Some of the greatest challenges…

How do you pull yourself up out of a valley so low that you can not even see light from the sun?  Simple, stop looking down in the valley and start looking up.

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In this blog I want to talk a little bit about high phosphors, calciphylaxis and what it can do to someone from my point of view. Now, I am no doctor or a nurse, but I do remember what I was told. When you are on dialysis, there is a way that you need to eat to maintain a healthy lifestyle. While there were many things I needed to watch with as a dialysis patient , I especially had to be careful with. Phosphorus and Potassium, if either one of these levels went to high for me. I could get really sick even to the point of death. While my potassium was fine, my phos went up to 9-10, normal range is 3-5. With phos that high there is a good chance that I was going to develop calciphylaxis which is a hardening of the blood vessels if you want to know more about this you can find more information by clicking this link https://www.mayoclinic.org/diseases-conditions/calciphylaxis/symptoms-causes/syc-20370559 .

Knowing that a high phos level could cause some pretty terrible things to happen to me. I took it very seriously. One of the first things I needed to do was to change my diet and go back to being careful like I was when I started.

Here is an interesting thought: my comfortability allowed my carefulness to turn into carelessness. I had gotten comfortable, but the Doctor made me uncomfortable with his prognosis, which had caused me to become once again careful. I know I just went around Robin Hood’s barn, but you get the idea.

That night I started to look very closely at my diet and realized that I had been eating the wrong foods, and right then I changed my thought process of what I was eating. While this did help, I needed extra help and the Doc had prescribed me a medication that would help get the phos down. 

There was one drawback: this particular medication was quite pricey. In fact, the last time I tried to pick it up, the pharmacy would not let me take it away without first giving them over $3,000 dollars. That will make the moose lose its antlers, lol. Anyhow, the next day, I called my insurance to see how much they would cover for this medication. When I reached the agent, I asked them how much would they cover? Just a minute, Mr. Reed, let me check. As she was getting the information, my heart started to beat faster, and I was getting ready for the disappointing news. Mr. Reed, for this medication you will owe nothing, it is completely covered. I hit the floor with tears running down my face. You don’t know what this means to me. I said this will save my life. By the end of the conversation, both her and I were in tears. But it was not tears of sorrow, but tears of Joy. 

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I sometimes wonder where that insurance agent is today.  I wonder if she really knows the difference she made in my care, and I wonder if she knows that she did not just impact me, but also those that were around me. Furthermore, I want to say here is you reading this is the one that I talked to that day. Thank you truly helped me that day, and you have forever changed my world and the people around me.

I don’t know about tomorrow.

I have heard many people that say that life goes with you or without you. How true this statement is and it became especially true during the spring in 2016. After finding out that my phosphorus was so high and that if something did not change there would be dire consequences. It was a tough time. There were 2 ways that I could look at it.

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  1. Get down in the mulley grubs and fall into depression and let life pass me by and then I pass away from this life.
  2. Or pull myself by my bootstraps and hock my britches up and continue to keep moving forward

To which I decided the second option was best. It did not mean that every day was sunshine and roses after I made that decision. In fact, almost every day was a struggle. A struggle to get up and keep moving, a struggle to paste a smile on my face and act as though nothing was wrong, a struggle to hide this battle from those around me.

It was not long after the experience in my music room that I was asked to play the keyboard in a public setting. How can I play a song when I have no song, I asked myself. It was then my fingers found the song that my heart needed and soul desired and here are a few lines from that song.

Many things about tomorrow, I don’t seem to understand. But I know who holds tomorrow and I know who holds my hand.

As I was playing this part of the song, I could feel every word that I was playing. By the time I finished there was very few dry eyes in the building. Why because I felt the song to the very core of my soul. No matter what tomorrow would bring I knew it would be ok and that I would move on with life.

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COVID Chronicles Conclusion: Resurgence

One night we all went to sleep.

When we woke, nothing was the same.

Many wished this was a game.

Many looked for others to blame.

This disruption had a name.

This disruption was called COVID-19.

As the virus spread

no one could run.

No one could hide.

So.. we were told to go inside.

Quarantine we were told was the way.

In isolation we would all pay.

In isolation, we longed for hope.

Then, we turned on the news.

This is what we heard..

This is what we read…

EXTRA, EXTRA, READ ALL ABOUT IT!

Read about COVID here.

Read about COVID there.

Read about COVID everywhere.

Read about anger.

Read about rage.

Read about division.

Read about hate.

Read about all this and your hopeless fate.

Read about fires.

Read about wars.

Read about depression that will soon be yours.

For a long time

I bought the news.

For a long time

I bought the grim views.

Then I dared to be diferent.

I chose to stand in the rain.

I chose to weather the storn.

I would go against the norm.

This is how COVID Chronicles was born.

In part one..

I set the stage.

In the interlude..

we turned the page.

Today..

we stand at the dawn of a new age.

This is the age of resurgence.

In resurgence

we rise.

In resurgence..

we see with fresh eyes.

In resurgence..

we have no guise.

In resurgence..

we have no fear.

In resurgence..

we shed a tear for those we lost.

In resurgence..

we understand life has a cost.

Today we stand at the dawn of a new age and we stand at center stage.

Let history not say..

“COVID won the day”.

Instead..

let us write of how we found a way.

Let us write of how we found a way to rise from the ashes.

Let us write of how we seized the day and rose in resurgence.

The time has now come.

COVID Chronicles has come to an end.

Yet, this journey has just begun.

What’s next?

No one knows.

Only time will show.

Own It Part 2: The Journey Ahead

What is an Advocate?

When you hear the word advocate, who do you think of? Maybe your view of an advocate is a social worker who helps someone in a time of need. Maybe you think about a politician or non-profit organization that supports a cause important to you. Whoever you view as being an advocate, I think that the main theme is that your view of advocate is someone who is focused on improving the wellbeing of another person (that person may be you or someone else). In the case of this blog series I am not defining advocate in this way. Instead, I am using the word advocate to define someone who uses their voice to speak for themselves. It is my hope that this series will give you the tools to not only speak for yourself but to also confidently navigate the medical environment.

The Journey Ahead

Before we continue in this new journey of self-advocacy, I think it is important for us to consider a few questions. These next few questions are designed to help you reflect on your own self-advocacy journey. Most importantly, these questions are going to focus on helping you find some areas of growth potential in your own self-advocacy journey. If you are just starting out or you feel like yo could do better in how you advocate for your medical needs, don’t worry. I believe we are all on our own journey of self-advocacy and we don’t need to have it all together. In order to Own It you simply need a willingness to learn and dedication. This dedication is not to anyone else except yourself. You have the power within you to be the change you want for your life. The question is simple. Will you own It?

Key Questions

Who advocates for your health needs/do you advocate for your health needs?

Are you confident talking with your doctors about your unique medical circumstances (your current medical challenges)?

Do you feel confident talking to your doctors if you have questions or concerns?

If you have a specific medical condition, do you know how that condition impacts your body?

How can you use this series to become a better self-advocate for your medical needs and truly Own It?

Building You 2022

Are you ready to take your career, your business and yourself to a new level.

The Kidney Trails Team is excited to be able to host the virtual “Building you in 2022” Conference November 3rd-5th 2022

You will hear from the top voices in the Renal, Personal development community. Fill the form down below to register and type in Buildingyou2022 To reserve your spot at the KT Building You Conference 2022. Seating is limited so get your ticket now.

We look forward to seeing you there

The song that could not be heard.

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Most of the time when the going was through, I would go to one of my hiding places. A hiding place is somewhere that I went to try sort through what everything I was facing. Most of the time I would go to my music room and play my keyboard and was able to sort through it all very quickly…

But this night there was no hiding place, no comfort to be found. After my wife went to bed, I went to my music room. As I sat down at the keyboard and placed my hands on the keys. Not a song could be found and nor a melody found that would comfort the very soul. It seemed the song of hope and joy that I had was taken away and replaced by the possibility of losing this fight. As my fingers sat on the keys unmoving. The tears fell from my eyes and trickled down my cheeks on to the ivories, and they played a song and melody that only the master could understand and hear.

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You see the tears came from the depths of my heart and created a song so sweet that it touched the master heart, and a peace flooded my soul, and I knew that I would make it. To most it would have looked as though I had given up and they looked like tears of despair and hopelessness. But to the master it was the tears of a lesson learned and also the tears of the grit and determination to keep moving.

If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl. But whatever you do just keep moving forward.

Dr. Martin Luther King

Though I did not know the road ahead and what it was ahead there was no doubt that I was going to keep moving.

Sometimes our greatest challenges in life may bring us to tears and it may seem all is lost but know that life takes notice and help will come but it up to us to dig down to the depth of our very soul and find the grit and determination to keep moving forward. While this night was difficult it was just the start of one of the longest and grueling battle that I had ever faced and if I did not win this battle there was no coming back and my life would be no more.

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.”

Joy in the Journey Part 6: Classic City

Take a Leap

In the previous post, I discussed the importance of not buying into the low expectations others place on you. When I was in high school, I did not do a good job of drowning out the negative voices in my life. It wasn’t until I was a Junior in highschool that I had learned how to overcome the bigotry of low expectations. Thankfully, I had the benefit of having positive voices in my life that provided an important counterbalance to the lies I was being fed. That said, there was one low expectation I just could not get over. That expectation was that I was not fit for college. By the time I graduated, I had no idea of where I would go, what I would do, or who I would one day become. In many ways, I questioned if I was enough. Could I really push the limit of what I thought was possible? I would only know if I took a leap.

Athens Bound

When I started my sophomore year of college, I had become someone I never thought I Would be. No longer did I buy the lies that said I wasn’t enough. No longer did I let others define for me what I could do. With the help of tutors, mentors, and excellent teachers, I stood ready to step into who I was made to be. Beginning in the middle of the year, I started looking at colleges where I could transfer and continue my education. I was mostly considering small schools. After looking at many schools, I found that none of the small schools interested me. So, I started considering larger universities. Ultimately, I chose to apply to the University of Georgia. A few months after applying, I got the official letter of acceptance. When I read the letter, I couldn’t help but think back to all the people in my life who said I would not be enough. This letter was physical evidence that these individuals were dead wrong. This was my vindication. My chance had finally come to show what I was made of.

Between the Hedges

On day one of classes my life between he hedges began. With the help of my academic advisor, I selected a major and began my journey between the hedges. At that time, I wanted to go into the field of child life. After considering a few majors, I ultimately decided to major in Human Development and Family Sciences. In the two remaining years I spent at the University of Georgia, I learned from incredible professors and truly found a new home within the college of Family and Consumer Sciences. In the process of completing my undergraduate education, I made a key decision. That is, I chose to no longer pursue Child Life as a profession. In my view, I wanted to focus on the challenges transplant patients experienced within and outside the clinical setting. After much research and reflection, I decided to apply to social work graduate programs. Shortly before graduation, I found out that I had been accepted to the Social Work program at the university of Georgia.

Next Stop…

On the day I graduated from the University of Georgia, I had mixed emotions. While I was excited to graduate, I couldn’t help but think about my transplant friends that never lived to have the chance to attend college. As the fireworks went off at Stegman Stadium, I looked into the night sky and had a powerful thought. I’m not done! I was about to go to my next stop. At this stop in my journey, I would face the unknown territory of graduate school.

Own It Part 1: Welcome to Reality

Own It Series Introduction

At the age of twelve, I bean one of the greatest experiences of my life. At the time, I did not realize it, but looking back, the teen clinic experience at Children’s Healthcare of Atlanta was truly incredible. The goal of the transplant teen clinic program at CHOA was to help teens become knowledgeable about their own specific medical situation and take responsibility for their own health. In short, the transplant teen clinic goal was to help each patient become their own advocate.

Welcome to Reality

In my first teen clinic I learned the basics of understanding my lab results. I also learned more about the specific medications I took and how to practice healthy medication adherence habits (such as taking my medications at the right time). When I left the first session, I was so excited to learn more about my medical situation. Between the time of my first and second session, I researched and learned more about my specific medical situation. I also attended the CHOA transplant teen camp. At this camp, I was able to see my camp friends and learn things that regular clinic did not have time to teach. For example, we learned about the importance of nutrition. Most importantly, we learned the importance of developing healthy eating habits and avoiding foods that interacted with my medications. Just after two years in the teen program I was able to explain my entire medical history to my doctors. By the time I aged out of pediatric care at 18, I was prepared to take the next step in my post-transplant care journey.

A New Chapter

I remember the final teen clinic appointment vividly. Every one of my doctors was happy to see me age out and celebrated my accomplishments. I on the other hand was terrified. I did not want to leave CHOA and was afraid of the transition from pediatric care to adult care. What if the doctors are terrible? What if I had to get a biopsy? Why were my parents not understanding my fears? I had never done this before. I was terrified to leave CHOA and was convinced that I was going into the unknown completely unprepared. I remember breaking down in front of my doctors and then in front of my dad on the drive home from the hospital. What I did not realize was how prepared I really was.

When I went to my first appointment at Emory, I was still terrified. However, after meeting my main doctor, all of my fears vanished. My doctor was incredible. When he asked me about my medical history, I gave him a full rendition of my medical history without even thinking about what to say. In that moment, I realized I was ready for the next phase of my transplant journey.

Time to Own It

Owning your own medical care can be intimidating. Take it from a transplant recipient of over twenty years when I say that navigating your own medical care is not always easy. Between multiple doctors, medications and everyday life, we so often place our main focus on survival. when we do this we forget that we too have the power to own our own medical care and do more than survive. When we own it, we begin to take control of our own medical situation. When we own it, we dare to be different

Are you tired of just surviving?

Do you want to take control of your medical care?

If your answered yest to these questions, then this blog series is for you!

COVID Chronicles: Interlude (A new page)

In the prelude I set the stage.

I said “too many live in anger”.

I said “too many live in rage”.

I said too many give into the fear of our age.

But today we turn a page.

Welcome to the interlude.

By now you know.

By now you’ve seen.

This is not a test.

This is the real thing.

This is real life.

This is a real fight.

So, like riders in the night.

We must make haste.

We have but little time to waste.

In the interlude

we throw off the guise.

I guess you can say we have no disguise.

The time has come to rise and tell the truth.

The truth is..

We’re at the end of our rope.

The truth is..

We’re struggling to cope.

The truth is..

We’re longing for a break.

The truth is..

We’re wondering who else COVID will take.

The truth is..

Hope is what we’ve let COVID steal.

The truth is..

We don’t say what we feel.

In the prelude I said locking in may work well.

However, isolation and depression doesn’t sell..

it puts you in a cell.

This cell is the prison of the mind.

Here depression and darkness is all you will find.

In the interlude, I say..

Isolation alone isn’t the way.

In isolation we assume we can do this alone.

In isolation we retreat into our phone.

In isolation we live day by day hoping that somehow this is the way.

But I say there is another way.

Today we all stand as one.

Today, the story is not done.

Today, the story has just begun.

So..

Let us run towards the unknown.

Then our resillience will be shown.

This is the anthem of the immune compromised.

We know what it means to fight for our life.

We’ve faced trials and tribulations.

Yet, we’re still standing.

We’re still here.

So, what have we to fear?

The hour of action is near.

In the prelude, I set the stage.

In the interlude, we turn a page.

Now you know.

Now you see.

That today…

You and I can take control.

We can write on History’s scroll.

What will we write?

What will we say?

Maybe, just maybe, we will seize the day.

What do you say?

Joy in the Journey Part 5: Expectations

What do you Expect?

If you want to go far in life you must have expectations for yourself. Unfortunately, we so often listen to and adopt the expectations others have of us as our own. In some cases, this can be helpful. However, this can also lead to someone falling prey to the bigotry of low expectations. In my own transplant experience, I have seen this all too often. What is worse is that these expectations are often projected on us from those we least expect. Regardless of who perpetuates these low expectations, you have a choice. You can either feed into these low expectations or set higher expectations for yourself. In these next few blog posts, I am going to share about my own experience when it comes to dealing with low expectations. More importantly, I am going to share how I chose to not let the low expectations of others predetermine my future potential.

Dealing with Low Expectations

Throughout my transplant journey, I have seen what can happen when someone chooses to feed into the bigotry of low expectations. At one point or another in our lives I think we are all faced with this dilemma. On one hand, we have expectations for ourselves. However, these expectations may be dramatically different than what others expect from us. I remember the first time I had to deal with the low expectations others placed on me. At that time I had just started highschool. At my school there was a test every first year student in highschool had to take. The idea behind this test was to determine the highest preforming students at my school. After taking the test, I knew that I didn’t do as well as I hoped. However, when I took the test to a school administrator that was tasked with helping each student understand the test score implications, I was shocked at what the administrator said. In short I was told by the administrator that the scores I got indicated that I may need to reconsider college. As I was going home from school that afternoon I kept wondering if what the school administrator said to me was true. If it was, then I had some serious thinking to do about my future. In my view, the test scores and the words of my school administrator were an indictment of what I could not do. In reality, all of this was a massive lie. With the help of my family and some great tutors at my school, I came to realize that only I could determine my future potential. In order to do this, I had to dare to be different.

Dare to be Different

No matter where you are in your transplant journey, we all will deal with low expectations others place on us. These expectations may come from a diagnosis, a teacher or from your own family. No matter where these low expectations come from, I challenge you to not let the words of others alter how you view yourself. Instead I challenge you to surround yourself with those who have your best interest at heart and are willing to help you realize your full potential. Even if you are facing many challenges, remember that what you are facing today does not define you. You are more than a number. You are more than your diagnosis. You were made to be more than a carbon copy of mediocrity. You have the power in you to overcome your current circumstances and make a difference in this world if only you will dare to be different.