Traveling America-ful with a medical disability can be challenging, but it is worth the effort you make to finally have a successful, fun filled vacation.
My wife and I were looking forward to my retirement. My wife had retired from her Licensed Therapist practice already and she was just waiting for me to make my retirement official. Our kids were “grown and gone” and we were looking forward to just picking up for weeks at a time on one of our spontaneous acts and traveling across this country of ours. We had upgraded our timeshare to accommodate our dream of traveling America.
However, strange things happen on the way to “life”. About 6 months before my official retirement my wife was diagnosed with End Stage Renal Disease (ESRD). On August 4, 2006 she began a schedule of 3-day a week dialysis treatment at the Mayo Clinic. Each dialysis treatment is at least 4 hours long.
We had a tough time trying to make sense of what was happening. Why was this happening to us in the prime of our lives? How could we possibly take trips with a regimen of these 3-day a week 4 hour dialysis treatments (Monday, Wednesday and Friday)? There was at least 1 day between treatments and no more than 2 days (Saturday and Sunday). Needless to say we spent some time with our therapists and getting in touch with our spiritual side.
I think I was more stressed than my wife. She insisted that I get out, do something. I normally fish or try to play golf, but I thought I would try to do something creative. So I wrote a few lyrics (got them copyrighted) and thought about creating a website that would allow visitors to tell other visitors about their travel experiences.
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If we wanted to do traveling of any kind while she is undergoing dialysis we would have some “road blocks” to overcome. For instance:
- Because she had been placed on the kidney transplant list, in the event of an available kidney match (I am not a match to donate my kidney to my wife) we had to be able to get back to the kidney transplant unit within 2-3 hours after we are contacted.
- Not all dialysis units were the same – some were cleaner than others (the fear of infection is always a consideration). Mayo has one of the best (if not the best) dialysis units in America.
- Not considering the 2-3 hours window we could only be away for no more than 2 days because of the dialysis schedule. We could probably stretch it for another day, but that would be putting additional risk into the equation. We were not willing to do that.
But, we were determined to travel. We started out by taking little excursions of one day – leave Saturday morning and returning Sunday morning. Then we extended our travel time from Saturday morning and returning Monday morning to get her to her Monday dialysis treatment. Next, we began leaving on Friday evening after her dialysis treatment – she was normally very tired right after her treatment and absolutely famished. So, I would prepare her a meal (she had some food restrictions) and she would eat it in the car as we drove to wherever we were going and then take a nap.
Next the big one! My wife said “Why not plan a trip for one month?” I was not as sure of this as she was. My wife spoke with her physician and then worked with the Mayo Clinic Social Workers for several months to line up dialysis units in various states up the Northeast coast (Washington Area, New York City Area, Atlanta Area and New London, Connecticut Area).
Through careful planning and coordination with the Mayo Clinic Social Worker we were able to schedule 12 dialysis treatments over the 1 month period in 4 different states. My wife is a master at establishing relationships with new people and she was able to do that in each of the different dialysis locations without major incidents.
Getting out was absolutely wonderful. We are from New York and it was great getting back into the hustle-bustle for a few days. Although, my wife could not get as much activity as she would have normally, she thoroughly enjoyed herself. As did I.
Our experience has led us to offer a few suggestions to those who might be holding back on traveling because of your own medical disability.
1. Discuss your plans with your physician
2. Work with the resources available to you – Social Workers, Travel Agents, etc.
3. Have alternate plans – if you run out of medication; if your condition worsens, etc.
4. Plan, plan, plan
5. Enjoy
Travel America-ful and share your experiences with friends, strangers and family.
Have an America-ful day.
