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Lyfestories

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!

 

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