Monday, November 21, 2011

Untold Story of My Medical History / Part 5

If this is your first time visiting my blog and wondering what is going on, here is the first 4 parts. part 1, part 2, part 3 and part 4.

Some parts are what I heard from my mother-in-law and her experience, when I did a mini interview with her; I refer to her as mom throughout this post.

After Dr. S referred Dr. E in Massachusetts General Hospital, mom called his office. Although Dr. E was out of the country at that time, mom was able to explain everything to his secretary. She told mom to gather all the medical records, and send to them so when he gets back, he can take a look at it.

I was still very ill, but we didn't know what to do next. Since I had to deal with pain all my life, I am pretty good at that, but not knowing what the future will hold (if there is a future) was the part that was putting my spirits down, to be honest, I thought maybe, this time I am really going to die.

One evening around 9:00 pm, the phone rang at my in-law's house. Mom picked it up, and to her surprise it was Dr. E himself. If it was 9:00pm in Utah, that means it was 11:00pm in Massachusetts... Mom and I talked about this; Dr. E probably came back from overseas, saw the medical records, and heard how urgent this was and decided to call her right away instead of waiting till the next morning. Seems to me, that is someone who truly cares, a doctor who I desperately needed to find...

Near the end of the conversation, Dr. E said this to mom, "You explained very well (including all the medical records that were sent to him too), Sachiko does not have Kasabach-Merritt syndrome, she has Venous Malformation."

WHAT??? All my life I thought I had Kasabach-Merritt syndrome, but I didn't? I will actually get more of an explanation from Dr. E later on, but at that time, I was still skeptical, but wondered if the doctors in Japan misdiagnosed me.

Also, Dr. E asked mom how soon we can fly to Boston and come see him...

All I could do at the time was just lie in bed and deal with the pain. Although, everything was falling in to place, there were many times in my life where I have met amazing people that have helped me through difficult times. This was another experience that taught me that there are angels among us. My in-laws, Mr. TRH worked everything out so that the travel was doable. We were still young, and just purchased our first home; we didn't have enough savings to cover the cost of the trip. Without my in-law's generous help we would have had a much harder time going to Boston. Mr. TRH had to get a week long time off from work and school. We were able to reserve a seat on the airplane with wider leg room. I was very nervous going on the trip, because I have been lying down for so long, I didn't know how long I could stay sitting with pain. We thought with the extra leg room, I could even lie down on the floor if I needed to. The people at Mass General as well, they worked everything out so I could come to see the doctor and possibly to have a procedure done to help me.

The trip to Boston was one of the fond memories that I think about often. It was indeed uncomfortable to sit, but I made it through. When we got to Boston, I was surprised to see the city has similarities to where I grew up in Japan. The gray sky, rain (living in Utah, there is quit a difference), a river that runs through in the city... from inside of the moving car I was eagerly looking and observing the scenery and I had plenty of time to do so because we got lost! We rented a car, and from the airport to our hotel we got lost...well, we were lost for almost 4 hours! The roads in Boston are more complicated compared to Utah and there were many "one way" streets, and we had to go all the way somewhere to go back and such. I didn't mind though, looking at unfamiliar scenery, joking with each other back and forth really lightened my soul. Not to mention that meeting the doctor who might be able to help me was giving me hope.

We stayed at a nearby hotel to the hospital, and went to see Dr. E the very next day. The meeting and talking with him was such a life changing moment for me. He explained that the Kasabach-Merritt syndrome and venous malformation are VERY similar in terms of conditions. At the time I was born, there was no way of knowing which was which. He said that the patient who has Kasabach does not live a long life; in fact a lot of them die at a very young age. He also told me that sometimes, Kasabach can change into venous malformation too. So, either I had venous malformation all along, or I am the extremely lucky one where Kasabach changed forms and became venous malformation.

He also reassured me that there were no treatment back then, so my parents and doctors made the right call of amputating my leg. He has been a specialist of this condition and has seen so many patients, but he has never seen a condition so extensive as mine. Because of it, there is no cure for me, but with a certain procedure it is possible to control the symptoms.

I had more questions, and he had more answers. This was the first time in my life that one doctor knew everything I wanted to know. Dr. E was kind, compassionate, and not arrogant at all... (Dr. D and Dr. T- In your face! :) ). After talking to him, I felt like a cloud was lifted and I had a clear view of part of my life!

The next day, I went back to the hospital to have my first sclerotherapy. Basically, they will inject this formula directly in to my veins that are too big and wide and try to shrink them. Of course during the procedure I am completely asleep... when I woke up from the procedure, I had a really bad reaction to the anesthesia, but that wore off and I was able to go back to our hotel the next day.

The next few days, I was recovering at the hotel, except when we went out to eat. We couldn't do much sightseeing, but we had a great time. We watched many movies in the room, one night we watched this B-movie called "The Tick". A giant tick was attacking people and killing them. We were laughing our heads off at certain lines, and situations. I LOVED the lemon sorbet at Legal Seafood too! I promised myself that someday I am going back to Boston to do sightseeing and visit many museums and shops.

Dr. E also located a Doctor in Utah who can do the exact same procedure for us. After the first procedure, I saw an amazing difference for the first time in a few months. The pain in the leg was reduced, I was able to sit and move around on my crutches around the house, even though I still had many areas that needed the procedure. I had the procedure done every 6 weeks for the next year and a half. Because of sclerotherapy, my quality of life has greatly improved. I was able to have three beautiful children without major complications. I was able to have a hip replacement (oh yeah, I was also born with abnormal hip dysplasia, and it was giving me awful pain all the time).

Now, when I notice the pain or anemia creeps up on me, I know where to go, and what to do to make it better before it gets really bad. I have some control over my syndrome, and that is an amazing feeling of freedom and security.

On a side note, I had the pleasure meeting another doctor at the U of U. She is my heroine Dr. B a Hematologist. She was helping me to control my anemia, and also she finally discovered why my body kept rejecting the blood I was given.

Test after test, there were still no answers. She even sent out my blood samples to labs in different states. The people in the lab at the U of U were also trying to figure out this mystery.

One day I was at the hospital (I don't remember why I was there, but I was waiting for something) and a man came in to the room. He seemed very excited and said, "Hi! I am so and so (I can't remember his name, and that is the only time I met him), first of all, can I shake your hands?".

I was puzzled about his request, and thinking to myself, "OK... Who is he? Why does he want to shake my hands? So...odd..."

As he was shaking my hand, he started explaining to me that he finally solved the puzzle of why my body was rejecting blood transfusion. Basically, my blood is missing little antigen-e. When I receive blood with little antigen-e, my body doesn't recognize it, so it starts attacking. So, as long as they clean the blood and remove little antigen-e then give it to me, I am fine.

Usually when they run the test, they do not run such an extensive set of tests. It cost more time and money. Then Dr. B and the man from the lab were determined to find out why and their determination paid off!! I was so excited to hear the news. There are no more bad reactions to blood transfusions!

He also said that he heard about a condition like that, but he has never met a person with that blood type in 10 years of working at the lab. He was so excited to finally meet one.

I went through a whole bunch of frustrations and sadness, but in the end (well...at least with this story. I have so many more medical stories) it was well worth it. I discovered so many things about my conditions, found a procedure that will help me and the love and respect towards Mr. TRH increased by 200%. I knew I married a nice person who loves me, but the love, support and devotion he gave me during that time was way more than I could ask for. And sometimes I wonder, if I can do the same for him if he is the one that gets sick. Whenever I think of that, it makes me wanna be a better person.

Sometimes, people tell me that I am a very special. Yeah... I was born with venous malformation, Abnormal Hip dysplasia, missing little antigen-e in my blood and top that all off with allergies to most pain meds. I am special all right. I stop asking "why's" a long time ago, but I can't help but hope that since I feel like I had my share of medical craziness, I will not get any more scary stuff.

Speaking of hope, one of my good qualities that God has blessed me with is that I am always very hopeful. When my boys were littler, one of them said; "when I get big, I will become a scientist and invent a seed to grow your leg back!". That made me smile.
But hey, we can put a man on the moon, or select genders of babies, why not a seed to grow my leg? I will never say never... I only never give-up. :)

Thank you all for reading such a long post! I am really thankful that there are people interested in my story and who take time to read them. If you are going through a tough time, hang in there... I will be thinking of you.

Love & hugs

Sachiko

43 comments:

Mikaela said...

Thank you, Sachiko, for sharing your very personal story! I am inspired by your uplifting attitude and the doctor who changed your life. It is also encouraging for me, as my mother is dealing with a lot of pain, and has been for the last five years. I hope I have and will continue to support her as your husband and mother-in-law did for you!

Christie said...

Sachiko, you are so brave and in tune with the spirit. Best wishes to you on your journey through this crazy thing we call life.

Mrunmayee said...

I have been following your medical story since the very first part and have been eager to find out more. But more than what happened to you, the thing that most reached out to me was that after all that, it's the love that stands out - love of your husband and in-laws. Such difficult situations make us so grateful about the people around us. Kudos to you dear and hang in there. I am sure about that coz really, you are a brave person.
Love from India.

Irēna said...

I always think-there are a lot of good people around us.. The more you think so the more often you meet them.. I am happy to read that you finally met so good doctors.. this is very impiortant

Fifi said...

God bless you!
Peace, Love and Light

Cami @ You Seriously Made That said...

Thank you so much for sharing your story! You can truly see God's miracles in the small details. How amazing to have people in your life like Mr. TRH and your mother-in-law who are in tune with the spirit enough to follow its promptings. Thank you for your story of inspiration. I hope all the best for you...and I DO hope one day your son can grow you a leg :) Take care and God Bless!

Tas said...

What an amazing journey you have been through. Thank you for sharing your story.

Lily Petkova said...

Sachiko, I'm reading your blog for so much time, I'm your follower, I admire everything you did, and after I read your touching story, I'm honestly deeply touched. You are really a special person. That is the reason God sent you a special partner-to-live-with and to share love and compassion. I wish you all the best, keep up your spirit high! You are a true inspiration! God Bless You!

Pat said...

Thank you for sharing your medical story with us. May God bless you and strengthen you for all He has created you to do. Thanking Him for you today!

seashoreknits said...

Sachiko, you are a very inspiring and lovely person - I feel so blessed to know you. God gave you a very wonderful husband and He blessed you with a spirit of gratitude and grace that is so beautiful to see. Thank you for sharing your story with us.

GerryART said...

Yay, for you gal ! ! ! !
hugs
Gerry

Redo 101 said...

I am so thankful for the doctor in Boston ... for the doc in Utah and for the lab tech who found little antigen-e missing. I am so thankful for your hope and your gratitude to your husband who stands by you.

Hugs,
Mary

Jamie said...

All the twists and turns in this story... there is so much beauty! I love the part about your son and the "seed". And what an amazing set of in-laws!!!

Angel said...

You have been through such a great ordeal in your life… but it’s amazing that you were able to overcome all of that with such a great personality, and with such appreciation and respect for those trials.
You have such a wonderful spirit, and I am so glad I stumbled upon your blog… I hope to read your posts for a long time to come : :) <3 Angel from One Sewing Mommie blog.

Lynette @ My Craft Discovery said...

Thanks for sharing! I have enjoyed reading your journey, and I'm so glad you finally found some great doctors and treatments to help you! Isn't it so great when you find out little things like your blood type that make life lots better? Thanks again for sharing!

The Lawrences said...

you are so fabulous! thank you for sharing your story!

Becky said...

You brought tears to my eyes! I'm SOOO glad that you found a good doctor and Yea (!!!) lab!! I'm a former medical lab technologist, and I even have a medical lab quilt that I made last January (2011). It has a blood bag on it that I sewed together the day Gabby Giffords was shot. The majority of medical people are like in this story. I'm so sorry that you had to encounter the bad ones first. Your son will be a wonderful adult some day who will help lots of people. Sounds like he's already helped you a great deal. How sweet! Thank you so much for sharing your story.

Tyree said...

I've read your blog for awhile and already decided I liked you as a person and not just your blog. Now I like you even more. You are an amazing person. Thank you for sharing your story. Thank you for a humble beautiful blog.

Brooke @ Spruce Your Nest said...

What an amazing story! Thank you so much for sharing. God has blessed you with so much and I am sure that your story will help so many going through struggles. You offer so much hope!

Emily said...

You are so inspiring! I love your positivity and how you truly appreciate the good things in life. Thank you for sharing your story and your blessings.

Joan's Recipe Box said...

Thank you for sharing your very touching story. I am inspired by your ability to deal with the pain. I am old and have a condition in my spine that causes me a lot of pain. I feel that knowing someone deals with so much more helps me to know I can endure what I do.

I think you are an extremely talented designer. I hope you will be recognized someday for your creativity. Beautiful.

dannyscotland said...

So glad to hear you finally found some nice and kind doctors and that this particular story has a happier ending!

JessicaBusby said...

Wow sachiko, all you've been through and still you have such great spirits! Good for you!!

AZ Allreds said...

Thank you for sharing your story with us! Thank you for being an example to always have hope even when what we face can be so dire. I am grateful for all the blessings and tender mercies that we find in live...and it was inspiring to read about yours and all the blessings that have followed. Prayers for continual success...and you never know, a seed to grow limbs...hope is infinite!

Danee said...

It has been interesting reading your story. I am nurse So I always love the medical stories. But I am also a patient- I Have Hypermobile Ehler's Syndrome and Chiari Malformation and I too have medical nightmare stories. Both of my conditions are also very painful but thankfully I can tolerate pain meds because I live on them. I too have stories of docs that are complete jerks, treated me badly, and misdiagnosed and mistreated my conditions. I too have hope- that is what keeps us going. I too have had painful procedure every 3-6 weeks for the last year and half- prolotherapy involves injecting glucose water into ligaments to cause scaring and tightening of the ligament.

Ironically, I have treated a patient with anti-e blood. He was a hemophiliac and required blood transfusions frequently. I was young- 23 at the time (20 years ago)- but I distinctly remember how hard it was to get -e blood.

I am amazed at your husband's reaction. Mine is usually a jerk when I feel bad. I find that is pretty typical of most men. You have are lucky- hold on to him.

Danee

Pam said...

I'm so glad that you were able to get answers to your questions and to find that your condition can be controlled with the procedures. Your husband and mother in law are most certainly your blessings.

Desire Empire said...

Glad you found some relief and what a wonderful family you have.

Kristin said...

I have loved reading your medical history story. You really are an amazing person, Sachiko. I'm sorry you've had to deal with this all your life. You are a great example to me of someone who really handles trials with a positive attitude. You are so sweet and kind when you have every reason to be bitter. Thank you for your example. Let me know if ever you need help.

Staci J said...

I loved the beautiful ending to your story! You're such an inspiration of hope and inspiration. Thanks so much for sharing with all of us:)

Sachiko said...

Hey everyone,

Thank you so much for your sweet comments! Some of the comments made me blush... really I am not that much of an inspirational person though. I am just going through life trying to be the best I can. :)

To some of you who have medical conditions and going through a hard time- please know that my heart goes out to you eventhough we have never met.

Sharing my story on my blog helped me to not only organize the events in the past, it also helped me to see how blessed I am. Some things in our lives are not fun, and I preffer not to have those, but I also know that they are there for a reason.

Nunurina said...

Te mando un fuerte abrazo. Eres una persona fuerte y valiente que ha con tanto sufrimiento, se ha ganado una vida feliz con su marido, hijos y familia.
Deseo que todos tus sueños se hagan realidad.
Núria.

Alexandra said...

I'm so grateful to you for posting this, at a time when I really needed to feel that there is always hope, no matter what. After a truly terrible year, and having struggled with constant pain and very bad reactions to the opiates the doctors have tried to give me, I was beginning to feel really sorry for myself. But this post has reminded me that there's so much more going on than what's happening with my body.

It's nearly Christmas now. I'm going to pick myself up and get festive.

Thank you.

Morgan said...

Thank you so much for sharing your story. You have such courage and hope. You are absolutely right, "never give up."

Lauren K. said...

Thank you for sharing your story! It reminded me that no matter the struggles we are going through, to have faith and to keep going with a positive outlook. I am struggling big time with positivity right now (our home was broken into) so it was a great reminder!

Sachiko said...

Lauren,
Ugh! What makes people think it is OK to do that to others. I hope you have a better December.

Mirissa said...

You are such an inspiration. Thank you for sharing your story and your optimism!

G Inspires said...

I know I'm a little late with this comment but it dawned on me today that I was wanting to read this but I had forgotten....until today! These medical stories of your are so enlightening and uplifting....I knew I couldn't miss this post. I'm happy I remembered to get back and read this post.....happy endings are the best! I'm very happy for you!

(un)Deniably Domestic said...

Your story is amazing and your strength unmatched. Thank you for sharing. ~Kelly

edonline said...

Hi Sachiko, a friend of mine directed me to your site after I posted a vent on doctor in my face book. I too was born with a brain artery and venous malformation. I have a very similar story to yours. And in the end I too found some great doctors. I don't live with the kind of pain you did/do, instead my condition causes seizures. For the most part we've kept that controlled. Like you, the problem with my condition is that it's too big to be treated. Being that my avm is in the brain, amputation isn't exactly an option :) - I did sclerotherapy, although here (Canada) they call it embolization quite a few times until the last time I woke up paralyzed from the ankle down and remained that way for 30 days. I did recover some movement, but not fully. After this we had to make a decision (I was 30 at the time) keep going and risk full paralization or worst (We had three kids at the time (now five) ) or stop and take our chances. We decided to stop unless my brain bled, at which point we have no choice but to do something that will more than likely leave me completely paralyzed or dead. The problem is that the longer we don't do anything the more the odds increase that my brain will bleed. My wife made the mistake of going to check the chart yesterday...I'm now at 81% chance of bleeding. I've outlasted one doctors opinion of my life expectancy by over a decade now. I too am surrounded by strong family support, a wife that has loved me through all this, and a faith in God that keeps it all in perspective. There's more to life, than just this life. Although there's no guarantee, the likelihood that this will take my life is pretty big - the fact that in another decade I will be at 100% chance of my brain bleeding is a weird notion, but I kind of look forward to beating those odds too. If it doesn't happen - I'm thankful for the life I've lived already. I do want to see my kids grow up. My oldest kids are at the age where I need to sit down with them at talk with them about the reality that I might not be around forever, that's a hard thing to think about. I've seen some of the top doctors in the world in regards to AVM's and right now they've done everything they can do - without absolutely risking my life.

Thank you for your story - and may God grant you lots of peace, strength and a long life.

Edmundo DeFreitas

Sachiko said...

Edonline--

Thank you for sharing your story.
Sounds like you have been through so much. It is scary to hear that you have avm in your brain... I hope the medical technology advances enough that they can do something for you safely, so you can stay here on earth for your wife and your children for a long time.

Raquel Leal said...

Boa sorte querida! Seu blog é muito, muito lindo. Beijos do Brasil.

Marietta said...

Sachiko, I have been following your blog for the past year or so, and enjoying your creative thought process and designs. But your story of your life and medical history has brought me to tears! You have been through so very much, and went on to also have your children despite all the pain, suffering and uncertainty you have have borne. As for your husband and mother-in-law as well as your mom, they are also heroes big time!!! This is a story of such great love, devotion, compassion, and perseverance. I am glad you a married to such a lovely man! And so glad to hear that you are doing much better. May God Bless you and your family! Your children have learned compassion from you sister.

Sreekala Rajesh said...

Hi Sachiko,
I believe that we come to earth having already set a course of lessons to study. I think you got the beautiful lessons of love - see how you have always had people to support you. Would you have experienced that kind of unconditional support if you had been healthy? God bless you always!

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