Taking Joy in the Journey Part 2: Life Changes and a New Dawn Rises

By: Wills Porter

Philmont Scout Ranch (Day 4 of 14)
Cimarron, NM.

Life Changes

While I was being prepared for surgery in pre-op my family notified our family friends back in Athens and out of state. To say that this was a major development would be an understatement. I was finally in pre-op and would soon undergo my much-awaited liver transplant. When the final preparations were complete, I was rolled in the operating room. Once there, I was hooked up to monitors and an IV line was started. The surgery started as expected. However, this medical procedure was not going to be an average day at the office for my doctors.

Surgery | Children's Healthcare of Atlanta
Where my Life Changed
(Children’s Healthcare of Atlanta)

What started as a regular transplant procedure quickly turned for the worst. In one instant I was alive and the next, I was lost on the table due to a cardiac arrest. For a few minutes, my life hung in the balance. I was not responding and thigs were not looking good. As every second passed, my brain lost more and more oxygen. The worst-case scenario had happened, I was lost on the table. Then, I was resuscitated. The procedure was called off and I left the OR still in an unknown condition. I was not showing many signs of being impacted by my medical trauma. However, my parents got a feeling that something was not right. After asking I be evaluated by neurology, I was evaluated and there was no real sign of imidate concern. However, when I was being handed back to my parents the unthinkable again happened. I had a seizure. When this happened, it became clear to everyone that I had suffered substantial neurological damage. I may never walk, talk, see or make facial expressions ever again… and I still needed a transplant! My life had changed in a way no one expected. I was not even three years old.

Recovery

After suffering my cardiac arrest and seizure., I left the hospital with a long road of recovery ahead. The hope was that I would eventually be considered healthy enough for a transplant, but no real timeline was made. It was more important that I make a recovery and it not be rushed. Recovery was slow but after months of intense rehabilitation, I was finally meeting my key milestones in recovery. While I made great strides, my vision was still not doing well. . The damage I sustained in the hospital was so great that my ability to see was greatly compromised. I would probably never see well for the rest of my life.. I would need to learn to read braille and walk with a cane. My life had changed, and it was time to accommodate as best as I could. The time had come to be evaluated by a specialist in Atlanta.

A New Dawn on the Rise

When I went to be evaluated, I went in not being able to see. I had sustained major neurological damage and it was evident internally and externally in that I had vision challenges. After I was evaluated, the individual doing the evaluation began to cry. Why was this person crying? Maybe they were new, and the pressure of the results were hard to come to terms with. Maybe it was a worse prognosis than expected. The conversation probably went something like this…

Evaluator

Mr. and Mrs. Porter, I don’t know how to explain this, but your son can see.

My parents

What?

Evaluator

I have never seen this before. I probably never will be able to explain this. Your son can see.

With my ability to see restored, the prognosis for getting a transplant all of a sudden got a lot better. As thee advances were happening, the hope was that my days on the transplant waitlist were numbered. For everything that was not known, what was known was that the 1990s were coming to an end and a new dawn was rising. On the night of December 31,1999 my family got the call we had all been waiting for. My time had come. In excitement, our family made the one-hour drive to CHOA. When we arrived, we learned that the procedure would not take place until later in the evening. This meant that we had tome to spend before the surgery. That night, my family and I attended the hospital New Year’s celebration. At that celebration, the theme was “Out with the old and in with the new”. Would this come to define my transplant journey? My family and doctors would find out very soon.

Hope with Jonathan

Hope with Jonathan                   

 “How it all Began” ….                                  

Hope – a feeling of expectation and desire for a certain thing to happen.  

 Hope with Jonathan! started on the night of July 8th 2019, based upon my near-death experience with battling kidney disease, I knew my life was spared and that I was here for a reason. I wanted to do something, I needed to do more, but How? And What? Little did I know it was laid out before me all I had to do was remember what I had experienced and boom! Light Bulb! There was many more out there just like me and needed a platform and way to share their personal journey battling kidney diseasedialysis and the need of a living donor for transplant! Hope with Jonathan was Born! 

Honestly, I started the process of creating Hope with Jonathan right after I came home from my own personal transplant on August 8th, 2020. I started creating logos and contacting patients right away that I knew was in need of a donor, many of them I had been sharing for and also creating posters, videos and starting their own kidney advocacy pages and posting 3 to 4 times a week on social media. I knew that we had to get the word out and what better way than a person sharing their own testimony, there’s power in that! I firmly believe this! 

The process was to contact patients in need, message them and present an opportunity to be on our show, set up a date and confirm, get all of their information [ transplant hospital, phone number, blood type, date of birth, etc.} then we needed to converse about what we would discuss, but the main theme would be their kidney story and to advocate for a living donor. I felt the emphasis on their personal story would help with the possibility of someone connecting with their story and by doing so giving them Hope to find a donor.  

I will say that during the interviews I have learned that every story is unique but the common theme is kidney disease. I find it very interesting the stories of the kidney warriors, overcoming adversity and obstacles, strength in the midst of despair, and believing in faith that their donor is out there somewhere. The character of the Warrior is that of a Champion! 

There has been many influences and supporters [ To many to list] of Hope with Jonathan Live show and Podcast, Jeff Brown for helping me learn specific software for creating posters and videos for patients, Jared Brown for influencing me and having me on The Warriors Quest Show on the Urban Health Outreach Media Network. I also was interviewed by Kent’s Kidney Stories Podcast, I owe a ton of gratitude and thanks to Kent Bressler and www.kidneysolutions.org, I too was a patient listed with Kidney Solutions and now I volunteer with them as the Social Media Director. Impact America Media is a supporter of my podcast as well as Kidney Warrior Merch of Toronto, Canada, share your Kidney Story today!  

The end goal for Hope with Jonathan is not about numbers but helping others in need of a donor and as a patient I want others to feel what I feel as a transplant recipient. I want to utilize my show to bring positivity and Hope! In closing I would like to personally thank Anthony Reed and Kidney Trails for this awesome opportunity to share with others! Thank You will never be enough to express my gratitude for the support and love I have received from the kidney community!  

As I say often…. You got to hang on to Hope

By Jonathan E. Traylor, SR. 

Host – Hope with Jonathan 

“I Don’t Know About This !” (A Patient’s Initial Dialysis Treatment)

It was a typical day for me as I came to work this morning. As I walked to my office to get the day started and could not help but think how different things were just a few years ago. You see a few years ago I was a patient in this clinic once but since my Kidney Transplant I have had the wonderful opportunity to come back not as a patient but as a Kidney Coach.

As I walked out on the floor to say hi to the patients, one of the machines started alarming BEEP, BEEP, BEEP, I went to see what was going on. Mrs. Ruth was one of the sweetest patients that we have but one that was dancing in her chair at the moment made her machine alarm. I go over to her chair to talk to her.

Now Mrs. Ruth you have to be still as much as possible while dialyzing, otherwise it’s a possible chance you can make your treatment longer, clot off your lines, or even worse infiltrate your arm.

Mrs. Ruth: “ Oh, I’m sorry Anthony , but I was jamming to my music on my AirPods! This Dialysis be boring man!! But I understand . Since you’re here you mind explaining to me the importance of labs and how you mentioned it saved your life when you were on Dialysis?

Sure, no problem, I will be happy to, let me go get some pamphlets out of my office for you to take home as well. As I walk back to my office Dwelyn stops me in the hallway.

Dwelyn: Hey Anthony got a quick question for you…. Sure, Dwelyn what’s up?…. Did you see the patient beside Mrs. Ruth, she is new here would you mind stopping by and sharing your story especially how the labs saved your life that always seems to help new patients…. Sure thing let me finish with Mrs. Ruth and I will talk to her.

Once in my office I grab a few pamphlets and a Kidney Trailblazer bag and head back out to the floor. Once I finish talking to Mrs. Ruth, I head over to talk to this new patient. What was her name oh yes that is right AW.

Hello AW, my name is Anthony, I am the Kidney Coach here at the Kidney Trails Dialysis Care Center. I heard that today is your first day here with us and the first day of dialysis…. Yes, it is Anthony, it is so nice to meet you. Dwelyn said you have an interesting story about how the labs saved your life.

I smile to myself because Dwelyn and the rest of the staff love to introduce me to patients this way. Ever since the ASCP Patient Champion Program came in to give a talk about how labs and pathology are involved in patient care and left us a pamphlet explaining their involvement. I really think they do this because I was one of the speakers talking about the labs. Oh well.

Yes, AW I would love to share with you my story. You see it was about 8 years ago that I found out how important labs were to my care. I was extremely sick and finally decided I better go see what was going on and went into the ER. Now I knew I had one issue and that was high blood pressure and figured that I just needed some meds and then I would be ok but during my visit in the ER the Doc wanted to run Blood work on me. Not my most favorite thing to do but I finally said ok. After the results came back I found out that I was in real trouble. You see my GFR was about 3-5 do you know what GFR is….Yes says AW it shows you how well your kidneys were working and yours wasn’t working too well was it.. That’s right and how do you say it? I was in some bombad trouble…. Well, after the doc read my labs to me it did not sound good. Every number that was supposed to be high was low and every number that was supposed to be low was high. I was a total mess and in stage 5 kidney failure and needed dialysis quickly.

As AW is listening her eyes got as big as saucers, she just realized that I was a dialysis patient…. You needed dialysis but you are young, I mean you can’t be older than 30 can you say how old were you when this happened? I was 22 when found this out.

AW looks at me and I wonder what she is thinking. She then says so how did the labs save your life. Did not dialysis save your life?

Yes, dialysis gave me another chance at life to live another day but if it were not for the labs I would not be here. Think of it this way, let’s say you are traveling on a journey and on the way you look around and don’t know where you are. What would you do?

Why look at a map or maybe one of those new fangled things what do you call them umm GPS…. Yes I reply, think of the labs as your medical GPS when you get your blood work done. The results show how well you are doing or in other words where you are at.

Hmm, that’s interesting I never thought of labs that way or realized how important they are AW says….. Without the labs we would not know that someone has kidney issues and that they need dialysis. We all would be lost with the labs and I am ever grateful for them.

Thanks for sharing Anthony I really appreciate it now I could not help noticing you have a bag in your hand I hate to ask is that for me. I smile yes it is AW this is a Kidney Trailblazer Bag to help you on your journey in it you will find. A KT Blanket, headphones, more information on the labs along with a journal, A goal map, and a book of quotes……Thank You so much Anthony, you don’t know how much this means to me. I don’t feel alone and feel more informed about dialysis and what all goes into it. This is a great clinic and I am thankful that I get to come here for my treatment. Your welcome AW if you have any more questions please don’t hesitate to ask……

As I step away I catch Dwelyn on the way back to my office. Hey, thanks for letting me know about AW. I can tell that this did a lot for her and I am glad I had the opportunity to talk to her for a little bit. No problem man, thanks for doing it Dwelyn said and he then looks thoughtful and says….. You know I was thinking, I believe that we are the only clinic that has a kidney coach and I can see the difference that it makes in our patients. I wished more clinics would follow suit. Me too Dwelyn. Just then my phone rings. I got to take this call. Once again thanks………………………….

Anthony E Reed

CEO Kidney trails/Speaker/ Master Kidney Coach

Taking Joy in the Journey Part 1: The Stage is Set

By: Wills Porter

Philmont Scout Ranch (Day 1 of 14)
Cimarron, NM.

While I am going to share my Transplant Journey in this blog series, I want to first ask you the reader something. When you think about your life, what do you think about the most? The reason for life… your purpose? For me I think about how my life could have been different. If you have a minute or so, I will explain exactly why I constantly think about this.

The Journey Begins

Shortly after I was born, I became extremely ill. I would go through phases of being well and falling ill. My pediatrician could not figure out what was going on and decided to refer me to Children’s Healthcare of Atlanta. When my family and I arrived at CHOA, the doctors got to work determining what was causing me to become so ill so often. Was it cancer? Was it basic infant jaundice? What was really going on? My doctors did not know and ran countless tests to determine what was going on with me. After doing an open liver biopsy my doctors learned that whatever was going on was not just basic infant jaundice.

By the time I was two, my growth had stunted completely, and I was not getting any better. In hopes of getting a second opinion, my family and I went to Ohio to get a second opinion of what was going on. While in Ohio, the doctors evaluated me and determined that I would probably not need a liver transplant and to give it time to see how some medicines to improve bile flow worked. Unfortunately, by the time I returned from Ohio things were not better. It was at this point that I was placed on the liver transplant waiting list.

Future Shattered

What do you tell a family whose idea of their child’s future is shattered? I was the first born and the only child at the time. Now within two years, my parents went from being new parents of a healthy child to being parents of a chronically ill child. While I do not remember much from my younger years, I know this to be true. My parents advocated for me and did everything they could to minimize the pain I felt. While I felt pain, there is no question that they felt pain too. They could do nothing to minimize the effects of my illness. They could only prevent and react to a certain point. At the end of the day I needed a transplant.

Life is About to Change

After waiting for a little while on the transplant wait list, my family got the call they were waiting for. A liver was ready for me. However, there was also another individual who may be a match. In following policy, my family and the other child’s family was notified to come to the hospital. Either I was about to be transplanted or the other child was. When my family arrived at the hospital, they learned about the other child whose family had been called to come to the hospital. This child was in much worse condition than I was and would most likely not live through the night. I was ill but I was going to live and see the next day. To my family, passing up on the liver was the right decision to make. I was in need, but the other child needed the liver more than I did. So, my family left the hospital while the other child was transplanted and lived. My time would eventually come to get my second chance at life. At least, that is what my family hoped.

After waiting on the list for awhile longer, my family received a second phone call to come to the hospital. This time, it was my turn to get a transplant. In excitement, my family and I made the one-hour drive to Atlanta. When we arrived, I was put in pre-op and the final steps were taken before the transplant procedure began. The stage was set. My life was just minutes away from changing forever. However, my life was not going to change in the way that my doctors and family hoped.

What happened?… You will have to find out on another day.     

“ I Don’t Know About This!” ( A Patient’s Initial Dialysis Treatment ) Pt 10

As I approach the Cuba Pod to discontinue my patients treatment. Beside me is my coworker Ashley. Now let me tell you about Ashley. She’s fairly new to Dialysis approaching her First Year. Sheesh it’s been moons ago since I started my career. That’s in another comic of mine that will be coming later this year. Ashley has been with our clinic since March and I must say she’s a vibrant young lady. I can remember when I first met her coming to this clinic and she always appeared bubbly and full of life. I just assumed she had been at this profession for a while. I say this because as I noticed from afar of how she moved and carried herself with a positive attitude. Having a positive attitude is important in the Renal World let alone for the whole World itself . Today was different though. And what I mean by different is she seemed a bit down. I could just tell by her demeanor. I see her anxiously racing against the clock with  trying to answer alarms, update vital signs in the appropriate time frame and to prevent a possibility of her patient bleeding. Meanwhile still holding her composure. As she sits down on the stool next to her patient Mrs.Baykonberning( We nicknamed her Bacon Burning)  , holding her arterial site ( lower portion ) of her patients fistula site , I notice from a distance a glare in her  eyes with a piercing sparkle . Yet it’s the holding back of tears with despair. Granted during this time of the COVID-19/ Coronavirus Pandemic we are fully covered at all times. Meaning even though with the visuals that will be displayed within this story , we are using defined universal precautions and suited up with PPE to the max. So when I say I can see the piercing sparkle of held back tears in her eyes through the KN95 mask , uncomfortable face shield gripping her head around her temples , her contacts which she has mentioned before giving her slight trouble causing discomfort and the sweat pouring down her back from the gowns that feel like soaking wet trash bags. I feel as though something else is bothering her. I can see Mrs. Baykonberning give her hope with mere hand gestures by saying ,” It will be okay!”, “ You’re doing fine!” Ashley drops her head down as if she wants to give up hope , but still pushes through. As I walked by them both I noticed a sudden silence . As if it were a paused time warp. All the beeping suddenly went silent and every foot step was mimicking heavily off of the tile floor. As I look to my left while I’m rinsing my patient back . Ashley urgently races to the scale where her previous patient starts to bleed slightly from their access. Thank goodness she finished holding Mrs. Bacon Burning’s arm site . I hear Mrs. Baykonberning say ,” Go ahead ,I’m right behind you and I’ll get my post weight and write it down for you !” As she’s walking behind Ashley slowly with her cane with a slight limp. She notices a folded piece of paper that fell from Ashley’s pants pocket. As she reaches down to grab to give it to her. She feels obliged to open it and here’s what it says: 

This is a poem/ reminder of what Ashley experiences on a daily basis from her preceptor and those around her who have previous dialysis experience, but lack the patience of someone new. Those of us in this profession must not forget how it was when we were new. Processing is key. Dialysis is very overwhelming and intimidating yet deceiving. If you’re reading this. Do you remember your first time working in Dialysis? Did you ever want to give up or quit? Did you ever feel like the whole world was on your shoulders? If so , imagine that while having someone’s life in your hands and you’re trying to maintain your composure meanwhile being ridiculed. I live by this saying,” Follow your moral compass!” We at the KidneyTrails.com are here to Teach and Build.

Ashley “Smash” McGinnis

Dialysis Patient Technician

Fresenius Medical Care, North America

“I Don’t Know About This!” ( A Patients Initial Dialysis Treatment) Pt. 9

Hello, AW, very nice to meet you. Thank you for coming here to get your treatments. I have huge empathy for what you go through day in and day out and admire your dedication and commitment to your life. With that said, it is my duty to dedicate and make a commitment to your life, with full integrity.

So, Dwelyn told me you wanted to learn a bit about dialysis water treatment. Well, I’d love to educate you, A Dubs! 

First things first, all these incredible nurses and hardworking technicians are the heartbeat of your care. The heartbeat to this facility itself is the water room. Biomedical Technicians, like myself, are the backbone to your care. Though you don’t have the pleasure to see us often, we are busy keeping the physical facility safe, functional and comfortable for you to come to. We spend hours maintaining and repairing this machine here that is sustaining your life. We also assure the water that is feeding this machine is 100% safe for you. 

I’m sure Dwelyn has told you a ton already but did you know that during the course of your treatment you are exposed to roughly 50 gallons of water!? People without ESRD consume about one half gallon per day. You require 100 times that in just 4 hours, this is a big reason why water treatment is so critical, but it goes way beyond that. I’ll get into that shortly. 

Without getting too technical, I will keep this simple so that you fully understand. 

There are two sources of water, surface water and groundwater. Surface water is generally more contaminated with organisms and microbes, industrial wastes, fertilizers, and sewage. Groundwater is generally lower in organic materials but contains higher inorganic ions such as iron, calcium, magnesium, and sulfate.

You should not be exposed to any of this kind of water. You need water that is highly pure and all these contaminants removed. This is the purpose of the water room. 

Are you understanding all this so far, A Dubs? Yes, very much so, Eric, AW replies. Do you have any questions so far, A Dubs? Not at all. 

Great. 

The municipal water treatment plants adds chemicals to make water safe for drinking, most commonly chlorine. Chlorine is highly toxic even in really small amounts when on a dialysis machine. When chlorine is combined with ammonia it produces what is called chloramine. Also very harmful for you. 

In the water room here there are a series of filters. At this facility the water first goes through a filter called the sediment filter. This one does just what the name of it implies, it removes the larger particles from the water, or sediment. 

Then, the water flows through two carbon tanks in series. As I was mentioning a moment ago about chlorine and chloramine being highly toxic for you, the purpose of these filters are to remove that from the water. The first tank removes nearly all of it down to <0.1 parts per million or milligrams per liter. That is next to nothing! The second tank is basically a safety net in case the first tank experiences failure. 

Am I boring you yet? “No, no, not at all. This is really interesting actually. Eric, how do you know it’s less than 0.1?”

That is a terrific question, A Dubs! I see you’re starting to understand the critical nature of the water room. 

There are sampling ports right after the first tank and the second tank; this is where total chlorine is tested daily, at least every 4 hours at the first tank’s sampling port. There is little to no chance of these vicious chemicals harming you. If we find that the first tank has chlorine breaking through we will immediately check the port after the second tank. 

There is also a water softener in the water room. This is my favorite filter in the water room because the theory behind it is awesome,but I’ll keep it simple. It’s called a softener because it softens hard water. Hard water or hardness is basically calcium and magnesium. 

“Oh, those are the ions you were talking about in the groundwater!”

Exactly! I’m so glad you’re listening. It’s so important to the safety of your treatment. I can’t stress it more. 

“Yes, Eric, I understand why you call it the heartbeat.” 

Great, but there’s more. Are you ready for more? 

“Yes, I am, E Dubs. Hahaha” 

Oh boy, now look what I started… 

So, Dwelyn told me he explained the reverse osmosis machine. It’s highly effective in removing all those other organics and inorganics from the ground and surface water. 

From there, the high purified water gets sent to a large holding tank and a pump pulls it from the tank and sends it to each and every one of these wall boxes, the unused water goes back to the tank so it is not wasted. We call this the loop.

“Wait, so if water is always in the loop wouldn’t algae and bacteria eventually start growing? You mentioned that is harmful to me too.”

That is such a good question, so glad you asked! 

As I mentioned earlier, my biomeds take care of all the equipment in this facility. In order to assure bacteria does not have an opportunity to grow, we draw water samples, test for bacteria and endotoxins and disinfect the loop monthly. I’m sure you’re going to ask what are endotoxins? 

To put it simply, it’s a toxic matter released when bacteria cells die. Again, not at all good for you. They can make you very ill if exposed to you. The maintenance of the water room is important to maintain and maintain correctly. 

Your care technicians also come in super early daily to do a bunch of tests on the water system to assure its safe for patient use. 

That brings us to these wall boxes. We know there is water here waiting to be used. The dialysis machine connects directly to it. So, the water in the loop is feeding your machine right now! 

That acid and bicarbonate Dwelyn mentioned, the machine is also connected to those ports. When high purified water, bicarb and acid are mixed, that’s what we call dialysate. To put it simply for you, this machine is a proportioning and fluid removal system. 

Biomeds make sure all the pumps in the machine are calibrated impeccably to deliver the correct proportions so you can receive the highest quality treatment. There are dozens of other calibrations too that are critical but we won’t get into those. 

The last bit I would like to talk about, is this dialyzer. If you look closely you see tiny tubes running from top to bottom. On the inner portion of those tubes is the blood compartment. The outside is the dialysate. Just like the RO, the tubes are a semi-permeable membrane. For the sake of this discussion, if we didn’t remove the bacteria and endotoxins and the chlorine during the water treatment process, those 3 contaminants in particular, can pass through the membrane into your blood and result in serious illness or even death. 

I hope this paints a picture for you about the critical nature of dialysis water.

“Wow, Eric. Definitely does! I really appreciate the time you took to educate me on the critical nature of the Biomeds role too. I am thankful you are here and proud to say my equipment is maintained by expert Biomeds from Biomedix Dialysis.”

Eric Cirignano

Founder & CEO Biomedix Dialysis

CBNT

Triumph over Tragedy

My Great Awakening …. Triumph over Tragedy  

By Jonathan Traylor – Host of Hope with Jonathan /Podcast 

Have you ever watched an episode of your favorite medical sitcom on TV and wondered what it would be like to experience a real-life Traumatic experience? Well, I experienced one and lived to tell the story! Take a second and breath deep and close your eyes as I take you on my Personal Journey with battling Kidney Disease & Emergency Kidney Failure! 

On July 8th of 2019, I went into emergency Kidney Failure!! I can still remember the horrible feeling of not being able to breath properly, the heart palpitations and the strangest rash on my tongue, and falling in the floor with zero strength after days in the bed in which in my mind I thought I was fighting the flu, I couldn’t keep any food down, and everything tasted terrible and had a metallic after taste!  

I still remember calling 911 and praying at my bedside, I still remember the ride to the hospital in the ambulance as my breathing began to get worse, still remember when the ER Doctor and nurses staff came rushing in after getting my blood labs results, I remember the sounds of the chopper blades from the helicopter as they rushed me to a hospital in San Antonio, Texas{ my local hospital wasn’t capable of giving me the treatment needed } I still remember when we landed and the ER doctor said, “You better grab the crash cart”!!  I was in complete Kidney Failure! Stage 5 ESRD! 

Afte 3 days in the ICU fighting for my Life and I had already begun hemodialysis unknowingly, I had finally begun to come to, and I had every hose, tube and line you could imagine attached to me. I tried to speak but couldn’t due to being intubated, what a scary moment it was! I wanted to speak but couldn’t, and my family wanted to communicate so I resorted to hand sign language {my sister is hearing impaired}, I remember my Mom speaking to me and my family wife Melissa, Son Jett, and, Daughter Mackenzie, she was holding my hand {so grateful for my loving family}. You see I had put them all through a nightmare and I was responsible for this whole traumatic episode! 

I spent 3 days in that ICU, I then graduated to a normal standard hospital room, I spent 2 weeks in total there at Methodist. During my stay I had a lot of time to think and reflect on what had got me here? and What course in life caused this? I wish I had taken better care of myself and didn’t for 41 years of my life, I had done what I wanted and ate what I wanted and when I wanted. I had neglected doctors and caring for my Type 2 Diabetes and Hypertension {top 2 reasons for kidney disease} for years, due to anxiety and white coat syndrome. I had to do some soul searching in the hospital, I had to come to a realization of acceptance, forgiveness {for myself and other traumatic events in my childhood} and most of all I had to be willing to change!! 

In the two weeks stay, I received renal dietary instructions, had a permcath { a central line for hemodialysis } installed, and to say that it was all overwhelming is an understatement, I had to adapt quickly and give up foods and bad habits that I was addicted to for many years, as I left the hospital unknowing that this journey had just begun for me and not knowing what to expect, I began my new life with doing in center hemodialysis, 3 times a week, another life altering experience back to back, but yet I had to adapt quickly if I wanted to survive! I did in center dialysis for 10 months and then transitioned to Home Hemodialysis {NxStage} with my wife Melissa as my care taker. I did so for 3 months! 

I did dialysis for 13 months in total until my miracle Gift of Life of Transplant {Thankful to my Donor and My Donor Family Rest in Love Scott!} 8/11/20! After that during my recovery, I started Hope with Jonathan Live Streaming show & Podcast based on my near-death experience to bring awareness and help other kidney patients in need of a living donor, but that’s another story for next time!  

Side Note: Obviously, I paraphrased portions of my story and I must include that I had to leave out some details {I may include in other blogs} I wanted to add that if it wasn’t for my Strong Faith in the Lord Jesus Christ and the love and prayers of many family and friends, I wouldn’t have survived this life altering event! I stand before you writing this as a living testimony and a miracle of purpose! God wasn’t done with me yet and has a plan and vision for me! God Bless You! Friends! 

 By Jonathan E. Traylor, Sr. 

Host- Hope with Jonathan /Podcast 

Are you a fan!

Are you ready for some football?   The Super Bowl will be happening soon in 2021.  Perhaps this year you are watching the Super Bowl at home with your family due to the pandemic.  You can still enjoy appetizer type foods and not feel guilty about “cheating” on your renal diet.  

Even if you are not a fan of football, you can enjoy the foods typically eaten at celebrations with small adjustments in recipes to make them tasty and good for you. 

What’s a Super Bowl party without meatballs?  This is one of my all-time favorite ways to make homemade meatballs.  

I hope you become a fan of these recipes!  

Homemade Meatballs

2 pounds lean ground beef

1 c. bread crumbs

1 clove fresh garlic, minced

1 med. Onion, chopped fine

¼  tsp. salt (or less)

Pepper to taste

2 eggs, beaten

1/3 c. water

Mix and form into balls. Bake on an ungreased cookie sheet (with sides) at 400 degrees until done/slightly browned. Drain well. Meatballs may be frozen at once if you need to make them ahead of time. Serve with sauce of choice, preferably a low-sodium one!!

Sweet & Sour Sauce

1 can pineapple tidbits

1/3   c. vinegar

½ c. brown sugar

1 Tbsp. corn starch

¾ c. cold water

1 carrot, sliced very thin

1 small onion, cut in small wedges

1 bell pepper, sliced thin

Drain pineapple juice into a saucepan. Bring to a boil: juice, vinegar and brown sugar.  Mix water and cornstarch in a small separate bowl, slowly add to a saucepan, stirring constantly to thicken the sauce. Add carrots, onions and pepper. Cook to desired tenderness. Pour over chicken or meatballs.  Enjoy

Carol Jones

MS,RDN,CRS,CDO

Registered Dietician

Certified Renal Specialist

The Kidney Disease Rollercoaster

From a 20 year old Sports & Fitness Studies student, to kidney Failure, to becoming the “Fastest Sick Person in Europe”.

Or, I could start with; healthy student, to dialysis patient, to transplant recipient, back to dialysis patient, to transplant recipient again, to husband and father, to…

I love the KidneyTrails.com goal of “…bringing real life experience from those that have travelled the road of kidney disease” however, if we are honest, life with kidney disease is more like travelling on a rollercoaster than a road!

If I was to offer any advice from my journey with kidney disease it would be that we need to focus more on the mental and emotional aspects of our health.

When I was diagnosed, as a 20 year old sports student, I put my very ill body in the hands of my healthcare team. They did a fantastic job. I went into the hospital with blood pressure so high they worried I would have a stroke. Several of the blood vessels in my eyes had burst resulting in vision problems, and my body was in a very toxic state.

Two weeks later I left the hospital, as a dialysis patient, in a better physical state but, what about me, as a person? My life, my goals, my family situation, my work, my mental and emotional health?

There was no help. There was no “treatment protocol” for these things, nothing.

I found the shift to becoming a “sick person” very difficult to comprehend not only on a physical level, but on a mental and emotional level also. Maybe even more so! 

Today, after experiencing 2 transplants and 1,800 haemo-dialysis sessions, I’m in a much better place. I’ve been lucky enough to become a public speaker highlighting the realities of living with a long term illness and overcoming adversity”.

Today, I look at three key stages we need to consider.

Firstly, ACCEPTANCE. When we understand and begin to accept our illness, in all its limitations and challenges, we can begin to move forward with our lives.

Next, our ATTITUDE. As hard as it may seem, we need to create a positive, forward thinking attitude which again takes into account the realities of living with the disease. We need to see the potential we have to thrive with the disease. Kidney disease can change us but it can also inspire us to create a better version of ourselves. This attitude enables us to “live” with kidney disease and not “suffer” with kidney disease.

Finally, ACTION. Without taking action to better ourselves, acceptance and attitude are merely words and wishful thinking. For me action is vital, and I credit exercise and becoming involved in the Transplant Games as pivotal in developing both acceptance of my illness and a positive attitude. This is mainly due to meeting role models who inspired and taught me what was possible through their living example.

darren cawley Transplant games podium

From my viewpoint what I’d like you to understand is that life with kidney disease IS hard and certainly a bit of a “rollercoaster” but it doesn’t have to be debilitating.

We all have goals, dreams and passions and If we look to our mental and emotional health, as our healthcare team looks at our physical health, we all have the potential to live well with kidney disease.

Finally, you might “lose yourself” for a while on this difficult journey but be assured, the kidney community is a great community. There are loads of people out there who have been through difficult times, like you, and will gladly help you in any way, myself included.

Darren Cawley

Motivational Speaker

Educator

Editors Note: The Kidney Trails Team would like to thank Darren Cawley for sharing his valuable insights about Kidney Disease. If you would like to find out more about him visit his website: Darren Cawley – Irish Motivational Speaker and while you are there download his book “5 Ways I Tackled and Thrived Through Kidney Failure.” This book has many valuable insight to help you on your journey.