Introduction from NE Ohio

[Matt58044]

Hello everyone,

My name is Matt, and I am a 26 year old soon to be hemo-dialysis patient from Poland, OH, a town about an hour southeast of Cleveland. 

Like many, I have been agonizing over the decision to start dialysis- dealing with the typical worries like the needles, diet, etc.  I will see my nephrologist in a few weeks and start then, unless something drastic happens before that.  I have a fistula installed, and it has been in for almost 5 months.  It should be ready.

Now for my background: I was diagnosed with oxylosis as a toddler, a disease where the kidneys stop cleaning out calcium crystals.  At the time, there were less than 100 prescribed cases of oxalosis in the world, so it is normal to be unfamiliar.  At the age of 7, I got sick and had to begin dialysis.  Unfortunately, since the buildup of calcium crystals also harmed my liver, I had to be placed on a list for both a kidney and a liver. 

After just a few months on dialysis at Akron Children's Hospital, I got BOTH a liver and kidney on 7/17/1992 at the University of Minnesota.  With few complications, both organs worked perfectly for a long time.  I was what miracles were made of.

At the age of 13, my brother (then 16) passed away in the operation room when he was getting his transplant - also from oxalosis.  We had been diagnosed at the same time some 10 years ago, but he didn't get sick until his teens.

My organs both worked for 15+ years perfectly.  In about the summer of 2007, my numbers started to slip.  Creatinine started rising above 3, above 4, to the point that it is now around 10.  My transplanted kidney was simply scarring from the wear and tear of 15 years of anti-rejection drugs, and so on.  I am now dealing with the ordinary range of symptoms; exhaustion, occasional sickness, edema, itching, etc.  I have been on Aranesp for anemia for a while now.

My liver is still functioning like a dream, and having managed the progression of kidney failure as long as I could, I got on the kidney transplant list at the Cleveland Clinic just a few weeks ago.

I have a few donors being tested, but if they don't work out I'll be on dialysis for the long-haul like many of you.  I have battled many emotions over the past few years; fear, worry, depression, anger, sadness, etc.  I found that most of this comes from uncertainty of my future, and getting information here has helped with that. 

I beleive that the experience I had as a child is a double edge sword in terms of helping me cope this time.  On one hand, sure it reduces some uncertainty.  On the other, I have been scared my whole life of going through it again.  Now I must face those fears.  I really don't remember much from the first time except being scared and crying a lot.

I plan on asking some questions in the starting dialysis thread once I get my feet wet here.

As for about me, I'm a typical guy who recently graduated from Youngstown State University in accounting.  Working toward my CPA, I like sports intensely and am die-hard for the Cleveland Browns, Cleveland Cavaliers, OSU Buckeyes, and (randomly enough) Atlanta Braves.  I have lived most of my life without limits other than taking medicine each morning and night.

Thank you for reading; I'm so glad I signed up.

Matt

[monrein]

  Matt and thanks for such an in depth introduction.  I find your story to be inspirational and I very much admire your determination to live your life in such a full way, in spite of this illness that is an extra challenge for us.  I'm on my second transplant now and can relate to your feelings of dread, knowing that this battle would begin again some day.  I'm also extremely sorry to hear about your brother, a part of your story that only complicates things more.
I'm glad you joined us here too and look forward to getting to know you better.

[Dianejt]

Hi Matt,   welcome aboard. My hubby & I lived out in Cleveland back in 1977. Our oldest son was born there. I hope you find this site helpful. Good luck.

[peleroja]

Welcome to the group, Matt.  Tons of information and lots of good friends here.  Glad you joined.

[sullidog]

Welcome!
I've been on hd for a year now. I'm in columbus Ohio and currently on the list at OSU hosppital, I hear the cleveland clinic is very good.
Troy

[Bajanne]

Welcome to our community, Matt!  Thanks for sharing such a great intro.  That was the kind that Epoman really liked.  Wow, you have certainly been handed some tremendous challenges.  But I continue to be amazed at the strength of the human spirit, flourishing even in the midst of such challenges.   I am so glad that you found us at this time.  There is much information and support here - really, this is more than a website - it is a genuine family      Please keep reading and keep posting.  Let us know how it is going with you (in another section, of course).





Bajanne, Moderator

[Matt58044]

Thank you for such welcoming comments everyone. 

I certainly have been handed quite a few challenges.  Like many others, I suspect, I had other medical conditions over the years that required medical care; some of which resulted from the medications. 

I had to have skin cancer removed from my bottom lip and chin when I was about 12 (presumably from the prednisone, anti-rejection drugs, etc.)  I had to have gum reduction surgery at about 14 (again from anti-rejection drugs.)  I've had about 5 moles removed as precaution; skin is always a worry. And as many of you can probably attest, these medications can reek havoc on your appearance, especially if you are taking them over a long period of time.

My mother took her life when I was 20.  She had had 3 unsuccessful pregnancies, a toddler boy who died of heart failure in the early '80s, another son who died at 16 that I mentioned earlier, and a kid sister that she mostly raised that died tragically in a tornado in 1985.  She spent most of her life bouncing from crap job to crap job; whatever she had to do to take care of her sick children.  I can't say I blame her for what she did, she had a tough life.

But like I said, I've always lived as a normal guy.  Played sports, etc. It has been easy to forget for most of my life just exactly what I went through as a child.  Lucky in that regard, I guess.  I can honestly say that on a day to day basis, the only thing that messed with me mentally was my appearance.

And I'm sure most of you have just as many struggles as me.

But I'll leave more details for another time and place, for this is just the intro section.

[cariad]

Oh, Matt, 

So glad you're here. I am a former dialysis child like you, although I had a much easier time of it. So sorry to hear about your mother and siblings. You have overcome much more than anyone should face in your young life. I understand the self-consciousness about appearance as my family really did not make any secret of how unappealing they found my prednisone weight gain. I'll bet you look great, and that your fighting spirit comes through in your appearance. We are always our own worst critics. I am quite a bit older than you, but can tell you that I no longer just see flaws when I look in the mirror. Age can bring wonderful perspective and peace.

All luck to you. I look forward to getting to know you better.

[Jean]

Welcome and we are glad you found us too. Sometimes I get a little whiney in my head, thinking of what I will be going thru soon, as I am not on D yet. Then I hear a story like yours, and I think, wow, I have no complaints at all compared to him. Come back and post often.

[Matt58044]

Thanks again, guys.

I'm headed over to the starting dialysis thread to put some questions I have; feel free to give me your input! 

[Rerun]

Matt, I'm so glad you found us and joined.  I was on dialysis at age 24 and got a transplant fairly early (only waited 9 months) It lasted 17 years, but when it was failing I was having anxiety, not fear of the unknown, but fear of the "known"..... I knew what dialysis was like and I hated it back then.....  Trust me it has changed a lot in 20 years. 

Best of luck and enjoy the site.

Rerun, Moderator               

[haemogoblin]

Welcome!  I am new (although I did post 2 years ago on one occasion).

About that fistula- I would say it's ready... I had mine 6 weeks before i started needling it.   

I hope all goes smoothly!
Haemogoblin



Edited: Fixed smiley error - okarol/admin

[cloud393]

Welcome to the site.  What an introduction.  You have been thru so much already.  But it sounds like you've kept yourself pulled together.  Congrats on that.  I am from the Toledo area and am also a big Browns and OSU fan.  Look forward to reading more of your posts.

[MooseMom]

oh man oh man oh man...you have a lot to teach me about resiliency and plain and simple courage.  Thank you so much for posting and for reminding me that everyone has their own burdens to bear.  I can assure you that you will be very well looked after here.

I do have one question.  You've said that you have several donors being tested, but if they do not work out, then you will be on dialysis "for the long haul".  Are you just referring to the waiting time on the list, or is there something about your condition that makes a cadaveric donor unsuitable for you?

Another question...where's LeBron gonna be next season?

[Matt58044]

Moosemom,

I just meant that I'd have the normal waiting period if my living donors don't work out.

LeBron? I thought all along that he'd come back... and that he just liked the attention but wasn't seriously considering leaving CLE. Now Ferry and Brown are gone, so I have no clue.  My personal odds are something like this...

Cleveland - 35%
Chicago - 20%
New York - 15%
New Jersey - 15%
Miami - 10%
Rest of NBA - 5%