and can cause a flare.
My personal situation is further complicated by two organ transplants and the medication I am taking to reduce the risk of rejecting those organs. When I develop an infection, my doctors often reduce the amount of immune suppressing medication I take to allow for my own system to get rid of the infection in addition to quickly determining what the agent is that we are dealing with so that the right kind of anti-infective medication can be put in place. Targeting the virus, bacteria or parasite correctly and quickly is of utmost importance, and today’s analytical equipment is quite sophisticated but it still often takes days for the final result. Prior to having that, the doctors often prescribe some super duper antibiotic to kill off a majority of bugs, and in my case, that lead to opportunistic bugs taking over last year and three bouts of clostridium difficile ensued. When the immune suppressants have been reduced, I face two major threats, one being rejecting my kidney and pancreas on the basis of foreign bodies inside my body, and the second one my own autoimmunity may flare up and start attacking the new pancreas, like it did my first one.
My advice to anyone with an autoimmune disease, or with an organ transplant, is to try to avoid getting sick! Easier said than done, and one cannot live one’s life inside a bubble, but there are a few simple precautions:
1: avoid interacting with large groups of people (especially young children) inside during the winter months

2: wash your hands after using public transportation and before having food or drinks

3: do not eat any raw foods in restaurants, including pre-cut fruits

4: ask for water without ice when traveling to exotic places

5: if someone at work or in school is sick, do not interact with them

6: as soon as you start feeling a cold coming on, take precautions such as hydrate, rest, and if you have a temperature, seek medical advice asap

7: make sure you have taken the flu shot and any other vaccinations appropriate in the locale you are residing

Insulin vs. the Clock

The clock is one of my dearest friends. At least, when it comes to controlling blood sugar.

I know this sounds silly. But it turns out that insulin does not always get absorbed at the same rate. And knowing when and how to make the correct adjustments has made an incredible difference for my health.

It’s all about timing:

I’ve been insulin-dependent for over 25 years. But only recently have I begun to realize that correct timing is one of the best ways to keep my blood sugar stable.

I use an insulin pump, a continuous glucose monitor, and a glucose meter for type 1 diabetes. The pump gives me insulin in two ways:

  • basal insulin: This is a constant drip. It’s set at various hourly rates throughout the day to reflect my activity levels.
  • bolus insulin: I take these kinds of doses for food or to correct a high blood sugar.

Sustained Activity Adjustments:

Thinking ahead is key for any type of sustained cardio activity, especially when it’s outside of the daily routine. Even a thirty-minute walk can affect my blood sugar. So one hour before I start exercising, I lower my basal rate. For example, if I plan to hike two hours, I take a decreased amount of basal insulin for two hours. The reason I do this an hour ahead of time is because the insulin tends to be on a one-hour delay. So lowering the basal from 1-3pm would set me to be receiving that lower basal from 2-4pm.

Cardio Workout Adjustments:

“Beep-bep-beep!” I have an alarm set in my pump that reminds me to adjust my basal setting for more routine workouts. It goes off one hour before my cardio fitness class usually starts. Since I don’t take the class every day though, I have two different responses to this alarm:

  • If it’s a day that I won’t be working out, I just silence the alarm.
  • If it’s a day that I will be working out, I set a one-hour temporary basal rate. I’ve found that lowering the rate to 75% of what I usually take is about right to keep my blood sugar stable throughout the class.

Extended Inactivity Adjustments:

Once in a while, I am subjected to day of sitting. For times like this, I increase my basal rate. For example, if I’m going to be in a car from 1-5pm, I raise the basal rate from 12-4pm. Setting the rate to 140% of what I usually take keeps my blood sugar from creeping up while I’m traveling.

 Heavy Weightlifting Adjustments:

I’ve heard that heavy weightlifting can increase your blood sugar. But this never seems to be the case for me. I usually lift weights for about 30-40 minutes, and leaving the basal rate as-is works just fine. Maybe I need to look into lifting even heavier weights J

Treating a High:

I don’t like high blood sugar. When treating a high, my initial reaction is to take a whole bunch of insulin as soon as possible. But I’m working to control this impulse, since it usually just makes everything worse. Instead, I take a correction bolus and wait. The correction bolus will work towards bringing my blood sugar down over the next three hours. So I generally avoid taking any more insulin during that time. And if I’m patient, I’m usually rewarded with the beginning of a gentle decline on my pump sensor graph within an hour.

Post-Fasting Adjustments:

If I haven’t taken a bolus for food in the last six hours, my body goes into a state of delayed insulin absorption. To accommodate this delay, I take my breakfast bolus and then wait. It can take 30-60 minutes for the insulin to affect my system. I keep an eye on the clock and my sensor graph. After 30 minutes, I check to make sure my blood sugar isn’t going up, and then I start eating before it begins to drop.

Happy Timing!

I hope you found this article to be helpful. Feel free to leave a comment or check out more of my articles on twitter @Robinrjsmith.

Treating Patients for the First Time

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Like most diabetics, I’ve spent my fair share of time in the doctor’s office. Sitting up in the patient’s chair, talking about my most recent A1c and blood glucose trends, my experiences thus far have all been on the receiving end. Well, for the first time, I recently flipped the switch on what’s been a routine in my life, and became the provider in charge of my own diabetic patients.

As a first-year medical student, I have the opportunity to volunteer my time on the weekends to a free, student-run clinic that hosts different specialties including: regular adult care, pediatrics, and diabetes. We see patients and more or less take the place of a primary care physician for routine health matters. A number of medical students, pharmacy students, nutritionists, and at least one licensed attending physician collaborate to provide care and set health plans for these patients who may otherwise never be seen by doctors.

The free clinic is named the Health Resource Center (HRC), and is strategically located in the 63113 area code, a low-income area in the northern region of the city with some of the highest problematic health disparities in St. Louis. This small strip of the city has one of the smallest general populations, but is among the highest in death rates, dropout rates, and diabetes[i]. While such an area requires a multifaceted, interdisciplinary plan of attack in order to truly solve these disparities, as future healthcare providers, we believe increasing care and education through a free clinic is a step towards the right direction. So when I first learned of the diabetes-specific clinic day, I jumped at the opportunity and signed up immediately. What better way to gain my first, real clinical experience with a degree of responsibility than to treat patients with the disease I’ve essentially grown up and evolved with over the last eleven years? I was excited for the first chance to showcase my abilities as a not just a future physician, but also as a health coach and instructor.

I saw two patients that day in the clinic. Each was significantly older than I am. This will likely mostly be the case, at least for the start of my career, but the fact that I am brand new to this role is why seniority plays a part in my apprehension. Although I will become, and am already well on my way to being qualified, I still marvel at the way that my current status gives me to the right to instruct grown adults on the way to live their lives.

My first patient had just recently been diagnosed with diabetes. My job (thankfully) was not to break the news of his diagnosis, but to now educate him on everything that comes next. I had to dissolve my intellectual bias and teach this patient concepts that have been engrained into my consciousness such as: testing blood sugar several times throughout the day, what a hemoglobin A1c was and how to lower it, and signs and symptoms of high and low blood sugars. The man was elderly, but in great physical condition. The attending physician and I decided he could likely greatly reduce his symptoms and even possibly reverse his diabetes just by making some significant changes to his diet.

My second patient was actually diagnosed with diabetes in the early 2000s and therefore has actually been managing his condition longer than I have. In contrast to my first patient, he already knew much of the key points in controlling diabetes, this trip to the clinic was more about fine-tuning his techniques on a path to reclaiming his life in the form of healthier habits. Having already completed the visit with my first patient, I was much more calm and less anxious about my role delivering sound advice and helping this next patient achieve his health goals. Years of researching and experimenting ways to manage my own diabetes finally came to form. I was able to package information from the American Diabetes Association, the advice of the attending physician, and my own personal knowledge and experience in a structured nutrition and exercise plan for this patient to take home and implement in his everyday routine.

Treating just two patients in a day is the equivalent of chipping away at a wall with a teaspoon. While I was able to successfully aid in not only treating patients, but helping further their education, there is still much work to be done in achieving health outcome equality. The continuing work of the HRC will have to be supplemented with nutritional, pharmaceutical, and exercise programs outside of the clinic. I hope to drive forth these causes as I move along the road to becoming a physician. That day was the first of many where I will be depended on for care and instruction. As these experiences come, my confidence in my ability grows as I fulfill my calling.

If you are located in the St. Louis area and would like to find out more information about the Health Resource Center in, please email us at hrc@slu.edu, below is the address to the clinic:

Health Resource Center- Saint Louis University School of Medicine

1408 N Kingshighway Blvd, Suite 213

Saint Louis, MO 63113

Phone: (314) 389-0008/ Fax: (314) 696-2671

 

Website: https://sites.google.com/a/slu.edu/health-resources-center-saint-louis-university-school-of-medicine/

 

Regular Clinic Hours are held every Saturday from 9:00 am- 12:00 pm, with signups starting at 8:30 am. Patients are served in order of arrival.

 

For more stories and health tips, follow me along my journey through medicine.  @roychealth

 

[i] City of St. Louis Department of Health, 2012

Traveling with three kidneys, two pancreata, and a pacemaker!

Living life with a chronic disease is at best a daily battle, but most of us don’t have a choice other than just soldiering on. Traveling makes life even more complex, but why should we forego the pleasure of seeing new or familiar places across the world simply due to chronic illness?

I recently went on two business trips on behalf of Lyfebulb, that I really enjoyed thanks to the people I met, the discussions generated, but also the different atmospheres and food that I had the chance to sample. I used to dose insulin many times daily, and with time changes and new environments inherent with travel, the control of my blood sugar was difficult to manage. Since I received a kidney and a pancreas transplant, other issues have arisen, but my sugar seems to be unaffected thanks to the functioning pancreas!

So what are the issues?

First, I can no longer pass through security at airports due to my newly implanted pacemaker! The pacemaker protects me from passing out at inopportune occasions, such as when I was hailing a cab outside my building on the Upper East Side in February, or when I found myself face down on the floor of a public ladies room in June. Embarrassingly, I also passed out in the street walking home after a doctor’s appointment! These incidents were not only inconvenient, but also extremely dangerous.  What the doctors realized after a number of tests, including placing a small device under my skin, was that my heart had stopped several times, and that was the reason for my syncope (medical term for passing out). To avoid this from happening again, I received a so-called Managed Ventricular Pacing (MVP) Device, made by Medtronic in June of this year.  It kicks in when my heart rate drops 25 beats over a period of 10 seconds, or if my heart rate drops below 50 beats per minute. In the first case, the MVP pacemaker will take my heart up to 100 beats per minute over two minutes and in the latter case, it just pushes my heart back to 50 beats per minute. Having this device prevents me from hurting myself due to passing out, and has made my circle of family and friends feel more secure regarding my safety. So, being patted down or going through the alternative detector (with a bit higher radiation) is a small price to pay!

Thanks to the transplanted kidney I received in March of 2009 from my father, I do not need dialysis and I am free to travel, work, exercise, and live an almost normal life. My transplanted pancreas, which I received in January of 2010, makes my life truly worth living again! It is remarkable how much better I feel now as compared to how I felt as a diabetic dependent on insulin injections. I did not realize how bad it was before receiving the pancreas, and having normal glucose control. The obvious improvements are clearly the reductions of severe hypos (sugar-lows), and the elimination of the really high sugar values.  However, I did not realize how much insulin dependence impacted me! It is also an incredible quality of life enhancer to be able to skip meals, or eat when I want to, since I do not need to match what I eat while dosing insulin. As a diabetic using insulin, I had to be so careful. Even the milk in my coffee could put me a roller coaster of sugar highs and lows. These issues are no longer present, but since my two organs are foreign, I need to take chronic immunosuppressive medications, which make me more sensitive to infections and certain kinds of cancer. Traveling poses risks for everyone due to the confined space in the airplane, the many people we meet at airports, and the different types of bugs we may encounter. Lately, I have tried to take a few precautionary steps when traveling:

  1. Stay hydrated and rested. One cannot overestimate the power of being hydrated and having had enough sleep. I thoroughly believe we lose power and immune defense mechanisms when we do not take care of those basic principles. When I get on a flight, I try to sleep as much as I can, and I try to arrive at my destination a day before the important stuff to acclimate and rest. As a young, healthier person, I would travel the day of meetings, often overnight to avoid missing daytime work. Now, however, at the age of 43, and with all my issues, I plan differently. I also constantly either carry a bottle of water, or ask for water on the plane or in meetings. It is clear that we lose fluids, and the most obvious signs are our skin and hair, but more importantly for me is my single kidney, which requires heavy hydration to fulfill its function of clearing of toxins from my body. You can determine whether you are hydrated enough by checking amount and frequency of urination, as well as the color of your urine. Once your urine turns from light yellow to a darker color, you know that you are dehydrated. I am also not afraid of asking my doctors for sleeping pills prior to travel. It is hard to adjust to a new time zone, and for me, zopiklone (Ambien) works wonders.
  2. Bring clothes that aren’t clingy or too tight. Despite all the hydration, I seem to swell somewhat when I travel. This is probably due to my single kidney not being able to dispose as well of the fluids, or maybe my veins not being able to shuttle back the blood, or perhaps that travel increases the permeability in the interstitial tissue and one gets some edema. Thus, I always wear support stockings on the plane, and often the first few days abroad too. They make pretty nice-looking ones nowadays, and with lesser pressure than the past – just enough to avoid having heavy legs that don’t fit into the shoes or boots you want to wear. I like bringing layers when I travel, since the air on the flights is often cold and spending time at airports or in the elevated AC in meeting rooms do not agree with my internal thermostat. I save the pretty figure-hugging dresses for when I am back home or if I go away for a longer period and have time to adjust.
  3. Do not drink alcohol. When I travel for work I hardly ever drink alcohol. I definitely never drink on the plane and very rarely at business dinners.  When I travel I have a maximum of a half glass of red wine, since the alcohol dehydrates you and makes the time adjustment even more difficult. I also find that alcohol makes me swell, so I avoid it unless I am away for a longer period of time and for more of a social purpose.
  4. Eat things you know you can handle. This is a lesson I have learned the hard way! I love experimenting with food, and trying new things, but I save that for when I am home, or if I travel for a longer period of time and the trip is more for pleasure than business. Even then, I stay true to my preferences and avoid anything raw, spicy, or foreign. I tend to eat similar things daily: yogurt (plain) with nuts and cereal in the morning, bananas and nuts throughout the day, for lunch I try to have a vegetable soup and some whole grain bread, and for dinner grilled or boiled vegetables with a grilled piece of fish. I seem to have many more small meals when traveling, since it is harder to get all my calories in the main meals when I am not sure what I can get. Thus, I will grab a piece of toast or crackers in between meals, and the carbs seem to settle my stomach. I had a terrible experience last year due to salmonella poisoning from either a salad or under cooked shrimp, so I stay away from raw veggies, cut fruit, and any shell fish. Some people enjoy coffee when they travel, but my drink of choice is definitely tea. Simple English breakfast with a tiny bit of milk is delicious, and even better with a piece of dark chocolate or biscotti…

Sometimes despite all the best intentions, we cannot prevent getting sick while traveling. This has happened to me a few times, and I try to prevent a catastrophe by learning about my destination ahead of time from a medical care perspective. Going back to Sweden obviously does not involve risk for me, since I studied at the Karolinska, and know the hospital well, but if I go elsewhere, I try to do some research on university hospitals that have transplant and cardiology expertise. It is important to travel with your drugs, your list of medications, and some extras to have on hand. I tend to bring Tylenol, Imodium, my sleeping pills, and some vitamin C. I do not bring antibiotics since I am careful not to overuse them for a few reasons: 1) I don’t want to aggravate the resistance that is already growing in the world, and 2) It is critical I get the right kind when I get sick, since taking the wrong kind can exacerbate the situation. Obviously NEVER check your medication, but carry them with you in the cabin and if you are traveling with someone – let him or her carry an extra supply for you in case yours gets lost.

I am back home now and thanks to all my precautions, I feel strong and did not suffer much from jet lag!

 

My Journey

My name is Shayna.  I am a 35 year old woman living in the Boston area.  I spend my days working as a second grade teacher in a small town outside of the city.  When I am not working you will find me with my friends and family enjoying beach trips, traveling, cooking, shopping, reading, attempting to be a runner, taking photographs, laughing, AND navigating my journey with IBD.

I have the Inflammatory Bowel Disease (IBD) known as Ulcerative Colitis (UC).  Ulcerative Colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.  What information is left out of that definition, is that UC can be a very silent, private, embarrassing, and invisible chronic illness.  I was diagnosed with UC when I was 18 and a brand new freshman at the University of Massachusetts at Amherst.  I was so excited to go to college and be away from the small town I had grown up in.  Instantly I made great friends and pledged a sorority.  Life was fantastic and I really was enjoying my first year away from home.  But around November I can remember waking up one morning in my dorm and feeling awful.  I knew something was NOT right.  I had a fever, pain, I was running to the bathroom constantly, and my stomach was so distended even a light touch hurt.  I was so embarrassed by the never-ending diarrhea I didn’t tell anyone what was going on, not even my mom who is a nurse and who I always went to if something was wrong.  At one point after weeks of suffering I started to withdraw from everything.  I stopped going to classes because I couldn’t make it from one building to another without having to stop at a bathroom.  For the first time in my life my grades dropped and I just couldn’t keep up with the work.  I no longer wanted to hang around with my new friends and sorority sisters, and would spend my nights and weekends in bed watching TV or sleeping for an abnormal amount of time.  Only due to sheer desperation I finally told my mom what was going on.  Within days after telling her she had picked me up at school and I had an appointment with a gastroenterologist (GI) doctor and a scheduled for my first colonoscopy.

On the dreaded scope day I was scared and the awful and miserable prep medications didn’t help at all.  Luckily because my mom worked at the hospital where the procedure was being done they allowed her into the procedure room with me and she held my hand the entire time.  I remember being conscious and the doctor taking one look at my large intestine and announcing that I had Ulcerative Colitis.  In that moment my mind and the world around me went still.  I couldn’t hear what was being said.  All I could think was:  what is Ulcerative Colitis?  He must be wrong?  Not me!  At some point I looked at my mom and she was crying so I knew this couldn’t be a good thing.  We went home that day with some medications that I knew nothing about and started to research IBD.  At the time there was very little information about the disease and the options for treatment were scarce.  I can remember sitting with my mom and making her promise not to tell anyone about my illness, not my grandparents, my aunts, cousins, sister, or friends.  I felt embarrassed because I had already convinced myself that I had caused this and it was my fault that I had this disease.

Over the next four years of college I spent most of the time trying to hide my illness from roommates, friends, and professors.  If I was sick instead of calling the doctor or letting a professor know that something was going on I just stopped going to classes.  I would shut out friends when I was sick and sometimes just go home without telling anyone.  I didn’t take my medications responsibly and truly believed I could live without them.  It was extremely difficult to live the life of a college student and manage a disease that I knew nothing about and wasn’t willing to accept.

Finally after years of failed medical treatments and many, many hospitalizations we reached the point where surgery was the only option.  In 2004, at 24 years old, I underwent major surgery to remove my colon and create an internal pouch called a J-Pouch.  A J-pouch is an internal pouch to hold stool that is created from the last part of the small intestine (ileum) and attached to the anus or the remainder of the rectum. The terminal ileum is sewn back onto itself to form the shape of the letter “J.” This pouch functions as a replacement for my large intestine.  This surgery was done in two separate stages and during the first stage I received an ostomy.  An ostomy is a surgical procedure, in which an artificial opening is made to permit the drainage of waste products outside of the body.  The recovery from this surgery was extremely difficult.  I felt very alone and as though I had no control over my body.  This external bag was not an easy thing to deal with as a 24 year old female.  I felt so different from my friends and was envious of how different their lives were from my own.  BUT with the support of my family I made it through and after 13 weeks the second stage of the surgery was performed, my ostomy was reversed and my J-Pouch was connected.  Surgeons and doctors told me that these surgeries would CURE my disease and I was so excited to start living my disease free life.  Years later I found out that this statement about being “cured” was sadly not true.

In the past ten years, since my original J-Pouch surgery, I have undergone five other surgeries, been hospitalized more times than I can count, developed a chronic medical issue called Pouchitis, taken many medications with terrible and unknown long term side effects, been forced to go on short term disability for months at a time, and suffered from extreme pain and diarrhea because of this unremitting illness.  During my last surgery my doctors found that I also suffer from endometriosis.  Endometriosis is a condition resulting from the appearance of endometrial tissue outside the uterus that causes pelvic pain.  This diagnosis is very new to me and has now become part of my journey.

My illness is part of me every day.  I wake up with it, I eat with it, I work with it, I socialize with it, it comes on vacation with me, I go to sleep with it each night, and because this I have had no choice but to accept it and embrace MY life.  Over the years, I have learned that sharing my story is a gift.  As I opened up about my illness, I was accepted by friends, family, and even strangers who could relate because they knew someone with IBD or had IBD themselves.  I have had the opportunity to share my story with people who are newly diagnosed and I truly know how important it is for them to hear that I understood exactly what they were going through and that I survived.  It is my goal in life to continue the conversations about this very invisible illness and to advocate for myself and for the people who just aren’t ready to speak up quite yet.

I live an incredible life with my boyfriend, family, and friends.  I continue to work at what I believe is the very best job in the world as a teacher.  In spite of this illness I have done so many things…received my Master’s degree and CAGS degree, traveled all over the United States, purchased my first home, and laughed each day with the people whom I love the very most.  There were days where I believed none of this was possible, each day is hard but I AM a survivor, a fighter, and I AM stronger than I ever thought I could be.   I hope you will continue to read about my journey and begin to share your own.  When were you diagnosed?  Are you able to share your journey with others?

Xoxo, Shayna

Lyfebulb Lyfestyle – an Introduction

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Here at Lyfebulb we are passionate about connecting people, inspiring change, and impacting lives.  As we grow, we want to be sure we stay in touch with our community on a regular basis.  Therefore we are excited to share a new series on the Blog, Lyfebulb Lyfestyle, which is dedicated to the holistic lifestyle encompassing Lyfebulb’s pillars.

Every Wednesday you’ll find something new: Blog posts promoting simple but effective health tips or videos showcasing easy, delicious recipes.  In either case, the goal of this new series is to inspire us all to live a healthier life and improve the quality of that life in a way that is fun and pleasurable.

Quality of life is important to Lyfebulb and it is important to me.  As a Holistic Health Coach my goal is to help men and women all over the world improve their quality of life, not just through diet and exercise, but through a balanced lifestyle.

My journey began many years ago and has seen me through various dietary approaches, exercise regimens, and life phases.

It started with a relatively healthy upbringing, which had me eating whole grains and healthy fats, but also generous amounts of ice cream and Cheetos.  Around the time I turned 20 I saw my body changing and realized I knew nothing about taking care of my health through food.  I dove head first into the confusing world of diets: the dos and don’ts – so many restrictions!  Not wanting to adhere to one of these strict plans, I did my own research and found a way of eating that kept me healthy and restored my confidence.

After college I moved to Italy where I spent some time soaking in the culture and rediscovering myself in a new setting.  As one might expect, it was here that I began my love affair with food.  I learned to cook, letting my taste buds guide me and discovered that quality mattered.  I stopped being a picky, calculated eater and began to enjoy meals of all shapes and sizes.  And I did so with gusto.

Later I moved to New York City and settled into a career working at one of the largest advertising agencies in the city.  It was my dream job and I was happy with the way life was going, at least from the outside.  The corporate world was wearing me down with its long hours and endless demands.  My energy began to suffer as did my complexion and mood.  Despite the limited time and kitchen space, I still found ways to maintain a healthy diet – though eventually it became clear to me my diet alone wasn’t the solution to living a full and healthy life.  Holistic health mattered.

It was through all these experiences that I learned to get out of survival mode and into a place where my circumstances didn’t determine the fullness of my life.

My name is Alexi Morrison and I am passionate about living a full and vibrant life.  I am a Holistic Health Coach in practice since 2009, and I believe that true health is achieved not just through diet and exercise, but by living a lifestyle that promotes emotional well-being, balance, and joy.

I live in downtown Manhattan with my husband and daughter and I am thrilled to be a part of the Lyfebulb team promoting health and wellness.  Always operating from a holistic perspective, I count Pilates, reading and quality dark chocolate as sustenance.

Stay tuned for many new Lyfebulb Lyfestyle posts to come!

 

The Donor’s Perspective

On March 12, 2009, at the Columbia-Presbyterian Hospital in New York, Dr. Rodrigo Sandoval extracted a kidney from my body. On the same day, Dr. Lloyd Ratner transplanted this kidney into my daughter Karin’s body. Her two kidneys were no longer functioning after twenty years of Type 1 diabetes. I will forever be grateful to Drs. Sandoval and Ratner for completing the difficult parallel procedures and for taking such good care of both patients after the operations. Columbia-Presbyterian’s helpful staff did a great job as well. In particular, I remember Nurse Wendy who was present when I woke up and later monitored our progress. Anesthesia is affecting the brain in surprising ways, and when regaining consciousness after the operation I almost felt euphoric, despite the unusually difficult and lengthy extraction of the kidney: When I saw Wendy’s friendly face and heard her say “how are you doing?” my answer was “fine, Wendy, and I’m Peter Pan”.

For me, the decision to donate a kidney was not difficult. When Karin told me about her problems with kidneys and eyes, and her fear to have to resort to dialysis, I concluded that a kidney transplant was her best option, and that among her close family members I was the prime candidate. I remember telling her so while we were walking together at a beach near our home in Westport, Connecticut, and I keep feeling good about the fact that I offered the kidney donation without having to be asked. Loving and protecting their children, isn’t that what fathers are supposed to do?

I clearly was the obvious choice as Karin’s donor although, genetically, siblings are the best choice, ahead of the parents. Karin has indeed two younger sisters, Lisa and Anna. However, asking them to volunteer ahead of me was out of the question, mostly because young women may give birth to children, and there is hardly a more stressful circumstance in life than going through pregnancy and delivering a baby. Nature has built in redundancy into our renal system, thereby enabling us to survive accidents, but going through pregnancy with only one kidney certainly increases risk, both for mother and child. Asking my wife ahead of me to donate a kidney never entered my mind. Actually, it kind of felt right to make a contribution that was almost comparable to what she did when giving birth to Karin, our first child. I know very well how hard it was because I was there and tried to help her through it.

Having answered the question of family priority, my only remaining concern was my physical fitness. Donors are supposed to be less than 60 years old and my age was 63, going on 64. Although in good physical shape, I could not be sure that the transplantation team was willing to accept my candidacy. Age increases risk of complications, and a kidney that no longer performs at a high enough level should not be transplanted.

Fortunately, I was able to pass the tests – and there were many. It was certainly a big advantage that I never have smoked in my life. However, I was slightly overweight and suffered from mild hypertension, requiring medication. My job at IBM was certainly stressful and it required a lot of travel, limiting my opportunities to exercise. Still, I was running regularly, usually 3 miles at a time, and was still capable of doing it under 30 minutes. My 15 minute stress test on February 26, 2009, was decisive: according to the cardiologist, my performance was excellent, removing the transplantation team’s concerns about my age.

In the meantime, Karin’s kidney function had deteriorated to the point that there was no more time to waste: Dr. Ratner felt it was time to set the date, and it was set for March 12. I was very much in favor of doing the parallel operations as soon as possible, for still another reason: Together with my good friend and IBM Research colleague, Ajay Royyuru, I had planned a trip to Darjeeling that would include a 5-day hike along the Singalila ridge, along the border of India and Nepal, with views of four of the world’s five highest Himalayan peaks, namely Mount Everest, the mighty Kanchenjunga, Lhotse and Makalu. Ajay and I, along with 3 other friends, had been dreaming about this trip for a long time and finally set the date of departure for May 3, 2009. There was no way I would miss this chance to visit the Himalayan foothills, so I had a second reason to get into my best shape and to get the kidney donation done at the earliest possible opportunity.

There were still important hurdles to clear, including a discussion with my surgeon, the incomparable Dr. Rodrigo Sandoval (a big soccer fan who admires the skills of Leo Messi like I do), conversations with a nephrologist (Dr. J. Crew), a compulsory interview by a psychologist, and the crucial medical imaging of my two kidneys by means of Single Photon Emission Computed Tomography (SPECT): the radio-active tracer (a Technetium isotope) is ingested and emits gamma radiation that is measured directly, thereby  permitting accurate tests of kidney function. It turned out that both kidneys performed at a good enough level, and the team felt that my mental health was strong enough to move forward. Needless to say, our family that has always been very close, provided the best possible support ahead of and after the procedure. My wife Ulla has always been at her best in crisis situations and our youngest daughter Anna is an extremely caring and good-hearted person. Finally, our second daughter Lisa, who is living in Barcelona, Spain, and was actually pregnant with her second child, made the trip to New York and teamed with her mother and little sister Anna through the difficult time during and after March 12, the day of the operation. Lisa is as strong as a rock, in particular when her family is at stake.

For my wife, the hours of waiting on March 12 must have been particularly difficult. We left Karin’s New York apartment at around 6am, my anesthesia was performed around 9am, and it took until 4pm before Drs. Ratner and Sandoval informed my wife and daughters about the positive outcome of both operations.

My recovery after the operation was quite quick. I did not experience much pain and was released from the hospital into my family’s care quite quickly.

Karin, however, had to struggle much harder, because the newly inserted kidney needed a few days of adaptation before it started doing its job. We were all quite nervous during this waiting period, it would have been such a disappointment to go through what we did together and then having to accept failure. However, the medical professionals at the hospital assured as that we needed to be patient and that it was quite normal to experience a delay in the startup of a newly transplanted kidney.

Finally, “Pisse-Nisse[1]” started working, Karin started feeling better, and our family was back to having fun and making jokes.

Karin’s recovery was much slower than mine, but she soon felt better and stronger than during the weeks prior to the transplant, when her kidneys no longer performed the important functions of cleaning the blood and regulating blood pressure. She was able to get back to her work at Johnson & Johnson, where a great number of very nice colleagues had rooted for her and sent her beautiful flowers during her recovery at our home in Westport, CT.

As to myself, I went back to work after less than 2 weeks, started running on March 28, and participated in a warm-up hike for our Himalayan trip as early as April 12, one month after the operation.

On May 3 I boarded a plane to India and arrived at Darjeeling on May 5, along with Ajay and friends. It was a wonderful experience hiking the Himalayas. Dr. Sandoval had told me that there was a good chance I could do the trip and I did not want to disappoint him.

On the first day of the hike from Darjeeling to Sandakphu and Phalut, on the Singalila Ridge, we arrived at a Buddhist Monastery. I purchased the largest candle and a young monk lit it for me. Figures 1-4 below show how our hiking team, a young monk at the Meghma monastery, and how I held a picture of Karin and myself next to the candle. My friends and the monk joined me in praying that Pisse-Nisse would like his new home and do his job faithfully for many years to come.

Starting in 2010, every year on March 12, our family is getting together and celebrates Pisse-Nisse day by eating well and drinking well. Pisse-Nisse thrives on water, so he always gets lots of water on his anniversary. We have done it 6 times so far and I sincerely hope we will continue for many more years. Lisa is not always able to join, but we talk to her and use “What’s Up” to send her our pictures and to receive hers and Ingrid’s and Octavio’s and Busolito’s[2].

So far, I have talked about the deeply personal part of my kidney donation.

Let me add a few thoughts about the current system in the US (and most other Western countries), and what could be improved to deal with significant organ donation bottlenecks.

Many patients experiencing kidney failure have to receive dialysis. They are unable to receive a kidney donation because there are not enough potential donors. For ethical reasons, it is not possible for patients to pay donors for their sacrifice. The most frequent source of organ donations are therefore the relatives of patients.

There are other countries where such ethical considerations are set aside – for example Iran – and in those countries there is no longer a bottleneck in kidney donations.

I strongly feel that new ways should be tried in the US to encourage living donor organ transplants. Instead of paying donors for their organ (as is done in Iran), ethically acceptable ways of incenting donors should be found, such as providing free healthcare, paying for a donor life insurance, etc.

In addition, I think there should be more studies done of donor health after the donation. Before my donation, I was told that my life expectancy was still about equal, that I could buy life insurance without a penalty, and that my remaining single kidney would start working harder and achieve close to 80% of the previous combined workload of both kidneys.

After the operation, there was not much follow-up. There seems to be no real interest in monitoring and studying the health of kidney donors. For example, I have not seen any research results regarding physical performance before and after the donation. In my case, I am clearly seeing a 5-10% drop in lap times when I’m running. It’s not that I mind very much – at age 64 or 70 it really does no longer matter how fast one is running a mile. However, I have not found a doctor that can give me a clear answer when I’m asking about physical performance with one kidney versus two kidneys.

Creatinine values are higher with one kidney, that’s all I am told, but how are Creatinine values related to physical performance? How are the heart and the lungs impacted by the loss of a kidney.

Aside from such second order problems that are mostly caused by scientific curiosity, I am doing very well since March 12, 2009. Some people call me a “hero”, others just tell me they would do the same, without hesitation, for one of their children. I believe them. And whenever I meet Karin and give her a hug I have this strange feeling that a part of me is inside her and I’m hoping and praying the Pisse-Nisse will do his job and continue to make me a proud father, for as long as I will live.

 

[1] to understand the meaning of this name (given by Lisa) you have to learn Swedish!

[2] Busolito or Octavio Jr. is her (currently) 5-year old boy, a huge FC Barcelona soccer fan like his grandfather