About me

[SteveM]

Hi!  I'm SteveM.  I'm a married (15 years now!), 43 year old, father of one (he'll be 5 in April), in the metro Denver (Colorado) area.  I'm new to dialysis (going on 3 months now). 

Here's my story so far:

I never had kidney problems, or even cardio problems--with the exception of some minor pulmonary pre-hypertension due to years of undiagnosed sleep apnea.  However, in mid-Nov of last year (2007), I had a sharp stabbing pain in my lower back.  I thought it was a spasm, but it passed quickly, so I felt lucky for a bit... until I began feeling nauseated.  After about an hour of nausea, I drove myself to urgent care (it was evening and my wife was putting our 4 year old to bed already).  At urgent care, they thought I might be passing a kidney stone.  They wanted to confirm with a CT scan, but their imaging system was down for semi-annual maintenance.  So they sent me to another hospital about a mile or so away.  Again, I drove myself.  When I arrived, they admitted me to the ER and ran some tests.  At one point they asked for a urine sample, and I was unable to provide it.  Odd for me, because I can ususally produce something.  They had me drink some more water and rest.  The last thing I remember from that Sunday night was when my wife arrived just before midnight after having a friend come over to watch our son. 

The next thing I remember is waking from anesthesia while nurses were removing breathing tubes from my throat.  I guess I was a little freaked out and just a tad violent.  Sue me... I thought it was all a night mare.

So how did I go from a stone to post-op recovery?  First of all, it wasn't a stone, it was an ascending aortic dissection.  Most people die from it... and usually rather quickly.  Remember when I said I lost track of everything late Sunday night?  Well... apparently I was lucid all the way through Wednesday afternoon.  That's how long it took my new nephrologist to stop "waiting for his kidneys to start working again".  Apparently a cardiologist on rounds was unsatisfied with the wait-and-see "plan" and ordered a CT scan with dye contrast. 

"Holy crap!  He's had an aortic dissection.... we need to get him into surgery asap!"

Believe or not (I certainly don't remember it myself), I called my wife from the surgeon's consult room to tell her the news before I went under. 

The surgery went well.  The doctors think that the dissection occurred due to a pre-existing weakness at a natural seam in the aortic lining.  Thank God my heart and BP were pretty healthy prior to the event, or I'd probably have died.  At the end of the surgery, though, my pupils were unevenly dilated, and the surgery team thought something had gone wrong... perhaps I'd even had a stroke!  They did another CT scan w/ dye contrast and everything seemed okay.  I came out of anesthesia well--with the notable exception of the breathing tube fiasco--and had no freakin' idea what was up.

Over the next couple days, I got the story from my wife. 

Now my heart is fine again, but kidneys don't work.  The theory (and it's barely a theory at this point) is that the dissection caused the aortic lining to break free, partially blocking blood returning to my heart.  This supposedly reduced blood flow everywhere, and my body cut blood flow to my renal system to keep core functions working.  Since the dissection went undiagnosed for three days, my kidneys had significantly reduced blood flow for the entire time.  Add to that the fact that they were pumping full of fluids via IV.  Add also the two CT scans with dye contrast, and I'm now the proud owner of two barely functioning kidneys... and about to go from acute to chronic status.

I've been doing hemodialysis 3 times a week, in-center, in a Boulder, CO, clinic.  I've been adhering strictly to their recommended diet and fluid restrictions, and I'm still trying to get down to my real dry weight. 

The instant lifestyle change has been overwhelming at times.  If not for the amazing support of friends, family and even strangers from our church, I don't think we'd have made it.  I still have moments of denial; I'm not nearly as "together" as this introductory post might make it seem. 

I've been frustrated by the lack of communication from my neph; I feel like every meeting is initiated and pushed along by me.  I'm tired--mentally and physically--from the stress and the meds.  Luckily, I work for a fantastic company and have just returned to work after nearly two months on short term disability.  But I'm tired all the time at work, and worry that eventually they'll become discouraged with my frequent time away for med appointments, or my early days for dialysis.

I'm interested in home-hemo, if it becomes necessary, but have a ways to go before that can happen (I'm still on a palindrome catheter in my chest, and I'm still acute).  I'm also trying to get on transplant lists asap, but am concerned that my newly acquired high BP (averaging about 147/70) will prevent me from being approved.

I've read many posts from existing members here, and I have so much to learn.  I'm eager to get to know some of you, and I'm open to any and all recommendations, etc.

Thanks!.

-Steve

[MyssAnne]

Welcome, Steve!!! 

What a dramatic way to gain a new life. Sucks, doesn't it?  I'm glad you've had so much support from your family and friends. That is so
very important to us.   

You're going to fit in just fine here, have fun posting, and reading! 

[oswald]

 

[okarol]

  Welcome Steve,
So glad you found IHD. There's lots of good info here and some wonderful folks who will give you support.
The higher blood pressure may be due to the kidney failure. The docs will no doubt get you on some meds to lower it.
I hope you can get listed soon. Do you have any family members or friends who can donate? I don't know how long the wait list is for a non-living kidney donor in Colorado. What is your blood type?
It's a tough adjustment - you've been through a lot in a short time. I wish you the very best!


okarol/moderator

[SteveM]

Thanks for the nice (and quick!) welcome so far. 

okarol asked:  "Do you have any family members or friends who can donate? I don't know how long the wait list is for a non-living kidney donor in Colorado. What is your blood type?"

We're going through friends and family now.  Lots of offers--some even serious--but no match testing yet.  I don't know how long the wait is for a cadaverous kidney here in Colorado, myself, but I'm sure I'll find out soon enough!  My blood type is B+.

[Joe Paul]

Welcome Steve, good to have you aboard.

[Romona]

Hi Steve! Don't worry about the BP. Your BP isn't really too bad.  High blood pressure is part of the whole kidney thing it will not prevent you from being transplanted. If you don't get good results from your nephrologist and are able to change, do so. A good nephrologist can push for you during the transplant evals.  Good Luck to you as you adjust. 

[Katonsdad]

Welcome to the group .
When I first started Dialysis my Neph. started me early as he put it so you dont feel sick .
Many patients I knew kept being told to wait , its not time yet , but they feel sicker and sicker.
You got it all over and done with quicker.
This group will help you deal with everything you have been through and everything you will
be facing . Ask questions .
I was on dialysis for 3.5 years and am now transplanted . Many here can help with those questions also

Katonsdad

[Ang]

   aboard

[kellyt]

  SteveM and Welcome.  I'm pre-dialysis and hoping to transplant in March.  My brother is going through his testing now.  So far he's a blood match and a 3 of 6 antigen match.  He'll be admitted for the remainder of his testing in the next few weeks.

I was diagnosed in the early 90's so I've had time to "adjust" - even though in the end it really did sneak up on me.  I can't imagine going through what you went through.  And how terrifying for your wife!  Glad your doing better now.  You've come to the right place.  This place has literally saved my life and sanity.  Up until Oct. I knew NO ONE with kidney disease or who had even been on dialysis.  No one in my family suffers from ESRD, either.  You will find lifelong friends (family) here.  I can't wait to meet these people!  Hopefully at the next scheduled meet and greet!

Talk to you later!

[Sluff]

Well, helloooo SteveM,  Welcome to ihatedialysis.com.  So happy you have found us.   
We have an awesome group of people.  If there is something in particular you are looking for and just cant find, Please do not hesitate to ask, any one of us will be more than happy to help you out any way we can.  Looking forward to hearing more from you.... 


Sluff/ Admin

[CW]

Hey Steve,

Your story was very interesting I am glad you made it and I am glad you made it here!

IHD is a great place to be , enjoy!

[Laurie]

  Steve.
My kidney failure is due to a bleeding disorder after a C-section. I was on dialysis for 9 months before my kidneys regained some function and I was able to stop dialysis for about 5 years. So, don't give up, it is possible that your kidneys could regain function. 

[kidney4traci]

Welcome to the board!  Sounds like a roller coaster.  I know you may not feel like getting on dialysis yet, but as mentioned previously, it should help you feel better as it will clear out some toxins that are just recirculating now.  Peace and love, keep us updated...

[Sunny]

Welcome. What a way to have your kidneys fail. It sound like you have been through a lot and I'm glad to know things have stabalized for you. Hang in there and you have found a good forum here.

[lola]

 

[Joanniebop]

Welcome Steve and good luck with your heath and know, when the time comes, that there are a few different choices when it comes to dealing with Kidney disease including PD which is done at home at night time while you sleep.

[kitkatz]

Welcome to the board.  Wow! What a way to begin life on dialysis!





kitkatz,moderator

[rookiegirl]

  SteveM

[devon]

for what it's worth...
you said... " But I'm tired all the time at work, and worry that eventually they'll become discouraged with my frequent time away for med appointments, or my early days for dialysis."

Please keep in mind that you are protected by Americans with Disabilities Act (ADA). Make sure you document that you are going for medical treatment. If they fire you, you have rights under the ADA that can be very helpful. The EEOC handles these complaints.

Good luck to you!

[donnia]

 

[kellyt]

Highjacking thread temporarily...

Donnia - how is your donor testing going?

[keefer51]