It’s been four years since I crashed into dialysis. Despite my best efforts to avoid the inevitable, the day finally arrived, and looking back, I can honestly say I am glad it did. Never in my wildest dreams could I have predicted how dialysis would change my life, and for the better. The irony never ceases to amaze me.
So here I sit, on the balcony of my stateroom on a cruise through Alaska, preparing to dialyze, and felt compelled to reminisce on how I got here. It has not been easy, but it has been rewarding, in oh so many ways.
The most amazing part is how healthy I feel. That, in itself, has been an amazing feat of self-discovery. It was dialysis that opened the door and showed me what my body needed to run like the fine-tuned machine that it is. Not traditional dialysis, 4 hours per day 3 days per week in a center, but home dialysis, done slowly, at my speed, my time, my days. Learning what my body needed to rid itself of the toxins, yet keep what residual function I had flowing! Residual, I have learned, is key to maintaining the healthiest outcome possible on dialysis. Yet so many people are robbed of that benefit, early on, by the one size fits all mentality of the dialysis industry.
I was, in fact, told “we don’t count your residual because we know you will lose it anyway!” Not true. The fast, hard treatments that they start you on can literally stun your organs, and often cut off any remaining function you may have, not to mention damage your heart and other organs. Intuitively, I knew from the beginning this was wrong; it just plain didn’t feel right. It wasn’t until recently, after reading numerous studies, did I realize I was on the right track, without really knowing why. Slow gentle treatments, for almost everyone, are the way to go.
The next clue in the dialysis puzzle was anemia management. I never realized how badly the anemia had affected me for the previous 20 years until it was treated during dialysis, and I started to feel good. Early on, I had a great nurse, who balanced my anemia with epogen and iron, trying to avoid the yoyo effect of hemoglobin highs and low. Since I didn’t understand what she was doing, I didn’t know what to ask for when she was gone. As my health deteriorated, without explanation, and breathing became an issue, I tracked down the culprit to low iron and tsats.
It seemed that my new team was determined to suppress my iron, hemoglobin and tsats to the lowest levels possible, citing the archaic theory that too much iron could harm the liver. Well, after many meta searches, I could not find one study to support their claim of liver damage from high iron, and 1000’s that supported the need for epo and iron titrated to levels of 50% or higher. Further research and I discovered that, although following a corporate algorithm, and “protocols”, they were not even meeting the minimum corporate guidelines for dosing! It took an act of God, and 6 months, but when my iron levels reached the 50% mark, I was literally walking on air.
So what does this have to do with me sitting here on a ship in Alaska! Well, dialysis, and learning about it, and advocating for the best possible outcomes for all dialyzors, gave my life a new purpose and meaning. I was able to live again. The 20 years I spent avoiding dialysis always held an element of fear. Was today the day my kidneys quit? (This is the reason I won’t consider a transplant. I don’t want to return to those days of uncertainty.) I love dialysis! The few hours a week I spend tethered to a machine are my zen moments, where I retreat from the world, relax, and enjoy the soothing sensation that occurs as my body gently rids itself of toxins.
So why am I telling you this and what does it have to do with sitting on the balcony of a ship cruising Alaska? Well, unlike what most people think, I am here BECAUSE of dialysis, not in spite of it! If I had not started dialysis, I would not have taken control of my health; I would not have chosen to advocate for better treatments for dialysis, for treatments that benefit the patient, and not a one size fits all mentality; and I would not be sitting here blogging about dialyzing at sea. Hopefully, by sharing our experiences, we can open the doors and lead the way for other dialyzors to lead as normal a life as possible.
I am here to tell you that, while not always easy, living a new normal life is entirely possible. Since March, I have been home less than 3 weeks, traveling to various professional meetings about dialysis and kidney disease. I lug my 100 pound albatross, the Nxstage portable dialyzor, along with me for company. Admittedly, this is a daunting task, but definitely doable.
As a solo traveler I have learned that I am at the mercy of the helping hands of others. For instance, getting to the airport, I found that, rather than airport parking, I use a parking service at a nearby hotel. For $5 per day they gain revenue from unused parking spots; I get a hug from their shuttle driver, who knows me by now, and special help loading and unloading my luggage and supplies. He bends the rules and drops me curbside, gets a skycap, and sees me off with another hug.
Early on, when I contacted the airline to advise them that I was travelling with a dialysis machine (which is a must for smooth flying), the savvy agent advised me to always request a wheelchair to avoid unnecessary questions at the counter. She was right, and while I don’t necessarily need a wheelchair, it has really come in handy between short connections, long gate distances, and most importantly, in baggage claim, where skycaps can be in short demand. Without fail, the kind people pushing that chair have secured carts, helped haul the baggage, and even seen me to the curb for a taxi or shuttle. I always tip everyone for their service, and also let them know that without their assistance, travel would not be possible for me. I am grateful.
Yes, travelling is no longer a get up and go affair, and requires lengthy and strategic planning, but it can be done. Even then, a key ingredient is to expect the unexpected, face each challenge with thought and creativity, and be prepared for anything!
So I am here to tell you, sitting on the balcony of a cruise ship heading to Alaska, I feel great. I am 65, have a chronic, terminal illness, and am tethered to a machine that keeps me alive, and I feel great. Life is good.