I'm Back! Let Me Tell You Why...

 

I'm Back!  I doubt anybody reads this blog anymore, but I figure it's time to take it up again.  

I'm sick.  I've been sick for some time now.  Some know this to one degree or another, but I have really tried to not make a big deal of it.  It's been easy to not make a big deal of it, because, truthfully, I feel great!  I don't feel sick.  But I am.  As I've come more face to face with this reality the last month, I've had several sleepless nights.  I've filled much of that sleeplessness with reading about my sickness, what to expect, what my options are and how to navigate this whole ordeal.  Something I read today at 3am made me realize I need to open up, share my story and ask for help.  For this purpose I have turned here, and to social media and possibly to you directly.  

I am in kidney failure.  Here is my story.

I have been blessed with a few auto immune diseases in my life.  I say "blessed" because I truly do count them as blessings.  These diseases have taught me patience, understanding, humility, compassion and have helped me develop a high tolerance for pain and discomfort.  These truly are blessings.  Unfortunately, as I've dealt with rheumatoid arthritis and psoriatic arthritis for half my 52 year life, I spent about 21 years of that life digesting ibuprofen like they were TicTacs.  Ibuprofen was the only thing that touched the pain, so it became something I relied on far more than I ever should have.  

That damn Ibuprofen!

Ibuprofen, coupled with a steady diet of soda, took it's toll over time.  Add to that a few years of high blood pressure (controlled for nearly 20 years now) and Type 2 diabetes (controlled now), only worsened the effects to my kidneys.  Oddly enough, around 2013, I became serious about weight loss and shed 85 pounds by eliminating soda and fast food.  I've been told my whole life that if I lost weight, my health would improve.  Unfortunately, and  possibly only a coincidence, that was not the case.  About the time of this weight loss, I developed gout.  Assuming for about a year it was just a major flare up of my arthritis, I doubled my already high ibuprofen intake to manage the pain.  I and my doctor misdiagnosed the cause and assumed it could not be gout as I had recently eliminated those things that were often the main contributor to gout, but alas, it was indeed gout.  While my gout and my arthritis are now controlled with medication and my blood pressure and type 2 diabetes are now controlled with diet, it has proven to be too little too late.  The damage is done and my kidneys are shot.

I haven't had any pain killers of any sort in at least 3 years since I learned that I had entered stage 4 kidney failure.  I still struggle back and forth with soda, but have mostly eliminated fast food, soda and processed foods from my diet.  I still have some weight to lose, but have managed to only gain back 15-20 lbs of the 85 lbs I lost several years ago.  But here I am, in stage 5 kidney failure.  My spirits are good, mostly.  I am not afraid for me, but I am afraid.  Afraid of my options.  Afraid for my Leah and Dax.  Afraid for Sarah.  

Options....

The first option was my option of choice initially and that is to do nothing.  That has kind of been my plan since first learning about my kidney troubles.  I figured I'd just drink more water and drag this out as long as I can go.  I've done that and I'm not sure how much longer that will be an option.  The positive thing is that I feel great.  I really do.  I think that may be another reason why I hesitate to be more open about this...I feel like a liar kind of.  What I mean is, I don't feel like I look, act or feel like a person that is dying should look, act or feel like.  I feel great!  And for that I am so grateful.  It could be worse, right?  I could be dealing with all of this AND feeling awful, but I don't.  Yes, I get fatigued sometime, but nowhere as much as what I'm told I should be experiencing.  I have some swelling, some cramping, some kidney pain, but nothing that isn't manageable and, again, far less than what others in my situation are experiencing.  God has been good to me and I continue to live life without much adjustment.  

Unfortunately, now that I'm nearing final state renal failure, and truly faced with the reality of things, I can no longer consider doing nothing as an option.  I love my kids and my wife and my life too much.  I have tears as I type that.  Sometimes as a man, you wonder if the life of those around you would be different at all without you, or even possibly better.  I think that may be a natural thought process for anyone at one point or another when experiencing feelings of inadequacy, self disappointment or the like.  However, when faced with the real prospect of it, it's nonsensical to consider.  I know I'm not perfect, but I know I have more to do and more love to share and feel.  I know I need more time to spend with those I love and more opportunity to work at reaching my divine potential.  

Dialysis

Option 2 is dialysis.  While dialysis has come a long way and offers some less intrusive options for at home hemodialysis, the more I read about it, the less I want to do it.  It sounds unpleasant overall and would impact my lifestyle greatly.  I'll spare you the details of how it works and the bummer ways that it would impact my life, but suffice it to say, it's not an option I want to exercise.  I'm willing to go through with it if it is necessary, but simply put, I'd rather avoid it altogether.  According to what I've read, it buys me time, but limited time.  The average person lives 5-10 years on dialysis.  That's a grim thought still.  I realize some live longer, but some also live a shorter amount of time.  I'll take whatever amount of time it could give me, should it come to that, but believe me, it doesn't sound like an option that builds hope as much as it simply delays the inevitable.  I am grateful though for the technology and efforts of the medical world to make this available to those that need it, and me if it should come to that.  I'm also grateful to have a Sister-in-Law, Erin, and niece, Hailey, that work in that field and are connected and supportive.  So, I don't want to look a gift horse in the mouth, but I'm hoping for a better horse.  

Transplant

I have more problems than just auto immune diseases and an addiction to soda.  I also have a built in avoidance to doctors, hospitals and surgery.  I've lived a risk-averse or careful and cautious life, all in the name of avoiding going to the Dr.  For example, I removed my own wisdom tooth.  Yes, I am that guy.  Dentist visit every 13 years and only when needed.  Doctors visit only when they threaten to hold back prescriptions until I come in.  I'm sure their fine people, but I don't like them.  And I don't mean that personally to any doctor I know, just the field and practice in general. I'm also not impressed with "big pharma" and how the government and medical field seems to be firmly planted in their pockets.  At the same time, I recognize the blessing that doctors and pharmaceuticals have been in my life.  When I was first prescribed immunosuppressing drugs about 15 years ago, it was life changing for me.  I'm grateful for those prescriptions and the doctors that prescribed them...eternally grateful.  Yet, at the same time, the quickdraw of the prescription pad always makes me nervous and my fear of prescription drugs still lingers.  It is only overshadowed by my fear of going under the knife.  

I'm at a point now that going under the knife for a kidney transplant is my best option.  I now find myself wishing there was something as simple as a pill I could take to make this all go away, but nothing is as effective as the real thing and that is what I need....a real, but fully functioning, kidney.  My nephrologist recently referred me for a kidney transplant.  The average wait time for a cadaver kidney, or a kidney from a deceased donor, is about 3 years.  That is 3 years of who knows what will happen in the meantime.  The best option and faster option is to find a living donor that matches me for a live transplant.  This brings up another problem I have...the ability to seek help from others.  I'm a pretty self reliant person.  I value those around me and the blessings they bring into my life, but I don't often ask for help.  Sure, I might borrow a tool now and again, but I've not often at all asked for REAL HELP.  

How awful is that?! That the first time I really am seeking help, it's such a big request.  I guess that's why the Kidney Foundation has dubbed it, "The Big Ask.  The Big Give".  How do you really ask someone to give up a part of them for you.  The thought of it is so humbling and a tearful concept to consider.  As I couldn't sleep this morning, that is what I googled, "How do you ask someone for a kidney" and spent a couple hours reading about it.  It encouraged me to share this whole thing with anybody that will read it.  It's therapeutic if nothing else, but hopefully it raises some awareness too.  I realized as I've studied that I may never see the transplant.  I may not even qualify.  I still have to endure what I've been told is an entire day of the most intense physical and slate of tests I'll ever undergo in my entire life...just to see if I can survive a transplant and would be a good candidate.  If I am a viable candidate, and I'm fearful I am not, I still need to find or wait for a living or deceased donor that matches.  

Awareness Can Save

This experience is new to me, mostly.  My Brother Scott's Brother-in-Law, Randy, underwent a kidney transplant 8 years ago. I remember praying for the success of that operation for him and his donor wife, Tami. You don't tend to think about things like kidney transplant until it's something placed in front of you.  I became somewhat aware of it when Randy went through it, but I wasn't close to Randy at that time and so my awareness found a limit.  Now, as I am going through this process myself, I'm very aware of the need for donors and becoming more learned about the subject in general.  Luckily, Randy has volunteered his help and support as I go through this and this is another HUGE blessing to me.  As I've studied, I have been inspired to use the opportunity to not only help save my life, but to help others be aware of the need for donors.  As people read this, they may or may not be a match for me, but they may certainly be a match for others.  I've read countless stories of how deceased donors have saved so many lives in so many ways.  I've read some truly inspiring stories of people donating kidneys in the hope of saving others that they don't even know in other parts of the world!  What a true example of love and compassion and selflessness.  It truly is inspirational.

I have learned from my mistakes, but also want to make myself available to those who want to avoid those same mistakes.  If I can be helpful to others in the ways that so many of you have been to me, then this will be a blessing, just as my other trials have been.  I watch and I learn.  I am surrounded by loving and caring Fathers, Mothers, neighbors, coworkers, parishioners and more.  I've been blessed with amazing parents and brothers.  I have the most amazing partner in Sarah.  There are no words to explain how amazing she is.  I've married an awesome family along with her. I watch all of you. I learn from watching you.  I see those traits in you that I wish in me.  I've even learned from a few of your mistakes too.  Thank you for being such blessings in my life.  I truly am THE MOST BLESSED MAN.

Summary...So Far....

I don't know where this is going.  A few of the sites I studied encouraged me to share my story and "put it out there".  I don't know if I'll be a candidate for a transplant just yet.  My journey in that regards is just beginning.  I know one thing, I won't stop living and I won't stop being grateful for the life I've had and the time still remaining.  Since taking all of this in, my priorities, perceptions and plans have changed and those too are in constant flux.  I'll keep you informed of where I am in the process and appreciate the love and prayers of anybody willing to offer them.  I feel great and fear that putting this out there will draw a reaction from others that will change how they deal with me or see me.  I hope it doesn't.  I do hope, however, that we all look for opportunities to help others that are in need of help that can't help themselves.  I hope we remember to always consider that others may be going through things that we're not aware of and treat those around us with that thought in mind.  The world now, needs love and compassion more than ever, it seems to me. I can do better.  I will do better.  I am still a work in progress.  

Thank you for listening.