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.

Epicure Adventures!

So, since the last time I wrote I had an arm bleed and a leg bleed. They were very painful but easy to deal with and only required 4 units of octaplasma and one day in the hospital so I can't complain.
Zane also injured his knee so he has been on crutches for the past three weeks. Needless to say, it hasn't been our best summer yet but we are making it work.

I haven't blogged in a while because honestly I need a break from thinking about my illness. This summer it really started to consume me and I am praying that I will now have a few hospital less months. I have been in the hospital every month since April which has been my longest stretch of separate bleeds to date.
Anyway, switching gears to something positive I have become an Independent Epicure Consultant, which simply means I am selling Epicure. Epicure is fast and delish spices, dips and meal kits. So far I am really enjoying it. For a long time I have been looking for something that will allow me to work and my own pace and on a schedule that works for me.
I will let you know how my progress goes!

If you would like to learn more about Epicure please visit my website at http://ryannemcisaac.myepicure.com/

Here we go again

So, I started having chest pain a few days ago and around Thursday I started being short of breathe so I gathered up all of my courage and went into the emergency room. I say courage because going to the emergency is nothing short of a torture test for example, it took them 11 tries to get an IV. 11 tries! My arms are black and blue and I am exhausted.
Eight hours later my CT scan showed that I have pneumonia so I am taking a course of antibiotics.
This isn't a big deal in the grand scheme of life but here's the thing that has been bothering me since February. My Hemophilia Clinic has been telling me to go to Emergency and anyone who has hung out in emergency knows that it is torture.
Id much rather go to a place where the doctors are experts, I see them right away and I don't have to wait around in a crazy emergency room for 8 hours.
But lately they've been telling me to just go to emerg and it is causing major stress for me and my family. After all, one of the main reasons we moved here is because of the Hemophilia clinic.
I can't tell you have frustrating it is to have a rare complicated disease and feel like you are being pushed away but literally the only people who equipped to take care of you.
I go to emergency and the doctors are rude, they look for blood clots they think I have factor 5 leiden which is the EXACT opposite. I explain and explain but its like it doesn't compute.
Anyways I am going for a meeting tomorrow with my clinic director so we will see how that goes but I honestly feel like it won't make a difference and I just have to take what I can get. I mean what can I really do to change it? And to be honest I'm already so tired I just want to have good care.

Love and hard times

So, I thought I would take a minute to write about my illnesses that have been going on for the past two months. 

It all started with me feeling tired, I thought maybe I was depressed or something but I just felt tired all the time and then eventually it go so bad that I couldn't walk to the top of the stair es without being completely out of breath. 

I went to my family doctor, I went to my hemophilia clinic, I went to emergency, I couldn't get anyone to do anything about my illness until eventually my father came to get me and took me to emergency.

My hemoglobin was 55, I had pneumonia, I had swollen lymph nodes in my chest and I was bleeding internally so needless to say I was in rough shape.

I was treated with about 6 unit of red blood cells and 10 units of Octaplasma. 

My doctors think that I had a bleed that caused my levels to drop and then when we treated it it disappeared.

Just to be sure they did every test I've ever heard of a endoscopy, bronoscopy, colonoscopy, EKG, Chest X ray, ultrasound and two CT scans. 

Everything came back normal except the CT Scan, they think I have a lung disease called sarcoidosis which I will explain if I actually get officially diagnosed with it. 

I see a lung specialist in May to find. 

Anyways, I really wanted to blog about this because in 32 years I've never had a bleed without pain so I'm still confused about how I had such a huge bleed (enough to drop my hemoglobin 5 points a day) without noticing blood anywhere and no pain.

I find this very scary to think you could be bleeding and not even know it? 

The other scary part was the biopsy. I could tell by my doctors face after my CT scan that things weren't right and thats when they said they wanted to do a biopsy because my symptoms were consistent with lymphoma. 

So overall it was a hellish week, not to mention the terrible reaction I had to propophol, the nausea from the morphine and the joy of drinking more than 8 litres of contrast dye. 

The worst part of the week was the fact that it kept me away from seeing Della but I know she understood. She was always so understanding and respectful of my illness. She never wanted me to push myself or stress about anything especially her, she wanted me to be happy and healthy.

The following are some photos of my adventure.

1. My oxygen mask thing

2. My red blood cell transfusion

3. My iron transfusion its black! who knew?

4. A moment of rest in the busy emergency room

5. Me with oxygen 

Momma D

On Monday morning I got the call I have been dreading for a year. My husband called to tell me that my darling mother in law Della passed away. I would say, she lost her battle with cancer but I don't think she lost. She fought cancer three times in her life and I think in the end she agreed to go.

I don't want to write about it but I feel like maybe if I get out how terrible I feel maybe I will feel better but, I suspect I could write a thousand pages and still feel sad about Della. 

I met her 10 years ago when Zane and I started dating and for some reason right from day 1 she treated me like I was so special and such a blessing to have around. I loved the way I felt around her because she made me feel like I could do no wrong and that I was important.
When I think about her I picture her at our wedding. She wore this beautiful white dress and she honestly looked like a little angel. She seemed so happy that day and helped us with so much even though she had major surgery just 4 months earlier. I can't imagine the strength and courage it took suffer like she did and she did it with grace and dignity and a smile on her face.
The last time we talked she called me while I was in the hospital and asked me if I need anything! If I needed anything? She was in the hospice fighting for her life and she wanted to know if I need anything? And she asked if Zane knew, cause sometimes her and I would have small secrets from Zane just so we wouldn't worry him.
I can't believe the only person in the world who loved Zane as much as me is gone.
I could never thank her enough for raising such a wonderful man.
I will say I am not sitting here wondering if Della knew how much I loved her and I am not wondering how much she loved me. Della loved with her whole heart and I know she knew that I thought the world of her.