Monday, October 6, 2008

My kids and Hemophilia

My boys had a 50% chance of inheriting my bleeding disorder. Rooster has always shown signs while Tater has never had a problem. We decided to test both of them. The initial test on both of them showed negative but because of Rooster's problems the hematologist decided to treat him as if he has a bleeding disorder. This was at the time the hardest discussion I had to have with Rooster. He had been waiting for the day that he weighed enough to play football and the year we got the diagnosis was also the year he weighed enough but couldn't play because of the chance of serious injury.

I went through a horrible amount of guilt knowing that I gave a disorder to him that would affect everything he does in life. Rooster was an incredible amount of strength for me. The day that really turned around the way I thought about this disorder was when he climbed up on the couch with me and said "You know mom, I think God gave me hemophilia so I could be the one to find a cure for it when I'm older."

From that day we have never looked back or questioned why. Instead we take it one day at a time, one surgery at a time and somehow we've made it through.

Friday, October 3, 2008

Not a cold

There is not much in life that I truly hate but going to the doctor definitely falls under that category. My cold wasn't going away, if fact I felt like it was getting worse so I broke down and made an appointment. I was so confused when he told me he needed to do a chest x-ray and asked him why when I was sure I only had a sinus infection. Turns out I actually have pneumonia. I've been spending a lot of time in bed, Bunco last night wasn't bat wings and all the yummy stuff I had planned (did KFC instead) and have zero plans for this weekend. I don't have time to be sick but I really don't have time to be sick in the hospital so I'll take it easy this weekend and hope Monday is better.

As women, we need to remember to take time for ourself and if that means we're sick for a day or two so be it. I really think if I had taken care of the cold up front I wouldn't have pneumonia now.

Sunday, September 28, 2008

What a way to end the summer!

I'm sad to see summer go but even more sad about the way it ended! Not with a big BBQ as we usually do but instead sick and in bed. Rooster and I have a cold for the past week. He missed a day of school and has been getting better. On the other hand, I've done nothing but sleep and cough and blow my nose for a week. Enough is enough! I guess I should count my blessings because Tater and Twitch haven't got it yet. They will probably wait until I'm better and pass it back to me.

Here's to hoping we all have a healthier fall and winter!

Tuesday, September 23, 2008

Finally, a diagnosis

Until 4 years ago, I lived with my bleeding problems without really giving it a second thought. The nosebleeds, the gum bleeds and my monthly cycle had just become a part of my life (albeit a pain to deal with) to me it was “normal” and just the way I was.

One morning I woke up with large bruises on each leg. They went from my hip to almost my knee. I couldn’t remember hitting my legs and certainly didn’t do anything to cause that much trauma. After much prodding by my mom and my husband, I called my doctor’s office and spoke to a nurse. When I explained what was going on she got me an appointment the following morning.

The next morning the nurse did a finger poke to check my iron level. She came back in minutes later to check it again. She said if the level was correct I would need an immediate blood transfusion. My doctor came in to tell me that results were accurate and he wasn’t sure how I was even walking. He scheduled me for admission to the hospital the following day to receive an iron infusion. He also drew blood to check for cancer and scheduled a colonoscopy and endoscopy to check for internal bleeding.

All initial tests came back normal so the internist scheduled a test where I would swallow a camera so they could look more extensively for an internal bleed. While waiting to have my next test, I heard a commercial on the radio from the Utah Hemophilia Foundation talking about Von Willebrand’s Disease. The symptoms matched mine perfectly for once in my life I felt like a had an answer. At my appointment with the internist I expressed my concern about the upcoming test and requested he do a blood test for Von Willebrands. He refused saying that it would need to be my regular doctor who ran the test and “wouldn’t it be nice to be able to tell him there was absolutely no internal bleed”. Read here after you spend several thousands of dollars then we can do a simple blood test. I canceled the appointment for the camera test and scheduled an appointment with my doctor who was happy to do the test. It took about 2 weeks for me to get the call from my doctor.

I knew by the way the conversation was going (a lot of casual conversation up front) that his news wasn’t good. I finally asked for the results and he said the Von Willebrands test was normal. He then said that the test for Hemophilia, which I didn’t know he was running, showed that I have Hemophilia. Honestly, I was so afraid I couldn’t talk without crying. My only knowledge of Hemophilia was that of Ryan White, who died of AIDS because of a tainted blood transfusion giving to treat his hemophilia. My doctor is amazing and had me calmed down shortly after he told me what it was. Now that I look back I’m amused by my reaction. I remember recalling the date and thinking that I would never forget the date that my life changed forever. Today, I can’t even tell you the date. I’m pretty sure it was in July but I have no idea of the date.

Monday, September 22, 2008

Life before my diagnosis

All of my life I have had to deal with problems with bleeding.

I would get nosebleeds that would last 4-5 hours. I was a dancer and a gymnast and had problems with my knees. I went to the doctor several times for what we thought was water on the knees, I now wonder if it was actually a bleed. Surgeries were always scary. I had one surgery that should have lasted 1-2 hours that lasted 6 because they couldn’t stop the bleeding.

I actually feel blessed that I wasn’t diagnosed earlier. I can say that now because nothing life threatening happened before my diagnosis. Had I been diagnosed when I was younger I would have received blood products many of which were tainted with HIV. Many people living with a bleeding disorder are also living with HIV or AIDS and Hepatitis. And too many families have lost loved ones to AIDS.

Thursday, September 18, 2008

Bleeding Disorder Statistics

It has been reported that 1 out of every 5 women who went to see their doctors because of heavy bleeding during their periods was diagnosed with a bleeding disorder. (Kadir et al, The Lancet, February 14, 1998)

Keep in mind this study evaluated only women who went to their doctor. I believe there are many more women who, like me, think heaving bleeding is normal and don’t seek medical help. In addition, the study did not fully evaluate platelet function. So this number is likely higher.

The CDC has reported that, as many as 2 million women may have a bleeding disorder and not even know it. That means there are too many women who suffer monthly, have unnecessary hysterectomies and are not living a quality of life that they can.

Please remember heavy, prolonged periods are NOT normal. The cause may not be a bleeding disorder but it does need to be evaluated.

Wednesday, September 17, 2008

Signs to be aware of

If you have any of the following symptoms please discuss them with your doctor. If you don’t feel they are doing everything they can to identify the reason, go to another doctor.

· Very heavy periods
· Regular bleeding from the mouth or gums
· Frequent nosebleeds or nosebleeds that last a long time
· Easy bruising
· Excessive bleeding after injury or surgery
· Bleeding from small cuts for a long time

Signs of bleeding disorders in women are often mild.

Research shows that diagnosing bleeding disorders in women is difficult. One study found that women had symptoms for an average of 16 years before they were diagnosed.
Tests for bleeding disorders are not always accurate. The test can come out normal even when a woman has a bleeding disorder.

Hormonal changes, aspirin, hormone therapies, pregnancy, breastfeeding, childbirth, exercise, and stress can affect the blood results.

Made by Lena