Finally, I’m ready to share: My traumatic year dealing with kidney disease

Noelle Khalila Nicolls Surviving Dialysis 80 Comments

I have end stage kidney disease. If it sounds scary to you that is completely appropriate because it is scary as hell. End stage kidney disease is a chronic condition and it’s turned my world upside down.

I was sitting in a conference room with a group of clients and one of them said: “Noelle, you need some rest. You look sick.” In her mind I was overworked. I had been busting my ass on this project and little did she know I was weeks away from an operating table where I would undergo emergency surgery.

Inside I was an emotional wreck. I knew I felt sick, but like a delusional functional drunk I didn’t want to affirm it. Anyhow, I couldn’t be sick because I was still outputting at my usual high level. Yea, it was infinitely harder to do so: fighting the uncontrollable fatigue; the desire to just stay in bed and screw my responsibilities. But here was a client, oblivious to my real problems, laying it out there like an unfiltered child. I was sick and I needed much more than rest.

A month or so before, I was at my regular hair salon getting a pedicure. My pedicurist said: “Your feet look swollen, Noelle”. I rebuked the thought, because I knew swelling was another symptom of the deteriorating condition. The worsening symptoms came one by one: extreme fatigue, swelling, loss of appetite, a persistent and unexplainable down and out feeling, drooling, tingling in my body, and then the one that tipped the scales for my doctors, vomiting.

I have a rare, untreatable kidney disease. How do I know? They cut a tiny piece of my kidney off during a biopsy and put it under a microscope. It revealed two shriveled up organs that were full of scar tissue. How did I get it? Well, I don’t have Lupus; I don’t take heroin; I don’t have HIV; I’m not massively obese. All of the known causes of this rare condition don’t apply to me. In other words, I have it because I know I have it. The rest of the story is unknown and untold.

The kidney is a vital organ. It’s little but powerful as hell. Doctors can monitor your levels of functionality, and when you drop below 15% functionality they diagnose you with end stage kidney disease. The natural progression after that is a quick road to death unless you find a replacement treatment (dialysis or transplant).

So when I started vomiting, it freaked me the hell out and I went to my doctor. Some time ago, my doctors told me dialysis would come, but I was running on beast mode and my kidneys were playing along so I deferred for when things got really critical.

That time came. Vomiting is a symptom of uremia. Believe Wikipedia when it says: “Without intervention via dialysis or kidney transplant, uremia due to renal failure will progress and cause stupor, coma and death.”

Uremia is basically blood poisoning due to the build of up toxins in your blood. Those are the same toxins you usually dispose of when you urinate, so uremia is like blood saturated with piss. Yes, I was on track to die in an indoor pool of my own piss.

So I asked the doctor, what is the risk of waiting (to start dialysis)? He said: “In three months you’ll probably be dead.” Your blood is toxic and you need to clean it now. I want you on the operating table in the next three days.

My mother was in the room with me. Picture that moment.

My doctor, he’s not a psychic; he’s not God; and to a certain degree, doctors don’t know shit, but boy did he hold the power to scare me shitless.

What happened next?

I’ll tell you all about it as I write my way through the trauma and healing. (Thanks to my sister Kerry for the encouragement to write). 

I invite you to take this journey with me.

Comments

comments

Comments 80

  1. Hey Noelle it’s Kyssy, can’t say I know what you are going through but believe I can just imagine. My mother was diagnosed with heart desease in August 2014 and a year later the side effects from the medications have cause kidney and liver distinctions. Its a difficult time but just remember the persons who love you and those lives you have impacted. Be strong and I will remember you in my prayers.

  2. Hello Noelle!

    I am a friend of your Mom and Maureen Chambers. I have been praying for you! I want to thank you for deciding to share your story and journey.

    There is absolutely NOTHING that is too hard for God! Continue to remain positive and encourage others to be brave when facing adversities.

  3. I am glad you shared your story, my father in law have been doing dialysis for the last four years and it has been a very emotional taxing journey, but once you have support it makes it easier. I would also like to share my sister story who the Lord healed from stage 5 cancer, the doctors are still in shock. Nothing is impossible for the Lord to do what she did, each day she found one of the promise of God and meditation for the day and speak it over her life, that was three years ago.

  4. Noelle, firstly thanks for sharing. My heart did a little lurch when I read this.. you are one brave soul, a beacon.
    I don’t know where this will all lead, but yes I do believe you will get through it.. your ‘personal Legend’ is not yet fulfilled.. there is so much more to this story.
    Believe.

  5. I have always admired you Noelle.. my admiration grows..
    Your story is not yet done.. I do believe you will get through this.
    Through faith will come healing.

  6. Noelle, this comes a shocker and I do understand your struggles to some extent as I work at a hospital and see patients who suffer a similar faith on a daily basis. I know you are a strong person and you will put up an valiant fight against this. All the best and my prayers will be with you.

  7. Noelle, thank you for having the courage to share this painful and enlightening path you are on. I know you will help many by telling your story in real time. I wish for you the rest you need; the medical and community support you require; a return to good health; and the openess to keep learning and sharing your journey. Many blessings.

  8. I cannot say that I understand how you feel….however I wanna be able to support you as needed through your journey. A glass of water…a plate of food. Whichever way I can show you some support during this time..

    🙂

  9. Noelle,

    My thoughts and prayers are with you for complete healing. I observed the effects of kidney failure on my dad many years ago.

    Recently I had to intervene on behalf of my youngest brother who was diagnosed with it but thankfully he is receiving dialysis while awaiting a donor for a transplant.

    Be encouraged and strong with overcoming faith.

    Shervin Stuart

  10. You brave, brave woman. I don’t know what to say but please know that you will be in my thoughts and prayers.

    All my love, Janet

  11. Noelle darling, I am so happy that you have finally confronted this disease and decided to take us along on your journey to wellness.

    With much love and plenty prayers,

    Aunty Sharon.

  12. Stay strong Noelle, and use wisdom to follow the doctor’s advice. We need your courage and insightful writings to refresh and challenge our minds, so hang in there. Just recently had as kidney scare myself and had to be hospitalized so I understand as little bit of the terror. I’ll keep you in my prayers.

  13. Without a battle there is no victory!
    God, Family, Friends and Unwavering faith ….. Battle won …. Victory!
    Go Get Em Girl! And….. Thank You For Sharing!

  14. I will certainly travel this journey with you. GOD is an awesome God and I encourage you to focus on him and claim your miracle. I have personally experienced miracles. They are real. They are real. They are my testimony. I will pray for you.

  15. I’ve always admired the fight in you and even though it hurt to hear you are on a healing journey, in your words I could hear the confidence in you that I still admire! Praying always.

  16. My 19yr old daughter is awaiting tests to determine if she has kidney disease as well, I’m feeling helpless and hurting for her; may God bless you and bring you through this. Thank you for posting your story and whatever the outcome is, you’ve helped me with what could be a difficult road ahead for her.

  17. I pray that you find peace. In February of this year I buried my mother after a 2 1/2 year knock down drag out figght to keep her alive. I pray God’s Bless ssings on you from the crown of head to the soles of your feet in the name of of Jesus. I do not know if you are a believer but I believe “God is in control” in control” in the beginning and the end! Take care my “Domestic Tourist”

  18. Am in state of shock. Find this so difficult to believe. How did you find the strength to continue your work, writing and establishing your own business? Plus the political work too.
    I wish you every strength going forward.

  19. Wow that is scary as I read my heart sinks for you .
    I know you probably have hear this like one thousand times but there is one thousand and one , stranger things has happened through prayer and there is no reason for you to lose faith now , it best to go through this God than to leave him out .
    Be encouraged and I’ll pray for you.

  20. wowwoowo I can’t imagine what it is your feeling, but just knowing that you have been diagnose with such a severe illness out of no where will have the mind racing . That fact that you shared your story shows unbelievable strength, I will keep you in prayer. Stay strong and know the whole world is wishing you all the best.

  21. You are so brave to invite us on your journey with you. No doubt each person who reads this will feel his inner man stand up and salute you. I will be praying for you. Miracles happen everyday and now we will all petition our Father to touch you with divine healing.

  22. I’ve been on dialysis for the past 15 years, keep your spirits up and if you ever need to talk I’m available. (242)424-0900 or 395-0393

  23. Thank you for telling your story. So many persons out there in our country, I am Bahamian too, need to hear your story. Like you they wait some wait too long. I pray you find all the strength and healing you need on your journey. As a dialysis nurse I can tell you it won’t be easy or smooth but if you allow people to help you, it won’t be so bad. I anticipate reading more about your journey. God bless.

  24. As a kidney patient myself, I would love to hear your story. May you be strong as you continue your fight. God bless you and keep you.

  25. I commend your courage in telling your story. My prayers are with you as you continue this journey. I pray the Lord of all Peace and Comfort will safeguard your heart and mind as you put your trust in him. What may appear as the end is only the beginning of a happy eternity with our Master Creator. Many times, we may not understand the BURDEN that are placed on us to bear. No doubt, in your story, there is purpose and beauty, and if it reaches just one person, then that is reason enough, for us who believe.

    Be strong and continue to be of good courage. He will be with you.

    All the Best in Him

    Rionda

  26. You have inspired me. I write this with mixed emotions. Proud that you are so brave, grateful that I have already gained strength from this and upset that you are not well. God keep you. I will pray for strength for you and yours.

  27. Know that your not alone. If you ever need a shoulder to lean on i am here. If you ever need a friend i am here, i guess what im trying to say is you have my full support.

  28. Noelle, there is healing in the telling. So many people stand behind and beside you. We love your energy…and I, for one, vicariously explore those islands of home through you. you are eloquent and strong in so many ways. get well little machine…..

  29. You are a free spirit, Your strengths are to be admired . I will block many a prayer, live aloud as you continue to inspire even in your own despair. Nothing but greater heights for you Noelle. X

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  31. As I read I can’t help but remember Steele. Be strong, hold a firm meditation. Nothing in this life is by chance. I have always been encouraged by your journey, your resilient and persevering spirit.

    I pray your strength.

  32. May God grant you increased guidance .May He shower you with increased grace and mercy and bless you with complete healing very soon. There is wisdom in every trial and affliction. Look deeply inward. I wish you the best.

  33. Noelle,

    I’m sending positive thoughts and prayers your way. The page says that your post has been shared 1.1k times…that is a testament to not only the quality of your writing but the fact that you have become one of the premier voices of our generation. I look forward to reading more about your journey and I look forward to finding out what we can do to help.

    Michela

  34. peace and healing to you Noelle. I have so enjoyed reading your articles. I am sorry to read that you are battling kidney disease. I was born with kidney disease….and I fought the battle at age three…and won. I am almost 45 now. You can do this. I don’t know who you are seeing but my urologist is one of the best!! He is in West Palm Beach, Dr. Bruce E. Wiita….His wife, Louanne is his office director, and her number is 1-561-747-5885.
    how is the dialysis going? are your symptoms improving? Are you a candidate for a donor kidney?
    FIGHT FIGHT FIGHT!!!!

  35. I honestly hope you can be healed with spiritual or medical intervention.

    My mom has minimal change kidney disorder. And I would like to know more about your case in an effort to help her through it.

  36. Yeye oshun, Pele o(I greet you with gentleness). Amazing courage and inner strength., Your spiritual mother Oshun, is something else, she choose you to demonstrate her healing power, I will with your permission send you oshun ase and kawo ase.Your writing is inter dimensional, what courage and love you possess. Ire baba

  37. My family and I are praying for you Noelle. Continue to be strong and encouraged. God bless you and keep you. Please give my love to your mum and dad. Xoxo

  38. Praying for you I am a dialysis patient also I have been on dialysis for 1 yr and 7 months and only the grace of God brought me through and everyday I thank him for healing me from where I was then to now he is truely a healer

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  40. This is so real and brave! Thank you for sharing this topic. I will be follow your healthy progress and praying. ❤

  41. Hello dear as I was reading my heart kept racing. I don’t know if I should cry or what. Thanks for sharing I’m here well I’m.miles away but I’m.here will pray with you and for you. Do you Have all the help you need .

  42. God Bless and help you carry the pain. Stay strong you are a champion.
    I truly admire you and want you to survive this all.
    In all things give God thanks.

    Wishing you the very best.’

    Love Cheryl

  43. We are praying for you in your childhood neighborhood. Thanks for having the courage to write your story. May it be an inspiration for others.

  44. Your story is a Beacon of Light for many,
    I pray strength and peace for you.

    Donna has great support so we will all be praying for you.

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  46. Noelle,
    You are so incredibly brave for sharing your story. We are routing for you. If anyone can beat this, it is you.
    God bless you and protect you.
    Hugs,
    Mia

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  48. You are at the lowest point in your sphere, don’t you give up trust and belief will take you through (it is easy for me to say but you have to exercise it
    GOD BLESS YOU .

  49. Thank you SO much for sharing this.. My dad died from kidney failure. He was on dialysis for over 10 years. He lived a ‘normal’ life but did the dialysis 3 times a day – the kidney failure was that bad He inspired me loads because he attained so much despite being ill. Finally his sister opted to be his donar but unfortunately during the process building up to the operation he bled to death

    Am happy you are sharing your story because I never knew what he went through, he always masked ul strength so we didn’t worry. I question at times what I possibly could have done it I find comfort in knowing that he’s at rest

    I would love to learn more but more so pray with

    You are truly blessed ❤️

  50. What a beautiful example of bravery in the face of adversity . Your story will help so many in so many ways. I am looking forward to the next edition . Praying for successful treatment and recovery for you.

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