Spotlight on Travel

When my husband was diagnosed with kidney failure and immediately put on dialysis, one of his first worries was our travel would end. We knew nothing about dialysis. We were told to explore WellBound, Satellite Healthcare’s home dialysis services provider.

Upon arrival to Satellite WellBound of Lafayette, I met Katherine. She explained the different options available. With that one meeting, we landed in the middle of the best medical team imaginable. And we are a team. Around our house, we joke that dialysis is a team sport.

We started training for peritoneal dialysis. Two days after completing PD training, we flew to Vegas! Airlines aren’t allowed to charge you for medical supplies, so we carried on several boxes, and off we went! While on PD, we camped, traveled to different states, took our daughter to college, and went on a few cruises. All it took was some planning.

Then, we made the switch to short daily home hemo and again worried a little about travel. We needn’t have. Working with Julie, our Social Worker at Satellite WellBound, we’ve taken Vlad (our NxStage machine) to campgrounds, a cabin, cruises, and hotels all over the place. It was really only a matter of fitting the treatment into our daily lives while vacationing. Until…

We switched to nocturnal. We currently run every other night, approximately 8 hours, while we sleep. Nocturnal has not only made my husband feel better, it gave us our lives back. Our days are no longer marred by figuring out when to do treatment. The longer, slower dialysis is easier on his body, and leaves him feeling better during the day. Mentally and emotionally, we both feel free.

We are not experts, but we’ve traveled a fair bit while being dialysis users. My tips:

 
1. Remember that home dialysis patients are knowledgeable, active members in their own care. Sometimes you have to make that very clear (to the service industry, to new doctors, and more).
 
2. Your supplies can be shipped ahead of you. Verify they’ve been shipped. Verify they’ve arrived. I programmed Satellite WellBound of Lafayette’s phone number into my phone, in case we arrive at our destination and realize we forgot something vital. When that happens, Satellite WellBound will direct us to another dialysis unit that supplies us with missing items.
 
3. Realize this is going to change your travels. Even on the best trips, you might have days you just don’t feel good. Prepare yourself for more stress, then roll with the punches.

I spend a good deal of time reading ‘Dialysis Patient’ type forums. It always saddens me when patients have to fight their team to do home dialysis. I advocate as loudly as possible for those who are within a few hours of a Satellite WellBound to consider switching. I have found them to be incredibly progressive in their approach, and more importantly, empowering. They are our sources for knowledge, help, and advice, but they allow us latitude to handle my husband’s medical care in the way that is best for us. They are willing to hear us out if we disagree with a proposed change, and more importantly, willing to explain. They always treat us as captains of this team.

If you are able, take your life back. Go home.

Jennifer P – Caregiver extraordinaire