Dare to be Different

By: Wills Porter

I ran into a friend the other day and he was like..

Mam, I see you doing good.

I see you doing well.

But I am seeing you now and I didn’t know you then.

As your friend I wonder..

How was it way back when?

I will never know, so I just have to ask..

How did you do it?

You were almost blind.

Now you see.

You were almost dead.

Now you are alive and free.

How can this be?

This was my response.

Starting out, it was all well.

Then, my health started to fail.

What was wrong?

No one knew.

My parents had to wonder..

what is all this for?

In the darkness of night..

there was no light.

All I could do was fight.

The end was nowhere in sight.

But there was Atlanta.

Here there was hope.

Here there was a chance…

that answers would abound.

Would a cure be found?

After test one and two, no one knew.

After test three and four, it was clear..

we needed to do more.

So, it was off to Ohio.

Here they said it was bile flow.

After a few weeks we had to go.

Back in the ATL the answer was clear.

This was the biggest fear.

I was in organ failure!

Wait.. wait.

Now wait some more.

My Parents had to think..

What’s the suffering for?

Why me?

When will we be free?

Free from the hospital.

Free from this nightmare.

Free to leave.

Free to live.

Free…

To not survive, but thrive.

After waiting some tine..

It was my chance to shine.

Finally a liver would be mine.

At the hospital the doctors got me ready to go.

Would this really be it?

My parents and doctors  didn’t know.

Either way..

it was my time for me to go.

In the OR it all started well..

It was finally my time!

But inside everything wasn’t fine.

In an instant everything fell.

Heart rate…

Fell.

Oxygen levels…

Fell.

This was not a test.

This was a Cardiac arrest.

In an instant. time ceased.

Surely, I’d soon be deceased.

Surely the fix was in.

By all accounts…

dead is what I should have been.

It just wasn’t my time.

But I still wasn’t fine.

Then came the seizure.

What was going on?

No one knew and answers weren’t in view.

Then the MRI was clear.

This was surely the greatest fear.

Wills, you may not walk.

Wills, you may not talk.

Wills, you may never see.

Was this how  it was going to be?

Was this the future meant for me?

After the cardiac arrest I had a long way to go.

Would I get a transplant?

My family didn’t know.

But there in the darkness of night…

When there was no light…

When I was down and out of the fight…

something was on the rise.

One day all would know and see..

that an overcomer is what I was made to be.

Fast forward 10 years and I was like a different kid.

When I said Philmont my doctors said yes.

However, I had to plan in a different way.

I wouldn’t be told no.

No matter what, I would go.

Then the moment of truth came.

As I sat on the plane I knew I was made for this.

I was made to push the limits.

I was made to push what was possible.

It was time for me to prove the doubters wrong.

It was time for them to see the fighter in me.

Fourteen days later the verdict was in.

After 100 plus miles…

After a 13 thousand foot mountain…

I had reached new heights.

I guess you could say I had leveled up.

That week I learned nothing could hold me down.

After Philmont a new version of me came to be.

When I got back home I  was marching to my own beat.

I was now in the driver’s seat.

My friend, you ask how I did it.

The truth is, I didn’t have a choice.

For a long time I listened to the voice.

The voice said I’d never be enough.

The voice said I’d never measure up.

Then, I listened to the Voice of Truth.

I chose to be a victor.

I found purpose in the pain.

I learned to stand in the rain.

No matter what, I would survive the game.

My friend, here’s the truth…

I know my life didn’t have a good start.

Yet, there’s peace in my heart.

To my past, I wouldn’t change a thing.

                The truth is…

Trophies don’t go to the ones who had a good beginning.

                 The truth is…

Transplant kids were made for one thing…

                        Winning!

                The truth is..

            This is a real fight.  

A fight between dark and light.

A fight between death and life.

Make no mistake, I have been through Hell.

I’ve walked in the darkness and stared Death in the face.

I know this is a long race and the war has just begun.

But like the sun, I know I will rise and shine.

I know victory will one day be mine.

Until then…

I will do what I was made to do and   I will be who I was made to be..

in hopes that other transplant kids may one day know and see…

that they are valued for who they are.

That they are not defined by a scar.

That they are meant to be more than a carbon copy of mediocrity.

That they will drown out the static of this plastic world.

That they will refuse to buy the lies that say they won’t be enough or that they won’t measure up.

That through it all they stand up and stand out.

How did I do it?..

I don’t have a clue.

All I know is that I couldn’t have done it without you.

You challenged me to never be a victim.

You dared me to go against the norm.

You helped me stand in the storm.

Simply put…

You dared me to be different.

So..

different is what I intended to be.

When Good is not Good Enough.

Sometimes in life we can grow up in stricken conditions or experience hardship for so long until it seems normal. We can sub-consciously accept abnormal as “good” and feel no need or desire for better. 

Other times, we can learn to accept the status quo in our lives because we are satisfied with where we are in life and see no reason for better. We accept life as “good.”

Whenever “better” is possible, good is no longer good enough. The “good” mentality is dangerous because it strips you from accepting and living a better life. It causes you to always give the minimum or least effort and live life without expectation. You will find yourself going through the motions and good will go to worse.

“Good is the enemy of Great!” You deserve to live a great life. You deserve to have great dreams and expectations. Your life is not defined by stricken conditions or hardships. You, your family, and friends deserve your greatest effort to better every area of life, (spiritual, physical, mental, emotional, financial), because better is always possible.

Fred Hill

Dialysis Life Counselor

Dialysis Is Not Your Life (available on Amazon)

dialysisisnotyourlife.com / Dialysis Is Not Your Life (YouTube

Round 1: A new fight

It feels like it was yesterday…

It was one day in late July 2010, and I was working and next thing I know I am being rushed to the emergency room. Once at the Emergency room, the doctors said that my kidney transplant that I was living with was rejecting, and I’m going back into kidney failure. I’ve always had a mindset that whatever gets in my way, I will fight, so even with this news, my mind would not allow me to think of the worst case. 

It was not too long, and the Doctors came in and said Mr. Jones, we are going to have to put you back on dialysis. Can I do Peritoneal Dialysis? I asked. Their response was no sir you can not because you need dialysis right now, maybe after you start Hemo and everything is going well you can make that transition. I said ok and proceeded with the instructions my nephrologist gave me and went on Hemodialysis. Now, before I continue into that part of the story, Let me tell how the conversation went with me finding out what dialysis center I would be going to. I walked into the dialysis unit to talk to the nurse and get my information. When she handed me the folder, the first page tells me what center I will be going to. It said a dialysis center further away from where I live. Now, this was a problem for me, as I am sure it can be for many others. Trying to drive after a treatment can sometimes be a challenge, and getting a ride or catching can be futile at best. 

So I asked if there is a way we can find a closer center because that is too far for 3 days a week. She asked well if you have a center in mind(Wham, mission complete) I said yes I sure do. There’s a clinic just right around the corner that is literally 3 mins away from my house . So she looked into it and was able to make that happen for me. The whole medical staff was awesome from the great nurses,cleaning crew,doctor and nutritionist. One of the dialysis nurses on the weekend was my normal dialysis nurse when I went for my appointments at kaiser. In this same process, I was fired from the job that I had. So I’m starting dialysis and getting deeper into full kidney failure (ESRD). I started dialysis in Aug of 2010, by September my kidney function in my transplant kidney and original kidneys were gone. It was during that month, while I was at choir rehearsal for a gospel group, I had a major seizure which I was admitted to the hospital for 2 weeks. When they released me, I was fine with no problems and thought I could get back into my normal life. I found out quickly that I was Completely wrong.

It was Oct 2010, and I had the worst headaches that I’ve ever had. I got tired of hoping it would go away and decided to go to the ER for it. Once in the ER they started to run tests (x-ray, ct, etc.) an Hour or two later than me and my dad were sitting in my ER room the Dr. walks in and looks at me with this look. You know the look, the look that says something is terribly wrong, and it scared me because I had no idea what he was going to say. He says Mr. Jones, um, you have a brain bleed on the right side of your brain(Subdural hematoma) and we are going to be taken to emergency surgery. The feeling in me was basically what just happened. All I could think about was my grandfather that had brain surgery some years before and everything he went through. Would I remember family and friends because I fight as hard as I do for them, and I kept thinking if I can’t remember them, do I keep fighting or know what to fight for when I wake up? I spent a month in the hospital for that procedure. It was these events in those three months that caused me to have a number of other health issues that caused problems for me till 2018. That was the start of a new fight, one that I was determined to win.

Philip Jones Jr

Host of “A Second Chance.”

Broken but not Beaten.

The mind is like a garden: what you plant is what you can expect to receive. Also what you allow other people to plant is what you will harvest. 

Once the Dr said those fateful words my mind translated them into poison for the mind and death for the soul. 

Let me recap what he said.

Doc: Young man your phos is too high if something does not change  you may go into calciphylaxis within 6 months which can lead to a slow and painful death. 

What I heard was a little different. I heard him say that I had 6 months to live and then death. While this was not what he said and I do want to say that it was not necessarily a bad thing. But it probably was not the most positive thing to say. In fact It made an negative impact not only on my life but on my mind. Through the rest of the treatment I joked and talked to the nurses but also I got the point that I needed to change something. During that treatment I started to change. As Jim Rohn say Everything will change for you if you change. I started to research food that was lower in phos and also made a commitment to myself that I would change.

It was after the treatment that the battle came. As I grabbed my bag and walked to my truck and got in to drive home is when I broke.

I broke physically,mentally,spiritually,emotionally and every other way you can think of. My hands gripped the steering wheel and tears came streaming down my face in defeat. The negative thought came in like a flood and I started to slowly drown in a negative sea of thoughts all alone. Why not just wave the white flag and say enough I am done and this is not worth it anymore. You gave it your best and you have been defeated, there is no victory here for you. The pain and agony of sitting in the chair is not worth it is it? 

As the tears poured down my face,some other thoughts raced through my mind. What about my wife I had only been married for about a year and a half, was she to be a widow at such an early age. What about my parents and sister? Would they go to the graveside certain times of the year to mourn the son and brother they had lost. Was I strong enough to overcome this? Why not just give up there is not use going on you will fail again. I am a failure and won’t win. 

By saying or even thinking that you are a failure without looking and learning the lesson can steal the life, the dream, the vision that you have and turn it into an impossible road that not even you can climb.

I have seen these thoughts of this nature overtake the mind of others and it was not long until they never returned. On the way home the tears still came and the thoughts persisted. Once home I gathered myself together and went into the house. Not one word was uttered to my wife or family, there was no need for them to worry about me, this was my battle to fight and my victory to take no matter how hard it may be. Over the next few months I faced some of the worst mind battles I had ever experienced. I have said many times that this was the closest I had ever been to death, now in my life I have come face to face with death on many occasions but never one so close. For if my mind gave into these thoughts then my body would give in to the disease and then my spirit to the grave. You say what the doctor said to you did all that, yes it did but not just him it was me as well. It all plays a part in fact I want you to get this lesson. Looking back, the main one at fault was the broken man in the mirror, the one that gave into the bad choices and chose not to readjust his steps. The one that said one more piece of cheese won’t hurt. The one that said I will take care of it next month. It was me and the next few months would determine if I was tough enough, strong enough for the next step in my life. 

It is in your darkest despair that you may find like I did a hiding place. A place that I would be able to go to refresh and be fed and that place could not be found soon enough.

Until next time there are a few things you can do. First subscribe to the blog so you don’t miss any new and exciting content. Share what you have learned for it may help someone along the way and finally “Stay encouraged along your journey, you my friend are one step closer to the next peak.”

The Valley in the Mountian

Does someone’s words define who you are or what you can overcome? 

There are many people that allow others words to define who they are and what they become and this can be most devastating to someone’s dreams, ambitions, and most importantly their life. 

The Beginning of the Valley in the Mountain 

Being on dialysis is not the easiest journey, but there are a great many lessons that can be learned and applied. I hope that through this blog that you will be able to learn the lessons that I found along the way. 

One of the more challenging things you may face as a dialysis patient is the renal diet. When you have been able to eat and drink what you want throughout your life, and then you are told that you can’t eat this and that it does something to you. I would dare say that it can demoralize the human spirit to a point of no return. 

 As a dialysis patient I did my best to keep as healthy as possible, this included eating to the best of my ability on the renal diet. But after a while I got tired of the same old food, yes my wife tried new ways of fixing food, but after a while that would get old. Especially after looking and smelling the food that I could not have. It started out with one slice of cheese, then ended up to two slices, and then three. My lab work would come back and everything would be good, so why not eat a little more of those things that were on the no list. It was not long until comfortability started to set in and even when my blood work started to creep up the seem reply would come out of my mouth. Yes, I know that my Phosphorus is going up, but it will be better next month.  To those that have been on or are on dialysis, you can see where this is going. I was going down a road that could have severe consequences. 

The food I ate caused my health to deteriorate rapidly, and the blood work showed. I did not feel much different as it was a process of time, and I was warned when it first started that my phosphorus was going up, which was not a good thing. Every time I was told this by the nephrologist, I brushed it off with a laugh and said don’t worry, I just got a little careless this month and next month it will be better. Next month came, and we had the same discussion and the same reply came. Within a few months I was in pretty bad shape to the point my Phos level was dangerously high to the point that I was starting to feel the effects in my body. Then one day a new neurologist came along and was talking to me and decided to look at my blood work. 

As he was looking at the results, his expression said it all, and he said this. 

Young man, your phos is way too high and if something doesn’t change within 6 months you could go into Calciphylaxis which could lead to a slow and painful death.

As he said these words, something inside me broke. For what I heard was not if something does not change. What I heard is that I had six months to live. It seemed that everything around me stopped and all I heard was something breaking. That something was the will to live and every emotion that goes along with that will, and when I would look up, there was no one around to blame except the man in the mirror.

In the next blog, I will be discussing where the battle is and how to overcome it. Until next time, there are a few things you can do. First subscribe to the blog, so you don’t miss any new and exciting content. Share what you have learned as it may help someone along the way and finally “Stay encouraged along your journey, for you my friend are one step closer to the next peak.”  

“ I Don’t Know About This?”( A Patient’s Initial Dialysis Treatment)….Pt.35 Can I Go Now?

Yeah, you heard it right. You’re probably wondering why AW made such an outburst when apparently her treatment is over. Well, when removing a dialysis needle from any patient’s arm access, on occasions it tends to sting a bit. What happens is that just right when a staff member is about to remove a needle , the bevel which is at the end of the needle, the sharp has a tendency to kinda slice a patient’s arm. It stings like only one could imagine. I know this with my experience of having blood drawn. Primarily from my experience with other Renal Patients. For this reason , we at the Kidney Trails Clinic have a policy that’s followed by a technique that explains the less painful way to remove a needle. 

“ Oh my Dwelyn, that kinda stung a bit. You got me sweating all over my body !”….As AW is holding her site for about a few minutes, I replied to her, “ I’m sorry AW, my deepest apologies.”……AW replies,” It’s okay man. I guess I’m also concerned about Cadence. I hope she’s okay. I think after I’m done bleeding, I may get me something to eat. I’ll have my son take me to go see her. You did say she’s more than likely going to the hospital downtown?”…. I replied,” I believe so. AW, that’s very thoughtful of you to go see her.” “ She would really appreciate that.”

After the fifteen minutes went by and AW’s arterial site( bottom site) was ready. It stopped bleeding, and I replaced the gauze that had a little blood on it with a new gauze and topped it off with a band-aid. AW says ,” Hmm this looks okay. Will I be okay to go?”…….I chuckled and said,” Let me remove the other needle which is your venous site ( top site) , and I’ll give it time to form a clot and stop bleeding. Sometimes our patient’s may experience a little prolonged bleeding from the arterial site. You will learn over a period of time how your arm seems to have a mind of its own, LOL.” AW, says to me, “ Why does the bottom site bleed more or a lot for some people?”…. I reply,” Well due to your vessel wall of your access site in your arm becoming thin over a period of time could be the case. More likely if you had an aneurysm. Also, blood flow through your fistula is under an extremely high pressure. That’s because of your artery and veined joined together by the surgery performed by your vascular surgeon.” ……. “ Huh?”… Vas who?” Lol. Well your vascular surgeon is the individual who surgically established your fistula. Remember earlier this morning we talked about that?”…….” Oh yeah , that’s right Dwelyn. My mind is all over the place.” I replied to AW,” Not a problem. But to make it a little more simple for you. Being that your artery and vein are put together. It kinda makes your blood flow stronger and forceful for us to use it for dialysis.” ……AW replies, “ Okay I kinda understand you a little. I’m just glad this first day is over. Now, do I come back tomorrow?”….” No AW, we are going to give you the day off. Come back Wednesday, and Friday this week and the following weeks as well. “…….After AW was all taped up , and ready to go home. Or as I should say, away from here. I took a look around the clinic. Everyone was adjusting back to normal after the incident with Cadence. It just makes you wonder what goes through a patient’s mind. What they observe and how they perceive and if they’re able to receive a traumatic site. 

“ Alright Dwelyn, I’m ready to leave. I packed up my bags and my folded my blanket. Oh, wait I almost forgot my iPad. Where do we go now? “ ( as she sighs)…. “AW let’s go to the scale and get your post weight. Do you remember how this works?”……AW replies,” Let me see if I can remember. Each time I come here I have to get my weight before and after dialysis. Then I noticed that we weigh in kilograms and not pounds, correct?”…….I replied , “ That’s right!”…….AW approaches the scale and her weight is 74.2. When she came in today , her weight was 76.5…….” So Dwelyn, I think when I came in today , my weight was more. You made me lose weight. I can dig this man. I feel like a teenage girl, Lol.”…” Well AW, I’m glad that you had a good day. You were able to meet a lot of people within our clinic. Being that we are one of the most prideful clinics in our area. We have a lot of visitors of high standards that come through here. Who knows who you will meet on Wednesday.”……AW replies as we continue to walk out the door of the treatment floor into the lobby….” Dwelyn I must admit , I was scared , nervous and terrified about coming here. Along with the staff and the other patients, and you of course, it’s been quite welcoming. Thank you.”…….” Anytime AW.”…. “ Wait one second, I have something for you . Here’s the secret mystery drawing envelope that was handed out earlier. You remember when either Dicyn or Denym or Nicole were talking to you, you received an envelope followed by an envelope shower so to speak, Lol.”……” Ooo yeah. I must’ve forgotten it. I hope it’s something good.”…. Just as AW is headed towards the front door to exit, she sees a little girl with her mother in the lobby sitting off to the right. The little girl is full of tears in her eyes as her mother is holding her gently. Being the person that AW is, she proceeds to walk over to her and ask…” Hello there princess, what is your name? And why are you crying? “……The little girl raises her head slowly out from her mother’s arms and says…” My name is Mag. I’m sad because I saw my friend Cadence on that big bed with wheels going out the door with all those men with radios and big bags. I hope she’s going to be okay. Cadence would always come to see us next door . She would read to us and tell us stories and teach us to knit.”…. AW replies,” Awww sweetie I’m so very sorry. I’m sure she will be okay. You said she would come see you and who? Where is next door?”…….Mag’s mother replies .” Ms.AW, my daughter Mag is a pediatric dialysis patient and Cadence would come next door here. Next door is also a Pediatric Dialysis Clinic.

Me consideraron oficialmente insuficiencia renal en etapa terminal.

Cuando me diagnosticaron enfermedad renal en etapa 5, recuerdo haberle preguntado al nefrólogo si mis riñones regresarían. ¿La diálisis sería para siempre una cosa para siempre? ¿Era esta mi vida? La respuesta que se dio, me dio cierta esperanza de que esta cosa llamada diálisis podría terminar muy pronto.

Dijo que parecía que yo era ESRD y que mis riñones no recuperarían la función. Pero……. que eran una pequeña posibilidad de que pudieran volver y si lo hicieran lo sabríamos en un mes o dos.

A través de mis primeros tratamientos, siempre estaba buscando diferentes cosas que me permitieran saber si estaban funcionando. Desde mis aumentos de peso entre el tratamiento hasta el control de mi presión arterial para ver si había bajado algo “a pesar de que estaba tomando medicamentos, todavía estaba alto” y revisar mis laboratorios.

¿Por qué haría estas cosas que usted puede preguntar? Se llamaba esperanza. Espero recuperar la función, espero no tener que hacer diálisis más, espero que no se necesite fístula (hay una publicación sobre este tema muy pronto) y espero no tener que someterme a una cirugía como un trasplante de riñón.

Le había estado preguntando a mi equipo de atención si sabían si mis riñones estaban recuperando la función. Dijeron que el Doctor hablará con usted sobre esto en sus próximas rondas. Estoy seguro de que puedes imaginar lo ansioso que estaba porque todavía había esperanza de que volvieran. Finalmente el médico estaba haciendo rondas y luego vino a verme. Lo que dijo es difícil de sacar de mi mente incluso hoy.

Cuando le pregunté sobre mi función de recuperación renal, dijo que según los laboratorios, mis niveles eran mejores, pero que mi TFG (tasa de filtración de glumor) todavía estaba en el rango de 3-5. Lo que significaba que mis riñones no habían recuperado la función, y mis niveles solo mejoraron debido a la diálisis.

Si se sentía como si alguien me hubiera dado un puñetazo en el estómago. Quería llorar, pero traté de jugarlo y no mostrar cómo me sentía. Quiero decir, quién querría verme gritar mis ojos. No, no, este no es el lugar que me dije a mí mismo tal vez más tarde. Una vez que llegué a casa y todos se fueron a la cama es cuando golpeó. Pensamientos como que era ESRD, la diálisis era mi vida y necesitaría obtener una fístula muy pronto junto con obtener una referencia para trasplante. Tantas cosas estaban en mi mente y junto con estos sentimientos una sensación de pérdida, miedo, desesperanza y decepción. Con todas estas sensaciones era casi demasiado para soportar la carga y sí, lloré esa noche. Muchos pensamientos vinieron a mi mente como, ¿Qué pasaría después? ¿Moriría mientras estaba en diálisis? ¿Era incluso lo suficientemente fuerte como para lograrlo? Esta no fue solo una experiencia de una noche, sino que volvería a lo largo de mi tiempo en diálisis algunas noches peor que otras.

¿Qué me llevó a través de estas largas noches, te preguntarás? Fe y esperanza, fe en que las cosas iban a mejorar y esperanza en que mañana tuviera un día mejor. Ser considerado ESRD me hizo una persona más fuerte y mejor y esta experiencia la miro hacia atrás ahora, y estoy agradecido por esta experiencia. No todos verán una situación desafiante con una actitud positiva, pero si lo haces, saldrás para mejor. A los que puedan estar enfrentándose a esto o algo similar. Entiende que está bien sentir emoción y llorar, pero te animo a que también mires las cosas positivas de la vida.

Recuerda que eres más fuerte hoy de lo que eras ayer y puedes ganar.

Entrenadores de riñón y lo que hicieron por mí.

Entrenador de riñón: Uno que educa, motiva e inspira a aquellos que tienen enfermedad renal. Allí comparten experiencias y lecciones que han aprendido en el camino, para que los pacientes no solo puedan vivir sino prosperar otro día.

Anthony E Reed

En el mundo de hoy hay muchos entrenadores. Tenemos entrenadores deportivos, entrenadores de negocios, entrenadores de alimentos, entrenadores financieros, entrenadores de salud y muchos más. Hay entrenador para casi cualquier cosa en la vida. En este post quiero hablar de un tipo especial de entrenadores.

Ser un paciente de diálisis fue definitivamente un desafío y cuando comencé muchas veces me sentí como si estuviera solo, y nadie podía entender lo que estaba enfrentando. Fue durante estos tiempos que conocí a algunas personas maravillosas a las que llamo entrenadores de riñón. Estos entrenadores no tenían una gran cantidad de conocimientos médicos, pero lo que tenían era igual de importante, tenían su experiencia. Muchas veces me sentaba en la silla y observaba cómo los pacientes entraban en la clínica para comenzar el tratamiento o se iban. Durante este tiempo había algunas personas que se detenían y hablaban y me animaban a seguir adelante. No solo me animarían, sino que también compartirían su experiencia conmigo o me ayudarían a tener una mejor mentalidad, y me indicarían aquellas cosas que fueran positivas.

Tener a estos entrenadores trabajando conmigo cuando empecé fue increíble. Creo que muchas veces si no hubieran estado allí cuando empecé las palabras rendirse habrían estado en mi vocabulario y en mi mente, el valor que aportaron no solo a mí sino a los demás pacientes y a la clínica no tenía precio. Usted puede preguntar ¿por qué? ¿Tiene todo el equipo de atención médica para ayudarlo? ¿Por qué eran valiosos?

Hubo muchas lecciones que me enseñaron, pero aquí están las dos que sobresalen en mi mente. Uno me enseñó a estar contento donde estaba (diálisis), pero aún así me animaban a seguir esforzándome por cosas más grandes (trasplante). El otro me mostró cómo estar agradecido por cada día, sin importar lo desafiante que fuera, y ambos sacaron a relucir lo positivo de la situación en la que todos estábamos. Todavía estábamos erguidos y dando a la enfermedad renal una carrera por su dinero.

Si no crees que hoy sea un buen día, solo intenta perderte uno.

Cavett Robert

Fueron los entrenadores renales los que me mostraron lo que podía ser y por lo que luchar, no solo como paciente sino también como persona. Hablaron sobre lo que era ser un paciente de diálisis exitoso. Así como un entrenador deportivo celebrará las victorias de los equipos, también lo hicieron los entrenadores de riñón. De hecho, fueron algunas de las porristas más grandes que hayas visto. Cuando pienso en un entrenador de riñón, pienso en alguien que está dispuesto a educar, motivar e inspirar y uno que me animaría a subir más alto. Compartieron sus experiencias en el camino para que yo pudiera vivir y prosperar otro día.

¿Y tú? ¿Tienes a alguien que te ha entrenado? Si lo has hecho, dales un grito hoy. Hágales saber que usted aprecia lo que han hecho y lo valiosos que realmente son.

Lo que hago hoy puede afectar a las generaciones venideras.

No pasó mucho tiempo después de que comencé que mi familia y yo estábamos pasando por un momento difícil con los nuevos cambios en nuestras vidas. Ves que la enfermedad renal no solo me afectó a mí, sino que también afectó a mi familia, amigos, compañeros de trabajo e incluso a aquellos con los que estaba cerca en el día a día.

Mi mamá estaba teniendo dificultades para saber lo que podía y no podía comer. Sí, habló con el dietista renal que estaba en mi clínica e hizo lo mejor que pudo, pero todavía era difícil para ella. Estaba acostumbrada a arreglar pollo frito del sur, macarrones con queso, puré de papas y salsa y luego a rematar todo, ya sea un pastel de huckleberry o uno de arándanos y no puedes olvidar el helado. Papá hizo lo que pudo, pero pude decir que realmente le molestó e incluso dijo hijo, ojalá supiera qué hacer, todo lo que puedo decir es que estoy aquí para ti si me necesitas, y si pudiera quitarme esto, lo haría. Ahí estaba mi hermana. Recuerdo una vez que estaba en el hospital, mi hermana estaba con algunos de nuestros amigos y estaban jugando voleibol, pero le había afectado tanto que ni siquiera podía jugar, simplemente se sentó en las líneas laterales y lloró porque su hermano no podía estar allí y divertirse.

Fuera de mi familia, mi madre parecía tener el momento más difícil con la noticia de que su hijo tenía que ir a diálisis. Muchas veces pasaba por la habitación de mis padres y la puerta estaba cerrada y podía escucharla llorar pidiendo de alguna manera que su hijo volviera o encontráramos un trasplante rápido. Pero entonces algo cambió, mi mamá es dueña de un taller de alteración (uno que repara o altera la ropa) y un día un cliente entró a recoger algo de ropa que le había dejado a mi mamá para que la arreglara. Durante este tiempo, mi madre terminó diciendo que estaba en diálisis y que todos estábamos teniendo dificultades, especialmente con la comida. Esta persona dijo que lamentaba que tuviéramos que enfrentarnos a esto, pero tal vez podría darnos algunas ideas sobre qué cocinar. Usted ve que ella era una dietista renal que había trabajado en diálisis anteriormente.No sé mucho sobre el resto de la conversación, pero puedo decirte que después de que el cliente se fue, mi madre corrió por las escaleras. Estaba emocionada, no, estaba extasiada, porque esta persona no solo le había dado ideas, sino que lo más importante era esperanza y aliento. La carga que llevaba era mucho más ligera. Ese día fue uno de esos días que Jim Rohn dijo……

El día que cambia tu vida.

Jim Rohn

Qué efecto tan positivo tuvo esta persona no solo en mi vida sino también en mi mundo. Cada uno de nosotros tiene una gran responsabilidad de afectar este mundo. A esa persona que hizo esto, le agradezco desde el fondo de mi corazón que seguramente afectó a las generaciones venideras. Ahora quiero hacer una pregunta a todos nosotros. Cuando acostamos la cabeza sobre la almohada cada noche, ¿qué tipo de efecto hicimos? ¿Fue positivo o negativo? Es nuestra elección.

Snow day and dialysis?

Snow days, now this is something that most children of all ages love, some adults maybe not as much, especially if you have to go to work in it. I remember when my dad was working, a snow day was something he dreaded being a mailman he had to go to work no matter what the weather. What does that song say the mail must go through, doesn’t matter if it rains or snows, the mail must go through? Ooops got a little off track where it was Oh yes a snow day and dialysis. 

Now I don’t know where you live but here in the Blue Ridge Mountains in VA there is some snow in the winter time, usually not a lot a few inches at the most and if there is not much snow dialysis treatment would go on as normal. But when there was a big snow storm or adverse weather forecasted. The first thing my care team would do once would be to hand out a packet called emergency preparedness. This would have things such as information such as your med list, what to do in case you were not able to make it to dialysis, who to call, what to have on hand in case you lose electricity, how to make water safe for drinking and so forth. 

Once the packets were given out and the weather got closer and a more solid forecast, then they would make adjustments as needed. I remember one time I was at work and there was snow in the forecast. I got a call from the dialysis clinic on a day that I was off of dialysis. It was Aunt B: Hello Anthony, I wanted to see if you would be able to come in today at such and such time to get your treatment in? We will be closing tomorrow because of the snow, and we would like to get your treatment today. Me: Um, let me check with my boss and make sure that I can get off to do this. I just walked into work.  

Needless to say, once I talked to my boss, I headed straight to my treatment. Once there, I was able to get a two-hour treatment because they were trying to get everyone treatment. A two-hour treatment is better than none at all. Once treatment was done, I went straight back to work to finish my shift. 

While this is one experience, there were a few more along the way. Sometimes on treatment day I would get a call to ask if I could come in immediately to receive my treatment. To which I would make every effort possible to make treatment, for it was what kept me living. There were no snow days for me, while it would have been easy to call in or tell the staff I was at work, there was no way that I wanted to miss treatment. 

It came down to what was more valuable to me, my life or other things. In retrospect, the other things were small, especially When you compare them to life.

This was just another part of the journey, and tune in next time as I share with you another part of my Journey on the Kidney Trails. Don’t forget to subscribe to the Kidney Trails blog, so you don’t miss any new and exciting content. Until next time keep traveling on to the next peak, and you may be surprised at the view that is waiting for you.