Sunday, April 26, 2015

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 

Saturday, April 25, 2015

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.

Sunday, April 5, 2015

Happy Easter

So, this is gonna be quick because I don't have the energy to do too much these days.
We discovered that I had low iron back on March 6th. So last week I had two units of red blood cells so we were very excited to see my levels go up but sadly they went down! I don't know whats going on but I get more and more tired and more and more frustrated each day.
To top it all off all of my friends and husband are in Mexico! I am so happy zane gets to go and I pray my friends have a wonderful wedding but I just wish I could go to!
I'm having a very lonely and lazy Easter.
My hope is that tomorrow they will admit me and pump me up.
I'll keep you posted!

Wednesday, March 18, 2015

Secrets and Lies

So, Secrets and Lies is a TV show on ABC. It is the most perfectly named TV show since a recent episode has a character describe Hemophilia as "A nasty bi product of incest."
That is a complete lie.
When I first heard about this I was a little mad, I thought this isn't true, why would they say that and is hurting an entire community of people really crucial to the plot development of this show? 
Anyways, after a few days I tried to forget about it because as I've mentioned before I have low iron at the moment and I am feeling completely exhausted. 
But this whole thing brings up some very painful memories for me.
When I was a kid I was watching Degrassi Junior High with my older sister. I was maybe 8 years old and one of the characters was told he could possibly have AIDS. He said something along the lines of "I can't have AIDS only gay people and Hemophiliacs have that." Now looking back that was the first time I have ever heard the word Hemophilia on TV and it was mostly likely the first time I heard of AIDS and even though I didn't know what it was I knew it was bad by the way he was acting.
Isn't that a terrible thing for a child to see on TV? Isn't that a terrible thing for other people to see and maybe assume that about somebody?
That's the problem I have about this comment on Secrets and Lies, I don't need an apology from ABC I am old enough now and I have been to many conferences and I know how Hemophilia is passed down genetically.
But what I do need is for any young adults out there who have seen this show or heard of this to know that just because a person has Hemophilia doesn't mean their parents were brother and sister as it states on the show. That is just rude, uneducated and not true.
March is Hemophilia awareness month and this is a terrible reminder that we obviously as a community still have a lot of educating to do!

Tuesday, March 17, 2015

Coming around

So, I finally found out why I have been feeling so terribly lately.
My Hemoglobin, albumin and ferritin levels are low. Low Iron to put it simply.
The thing about low iron is that it helps carry your oxygen so thats why I've been short of breath and completely exhausted lately.
I'm so happy to finally know whats going on. It was driving me crazy.
I'm really glad its an easy fix but it does take a while for your iron to build up so I will be taking Iron pills for the next 90 days.
Iron pills aren't terrible but they are pretty gross, they hurt your stomach and make me nauseous but its much better than being exhausted from just walking to the top of the staires!
Well thats it for me I would write more but I am too tired!

Sunday, March 8, 2015

What the heck is wrong with me

So, here are my symptoms, I throw up at the drop of at a hat, I am tired all of the time and I am out of breath just from walking up the staires.

I've gone to my family doctor about it and I've gone to the emergency room about it. I've had an EKG, Chest X ray, IV fluids, Ultrasound, blood work and urinalysis and we haven't been able to find anything yet.

Anyone have anything like this? we've tested everything I can think of and I'm all out of ideas.

On a side note I've finished Birthday Week. It was absolutely wonderful! I am so lucky to have Zane he always makes sure I have fun no matter whats going on.

Thursday, March 5, 2015

The remedy is worse than the disease!

So, I am currently wearing a 24 hour blood pressure monitor and it is absolutely terrible. That sounds dramatic but the darn thing goes off every 3o minutes and its noisy and it hurts and my arm is covered in little red dots (petechiae).

Here is a fun fact for you, an older hemotologist once told me that back in the day they would diagnose the severity of Hemophilia they would measure the amount of petechiae or little red dots left on their arm after a blood pressure reading. If the amount was bigger than a quarter then the person was considered severe. How's that for old school?

Anyways, I'm trying my best with this monitor but I can guarantee if it wakes me up in the night I will be be taking it off. 
I wish there was a gentler way to diagnose things. I'm at the point now where even blood work leaves bruises and veins are hard to find and its just annoying. I am praying for a factor 5 concentrate and an easier way to diagnose things. 

What is your most hated diagnostic test. Mine is anything involving barium and needles.