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June 1st, 2015 - 4:24 pm § in Rambling

Roller Coasters are usually fun…

However when your health is on a roller coaster ride, it’s definitely not as thrilling. Don’t be alarmed though, nothing “super bad” here – just a tick back in the wrong direction this time.

I just had my 2 month checkup, and my numbers have dipped back the wrong way again. After a few months of improving, they have slid back down to where they were before.  My nephrologist told me that he’s not totally freaking out over it though.  While my numbers aren’t improving in a consistent manner, my overall situation is pretty much status quo still. Meaning it’s not taking a huge consistent dive to the worse, as happens a lot with kidney patients. It’s entirely possible I’ll improve again over the next few months.

I’m basically on that fringe of needing a transplant. I’m not in full on “must get transplant now” stage – as I feel 100% fine and I’m not showing ANY physical symptoms that a transplant candidate has… it’s just that my blood tests are showing major warning signs.

GFR stands for “Glomelular Filtration Rate”.  A normal person has a GFR of 100 or above. Kidney failure stages are rated based on your GFR.  GFR is calculated with blood tests.  Here is a simple chart:

Most all of you reading this with healthy kidneys aren’t even on this chart. You are probably above “100”.  Myself though – most of my life I have been in that stage 3-4 range.  In the past year I have been jumping from a low 4 to a mid 4, and back and forth.  2 months ago I was sitting at GFR 21 (middle of stage 4)…. Today I’m sitting at 19 (towards bottom of stage 4).    To be a candidate for a transplant, you need to be consistently below 20.  GFR of 15 or below is kidney failure… so as you can see, being at “19” isn’t very comforting.  However, the good news is, it wasn’t a huge dive to get there.

My doctor said I’m nowhere near needing dialysis though – based on my lack of physical symptoms.  That’s great news! Ideally, I’d get a transplant without ever having dialysis.

I’m not extremely tired 24×7, I’m not retaining water and bloating in my ankles, I’m not feeling sick at all, I’m not vomiting or passing out.  In fact I have none of those symptoms.  I feel 100% normal all the time. I do get tired at night and go to bed early, however after 8 hours sleep I’m back and full of energy for the day again, just like anybody else in the world. Anyway this is why I don’t need dialysis.   I’m 100% healthy otherwise – and feel great – no other issues – which helps me a lot.

He is changing my medication dosage up, he said there are several more treatments that are available to me to see if my kidney function can improve or stabilize.  However he is concerned about me, and is keeping a close eye on it.   If my numbers continue to stay where they are without consistent improvement, I’ll definitely be eligible to be put on a transplant list sooner than later.   I’m on the cusp right now but am not quite eligible yet.  But I’m definitely in that realm of getting prepared for it and learning all of my options.

Part of me wishes I were eligible right now so I could get this search and process over with – however most of me is holding out hope my kidneys can improve with treatment.  My doctor says it’s entirely possible –  but we need to start thinking about the options.

Oh – remember the surgury I had on my wrist to re-route my veins for potential dialysis? (see previous blog post).. My AV Fistula has healed up nicely.  This procedure prepared me for dialysis should I ever need it. You can really feel the blood pumping through my arm – it’s quite freaky – but kinda cool. Hopefully I won’t ever need to use it, but my vascular surgeon and nephrologist saw it today, they both told me it was very strong and is usable right now if needed, so I’m glad that is all healed up with no complications.

My next plan of action is to change up my medication dosage a bit, and continue with monthly blood tests to check my progress.   At the end of the day, I’m still optimistic this will have a good ending – I’m just keeping a good attitude with it knowing I’ve got a handle on it.  No surprises here, that’s for sure.

 


April 7th, 2015 - 8:57 pm § in Rambling

Making progress!

   Good news on the kidney front – my numbers have improved two months in a row!  Creatinine is a chemical waste product that kidneys filter out of your body. Creatinine level in blood can show the severity of kidney disease. A year ago my creatinine level was 2.8 (which is bad [...]


April 2nd, 2015 - 1:08 am § in Rambling

Going under the knife tmrw

   In a previous blog post I talked about planning on getting an AV Fistula built into my arm. This is in preparation for dialysis (should I ever need it). I don’t need it right now, this is basically a preparation step “just in case”. This takes several months to heal an[...]


February 24th, 2015 - 7:55 pm § in Rambling

Saw the doc today

I just saw my nephrologist, thought I’d post a quick update. First, I’m almost a month in of very clean renal diet eating (I’ve lost about 10 lbs in the process yay), and haven’t had a drop of alcohol in over 3 weeks, so I have to say I’m feeling pretty darn good right [...]


February 13th, 2015 - 3:13 am § in Rambling

Well the Doc called, decent news I guess.

Kidney biopsy results are in – Good news, bad news, but good news. Good news #1 – It’s confirmed that I have the same kidney disease I was diagnosed with 25 years ago – FSGS (Focal Segmental Glomelurosclerosis). This is scar tissue – it’s not reversible, it’[...]


February 10th, 2015 - 11:07 am § in Rambling

Update

No biopsy results yet, but good news I’m feeling great! I had zero pain after the procedure on Friday, I was just tired and moved slowly for a few days so not to cause any internal bleeding. All seems healed up and I feel back to normal, and even feeling better than before! So now […][...]


February 6th, 2015 - 3:45 am § in Rambling

You gotta be kidn-ing me? nope… here we go!

Most of you probably don’t know this info about me, but I’ve been living with a kidney disease most of my life – chronic glomerulonephritis. I’ve kept good tabs on it the past 27 yrs that I’ve known about it, my numbers have been not so in my favor but thankfully have b[...]