But you look fine

It’s such an odd condition.  I’ve been dealing with this disease all my life, but until recently it hasn’t really impacted me.  They tell me it has been such a slow progression that I mostly won’t notice it until the end.  Well, thanks to my nephrologist, Dr Jame Sutton, my progress has been well tracked and monitored.  2 years ago when my level dropped low enough to be placed on the transplant list, I felt completely healthy.  I just took his advice and followed the guidelines given to me by Indiana University.

I’ve read in transplant forums, kidney disease is the easiest way to pass away, you just keep getting more tired, until you don’t wake up.  It doesn’t make your hair fall out, your weight doesn’t change, your speech doesn’t change… but internally you are dying.  You can’t filter the toxins.

Earlier this year, my level dropped significantly and that was the first time I really noticed the impact it was having on me.  I was a few weeks away from my quarterly appointment with Dr Sutton.  I had this draining week feeling that wouldn’t pass.  I decided to get my labs done early to see if that would explain anything and sure enough, my kidney level had dropped from 21% to 14%.

So, it was in June this year that I came to the realization that getting a  transplant was in my near future or I would be looking at dialysis.  Up to this point I had let my family know that my opinion was to just keep on trucking and watch the numbers.  NO big deal, I’m fine.  But now, I was feeling the impact and the test were confirming it.   My brother stepped up big and got his testing completed by June and by July we were looking at surgery dates.

In just 2 months, things have moved so quickly.  I am thankful they have though.  At first, we discussed options of transplanting at the end of the summer or putting it off until next spring.  I’m glad now that we managed to get it arranged for sooner rather than later.  This overall feeling of exhaustion just hangs.  There is never enough sleep.  I don’t feel ill, I haven’t completely lost my appetite, I don’t have a fever… but I have a constant overall feeling of ‘I am just not right’.  Anymore, it doesn’t pass, it just lingers.  Almost like a terrible hangover without the sick stomach or headache.

I see Dr Sutton again on the 24th and will have labs done the week prior.  I have no doubt my numbers are worse than ever.  Without this transplant, I believe I would be starting dialysis soon.  If I didn’t have my brother making this donation, I imagine Dr Sutton would have started me on that path in June.

I am so fortunate to have my brother give me this gift.  I’m told I will feel better than I can recall.  I am sure looking forward to that.