Wednesday, October 19, 2011

Untold Story of My Medical history / Part 1


I will be back, wish me luck! :)


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....

50 comments:

pili said...

GOOD AFTERNOON.I WISH YOU THE BEST LUCK. MY ENGLISH ARE NOT SO GOOD.

Jen said...

Heartbreaking to hear about your medical issues. And now I'm on the edge of my seat waiting for the rest of the story. My thoughts and prayers are with you :)

Little Treasures said...

I can only imagine the courage you have to gather to share this story with us! I am sorry to hear that you are (were) in such great pain and I wish for your procedure to run smoothly!

Lori @ Katies Rose Cottage Designs said...

I am so sorry that you have to go through this pain ~
Thank you for giving us a glimpse of your medical history ~
I really want to hear if you had the baby :)
lots of hugs,
Lori

Sarah {The Student Knitter} said...

That's so incredibly horrible!! I'll be checking back often to hear the rest of the story for sure

Craft Couture by T.C. said...

What I would like to say after reading your post is you are a very strong woman and a very good example to many out there to not let anything stop you from doing what you want. You are truly a great inspiration.
Thank you very much for sharing this story with us. I am new to your blog (actually I am quite new to a blog world).
I hope the procedure goes well and you have a quick recovery. I will keep you in my prayers.
Take care :)

P.S. the doctor should be more considerate and did not treat you like that..I am upset just reading it..I can't imagine how you felt in that situation.

MrsHwang said...

Love reading your blog, but sorry to hear about your pains, especially about Dr. D! Nothing get me more upset than rude people. Hope you are feeling good today.

Artsy VaVa said...

I am so sorry for all you have been through! Thanks for sharing your story. I will pray for healing and comfort for you.

I hope you got a new doctor!!!

CREATIVE MIND said...

All the best sweety hearty Sachiko!!
take good care of yourself!
well wishes from Pakistan :)

Elise Engh said...

oh my goodness! You have been through a lot. I suffer with back pain and migraines and I know how hard it is to have a family while dealing with serious medical problems. I hope you will be able to find a good solution for your pain. Thanks for sharing your story. By the way, you look great!

BigBearswife said...

Thinking of you today

Mikaela said...

What a doctor! Some bedside manner.

I can't help but hope that through you sharing your story, you might help others who have been diagnosed with your condition, or who are seeking a diagnosis. This sounds like an uncommon and very difficult condition, but your brave attitude is an inspiration to all of us.

Annie said...

I am getting tearful reading your post. So sorry to hear about your pain and what you have been through.
You are very courageous to share your story. I am wishing for your speedy recovery!

Kim said...

I am soooo sorry that you had to experience a doctor that had no compassion!! You are an inspiration!

Sommer said...

You poor thing! I am so sorry you have to deal with this. I can understand a little what you are going through. I was 7 when I had leukemia and I got a blood infection. My right leg had something happen to it (can't recall what it was, a result of the blood infection) where it felt like it was in a blood pressure cuff being squeezed to death. I was in ICU and couldn't get to my bathroom on my own. One day my mom was showering in the nurse station when I had to go and tried getting there on my own. I fell out of bed and knocked down the IV unit and everything came crashing down. It was horrible. I pray you are able to find some relief soon. xoxo

Cathie Carroll said...

You are very strong and very brave and this latest procedure will go beautifully for you!

Warmest regards, and best wishes for a very speedy recovery,

Cathie

Nicole @ Sew Much Sunshine said...

GOOD LUCK! I'll be praying for you. "be strong and brave & wait for the Lord's help"

Emily said...

I can't believe he said that! :( Hope your procedure helps. Hugs.

Juf said...

Well, you certainly grabbed my attention with this story! Hope your doctors now are better than "Doctor D"! God Bless!

folkhaven said...

Oh my! I so don't understand why a person who is so cold would choose a profession where they are dealing with people when they need compassion the most! I am so sorry you have had to be dealing so long with your condition. I am sorry you were treated this way when you were so ill. I am thinking and praying for you and your procedure today, and anxiously awaiting the continuation of your story.

Danny said...

Thank you SO much for sharing! You are a very strong woman.

dannyscotland said...

Unfortunately, some doctors, just like some people, are callous and insensitive jerks. I'm so sorry you had to deal with one in the middle of such a health situation. I will be waiting to hear the rest of your story, and hope that you were able to deal more with much, much, much better doctors. Such a shame a doctor like that gives them all a bad reputation.

West Michigan Quilter said...

I'm so sorry for your bad experience with such a cold doctor. Maybe he/she felt helpless and didn't know what to do or say and that must have bothered because doctors sometimes think they are God and can do anything. My thoughts and prayers are with you.

*Cheriece* said...

I think we are all thinking the same thing while reading this....Dr D had NO bedside manners! How heart-wrenching!

Rosi said...

Good luck for you!Best wishes from Brazil!

Patty said...

I have just recently started following your blog because of your terrific content. I'm so sorry to hear of the medical issues you are having to deal with, but I have to say that one would never be able to tell from the pictures you post! You have a happiness that comes through on the pictures and belies any pain that you may be going through. I wish you all the best in finding the best treatment.

Pam said...

Heartbreaking to hear of all that you have endured. I pray that your doctors are able to help you. Stay strong and God Bless you.

Maddie Kertay- The Domestic Anarchist said...

SO hard to put words down that seem suitable.. just know that my thoughts are with you, white light and speedy healing.

Maddie

Creative Busy Bee said...

Hi! I am your blog follower for sometimes, althought I view photos more than read your 'text' ...wish you get well and recover soon.

gustosa giveaways said...

I'm so sorry you are in deep pain right now, I only wish that feel better soon.
幸運 薬 祈り続ける 世話をする

Swedie said...

I'm so sorry for all you've had to go through. I hope this time they can help you so you can recover and feel good.

Staci J said...

Oh Sachiko, My heart is breaking for you right now. Thanks for sharing your story with us, I hope you get all the rest and support you need and deserve. My prayers are with you and your family.

Melissa said...

Oh my heart is aching for you. And I am also so proud of you to share your story. Its a very difficult thing to do. It is just such a private personal thing. I am sending prayers your way...

Sewing Princess said...

I keep my fingers crossed and pray for you to get better soon. I hope the pain will disappear soon.

by night said...

Tanks you for sharing your story and pain with us! My thoughts are with you!

FlyAwayHome said...

Sachiko, My heart goes out to you. You are so brave to share your story. You are such an inspiration. Please rest and get better so you can continue to inspire others through everything you do.

acole designs said...

I cannot wait to read the next part of your story!! There is so much that is unknown about VM!!
My 5 yr old daughter has a Venous Malformation, in her left arm, and I have noticed some questionable areas on her face. I am so excited to read more!!
Good luck with your journey!

Pattygloria said...

Sachiko, You're a brave woman and a great human being. I'm wishing you a fast recovery. You should write some more about your journey.
Cuidate mucho,
Gloria

Heather Spurlock said...

I came across your blog today and was amazed to see this post! I too have a venous malformation. It is in my wrist so the only part of my body that typically bothers me is from the elbow down. Mine is not as serious as yours sounds but I have been looking into treatments. The problem I have encountered is not many doctors even know what it is or they call it a cosmetic defect which is simply not true. You should look into John Hopkins Medicine for better treatment they appear to be experts at this rare condition. http://www.hopkinsmedicine.org/vascular/conditions/malformations/
I look forward to hearing how your story progresses and that you recover quickly! :)

B-Hams said...

I am so sorry you are going through this scary time. i too had similar expierance. dr. can be very insensitive sometimes, it took me a while to know how to be my own advocate and you really have to shop around for a good doctor. jsut because they are an MD doesn't mean they know what they are talking about. you have to really search them out. The cleveland clinic and the mayo clinic is where i found a lot of help. its hard advocationg for yourself when you feel so sick. You MUST have a POSITIVE mental attitude if your going to make it. i spent way to long feeling sorry for myself and i just got worse. (but don't get me wrong you need time to process it so feel bad but not for to long.) can i help with anything? i hate to see someone go through so much pain like i did...i am so sorry you will make it my dear! my mom is korean and she always says, "be strong like bear" it makes me laugh but gets me through.

Pat said...

You are very brave and you have been through a lot. The doctor was very rude. My first time in hospital was the same because i couldn't speak english and the nurse was so rude!
I hope you get better soon and can't wait for the rest of the story.
Warm hugs xx

Irēna said...

SO SAD STORY! I really hope you will be better soon. Do you know- www.4life.com?

Heather said...

The cold heartedness of that doctor brought tears to my eyes. I'm so sorry for your struggles and will pray for you in this.

Angeline Yoshiko Penang, Malaysia said...

Sachiko San..Pray you will get well soon. お大事に。

elizabeth said...

Have you ever spoken to a MD about having massage? I just wondered about the pain and tension you are experiencing and thought massage might help. However, you would have to talk to the doc before pursuing this type of therapy just to be certain it is safe considering the circulatory issues in your leg. Obviously, massage is not something you could tolerate when your pain is peaking, but as a form of therapy during pain free times. Are you able to elevate your leg at all? Get into a jacuzzi? Just suggestions to help with circulation, but again-talk to your doc first.
It sounds like you're in extreme agony at times and the thought of you lying in bed, crying etc is heart breaking 'cause you're such a dear, sweet, gentle person. I'm so sorry to learn you suffer in this way as pain can be very debilitating. Do you take anything to help with the pain? Sometimes people try to "muscle through" painful situations, but not always the best way to manage pain.

maho said...

Dear Sachikosan,
I just started to follow your blog and raid your post. I am so sory to hear about your condition and hope for the best.
I know that one of the hardest things is to be away from your family, I am like you a Japanese that lives far away from her parents, although I have born in israel, where I live now, but my parents went back to Japan 16 years ago, and I know how hard it is to be away from your family that loves and understand you the best.
All I can tell you is that you need to put in your mind the cause to get better and stronger. As a nurse I can tell you that you should just ignore Dr. D he is an ass and unfortunately they don't get any education of how to treat peoples feeling just conditions... But take in mind that sometimes the not nice doc do know a thing or tow and I am not saying that to protect him or anything like that.
I hope soon you will get better and be well and shiny again, it will be a lot sooner then you think.
My thoughts are with you!

maho said...

Dear Sachikosan,
I just started to follow your blog and raid your post. I am so sory to hear about your condition and hope for the best.
I know that one of the hardest things is to be away from your family, I am like you a Japanese that lives far away from her parents, although I have born in israel, where I live now, but my parents went back to Japan 16 years ago, and I know how hard it is to be away from your family that loves and understand you the best.
All I can tell you is that you need to put in your mind the cause to get better and stronger. As a nurse I can tell you that you should just ignore Dr. D he is an ass and unfortunately they don't get any education of how to treat peoples feeling just conditions... But take in mind that sometimes the not nice doc do know a thing or tow and I am not saying that to protect him or anything like that.
I hope soon you will get better and be well and shiny again, it will be a lot sooner then you think.
My thoughts are with you!

Mary Ellen said...

So very sorry to hear about your health issues. Your blog has been one of my favorites for clothing design- it is amazing how creative and upbeat you are with all the pain you must deal with.

Franstuff said...

Doctor's like Dr. D are a disgrace to their profession. I hope you have had much more compassionate care since that awaful day.

Thank you for the wonderful blog and tutorials. All that you do, your beauty and creativity, under difficult conditions, are an inspiration.

Sew Country Chick said...

All i can say is I am ashamed at the rude and uncaring behaviors of some American doctors. I was treated very unkindly when I was having my fourth child. I don't think Japanese doctors would ever be so rude. It must have been a shock coming from such a kind and polite country to be treated that way.

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