about me: before, during and after dialysis

before  dialysis:

I woke up from surgery, with the surgeon leaning over me saying “from now on you must treat your arm like it is your lifeline, because it is!” and so my journey began.

I had managed to dodge the dialysis bullet for almost 20 years (that journey, in itself, would fill another blog), but now my time was up. I knew at Christmas my days were numbered. For years I had made peace with end stage renal failure, and knew that I would never survive dialysis. I was OK with it!

Then I took my 90 year old mother, who drank like a fish and smoked like a chimney all her adult life, to my family doctor. After reviewing her labs he looked at my mom, and said “whatever you are doing , keep on doing it”. He looked at me, and said “the last time I saw labs this bad, the patient was in a coma”. I was trying to get hospice for my mom, and instead, he said he’d order it for me.

I can’t say I was surprised. Various nephrologists had been trying to get me on dialysis for years, but I always said “I’ll call you when I can’t get out of bed anymore”. That day had finally arrived. I crashed during a minor out-patient surgery, and was hospitalized.

This is me with my “deer in the headlights look”.

deer in the headlights

Photo by Judy Olsen

I credit the consulting nephrologist with my being alive today. I told her I had no intention of living my life hooked up to a machine, that .my passion was traveling, and without that I had no reason to live (well, except for 3 precious grandkids, but that will come later!).

The nephrologist told me, you are young (at 62, with a GFR of 8, I didn’t feel that young), and that her sister had been traveling the world on dialysis for the past 20 years . I didn’t believe her, but I made a followup appointment anyway. I drove to the office on a Thursday afternoon with lab results and previous testing in hand. The doctor gave me two choices, he could send me to the emergency room, and start the admission process to get me going on dialysis, or set up an admission for the following Monday.

I didn’t trust myself to return on Monday, so I said I’d go with Plan A and headed to the ER. From that moment on, instead of everything being a blur, it was like the fog lifted!

The next day I had a chest catheter put in, my first dialysis treatment, and the first of 3 surgeries to put in an av fistula, or as dialysis users refer to it, their “lifeline”. It was like being on a production line, on steroids!

during dialysis:  the startup

I went home the following Tuesday, and promptly reported for dialysis at the nearby clinic on Wednesday at  4 pm. Sometimes, I admit, I am a control freak, with little patience for the failings of others, and, at times, even a bit of a perfectionist. Now, for the first time in my life  I was totally at the mercy of others, and this lifeline  which connected me to an intimidating machine that kept beeping alarms and pumping blood in an out of me! It was a truly humbling experience. I wish could say it got better, but at least I did!

Even though the “renal fog” lifted after the first dialysis session, the first few sessions still went by in  a blur. But pretty soon, I had the routine down pat. Before long, I noticed that I could go up and down stairs again, even carrying laundry. I could walk the length and width of the grocery store without using the cart as a walker, and then, my mental acuity slowly returned.  I was literally bouncing off the walls with  newly found energy. To think that nine hours a week hooked up to a machine could do all this; it was nothing short of a miracle.

One thing you learn with a chronic illness is who your friends really are! When I had to cancel a dinner party because I was in the hospital, I never really heard from that group of “friends”again (“friends” who had been gathering monthly at each other’s homes for over 10 years) . Well, there were one or two generic emails and a get well card that arrived about 2 months later. But really, I learned that starting dialysis was like contracting a social disease, and most people were afraid of it, and me!

On the other hand, a casual acquaintance over the years, a once a month, lunch date, sort of friend, never failed to send a text or email, asking how I was, offering assistance if I needed it. She respected my fierce independence, but in a pinch, I knew I could count on her, and she has been my biggest cheerleader since!

I knew that my life was beginning to return to normal when this friend and I went out to lunch one day, a month or so into dialysis, and I could not shut up. We talked for hours. Suddenly, I realized that I was getting better, that before dialysis, it had taken too much effort for me to even hold a conversation. Yet she had been there for me, before, during and after dialysis, talking or not.

She is a talented photographer, and I plan on posting some of her inspirational photos in future blogs. In fact, I have plans for her to chronicle future travels. You are in for a real treat, I promise. For now, it’s enough for me to just get started blogging!!

Just to whet your appetite, here is one of my favorite pics of hers. Imagine sitting here for your dialysis treatment – for now, I enjoy staring at the photo during mine!

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Photo by Judy Olsen

For several years, prior to dialysis, and as my health slowly deteriorated, I kept wondering what I was going to do with the rest of my life. I was bored, except for my travels, and there were already enough travel blogs to keep everyone busy for a lifetime. I could not think of a new angle for travel blogging – seniors, nomads, off the beaten track, they had it all covered!

But then I started dialysis.  Several months prior to starting dialysis, I had started to plan a trip to Grenada, Spain . I had an apartment, on the outskirts of Grenada, at my disposal for the entire month of august, and no way to go there and do dialysis! Try as I might, I couldn’t figure out how to make it happen.

after starting dialysis: what comes next

I called Fresenius (my dialysis center), and spoke with their travel department. Sure they could arrange it, at $500 per treatment! -Medicare doesn’t pay outside the US. You do the math.

Enter Nxstage. One of the reasons I agreed to dialysis in the first place was because of the emergence of home hemodialysis therapies, mainly Nxstage and the System One home dialysis system. All I was waiting on was my fistula! Which, unfortunately, was not ready in time to head to Grenada.

It’s funny how life resolves itself! After years of wondering what to do with my life, and avoiding dialysis like the plague, here was  opportunity, staring me in the face!

Dialysis and travel – travel and dialysis. There isn’t a lot of information on the subject. There are some brave souls out there who have done it, but they are the exception, not the rule. Mostly, these travelers were on peritoneal dialysis, which I couldn’t do because of previous surgeries, or US travelers using the NxStage system. My goal with this blog is to simplify the future of travel for hemodialysis  users world-wide. I hope you’ll join me for the journey!

(Note: Photos in this post courtesy of Judy Olsen, and are available for purchase)

 

 

 

6 thoughts on “about me: before, during and after dialysis

  1. I’ve been thinking the same thing. There are folks doing treatment and feeling stuck in their little rooms on their machines. There is a lot of travel that can be done with just a little planning. Maybe photos from those of us that are traveling will inspire others to do the same thing.

  2. Great blogs. Just one note, as a long-time dialysis person I found both too long. Maybe break them in half ?? I find your writing engaging and informative with humor thrown in and a very easy read but about halfway through I wanted it to be done. Maybe because I know my own story all too well and yours seemed to mirror mine so much lol. Best of luck and Blessings to you. Amy

    • That’s a good point Amy, I am going to try to break up the content with appropriate photos from my travels, so you can take a break and find your spot easier!

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