MEDULLARY SPONGE KIDNEY: What Condition My Condition is In...
MEDULLARY SPONGE KIDNEY (MSK) aka CACCHI-RICCI DISEASE
The ONLY Symptom...
A couple long months ago, whilst answering the call of Mother Nature - I stood up to, ya know - FLUSH - when an ocean of, ya know - BLOOD - in the toilet caught my undivided attention.
DEEP, DARK, RED BLOOD!
Now, having had a lifetime of misadventure with regard to the URINARY TRACT (kidney stones, infections...) I didn't need to be told that, ya know - BLOOD IN THE PEE PEE (HEMATURIA) - when NOT accompanied by pain - is NOT a good thing.
I should add that this was the THIRD time in a FOUR month period that this blood... had mysteriously appeared in my toilet! I could no longer afford to be - or allow my DOCTOR to be, ya know - LACKADAISICAL - about it...
In my defense - on both of the previous occasions - the blood SEEMED to coincided with a URINARY TRACT INFECTION (UTI) and SEEMED to clear up with a dose of ANTI-BIOTIC.
Key word: 'SEEMED'...
This time - after TWO rounds of anti-biotic with NO change - other than getting, ya know - DARKER - it was time to have a few MEDICAL TESTS done!
SO NOW, in the midst of the THIRD (and ongoing) episode - and having completed - and 'passed' - the initial requisite tests, ya know - SPECIMENS, CULTURES, COLLECTIONS, BLOOD - I was finally sent to a specialist for a SCOPE OF THE BLADDER - the 'definitive' test for detecting abnormalities and, ya know - THE BIG 'C'!
After waiting almost a month for the test - it too came back 'NEGATIVE'.
Both the GP and the Urologist were mystified.
Mystified, I tell you.
It wa decided that I would now be sent for a RENAL IVP MRI - the 'definitive' test for detecting abnormalities and, ya know - THE BIG 'C'!
But, 'NOW' doesn't mean, ya know - NOW - in the world of medicine!
THIS test was scheduled for yet another SIX WEEKS down the meandering pathway of an indifferent medical system.
Everyday I was getting dizzier and dizzier - flushing more and more blood down the toilet!
While I did my best to remain calm - the thought did occur to me that I could be, ya know - DEAD - in SIX WEEKS!
When I called the Doctor's Office to see if anything could be done, I was told that the Urologist was, ya know - ON VACATION - and if I became, ya know - CONCERNED - I should consider presenting myself to any EMERGENCY ROOM.
Have a, ya know - NICE DAY!
Three weeks later - that's exactly what I did.
Medullary Sponge Kidney aka Cacchi-Ricci Disease
- Medullary sponge kidney - Wikipedia, the free encyclopedia
Medullary Sponge Kidney aka Cacchi-Ricci Disease
- Intravenous Pyelogram | Johns Hopkins Medicine Health Library
An intravenous pyelogram is a procedure that uses a combination of contrast dyes and X-rays to look for obstructions in the blood flow of the kidneys or poor kidney function.
- Dr. Thomas Bowman, Family Doctor, Winnipeg MB, Family Doctor
Find Family Doctor VIDEOS and CONTACT info for Dr. Thomas Bowman, Family Doctor, at 300 Booth Drive in Winnipeg MB, R3J 3M7
And, THAT'S where an almost two month roller coaster ride of waiting, wondering - and blase doctors - came to a sudden and unexpected HALT!
That's where Dr.Tom Bowman - an INCREDIBLY BRILLIANT and harried Emergency Room Doctor - made the bold (and unnecessary) decision to hit the, ya know - BOOKS - in order to find out what the heck it was that he was looking at!
Dr. Tom Bowman could have simply sent the mysterious CT SCAN results to the requisite doctors - and carried on to the next impatient patient, BUT, instead - Dr. Tom Bowman went the extra mile!
And, in so doing - allowed my mind to stop meandering off to the, ya know - 'WHAT IF' SECTION OF MY CEREBELLUM - for the first time in months!
Thank you, Doctor Tom Bowman!
I chose to share this journey for one reason: This condition was IMPOSSIBLE to find on GOOGLE - or ANY other search engine - UNTIL I had it's actual name!
Wikipedia lists TWELVE 'RARE' CAUSES for Hematuria (blood in urine) - NONE of which describes, ya know - THIS DISEASE!
Now...what good is THAT??
Medullary Sponge Kidney is a fairly rare disorder - 1 in approx. 5,000-20,000 persons.
It is benign (thankfully), congenital (it doesn't go away), unilateral (affects both kidneys) - and, while not hereditary - it is thought to be a birth defect that isn't discovered for decades - if ever..
There is a test to detect it.
There is no treatment, per se - only 'management' of symptoms which could include pain, infection, blood and stones - and a few other little goodies..
It may - or may not - get progressively worse...
It could shorten life, but, ya know - LIFE - shortens life..(just sayin'..)
It's not a 'moneymaker' for the medical field OR the drug companies...
The two most 'common' diagnoses associated with this symptom are, ya know - BLADDER and KIDNEY CANCER!
And NOW - We ALL know...
This would have been a MUCH more difficult journey if not for the prayers, support - and sanity - of my friends and family!
TIGHT HUGS going out to: Deb, Dennis, Dana, Henda, Shauna, Marlene, Esther, Nellieanna, Wayne, Rolly, Vincent, Eddy, Rose, Vicky, Missy P - and oodles more who probably won't read this..
Ruby Fuller was an incredible help and inspiration - and ultimately - got me off my butt and into the hospital - THANK YOU dear!
I found patience and grace whenever I thought of my cousin Maureen..
And last but not least - I don't know what I'd have done if it weren't for my FyrFytr - Bob! He was with me EVERY step of the way, and I am deeply grateful for his broad shoulders!
In closing - I'M, ya know - BAAAAAACK!
Ya can't get rid of me that easily!