Tuesday, December 30, 2014

Dealing with Evans

I've been diagnosis with Evans since I was 4/5 years old, it was also the time where I was also diagnosis with an Primary Immune Deficiency, then categorized as Common Variable Immune Deficiency. I wish I could show you my powerpoint that I put together for Plasma centers that I visited because that says it all and then I tell them some of my life experiences.

Now while I spent my life pretty normal as a kid, you know going to school, making friends, playing sports (kind of). There's always a few things that prevented me from doing some activities just because my parents didn't want to risk any injuries to myself while playing certain sports.

But again that didn't really slow me down, but there were some challenges there always had to be some challenges.

As I tell every workers at the Plasma centers that my dad always had a theory to why I have Evans, CVID, Severe Hemolytic Anemia.on top of other medical things was due to the vaccinations that I reiveced when I was about one or two years old. It was actually that particular lot number that a few kids actaully had gotten a effect from it because of the level of mercury that was present in that vaccinations also my dad also think I could have been a little under developed just because I was sick on and off after I was born with the common cold, cough, and other little things that little babies might get.

My platelets ran normal as far I remember until I started on blood thinner because I had a port-a-cath put into for better access for my Infusion.

I did do a trial Rituxamib treatment that was SUPPOSED to help improve my numbers but it never did, and it worn me down and decrease my energy. So we stop the trial and we never consider it again, although my platelets over the years have remains between 70-130.

I will write another post about my recent experiences with my platelets and recent updates on this whip las of platelets.

~ Kat 

Friday, December 26, 2014

Merry Christmas Zebras

I know this is a little late, but I want to wish you all a Merry Christmas

I hope that many of you are trying to stay healthy for the winter, my winter seems like Novemeber we had hardly any snow on the ground. I should mention I live in the Midwest and we're known for our snow. So this year is very weird.

I did get a Zebra blanket for Christmas but I'm under 48 hours from my birthday and I have no idea what I'm getting, I often don't know what I'll get. One year I got a really nice Canon camera and I was really surprise I know I showed high interest in a camera because I love photography. I hope that one year I'll get a bigger lens.

So these past few months have been the hardest and the most challenge time of my life as a student, I thought that I knew what I wanted to do but now I'm changing my direction. I'll be starting Health Information Technology in August 2015 and this spring I'll be retaking my advance Anatomy Class and will be looking for a job in the meantimes.

Also I haven't figure out what my 2015 New Year's Resolution, but I'll be working on that as well celebrating my 24th birthday on Sunday. My great grand Mother will be 97 on Monday! That means she seen 90 decades in her lifetime.

Tuesday, November 4, 2014

Community Groups

Joining a Community Group
So in the past few weeks I've come across two really amazing FaceBook Group pages that I can share my experiences about dealing with my Evans Syndrome as well my Common Variable Immune Deficiency.

While I knew about the CVID group page I wasn't all for group pages long ago, but after joining some other different types of groups for my other interests. I found just how much fun joining a group can be, now since I'm normally shy when it comes to new people and kind of afraid to spill all my knowledge and experiences with my own conditions and scare the other person away.

But the Evan Syndrome Group page is really something, I have only two other friends that has Evans and we all kind of dealt with similar problems or have completely different events that affects us and also reminds us of that time.

It came a pure accident that I found the Evan's Syndrome page I'd quickly joined because I was curious . . . curious like a cat. From being a part of this group I've realizes a few things . . . BIG THINGS.

One, somehow it was not in the cards for me to have meet my friend Brittany, who I've meet at an IDF conference in 2011. We both had the same exact conditions and yet somehow we never came across each until 2011 and not in 2009 where the previous IDF conference was.

When people on the Evans's group had found an old website that describes Evans, it turns out to be that Brittany's mom and another parent that created that website to help all of us. I even asked my dad and showed him the website and he recogized it without questions. This was the exact same website he found way back when I was younger and he reach out to Katie Addington who sadly had passed away and her mom about Katie's Evans.

I guess it's sort of my fault that I didn't keep in touch with her, I guess I wasn't the type to write letters or something. But Brittany and Katie both met one another and it struck me that maybe if I had stayed in touch somehow, I probably would have met Brittany way longer before 2011. But I can't change that, but it still kind of gives me chills thinking about it.

Two, after having an discussion with my dad, I pointed out that some of these people's story are almost really terrify or really horrible. I said that I am lucky to not have had such a severity to what some people might have or has, but I wonder if my Evans stay at bay because I started IVIG when I was 8/9 years old. But there are so many factors to why not a whole lot of bad things related to Evans never occurred. Or maybe they did but I just don't remember . . .

So with my attempt to use this blog to share not only my CVID but now also my Evans because they both tie in with one another and I really can't wait to share some things that I've gone through and hope that people can gain from it. Brittany is also a part of this blog but we're still trying to work thing out on how to get her an admin on this blog and plus she's a new mom and I know her little boy demands lots of attention.

Community Groups have it's benefits for each and every member, and I hope that our blog can benefit to the readers. Don't be afraid to ask questions, we may not have it all and maybe someone else does or no one, it will not hurt to ask.  

Monday, October 20, 2014

Double Trouble

So a lot of things are going on for Brittany and Kat,

Got a Live Vaccine shot
Kidneys still leaking protein
Low IGG levels

Major Sinus Problem
Mal absorption
Resistant to antibodies 

And whatever else comes along our way . . .

As many of you know from my post on the CVID group page, I was mistakenly given the Live Vaccine Flu shot A.K.A mist. Two days later on  Friday I had a horrible running nose but thankfully Saturday and Sunday the running lessen up dramatically probably because I got my IVIG on Friday. I'm going to do what I can to make sure I don't get the flu this winter because I won't be as protected due to the flu mist.

Another news is that I'm still leaking Protein through urine and my immunologist did some lab works and thinks that we should pursude this a little bit harder rather than let it slide by because the leaking through my kidneys means that I'm not holding all my my IVIG that I get every three weeks which could be part of the reason why my IGG levels are low even after doing every three weeks and is on 80 grams.


These last few months has been my greatest and also my worst time, I have a beautiful 4 month old baby boy completely healthy and now I'm sick.

I had to have a lung biposy to determine why I wasn't oxygenated blood through my lungs and heart but after that they medically clear me as having healthy lungs but now thinks the problems are in my sinus. So there's a planned surgery to get up in my sinuses.

But now that surgery been moved up because I'm now resistant to antibiotics and they don't want to prolong the wait any longer. Hopefully they will find out what is causing all of this problem. The other main problem is being Mal-absorption, meaning I'm not absorption anything including the sub-q. Which is not good, let's hope that everything will be resolve quickly that way I'm there for every milestone of my baby boy's life.


So let's hope that the answers can be found quickly for both myself and for Brittany. We both have reasons to not get sick whether it taking care of a baby or going to school.

Friday, September 26, 2014

Infusion Dream


So here's an interesting thing that happens to me . . . I had an infusion dream.
How many of you have infusion dreams?

Well for me this was the first, my very first one in 14/15 years,

This is how the dream goes, I'm in one of the room that I'm placed in with a bed on the second floor of short stay at Scared Heart where I've been doing my infusion since the beginning of time. The setting was just as real as if it was an actual reality infusion day.

However there were a few things that I do often come across every now and then, NEW Nurses. Now what i mean by New Nurses are those that have never access me before and I'm pretty apprehensive on who access me because it the scenario where I want it to go in the first time.

Yes we all hate repeated pokes because the nurse can't get it, but I told this new nurse how to do it and she got it in like a pro. Then my dream fast-forward so I have no idea what went down in the middle of the dream except the ending.

Typically on an infusion day, I'm off being a busy cat doing school work, catching up on social media and such so I rather look at the clock because the previous infusions the clock in the room was not working! 
And yes I do have a phone but this is a time where I don't be on my phone because I got my laptop in front of me.

Now you're thinking, YOUR laptop has a Clock!!!! Well still I don't pay attention to the little numbers in the far right corner of my screen.

So what happens in the dream? My infusion ended at 5:45PM!!! In late PM!!!! My infusion averages at 4 and a half hours, so there's a routine that goes into place.

The rate of the pump increase 50 every 20 mins, my max is 300. The first bottle takes the longest because of the rate changes. Well so when I see the clock inside my dream and it saying 5:45PM I had to figure out WHY did it takes that long?

Well lo and behold the rate was only set at 50 and the nurse never increase it! SO yeah no wondering why it took so long to finish!

Now I'm not sure why I dreamed this but maybe it the stress that I'm under from school and having to really push myself to go above and beyond to understand my classes. But this was just so weird to me. 

Thursday, September 11, 2014

9/11: 13 years later

September 9th, 2001 . . .

For many it was a day where our states was being attacked, we utter silence and in disbelief . But for me it was a different story, in a different view and setting.

I had been in the hospital prior to this date, fight cellulitis in my left eye it was days of pain and minimal vision although I could never really see out of my left eye due to a cornea scarring that I gotten from a virus as a young child.

I had been missing school because of it, the doctors had me on IV antibiotics, since my immune system couldn't fight the cellulitis anyways on its own. I was in and out of sleep because I was in pain so sleep, Tylenol, and cold compression was about the only thing that ward off the pain for just a little bit.

Both my parents had to work because they had taken days off prior because the infection was so bad and it was tough being 8 years old and not really understanding why I kept getting infections all the time. But thankfully the staff on the 6th floor treated me like their own daughter, they told my parents that they would watch over me while they work for half a day, even my grandparents help a little as well.

But I remember that day on 9/11 that my parents or well my dad wasn't suppose to be at the hospital until noon or so and he was there early than expected. I didn't think anything of it because you know I'm 8 so I was just comfortable. Then he turned on the news . . . Go to 1:47

I still didn't know what was going on because one, I'm a kid I don't watch the news but then I saw after the plane had hit the second tower that something bad had happen. Although I couldn't understand what had happen, my dad sat in one of the chairs in the room and he was just glued to the screen although he try to divert his attention to me while watching the news. then we both saw one of the buildings collapsed. that is at 1:23:15

Now 13 years later . . . 

I still remember this day because two major events had happen in my life, our states was under attack . . . many parents and family were wondering if we were all going to be safe. My parents had probably thought that too but they were praying that I would get better from the infection in my eye and start going back to school.

I would ask my friends, what did you remember on 9/11 . . .  theirs answer?
We just sat around in the room while the teachers were focused on the TV in the classroom.

For me my answer will always be, I was in the hospital fighting a horrid infection in my eye but was semi-aware that something else had happen in the world on that day.

I've watch a couple movies that revolves around 9/11 events as well documentaries, and finally began to understand what I couldn't at 8 years old. Our world was attack, our planes were hijacked and many lives were lost.

When I was in Baltimore in the summer of 2013, my mom and I went to the World Trade Center museum that was by the piers and it was a dedicated to all those that risks their life to help hundreds that were hundred of miles away and never returned home. They even had parts of WTC buildings.

I will always remember this day just as everyone else, it's just that mine was a different point of view.