I enjoy commenting on Home Dialysis Central's Facebook Page.   Recently a young man posted about how he wasn't looking forward to going on dialysis and that he was scared.  Below was my response.

Jefferson you should be scared, life as you knew it both before you got sick and after will change completely. The unknown is difficult to comprehend. But my friend, let me tell you I have been through every type of dialysis and two failed transplants and have raised my fourteen year old son and ten year old daughter with my wife of 25 years at me side. I am still on dialysis with no chance of a successful transplant in my future. Every day that I hook up to dialysis I give myself the gift of life. A life that I choose to live the way I want. I've been doing this since 2001. Without dialysis there would be no choice for me. With dialysis every day is a new opportunity. It will suck until you take ownership. Learn to cannulate yourself early in your treatment - stick those big needles in your arm. Pay attention to how your machine is set up and how it runs. Don't just watch tv during your runs. Watch a little, but read or play a game too. Learn to ride the roller coaster of anemia. When your too tired don't beat yourself up or feel guilty. If managed it will pass and you'll have energy again. When you have energy do something. It will take time but always remember that you are the captain, your doc is your first mate and the rest are your staff - all working together for your optimum health. Jefferson, I love your name, I had a friend with the same name in high school. You will win at this, take the lumps as they come and remember that it always gets better because you believe in yourself.

Help us to achieve $100,000 for the National Kidney Foundation - I need your help.

A little something different this year for The Riverdudes National Kidney Foundation of MI fundraising team. This year I dialyzed in my camper and helped Jacob's Boy Scout Troop at camp and could not attend the Walk.  I have also been spending a lot of time finishing up my first memoir, A Chocolate Dog Tale, and looking for a publisher.

A young Gen X couple falls in love in high school, gets married after college and finds their well planned life crashing on the shoals of a sea of obstacles as they try to achieve parenthood. With the urging of Andria’s Grandpa, she and Erich adopt a Chocolate Labrador Retriever puppy to try to bring joy back into their lives.  The bread loving Amos puts the three on the path of many adventures as they find themselves on, in and around numerous Michigan rivers. 

Together we have raised $78,000 and we can't stop now. Please once again donate $100 or what you can to the NKFM through my secure site.

Thank you for all your support and look for A Chocolate Dog Tale at your favorite book store soon. 

Peace, Erich

“A young Gen X couple falls in love in high school, gets married after college then finds their well planned life crashing on the shoals of a sea of obstacles as they try to achieve  parenthood.  With the urging of Andria’s Grandpa, she and Erich adopt a Chocolate Labrador Retriever puppy to try to bring joy back into our lives.   A Chocolate Dog Tale, Ditschman’s first memoir, takes the reader on adventures never far from the rivers he loves.  In part, Tale is an ode to Michigan’s rivers, the history that forms around them and and the connectedness to place that they provide.  But Tale never departs far from the star of this story, Amos, the lovable Chocolate Labrador Retriever who’s passion for lakes and bread often keep Andria and Erich’s minds off their pain and filled with thoughts of how to retrieve their wayward bread loving Retriever.  Ditschman brings humor and honesty to the telling of the incredible relationship that can quite unexpectedly form between pets and their humans.  Follow Erich and Andria as they quietly address the frustrations of infertility and adoption while inadvertently expanding their family along the way.  With a cast of characters that are easy to recognize in our own families, Tale will make you laugh out loud, bite your nails in suspense and struggle to hold back tears as you follow the three through their life together.” #achocolatedogtale

Last night was a very successful paddle with the Boy Scouts on the Red Cedar River and Grand River in downtown Lansing, MI.  I'm a little sore and tired today, but that is just my body reminding me that I had a great time yesterday.

You can see more photos at the Troop/Crew 180 website.

Find time to get outside and paddle.

Tonight I'm leading Troop 180 Boy Scouts on a short (one and half hours give or take) canoe trip in preparation for a longer trip on the Rifle River in northern Michigan later this month. We'll hop in the Red Cedar, the river famously referred to in MSU's fight song, and paddle to the confluence with the Grand River. Will follow that into downtown Lansing, Michigan's Capital of Michigan and hop out just before the northern dam in Old Town. We have been blessed with a number of rainless days and the rivers have coming down from the April highs. The weather forecast is excellent.

I wanted to take my son's kayak and follow the route this past weekend just to make sure it is not to obstructed. Unfortunately, my anemia was such that it probably wasn't a good idea to take two paddles (trips) so close together. Instead, I've saved up my strength for a wonderful paddle tonight.

So, here is the take away - not being strong enough to do things like you used to, is not a reason to give them up all together. You need to make adjustments, lower expectations, ensure that you are still confident and will be safe, and hop into your boat and paddle away. Just because you are on dialysis you shouldn't give up the things you love.

Paddle on.

Spirit Airlines corrects a mistake

Andria contacted Spirit Airlines to make sure they were aware that we will be traveling with my NxStage Hemodialysis machine. She reached a Call Center. Repeatedly the representative stated that the only devices that would not carry a charge are assisted breathing machines. My dialysis machine and case weigh one hundred pounds. Spirit has a hefty baggage price, especially if the item is oversized. And the price increases if you have to buy it at the gate. We were planning ahead to minimize surprises.

Andria calmly tried to explain the Department of Transportation disability rule to no avail. This rule waives baggage fees for life sustaining devices. Requests to speak with a Complaint Resolution Official were met with responses to the affect of - we do not have one. Clearly, the Spirit Airlines Call Center staff was not prepared for someone traveling with life sustaining dialysis equipment. For those who may not be aware. The average lifespan for a person without the use of their kidneys and without dialysis is between seven and twelve days.

I suppose if you have some residual function and thereby make some urine one might survive to twelve days or so. It wouldn't be a pleasant twelve days. I haven't pee'd since 2001, accept for a couple of brief moments while we were trying to make my two transplanted kidney's work (one in 2001 another in 2005).

One of those times will always stick with me. We were on our way home from the University of Wisconsin Hospital in Madison. We stopped at a restaurant for a break and I took my five year old son to the bathroom. We stood side by side and used the urinals. This may be a dad thing. But, it felt normal. Our new normal, well twelve years new, is that I'm the camel of the family. Cross me in a car, and it will only be a matter of time until your legs are crossed and you're whistling, Oh Susanna, and tearing up at the eyes.

I asked my friend Mary at NxStage if she could help us. She spent the next two days trying to get through to the appropriate parties at Spirit. On Valentines Day, Mary forwarded the following message to me.

I have been using Nxstage's System One Home Hemodialysis since 2006 and on dialysis since 2001. NxStage and the people who work there are passionate about providing a device that help people like me live a passion filled life. Thanks Mary.

Thank Spirit Airlines for correcting this mistake.  There are over 300,000 American's on dialysis and unfortunately with near epidemic levels of diabetes and high blood pressure as result of alarmingly increasing obesity in the US, this number will be growing.  Many people on dialysis are turning to home therapies to provide better outcomes and to increase their freedom to pursue a full and meaningful life.  It is appropriate for your staff to be trained to deal with the devices these patients will be bringing along as they travel the world in pursuit of their dreams.


-----------

Spirit Airlines Customer Relations Agent Michelle , Feb 14 10:44 am (EST):

Thank you for your patience as we investigated this matter.

As a general matter, we do not charge overweight fees for assistive devices. In the interest of clarifying what was stated in the conversation between Mr. Ditschman and our Reservations agent, I requested that the call made on February 11, 2013 be converted into a transcript for review. According to the transcripts, the agent did not offer correct information to Mr. Ditschman in regards to the assistive device he wished to check nor did he provide information regarding a Complaint Resolution Official (CRO) which Mr. Ditschman requested. For this reason, we believe that we violated DOT's disability rule in regards to both aspects of your claim. We thank you for bringing this to our attention. We’ve used your correspondence as a coaching tool for the entire Reservations staff.

I've gone ahead and made a note on Mr. Ditschman's record indicating that he should not be charged for his checked dialysis machine. I've also contacted the stations he's traveling from and advised of the device.

Please note, if you ever encounter problems when traveling with us, feel free to ask our Spirit Airlines customer service personnel for a Complaint Resolution Official (CRO). Our CROs have been specially trained and are aware of applicable Department of Transportation disability regulations. Our CROs are available at all airport locations and will be glad to respond to your concerns.

We trust we have addressed your concerns in a satisfactory manner; however, if you choose to pursue enforcement action, you have the right to contact the Department of Transportation, in accordance with ACAA and DOT rule 14 CFR Part 382.

Please feel free to contact me if you ever require assistance; it is my pleasure to assist you.

We know you have a choice in air travel and are grateful you choose Spirit Airlines.

Kindest regards,

Michelle M.
Disability Specialist/
Corporate Escalation Officer
Spirit Airlines, Inc.

Thank you for your past support.  Together we have raised nearly $75,000 for the National Kidney Foundation of Michigan.  Since 2001, when I surprisingly ended up on dialysis, your continued support has helped to curb kidney disease in a state where the main risks - obesity, high blood pressure and diabetes are near epidemic.  The NKFM helps to increase kidney donations, including living-donations like the one Andria gave me in 2001.

Unfortunately my disease, FSGS, shut down her gracious donation immediately.  There are many folks like me where future kidney transplants are dubious (you may recall, I had another transplant in 2005 that also shut down).  In the US there are nearly half a million people on dialysis.  The National Kidney Foundation provides tools to help people on dialysis to live a quality life

Again, this year the Riverdudes are raising money for the National Kidney Foundation of Michigan.  There are three ways that you can get involved.

1. Make a donation through this secure website right now. 
2. Join The Riverdudes and The Hubbard Law Firm Walk Team and collect funds to help us reach our goal. We will be walking downtown this year on Saturday, June 9 at 8:00 am at Lugnuts Stadium. You can register at the website.

1. Become a virtual member of the Riverdudes.  Join the Walk Team by registering at the website, but because of timing or distance, just help raise money.

The money you donate to NKFM is used for research into cures and better treatments, sending kids on dialysis and with transplants to camp, making medicines more affordable to patients, and educating at risk populations about how to reduce their risk to kidney disease.

Please donate $100, $50, or what you can to day. If you would rather, you can send a check made out to the National Kidney Foundation of Michigan and mail it to me in the enclosed envelop.

Together we can help many others through supporting the NKFM.

Dialyze for the Prize!

And, thank you for your support and kindness -

Erich