The Difference Between Life, Death, and Polycystic Kidney Disease

My beautiful, 30-year old face.

My beautiful, 30-year-old face.

A couple of weeks ago, I was finally coming to terms with the fact that I’m thirty years old. My birthday was back in December, and watching your youth fade away with each lost hair and each added pain can be a bit overwhelming at times.  Even with all these new and strange things happening to my body, I was finally getting to accept everything about my new age.  Looking on the bright side, I realized that I am the healthiest I have ever been in years, I had lost a bit of weight, and with my blood pressure under control, I felt great!  Thirty is going to be a breeze!

Then, I was diagnosed with a life-threatening and incurable kidney disease.

This is the same, exact kidney disease that has haunted my family tree for generations.  Polycystic Kidney Disease (PKD) took the life of my mother and my grandfather, and is currently wreaking havoc on my sister, my uncle, and several other relatives.

Polycystic Kidneys

The threat of it has always loomed over my head, and I’ve known that any one of my brothers and sisters could have it.  But it’s me.  I’ve got it, now. I’m scared.  Scared of dying and scared to live.  I’m healthy for now, but the uncertainty of how many good years I have left before I get sick is terrifying.  Will I be able to provide for my family?  Should I send my wife to college just in case my health keeps me from working?  Should I have bought more life insurance?  Am I going to be able to afford the doctor bills that will come from my treatment?  Should my wife and I have any more kids knowing that each one has a 50% chance of having the disease?

Thanks, thirty.  Thanks a lot.  I really needed this.

Until it’s your CT scan report that reads things like “innumerable cysts” on both kidneys and the on the liver, you really don’t know how you will react.  Everyone will probably read this story today, think to themselves, “awww, poor fella”, then go on to something else and not think any more about it.  I know how that process works… I’ve reacted the same way when others have announced similar sad news.  The only problem is that this time, I’ve got to live with it for the rest of my life, however long or short that may be.  Mom died at 47… how much longer do I have?

When the sharp pains began in the left side of my back, I knew something was wrong.  The next day, upon arriving home, I sat in my truck as the realization  hit me that the problem was that I had PKD.  I wouldn’t have the confirming results from the doctor’s tests for another four days, but I knew that this time the bullet could not be dodged.  I had this distinct feeling that this was PKD, and that this would be with me for the rest of my life.  I was terrified of how this would affect not only my life, but everyone around me until the day I die.

In all of this selfish pity-party I was going through, I remembered that this was Easter weekend.  This is the time of year we celebrate the death and resurrection of our Savior, Jesus Christ.  This is the same Christ who Isaiah said “was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.” (Isaiah 53:5)

Jesus Praying in Gethsemane

This is also the same strong and eternal being who cried out to God the Father in agony in his darkest moment saying, “Abba, Father, all things are possible unto thee; take away this cup from me: nevertheless not what I will, but what thou wilt.” (Mark 14:36) Oh, how I wish this were not the cup I am called to drink.   But, surely if Jesus Christ called out to His Father in prayer and supplication, I may do the same and find help.  If Christ can overcome all things, surely I can overcome the few stumbling blocks that have been placed in my way.

One of the most tender moments in Mormon scripture is when the Prophet Joseph Smith was locked up in Liberty Jail in Missouri.  This was Joseph’s plea:

  1. O God, where art thou? And where is the pavilion that covereth thy hiding place?
  2. How long shall thy hand be stayed, and thine eye, yea thy pure eye, behold from the eternal heavens the wrongs of thy people and of thy servants, and thine ear be penetrated with their cries?
  3. Yea, O Lord, how long shall they suffer these wrongs and unlawful oppressions, before thine heart shall be softened toward them, and thy bowels be moved with compassion toward them?
  4. O Lord God Almighty, maker of heaven, earth, and seas, and of all things that in them are, and who controllest and subjectest the devil, and the dark and benighted dominion of Sheol—stretch forth thy hand; let thine eye pierce; let thy pavilion be taken up; let thy hiding place no longer be covered; let thine ear be inclined; let thine heart be softened, and thy bowels moved with compassion toward us.
  5. Let thine anger be kindled against our enemies; and, in the fury of thine heart, with thy sword avenge us of our wrongs.
  6. Remember thy suffering saints, O our God; and thy servants will rejoice in thy name forever.  (Doctrine & Covenants 121:1-6)
And then we read the comforting response Joseph receives directly from the Lord:

7.   My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;

8.   And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.

9.   Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands. (Doctrine & Covenants 121:7-9)

What a comfort it is to be reminded that when I signed up for “life”, the Lord only intended for it to be a temporary time.  That’s been His plan from the beginning for all of us.  If we stick with it…all of it… then we’ll be blessed with an eternal reward that is greater than anything this temporary life could ever give to us or take away from us.  I also couldn’t dream of any greater earthly support system than the loving family and friends that I hold so dear to my heart.

And now at the end of this beginning, I’m realizing that I have many things to be thankful for.  What lack of gratitude would I be showing God if I forgot all of those numerous blessings and only began focusing on how dreary my condition is going to be?  What a blessing to know that even though PKD may be incurable, my faith, my hope, and my spirit may be renewed and revived.  As hideous as polycystic kidneys may be, Christ has made it possible that I may one day be resurrected, perfect and disease free.

For as in Adam all die, even so in Christ shall all be made alive. (1 Corinthians 15:22)

Joshua B. Pettus

Your Friendly Mormon Neighbor

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25 Responses to The Difference Between Life, Death, and Polycystic Kidney Disease

  1. hanneyjo says:

    Heeey, I took that picture! Of your face, not the kidneys.

    For the record, this hasn’t been an “aww, poor guy” and move on thing for me. I cried a lot. I hate this stupid disease.

  2. Jennifer says:

    Joshua i sit hear with tears goin down my face as i read your story thinking of you and your mom. Can’t imagine getting the bad news. But, try to always remember wat you just wrote. Love you and your family

  3. kristi sharp wilkinson says:

    Joshua, what a beautiful testimony…thanks so much for sharing. I think of your entire family often. Y’all are all such great examples…even Amy;) You will be in our prayers.

  4. Leigh says:

    Ditto to Kristi’s post, Joshua – love you all. You are such an example for all of us.

  5. AnnaLee Tillman says:

    Joshua. . . I think that I too knew when you shared that your lower back was hurting that you had PKD. You are in our every prayers and know that you are loved by us. Hope, faith, and grace is what we cling to always! We as your extended family need to reach out and find ways to support you best we can. Life is and will always be worth living, despite our challenges and you have much to live for!! What is the name of the PKD support and finding a cure called? I think as your family we need to be actively involved in these programs.

  6. Donald Coon says:

    Joshua I am at stage 5 with this disease and am having very bad days lost three Uncles to this disease my brother is at stage 4 and his son also have this we must turn it over to the Lord and enjoy day by day with our friends and family from being able to work 18 hours a day for the military on aircrafts now all I want to do is sleep my liver is so huge and the kidneys are as big as two basketballs, I live in Colombia and the doctors here want money up front for any treatment the only woman in the world that loves me and stands by my side is here in Colombia neet her as I WAS WORKING FOR THE STATE DEPARTMENT NINE YEARS AGO, I was a instructor on C-130 aircrafts for the state department here in Colombia then bang my health fell apart, its is very hard, but deep within myself I seek the Lord, no more friends come around, I only have Ana and the Lord and two dogs which love me everyday please hold on to God cause that all we have, God bless you and believe.

  7. Joshua- this is an incredible and moving piece- Your acceptance and thankfulness in the face something like this is remarkable. You are a real man of strength and faith and I feel lucky to have read your story. I look forward to following you for very many more posts and I am thankful that you are in our small forum….Much love and hope to you and your family.

  8. Que Fregados says:

    I’m speechless – I had never heard of PKD before and am looking through websites to better understand it. I hope to read of the progress in treatments and ease of any discomfort. I’ll be visiting and enjoying your “beautiful, 30-year-old face.”

  9. Kate says:

    My father was diagnosed eight years ago with PKD, and only decided to tell me two weeks ago. I’ve been on a rollercoaster since then. Sad and angry that my father is sick, frustrated because I know almost nothing about PKD, and scared because there’s a chance I could get it, or worse have passed it on to one of my little girls. I’ve been avoiding reading about it, and scaring myself… Until tonight. Tonight as I was laying in bed trying to sleep I felt compelled to pull myself out of bed to do more research.

    As I was reading I noticed that a new tab had popped up on my browser- I went to close it, but not before I saw the title of the blog and the subject of this post. I was baptized into the church last year at age 24. This blog gave me the sense of peace about this diagnosis, the first peace I’ve felt since I found out. I kept thinking that if I researched enough about PKD I would start to feel more comfortable in my own skin- but your words reminded me that this life is temporary, and that if I spend it angry and hurt over things out of my control, then I’m not using the gift that Heavenly Father gave me in the best way.

    I will keep you in my prayers, and thank you much for this. You said everything I needed to hear.

  10. Angie says:

    Wow my emotion are going crazy right now! My brother passed away in 2009 of an unrelated issue, but during his autopsy they found that he had PKD, he was 28. My mother passed away in November of 2010 of complications of PKD at 58, which she had struggled with for as long as I can remember. My grandfather passed away when my mom was very young of the same disease. I was always told that my brother or I had a chance and I have had blood work drawn every year for the past ten years. I did not know they couldn’t tell if I had PKD only through a blood test, that I needed a ultra sound or a test that could actually see my kidneys. Yesterday I went to my doctor with an unrelated issue and we got on the subject of my family history and she said that I needed to get an ultra sound just to make sure everything is Ok. I just turned 30 and now am reading more on the PKD subject and am kind of nervous. Everything I thought I new seems to be wrong. Reading your story and your words has made me think in a more positive way.

    Although I am scared to death to hear the results and to know that I will always have a chance of getting the disease I am going to keep my head up and wait for the results good or bad.

    Thank you for your words!

  11. Stephanie G. says:

    Hi Joshua,

    I stumbled across your blog and i’m happy that i did. I’m also a PKD patient, i’m almost 24 now. Sometimes i find it hard to cope with it. Reading your blog post has helped me already, to think about all of my blessings instead of focusing on the bad event that has been taking place in my body. So thank you, I wish you all the best! x

  12. Quinton Babu says:

    kidney stone or a renal stone is made up mainly of insoluble calcium oxalate which builds with time. It may end up being an extremely unpleasant problem and a few individuals are more prone to having them as compared to other people, that can be because of several factors. Males are more more prone to them as compared to females and women that do develop stones usually happen in their50. White people are much more vulnerable to them as compared to any other race. Usually, when someone has had stones, the best method to prevent future formations is by kidney diseases treatment plan using the diet.In the event that you have experienced a painful renal stone, your very best solution is to take on exactly the same type of diet as somebody following a severe kidney diseases diet since the information are generally comparable. The concept would be to provide the body foods low in calcium oxalate as well as better food choices so the body does not have to work as hard digesting, that reduces the likelihood of stone creation.-

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  13. cece says:

    I was diagnosed with APKD with mets to my liver. I am 43 and it has been a year since my diagnosis. I struggle everyday with severe lower back pain and have issues breathing because my kidneys are so enlarged that they press on my lungs.
    I have a difficult time sitting or standing and trying to get a full nights sleep is a fond memory at this point.
    I can sympathize with your story which brought tears to my eyes and all the fear that you have of uncertanties that cannot be foretold.
    May you be blessed with strength and courage.

    • I’m so sorry to hear of the pain you have been going through. One of the things that I will have to face is that in the future I may be in a lot of pain. Right now I live a normal, pain-free life, but I don’t know how long that will last. I’m not so scared of dying, but I am scared of suffering. That may be my lot in life. I pray God blesses you to be able to overcome the issues and problems your PKD has brought to your life.

  14. Becca Hull says:

    I am only 16 years old, my name is rebecca. i live in wisconsin. i just got my results of having PKD. Both kidneys. My sister who is 21 was also dignoised with PKD, at the age of 10. We both have till we are 30 till we need a transplant. Without insurance and no help from my family, i feel alone. reading your story has left me with some hope though,i thank you for that. im scared…. by the time i am 30 i should be having children, ect. But the thought of giving my own children this stupid disease, kills me. My Grandfather died from this, my aunt was getting treatment and recived a kidney from a family memeber. i hope i can get through this…

    • Becca, I’m sorry to hear about your diagnosis. As soon as I found out, I started thinking in drastic terms… things like, “I don’t want to die” or “I’ll have to suffer the rest of my life” or similar thoughts. I finally had to come to terms with the fact that I am still alive now, I have a lot of blessings, and how miserable I would be if I spent all the rest of my life thinking of how terrible my life was going to be. I’ve decided to finally follow through with some things I’ve always wanted to do or be. I’m writing songs and playing music. I love my family more. I work harder than ever before. I’m making better money than I ever have before. I try to savor little things when I’m in the moment. My decision was to enjoy my life and keep going. Don’t stop. Don’t throw your hands up and think that your life is ruined. You’ll be a miserable, unhappy person for the rest of your life if you do that… and the world is already full of people like that.

  15. Jessica says:

    Dear Josh, I am an 18 year old girl from CT, currently sitting in an anatomy lab studying kidneys in fetal pigs. I have no doubt in my mind heart or soul that God led me right to your page.
    I recently found God only a few months ago and the signs have been everywhere ever since. The messages contained here were just what I needed to hear and at the exact right time. Thank you for sharing this, it truly inspired me.

    I wish you and your family all the best, your integrity is worth more than anything in this temporary physical state were in. Namaste.

    – Jess

  16. JJ says:

    Josh, I want to sincerely thank you for your post. I sit here at work today with tears in my eyes because I’m processing a lot of thoughts and emotion about how what I have feared for 20 years has probably come to pass. My father was diagnosed with PKD when I was a little girl and I have been screened for it every decade. My siblings are older and both avoided it. I am 36 now. During my last pregnancy a few years ago I developed high blood pressure and ultimately toxemia, but the high blood pressure never went away. And I have had the wrong kind of back pain all weekend.

    I am comforted in the knowledge that medical progress has come a long way in the past few decades. My father turned 69 this year and has not needed dialysis yet. Maybe our family is blessed to have the slower developing variety.

    But you have helped me find courage today to go in and see a doctor. I have no reason to fear.

  17. Laurie says:

    My daughter was diagnosed with PKD couple days ago she is only 28. Has only been married for 3years and no children but wanted one so bad.She is so scared and so am I. Of course you find your self wondering why . I just want this all to go away I Love daughter very much .

  18. Justin J says:

    I was diagnosed when I was a teenager, and I am now 28. I lost my Grandmother to PKD last year. My mom had a transplant about 10 years ago and is now PKD free. I have one sibling, a brother who also has PKD. How are you doing now? Have you started seeing a specialist?

  19. Alex D says:

    Hi Bro. Josh,

    I am 42yo from the Philippines. I was diagnosed with PKD 8 yrs ago but has been dealing with Type 2 Hypertension since I was 25. Like you, it was hard to accept that I had contacted this. Took several months to actually accept this was happening. I think you’re on the right track as far as dealing with it. Mind over matter, always have a happy disposition. It helps. Worrying will not solve anything but worsen our condition. After all, this life is but a necessary stage in the plan.

  20. Mommyto2 says:

    I am so glad I was able to find these comments. I just turned 40 and had many of the same realizations that Josh did when he turned 30. This face is not as beautiful as it once was and I am certain my kidneys are not nearly as pretty. I’ve been having pain and bloating for a long time and was given a diagnosis of IBS 8 years ago. Long story short, numerous symptoms popped up in May of this year and my images show a good looking set of grapes, not beans. Just waiting for doctors confirmation. Like most of you, I know what it is. Sad, but at the same time, a blessing to be given something that is manageable for many years and how rich those years will be – for all of us. His peace be with all of you.

  21. lionel jansen says:

    My name is lionel jansen. A few weeks ago my wife and I find out that see also are diagnose with a PKD. For us it was a shocking result, but after reading your testimony we find peace in our hearts. We quickly realise that this is now between God, my wife and I. Thank you for your story. I pray that God will bring joy and peace in your heart.

  22. Donna says:

    Hi your story is very enlightening and i wish you well i too have pkd i am 45 years old and starting dyalisis on Monday i was told i would need a transplant three years ago my function is at just 6 percent however i do not seem to have a lot of the symptoms expected just high blood pressure i have been following an alkaline diet which i found to be really helpful God bless x

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