The 12 blood days of Christmas

So, its been well over 12 days that Ive been having nose bleeds. They range from once to three times a day and from light bleeding to very heavy.

In an effort to stop the bleeding ive tried Cyclokapron, a humidifier and coconut oil in my nose but none of this has worked. 

I went to see my family doctor and she suggested cauterizing it but I'm really not convinced that taking a hot tool to my nose is gonna help.

I thinking the best bet will be four units of fresh frozen plasma.

I am going to my Hemophilia Clinic tomorrow for a check up so I will see what they have to say. 

I've included this awesome illustration by my daring friend, Silvana Moran to highlight how i'm feeling. 

Please visit her at behance.net/radish

Nose bleeds are awesome

So, ever since I got back from Newfoundland my nose has been bleeding on and off. Nothing serious, just a little trickle here and there. However, last night I had a full on nose bleed it woke me up out of bed and I had tissues to my nose for about an hour. I haven't really had a bad nose bleed since I was about 10 years old. Ahh nothing like the taste of blood in the back of your throat to bring back childhood memories. Anyways, Transexamic Acid or Cyclokapron is a wonderful drug, you take three pills, three times daily and it helps to stop the bleeding. (it doesn't actually stop bleeding it helps to stabilize a clot once it is formed.)

This drug works great for me it sometimes gives me a stomach ache so I sometimes cut down the dose especially if the bleeding isn't heavy. 

It is a wonderful drug but very expensive almost 1.50 per pill and when you are taking 9 pills a day for one or two weeks it can be very pricey. I am very blessed and I have a health care plan so I don't have to pay anything but there are thousands of Hemophiliacs who can't afford this potentially life saving drug. That's why every Christmas I urge everyone to donate to SAVE ONE LIFE. This organization helps Hemophiliacs who can't afford factor or blood transfusions. Hemophiliacs who do not receive adequate treatment can have life long problems or even bleed to death so please consider sponsoring a child or donating at http://saveonelife.net/.

On another note, if I have to be bleeding from somewhere I would definitely choose a nosebleed because you can easily see how much blood you are loosing and they aren't painful.

So I really can't complain. I'm gonna watch a Christmas movie and wash my Cyclokapron down with some cranberry cider!

Here is the deepest secret nobody knows

So, about a year ago now my Momma was diagnosed with Parkinsons disease.

It is a very frustrating, scary disease. 

I feel like my mother is slowly slipping away from me and there is nothing I can do about it.

I just got home from a two week visit with my Momma and it was so hard seeing her in pain and not doing all the things she would normally do.

My mom and I have faced a lot of hard things together, my bleeding disorder, my step father Charlie passing away and now her illness.

I think everyone can agree that moms cant be sick! They are the family rock, they are always there for everyone else and now that the tables are turned I feel helpless and sad. 

I want my momma to be happy and healthy and live to be 507 years old!

and maybe she will. 

Until our next visit together I am praying for her and educating myself as much as I can about Parkinsons disease.

Happy Thanksgiving!

So, today is Thanksgiving here in Canada and I have to say there are many many things I am thankful for.

First of all I am so thankful to god that I am healthy this weekend. I am also thankful for my darling husband Zane. He is so helpful and supportive I don't know what I would do without him. Last but not least I am thankful for our awesome friends and family. We spent the weekend with are friends and had a great time visiting with them. We also have an amazing family that we love very much.

Sometimes when I am sick it doesn't feel like it but I know we are very blessed. 

I hope everyone is having a great long weekend and that they are happy and healthy.

I've attached a picture of Zane and I and our two dogs Lily and Jade. Hopefully next year we will add to our family but that's a post for another time!

Priorities

So, I've had a lot of healthy concerns over the summer including, mysteriously dropping hemoglobin, a wrist bleed ad pneumonia twice! Now that the fall is here I am catching up on a lot of appointments. 

Last week I went to visit my dentist and my wisdom teeth are of course a concerns but my dentist seems to think that as long as I keep my teeth really clean and healthy the wisdom teeth will eventually grow in and now cause too much trouble.  I am very happy to hear this because dental surgery sounds like a nightmare to me. I also had the joy of going for a pap test. It's a test that I really really hate but it is so important to have done yearly. While I was at this clinic my doctor recommended I get the HPV vaccine, Gardasil  I always thought this vaccine was only for those under the age of 26 but it has been approved for women up to 45 years of age. 

This vaccine helps prevent against almost all HPV virus, which can lead to cancer. 

I am not an expert in this my any means but I've decided to go ahead and get the vaccine. It comes in three doses similar to the twinrix vaccine. 

Its definitely something worth talking to your doctors about. 

For more information please check out hpvinfo.ca.

University of Calgary Presentation

So, on Friday I have the opportunity to speak to the first year medical students at the University of Calgary. I have done this in the past and I must say I absolutely love it. I love talking about myself and I love talking about Hemophilia. I am also very happy that I can turn all the terrible medical experienes I have had into something useful!
The format is I speak for 15 minutes and then the students ask me questions for 45 minutes. I love the questions they ask its always interesting and fun.
Ive attached a picture of myself and Dr. Goodyear.
I've also attached the notes I used for my presentation.

Thank you so much for having me here today I really appreciate  the opportunity to talk to you.

My name is Ryanne McIsaac. I am a severe factor 5 hemophiliac with less than 1%.

I was born to a healthy family in a small town in Newfoundland. 

I was diagnosed at 7 months old after a bump on my head turned into  a large hematoma and 9 months in the hospital.

It was very difficult to diagnosed because My parents are healthy and I have two healthy older sisters. 

After being diagnosed I was often treated for ankle bleeds, nose bleeds and every time I lost a tooth.

For the first 30 years of my life I was treated with Fresh Frozen plasma. 

For small bleed I receive 4 units for larger bleeds I have received up to 50 units. 

I am currently treated with Octaplasma when it is available.  Octaplasma is a detergent treated plasma and is suppose to lessen the risk of blood born pathogens and reactions.

Throughout my life i have estimated that Ive had more than 2,000 units of blood and plasma and have spent more than 5 years in the hospital.

Small bleeds have included, wrist and elbows they are easy to treat with typically 4 units and don't require too much recovery time. 

The largest bleed I have had so far was when I was 12 years old, I developed an ovarian cyst that ruptured and bled into my abdomen, I was in extreme pain and I was air lifted to the children s hospital where I spent a whole year and received more than 150 units of blood. 

Recently my most medically interesting episode started in February I started to become very tired and short of breath. After visiting my family doctor it showed that my hemoglobin had dropped to around 100. 

I booked in with the Hemophilia clinic and we found that my hemoglobin had dropped again.

I had no signs or syptoms of a bleed. 

I received 4 units of red blood cells and follow up blood work revealed it had dropped again. 

I continued to be tired and short of breath. by the time I went into Emergency my hemoglobin was 55.

we tried to look for a bleed but after a CT scan a Colonoscopy and endoscopy and bronoscopy all we could find was that my lymph nodes were very swollen. luckily the biopsy came back negative but I was diagnosed with Sarcoidosis.

We never did find a definite cause but we suspect it was a bowel bleed.

The sarcoidosis diagnosis really bothered me because I started to feel like, well am I just gonna keep getting worse and worse. And Sarcoidosis is very vague. Right now my symptoms are sweating and fatigue, but again its a very confusing condition.

I really feel its important for me to advocate for myself as a patient and to know as much abut my illness as I can however I will say this is something that I find difficult. 

As a child you are taught that you must always treat doctors with respect and that they are always right and you learn that you are sick and they make you all better. So you grow to have this relationship with your doctor and its sometimes hard to disagree with them but I am learning each time I have an episode that there are ways to advocate for yourself the right way.

The other obstacle comes in when you factor in, pain, lack of sleep and pain meds. Its sometimes hard to not become frustrated and dismayed when a doctor says something you dont agree with.

I think the absolute best thing you can do as a physician is to have a little bit of compassion for the patient, and listen to the patient, I know you are taught that you are the expert ad most times you are, but have found that when it comes to rare conditions sometimes honestly the patient is the expert.

The hardest part about having Hemophilia in my opinion is the way it affects the people in my life. 

I had to miss my moms 65th birthday, my sisters wedding in las vegas and lots of birthday parties and events. 

I also hate the stress it puts on my husband, when I get a bleed I normal sneak out of bed and go on the couch and the look on his face when he finds me in pain breaks my heart. Overall it puts a lot of stress on my family and I just hate it, I wish I could just have hemophilia and not have to make the people around me suffer. 

Thankfully I have a wonderful support system in my life, my husband is very supportive, he has learned all about my condition over the years and is really a great advocate for me. 

I also have a large circle of family and friends that have helped me get threw the ups ad downs of hemophiliacs

Another thing I feel is important when coping with a disease is to meet other people who have been threw what you have been threw so I decided to volunteer with the Canadian Hemophilia Society, over the past 8 years I have been Co president of the national youth committee, President of the Southern Alberta Chapter of the Canadian Hemophilia Society  and a member of the patient advisory committee. I also have a blog called Hemophilia is for girls dedicated to raisin awareness for womans and bleeding disorders. 

up in smoke

So, there are some fires in the us and the smoke has traveled to Calgary turning the city into one big giant campfire.

Because of my Sarcoidosis I am in so much pain, my throat is sore, my chest is sore, I can't stop coughing and I can't sleep. 

This whole sarcoidosis thing is new to me and I have to say I hate it. I don't know how to treat it and I absolutely hate coughing all the time, its loud and annoying and painful.

Anyways my darling husband brought me home a diffuser and I have to say its really helping. Ive also been using a humidifier, cough drops and lots of water.

This new diagnosis does stress me out i must say, its so vague and the symptoms can become way worse or completely go away.

Don't get me wrong, I would much prefer sarcoidosis to lymphoma, (the mimic pretty much the same symptoms.)

But at the same time I hate sweating all the time and being short of breath.

Hopefully this will be the end of chronic illnesses for me. 

In the meantime I will try and look at the bright side, I have a wonderful husband to keep me company while I am stuck in the house hiding away from the smoke.