The Centre for Blood Research

So, here is the finished product of an interview I did for the Centre for Blood Research.
I like to tell my story with the hopes that it will help other people or maybe make people feel better about what they are going through.

If you get a chance you can check out the article here:
http://cbr.ubc.ca/2013/01/04/hemophilia-is-for-girls-ryanne-tells-her-story/

Thanks for reading!

 

In sickness and in health

So, Friday night I woke up at 3 am in so much pain I couldn't stand it. I woke Zane up and early Saturday morning we ventured into the hospital.
I must of looked awful because my the time Zane parked the car the triage nurse whisked me into a room and I began a 10 hour torture process.
I met the Emergency room doctor and she didn't seem overly concerned about the state i was in. After an IV was started I was given morphine for pain and maxeran for nausea. Anyways, to make a long story short the emergency room Doctor decided she would send me home. What in the world she was thinking I will never know. I panicked, I called the hematologist on call (which I had already done before) and pleaded with him. He said he agreed to send me home as well. I felt awful, I didn't know what to do I felt helpless. I won't go into detail about the next part but basically my darling Dr. Poon from the Hemophilia clinic swooped in and saved me.
Eventually Zane was exhausted and Dad came in to take a turn at the circus that was the emergency room.
For about 6 hours I was in a loop of taking a shot of morphine, getting up to go to the bathroom then vomiting violently for about 5 minutes.
A different Doctor eventually wandered over and asked how I was doing, I figured by the moans and groans he would know I wasn't doing well but I played along and answered the same questions I already did for the triage nurse, the emerge nurse, the emerg doctor and the hematologist on call. He eventually said What do you think it is? and I said well I'm not sure because I normally feel better after my blood transfusion. He looked puzzled and said, you know theres no actual pain killer in the blood transfusion right? I was so insulted and so confused as to why he would state something so obvious but I often find emergency room doctors to be cold, unsympathetic and condescending.
I would spent the next 5 days in the hospital getting an EKG, Blood Work, CT scan, two ultrasounds and 8 units of plasma.
To treat the pain we moved from Morphine to fenteyl to percocet and I am sad to say i am still finding myself in pain. It's 3:00 am and I find myself unable to sleep.
I can't stop thinking about the whole ordeal. I am praying that I am in recovery mode and I will start to feel better so I can get back to my life. Only time will tell I suppose.

It's Christmas time in the city

So, it's almost Christmas time again. My favorite time of year. With that being said, I can't help but feel a little bit guilty every year because of all the wonderful things we have while and some people have nothing. Every day when I get home from work there is a parcel or card or gift of some sort waiting for me. It's getting to the point where you can hardly see our Christmas tree!
Not only do I think of the less fortunate but I also think of those who can't afford treatment for their Hemophilia. It breaks my heart to know that there are people out there with bleeds and have no treatment or hope in sight.
This is a great organization that is dedicated to providing Hemophilia care for people who can't afford it. Please take a minute and check out http://www.saveonelife.net/. Save one life does exactly that, it saves a person from the pain and suffering of bleeding disorders. I hope everyone has a safe and happy Christmas season!
 

Centre for Blood Research

So, I was recently asked to write a little bit about myself for the centre for blood reasearch. Please check out their website here! http://cbr.ubc.ca/.

So this is what I came up with. If you have a minute please read.


My name is Ryanne Radford. I am a female sever factor 5 hemophiliac with less than 1% factor five level. I was born and raised in a small town in Newfoundland and Labrador with a population of about 10,000 people. It was there that I diagnosed with Hemophilia at seven months old. My diagnosis came about after I hit my head and developed a large hematoma on my head. It took a while for me to be diagnosed because I have no family history or Hemophilia. My mom and Dad are healthy and I have two healthy older sisters and lots of healthy cousins.

When I first started showing signs and symptoms of Hemophilia the doctors suggested that I was perhaps playing too rough. My mother says that she knew that wasn't the case and my Aunt had suggested Hemophilia but was told that that was nearly impossible. After 9 months of my parents travelling back and forth from our home town to the hospital about an hour away I was finally diagnosed with hemophilia.

In larger cities Hemophilia is not that rare but in my little home town it seemed very suspicious to have a baby covered n bruises and bleeding from the nose and mouth. I know the hospital contacted social services several times to investigate my family. When I heard about this at first it was very upsetting but I know the epople at the hospital were just doing their jobs.

My family doesn't often talk about how hard this was on them. They always act like it was no big deal but every now and then they will mention bits and pieces of what was going on in their minds and I know it was a nightmare for them. My older sister says that she always felt like a terrible big sister because there was nothing she could do to help me. My mom said she found it hard to see me hooked up to so many machines and IV poles. My father said that he was once told that I wouldn't live to be past 18 years of age. I also remember them saying it was very difficult to find a baby sitter for me because no one wanted to babysit a child who could get hurt so easily.

In the early days they didn't have the stylish helmets for Hemophiliacs like they do today so the physiotherapy department at the hospital did their best to create a protective helmet for me made out of stripes of material. I wore my helmet around the house but my mother didn't want me to be treated differently so I didn't wear it out in public very much.

When it came time to go to school I was very lucky, I was never treated any differently and my teachers seemed to be aware but never afraid. I think that was because of my parents they treated me just like any other child and everyone else seemed to follow suit.

Growing up I would be treated with four units of Fresh Frozen Plasma every time I fell off my bike, lots a tooth or twisted my ankle. The most traumatic experience I have had to date was when i was When I was twelve years old I started my period and began having lots of problems, it would not stop and I began loosing lots of blood. I began getting treated with 4 units of Fresh Frozen Plasma once a month which worked for a while until I developed ovarian cysts which ruptured and bled into my abdomen. This was a major bleed and I spent almost a whole year in the Janeway Children’s Hospital in St. John’s, NL. I was treated with more than 100 units of fresh frozen plasma. The doctors contemplated a hysterectomy but felt it was too aggressive. They tried several which imitated menopause and caused me to have some very interesting symptoms but I was still having some bleeding so I eventually tried the birth control pill which seem to work perfectly. My other major bleeds have been into my iliosopas muscle. I have bled into this muscle several times and each time it seems to quite a large bleed. My most recent ordeal was in December of 2009 I was admitted into the Foothills Hospital in Calgary for an iliosopsas bleed. I was told that the bleed was quite large and was on bed rest for an entire month. Needless to say it was the worst Christmas ever! But I did get lots of presents whether or not that was because I was in the hospital we will never know!

As I get older I really worry about employment. No one wants an employee who is out sick all the time and with no warning. This has been a source of pain for me for sure as I have been fired, laid off and threatened in the work place because of my Hemophilia and the frequent sick days that I sometimes have to take. Right now I am working full time and I have hope that this will be a good experience for me.

My Hemophilia has affected every aspect of my life including, what I studied in school, where I live and my hobbies and interests. Right now I am completely wrapped up in wedding planning. Our wedding will take place on July 20, 2013 i our home town of Stephenville, Newfoundland. We are having a big church wedding with about 200 guests so you can see why I've been taking so much time in planning.

Hemophilia has been a big concern of mine when it comes to wedding planning because I worry I might get a bleed and not be able to fly to Newfoundland or I will get a bleed before the wedding and be in pain on my special day. In this case I just have to pray for the best and try not to worry about it too much and jut take each day as it comes.

The best treatment for the last 28 years has been Fresh Frozen Plasma. I will be treated with varrying amounts depending on the location and severity of the bleed. For example a simple elbow bleed might need only 4 units whereas the larger bleeds I've had required nearly 100 units. My doctor and I have recently discussed the use of Octaplas a product produced my octapharma. We have decided to go with this product as it is detergent treated and has less risk of blood borne pathogens. I have not tried this product yet and am nervous to try it.

Living with a chronic illness isn't easy. I find support in a lot of ways. I am blessed with a wonderful fiance and a large circle of friends and family. I also attend church and do a lot of volunteer work. Currently I am the Co President of the National Youth Committee of the Canadian Hemophilia Society. In am also the past president of the Calgary chapter of the canadian Hemophilia Society. I find it helpful to tell my story. I started a blog about 3 years ago dedicated to raising awareness for women with bleeding disorders called Hemophilia is for girls. I have about 105 followers and have been featured in three American publications. My blog is most popular in Canada, USA and India. Social media is a great tool and I use it on a daily basis to connect with other hemophiliacs from around the world.

I feel that it is so important to have students educated in the field of Hemophilia and bleeding disorders. Patients with this condition often need prompt care and very much need a doctor who will listen to them.

I speak every year to the first year medical students at the University of Calgary and I am always happy to do it as simply being educated can make such a huge difference in the way people with bleeding disorders are treated.

Although there is no cure for Hemophilia at the moment I feel that having resources, support and education can certainly lessen the negative effects a bleeding disorder has on someone. As for me, I feel I am doing my part by documenting my life, the good the bad and the ugly, that way maybe some other person down the road might be able to read it and get some help from it or at least it will put a smile on their face.

My Morna

So, one of my favorite nurses of all time is retiring and so I took a few minutes to write about her. Anyone who has had a great Hemophilia nurse will know what I mean!

My Morna

I had the pleasure of meeting Morna about 5 years ago when I first moved to Calgary. in the short amount of time this tiny woman has made a huge impact in my life.

Morna is the one of the nicest nurses I have had in my whole life. She is kind, caring, knowledgeable and most of all she does what is best for her patients.

She is not only a nurse to the patients she sees on a daily basis but an advocate to patients with bleeding disorders all over the world.

My favorite part about Morna is that her nursing doesn't  stop at the end of her shift she can always be seen with a big smile on her face at all the Hemophilia Society events.  She's even gone as far as to make special quilts for patients when they aren't well.

After meeting Morna and seeing how great she treated me in the hospital my father and fiancee felt a lot better about me being at the clinic.

Morna has always encouraged me to do my best and to work hard. She is the one who got me involved in the Hemophilia society in the first place and now it is five years later and she still inspiring me to try and help those dealing with bleeding disorders.

As I said before Morna is always pleasant and happy but I have never seen her as happy as when she is with her granddaughter and I am so happy that she will be spending lots of time with her. Anyone who gets to be around Morna is certainly blessed.

I know I feel that way whenever I am around her.

I will never forget the kindness she has sown me as long as I live and I pray that all Hemophiliacs have a chance to have someone like her as their nurse.

 

Treatment For All

So, I read a very sad story this morning on a friend of mines facebook page. A young man, suffering from Hemophilia passed away on September 20.
He died because he could not afford treatment for a bleed. He died because of money. The thought of this breaks my heart.
If it had been a freak accident or something it would still be very sad but the fact that it was over money is disturbing.
This young Hemophiliac was studying to be a doctor because he wanted to make life better for others.
I've had severe bleeds in my life and the pain was unbearable. The pain he must of went through leading up to his death must of been one hundred times worse than anything I've had to go through.
He must of suffered a long slow and agonizing death. Treatment for Hemophilia is very expensive. Factor concentrates are very affective but can cost up to 10,000 for a single bleed.
I know that we are working on Treatment for All but when you read stories like this, it's obviously not fast enough.

Please read the rest of this story at http://www.mid-day.com/news/2012/oct/231012-mumbai-HC-order-comes-a-month-late-for-student-with-haemophilia.htm

Wedding Woes

So, I am suppose to be just getting back from a wonderful trip to Newfoundland. But alas, I am just coming off bed rest. The day we were suppose to leave I ended up being in so much pain I could hardly walk. Zane left for his trip and Monday I went to the hospital for a blood transfusion followed by 4 days of bed rest.
It turns out I had a ruptured ovarian cyst and that was the cause of all the pain.
I was really disappointed and really sad. Being home alone was a bit depressing but I was blessed enough to have a few friends and family come and visit and that made it bearable.
Zane had a wonderful trip to Newfoundland. He was there for his friends and said the wedding went off perfectly.
This is not the first time I've had to cancel a trip and I'm sure it will not be the last. It's actually not even the first time I had to miss a wedding.
In the end, the main thing is everyone had a great time at the wedding and I am on the road to recovery.