I have been slowly recovering from the angiogram, but I am scheduled for my routine procedure today. Sigh... the pain in my leg is getting worse each day and I know that the procedure will help to relieve some of the pain after the procedure. I will be off soon, but in the meanwhile, I decided to write the "Untold (partial) story of my medical history" while I am recovering and stuck in bed.
I know I have never shared with you exactly what it is that I have, so I have decided that I will tell you about a small part of my medical history. The part that I got extremely sick after being married for few years, to finding the special treatment to improve my quality of life tremendously... let me give you little bit of history, just in case you are here for the first time on my blog.
The medical condition I have is called "venous Malformation" and it is pretty much all throughout my right leg. My leg below the knee was so bad that the doctors told my parents that if I don't have an amputation I will die soon. My parents went to see many different doctors but they all said the same thing. They waited until I was two, and there goes my right leg (below the knee). I still had venous malformations in my thigh but it was not as bad as below the knee, also, if I lost my whole leg, it would have been much harder for me to learn how to walk. So they decided to keep it.
Basically what it is, is that the veins in my leg are very wide, tangled, and have offshoots that I am not supposed to have. When the symptoms act up, my whole leg gets very hard, and I have tremendous pain. It is the kind of pain that I have hard time explaining, because it is not something you will experience from bruises, cuts, burns etc. The best way I can describe it is that it can be a very sharp pain, or dull pain. Also, sometimes I feel like someone is putting their hands around and squeezing everything inside.
It is the kind of the pain where I will be bed ridden, cannot even crawl to the bathroom without crying. Even rolling over cause’s crazy pain so usually I will just stay in one position and pretend that I am dead so I don't feel the pain. I have high pain tolerance, but even then, I can't help the tears flowing down.
Also, for some reasons, I will get extremely anemic to the point that I will need blood transfusions if it's untreated. The pain and the anemia go hand in hand without fail. Even the doctors don't know why they are related.
Growing up there were no treatments, so all we (I mean including the doctors) could do was to wait for that to pass. That is why I was always in and out the hospital, anemic most of the times.
After 3 years of being married and living in America, I became ill. There is a whole lot to this story but I am not going to write it here. Seriously I could write a novel if I go into details! Usually, in two to three weeks I get better, but this time it didn't. We waited, and waited... after three month later it was evident that I was not getting any better. In fact it was getting worse. My hematocrit dropped to the point where I had a hard time breathing on my own. I was hospitalized in a local hospital (not U of U).
There they gave me blood, but my body kept rejecting it. They didn't know why... then, a doctor came in to my room in the morning. Let's call him Doctor D. He was flipping through my chart as he came in to my room. He introduced himself and asked me few questions than said:
"hmm... you are losing blood because you are pregnant."
What?! I was stunned! Mr. TRH and I were trying to start our family and a few month previous to that I stopped taking the blood thinner (Japanese doctor put me on to control my VM somewhat) and switch to daily shots. So it will not affect the baby.
So in an instant I had mixed feeling of joy and doubt. I was thinking "What? Am I really pregnant? But how does he know? They haven't done any tests." I still remember my feeling then, though, I was happy if I was pregnant, but I also desperately wanted to get better to protect the baby.
As I was thinking all these things, I said,
"Am I really pregnant?
Then you know what he said?
"Oh, you are not?"
Then he started flipping through the chart again.
I have been sick for three month. Living in the U.S for about three years, I understand most of what people were saying but still had difficulty speaking and describing exactly what I wanted to say back then. Also I was away from my family in Japan. My stress level just reached the limit when he said "Oh, you are not?" I wanted say to him "What do you mean; oh you are not? I am not pregnant? What are you saying?!"
Instead I just started to cry. The feeling of worry, scariness, sadness, tiredness, frustration and everything... I just couldn't take it anymore.
Dr. D was looking down at me with the chart in his hand and asked me,
"Why are you crying?", in a very strange and cold voice.
I couldn't say anything because of the crying... I didn't even know what to say.
Then, he just grabbed the Kleenex tissue box and threw it on my chest, huffed and stormed out the room...
To be continued....