The story of Heart
duh! – of course I’m not normal. And ya know what, I am ok with that!
As a child, I didn’t know I was different until a classmate pointed it out to me.
When I started kindergarten a kid in my class asked asked me “what was wrong with my leg?” I didn’t know.
I asked my Dad, and he told me nothing was wrong, the thing on my leg (my entire leg) was just a birth-mark.
When I was around nine, my birth-mark started to hurt and that pain rapidly got worse. This when the doctor visits started. Starting with my primary care doctor who then referred me to all sorts of different specialists. This went on for years, doctor after doctor test after test.
Finally I met Dr. Ben, Vascular Specialist Super Hero!
His first order of business with me was to stop the pain – this is when compression therapy started. I was around twelve. Compression Stockings STINK, plain and simple. They did help some but the pain kept getting worse.
In my early teen years, it was decided for me to have an experimental surgery that “could help” with pain. It did. Then the pain would gradually worsen and I would have another surgery, then again and again.
In my early twenty’s we tried another approach with different compression therapy along with anti-inflammatory pills in hopes that I wouldn’t have to have surgery every few years.
I was measured and fitted for full (toe to hip) compression garment, I was told to wear as much as possible.
This is when Dr. Ben (almost six years later) started to dig deeper, we gathered every single medical record that we could find on me starting with the day I was born.
I have these records and man let me tell you – the way records are kept now-a-days….. so much better! My records were all predominantly hand-written and some almost illegible.
After lots of research I was finally given a name for my “condition”
Venous Disease, and my specific condition was referred to as a “Vascular Anomaly”
After given this diagnosis, there still were so many unanswered questions. It was clear to me that, whatever I had was not just venous disease. There was something obviously wrong with my veins, I mean I was born with spider veins for Pete’s sake. But there was also so so much more that was unanswered.
At the age of twenty six I was scheduled for my first “major” surgery, again this was experimentation we didn’t know if it would help. It did for a few years and then surgery was performed again at twenty eight.
This is when FINALLY an accurate diagnosis was made that made some sense!
I have a rare progressive disease called Klipple-Treananauy Syndrome or KTS for short.
KTS is a complex syndrome, the only affects one quadrant of your body. Mine specifically is my lower left. The biggest thing that I have learned about KTS since I was diagnosed is that no one single treatment is applicable for everyone. Treatment is decided on a case-by-case basis. Most treatments are experimental.
After my diagnosis I had another “major” surgery and more compression treatment.
A few years went by and the pain level increased, which now that I have been diagnosed with KTS I know is something that can be expected to continue to happen.
It was agian time for my annual visit with my Vascular Surgeon to discuss pain management options. This time things would be different however, as I had just gotten married.
Since I was now married the discussion of pregnancy came up. My doctor flat out said – it wasn’t a good idea – the pain would be bad and there would be a high risk of miscarriage.
He then said in all seriousness it was a possibility, if I became pregnant I would need to be monitored closely and that if it was something my Husband and I wanted to consider for our future, the time was NOW!
Three months later I was pregnant!
Pregnancy and KTS….. not a good mix.
Pregnancy was pretty scary for me, as I knew that pain was going to in crease, surgery wasn’t an option and I could no depend on anti-inflammatory for temporary relief.
I was on blood thinner injects through-out my pregnancy. I did have horrific pain, and became severely anemic. I just recently learned that Anemia is a common symptom among KT patients by the way. Still learning new stuff everyday.
Now here I am today – post baby and pre-surgery. Yet again.