Monday, December 28, 2015

25th Birthday Part Two

,High school my infusions became to take less time since we upped the rate but we also upped the dosage of my bottles. As a teenager, I was doing the normal teenager things or what I can define normal.

During my senior year of High school toward the end of April, I had my first ever severe reaction to my IVIG but we also had to put into account of the illness I was having at that same time. My family and I were sick during that week and my dad had wanted me to go to school since it would only be a half day for me because it was my infusion but I called home after 1st period because I just physically could not go from classes to classes and even my first period class teacher was worried and had said to me that I didn't look well thus telling me that I should go home even after I had already made that decision myself.
So I went home and I just crash on the couch sleeping until it was time to go to the hospital, as the first bottle was starting to infused I sometimes gets chills but I was getting more chilled than normal and started turning blue and hyperventilation because I was cold. I can't remember how many warm blankets we had around me but we ended stopping my whole IVIG right away until I was feeling more normal and then we simply just took it slow with the infusing.
I still had my infusion on that day but I didn't get home until after midnight because we waited two hours before stopping the infusing and even my dad had called my mom saying that she should come up to the hospital because I also had my aunt and grandma there too which was scary for them. My dad figure that he would take them back to the house while I remain at the hospital finishing up my infusion and we also had a thunderstorm that night too. 

Chills are common side effects with any IVIG products but I think because I was dealing with some sort of bug that the rate of infusing kind of didn't work well. Plus after that my doctor found out that I was not given proper dosage of the meds that I get to prevent reactions. Dosages are change as a person get older and one that is growing so we think with the improper dosage, the bug, and the chill side effect just caused me to have a severe reaction than my normal chills/stiff muscles.

From that point on I still got chills every now and then, but then we switch me from carmine to privign and I have not had a reaction to privign. 

Later that year in 09 I had my gallbladder taken out, yep gallbladder taken out at age 18 years old but gallstones and gallbladder are common among us. What's funny is that my mom had her gallbladder taken out two years earlier and I had symptoms of gallstone in the previous years but didn't know it until that week and the previous week before I had my gallbladder taken out. I would eat while at college but then go home about an hour later because I felt like I was going to throw up (which I did most of the time). That experience I had a little melt down because I wasn't expecting surgery but I had to have it done before it became worst, I like being prepared for surgery than Ito have emergency surgery. 

I was also dianosged with MODY maturity onset of the young diabetes during this time and even now I'm still maintains my A1C fairly well. 

Since that time I've graduated with my management associate degree in 2011, went through two program changes in 2012 and in 2014. In 2013 I had an GI infection and a very severe endometriosis event. 

I had bleeding longer than two weeks and at one point it did stop until I got sick and something trigger my body to start doing what it was doing, but we soon learn that my Coumadin may have had an effect to my uterus lining getting thick because my dosages were being played with and my GI infection maybe/probably came from eating something at subway. To this day I do not eat at subway. 

In the mist of that event I had in 2013, I was taken off from my immune suppressant and was never put back on it, then it lead to my unexplained kidney problem that didn't make sense until I did the research and the belief my doctors had that this problem was immune related but not the nephrologist. I stated my case about getting me back on the immune suppressant but sadly the immune suppressant I've been on for nearly half of my life time would no longer work and it lead to two ER trips for anti nausea mess and fluids in one month (this July 2015) 

But now, I'm gong to be seeing an second opinion about my kidney and hopefully this doctor can explain to my immunologist about why thus is happening and what my kidney is doing that not supposes to be dong and hopefully treat it. I think we're treating it now with the new immune suppressant but if there's another thing I have to take then I can add that pieced to the puzzle. Thus is all so I don't have to undergo an kidney biopsy because the risks are too great for me.  

25 years old with a world of vast medical knowledge and experiences that I can share with other and tell my story. My story will never end. 

My infusions taken about 4.5 hours, I still do it at the hospital and I'm still using the same port that was placed in 2000, that's 15 years! And I've been doing IVIG since 98/99. 16/17 years doing this routine, if I had to change my routine I think the transition might be hard depending on what the transition is and how it goes. 

25th Birthday Part One

I figure that since I'll be 25 on the 28th of December, I should do a few highlight of my past to the point of where I am in life right now.

You can say after reading some of my old records that my infant years were filled with sniffles, cold, ear infections, eye infections and herpes sores.

I saw and met my immunologist when I was roughly around 4 almost 5 years old and it's funny that when I talk to my mom about the beginning she will always say that my dad considered every doctors as quacks. He was so against doctors and still is to this day, but even with persistent from my family doctor and my immunologist it was felt best to keep a close eye on me. All because dad wouldn't budge on doing anything because he believed that my MMR vaccine was what had cause me to develop what I have now. But also because I was his little girl.

My school age years I've fought many pneumonia during the winter seasons, I'd probably fought 3 to 5 pneumonia a year and it's part of the reasons why my lungs are not as great as they should be. It got to a point where everything changed for me in 3rd grade, I got way too sick and started my first IVIG treatments.

3rd grade was a hard transition for me and it would be for anyone at that age who all of the sudden now has to start doing routine therapy and for school it was even harder. Many of the kids didn't understand why I was absent all the time and even when we all started Middle school there were still some kids that pick on me because I had a "Disease". A disease that they thought they could catch, if you ever heard about the Ryan White story the boy with AIDS you can say my experiences were similar or I understood on a emotional level on how Ryan felt.

Now what did I do as far what provided me peace and a sense of mind was Art and Bowling. Those two were something that I've use as a get away. I was selective with friends and still is to this day but now I've seen and know who to consider as my true friends.

My adolescent years everything was routine, but I starting feeling more comfortable about my conditions and accepting the fact was tough to swallow for most 8/9 years old. When did I really truly accept it? I honesty think I've accepted it when I started high school even though it been five or six years since starting. I've even invited so friends to come hang with during during my 8 hours yes! EIGHT HOURS to compete my infusions.

At this age I wasn't facing tough times like I was a few years back but you can say I had my ups and my downs. There's been days and time where we would have to push my infusion date early because my doctor was concern about my hemoglobin, there's been times where I had to do an infusion a day early because we didn't want to risk my hemoglobin to drop any lower and doing my infusion bump up my hemoglobin. 

I'd even underwent a blood transfusion because I was so low in the 4-5 range and spent my time at children's in Minnesota. I remembered partly of that event, we drove to the cities towards at night because it was urgent that we get me treated right away and when my immunologist list instructed my parents to have the doctors call him ASAP when I walked in,because we didn't want to expose me to any other type of sickness, they were kind of stunned at the fast pace we needed to go but I was quickly put my room and then we had to type my blood but the problem was giving me blood. Since I was low my antigens in my cells were bad and we needed to now type and cross match the blood. I had hardly ate the past 24 hours since I didn't have much of an appetite but as soon I got my blood transfusion I wanted food and started to get color because I was getting blood. I think I stay there for a few days and I think during that time I also discover Galxicia the game. 

In 2000 I had my port put in after the past six months getting and IV access because harder and my veins were getting bad. To This day I still have that same port :-). 

Of course I've dealt with cellulitis in my eyes both of them, I'm already partly blind in my left eye because of a cornea scar I had from the herpes virus when I was 1 &1/2 - 2 years old that attacks many people but commonly most people are able to fight it off. I didn't not, so I don't see out of my left eye hardly at all.

Then during my sphomore year, I tried Rituxan either when I was a freshmen in High School or Sophmore but unfortunate I ended the treatment because I kept getting more sick and not seeing results. I would miss school because I was too tired so for all my Evans Syndrome crew I'm glad it works for the most of you and you could say that it's sad it didn't work for me but I truly think that because I started IVIG five years prior that it may have disway any mishaps related to Evans. No it doesn't mean I'm in remission, it just means in my definition that Evan wasn't presenting its ugly head.

I will always have Evans, it's a part of me and its a part of you as well.

I'm going to go onto the second post which I'll link here. 25th Birthday Part Two

Monday, December 14, 2015


I had meant to do this post last week for Thanksgiving, it's kind of an thankfulness kind of thing. First in the month of October, my dad suddenly got sick. It was very onset and I wasn't sure what was going on, we ended up calling the ambulance because he couldn't move from the bathroom it wasn't an rushed ambulance and the hospital was five minutes from the house.  Somewhere in those five + ten minutes his status changed he was wiped out from throwing up and was nonverbal.

So what ended up happening I had to call my mom from work because dad wanted me to run an errand he usually does so I knew at the time I got to the hospital that I had to call her to come to the hospital
since I legally can't make the medical decisions.

He ended up getting blood works, CT, Chest X-ray, an heart ultrasound, I think he got an MRI but I wasn't sure. He was admitted Monday evening and the next day I had class but I wanted to stop and drop stuff off and see him needless to say I didn't want to go to class but I went and was a little late but I had a good excuse.

Later I called my mom since she only plan to work until 4 but when I called around 1:30 and my dad was getting angiogram because his cardiac enzyme was off and they wanted to find out why. They didn't find anything, but they were concern about his diabetes and his blood pressure. Thankfully my aunt came over to help out since and here's the kicker! I was having my six month check up with my immunologist and I almost didn't go like we were hours from determining if we should go or not. My dad was starting to feel better but his blood pressure was high and they were treating him and won't discharge him until it was below a certain number.

I did end up going to the cities Wednesday since my appointment was Thursday morning, I was waiting and waiting to hear if Dad was going to be discharged Wednesday evening and thankfully he was! Buddy our cat probably was clingy to him all night, Buddy didn't see his daddy leave but he knew that daddy wasn't home Monday night after we were gone. I told him but he still eyed the bedroom where dad sleeps and knew he wasn't home.

Mom and I came home Friday and my Aunt had left Thursday, I couldn't be more thankful for her to come over in such a rush and she was just in town that weekend! 24 Hours ago. He's better and we're getting his blood pressure under control and his diabetes under control.

So that was how the month of October went for me in that crazy week, so I'm thankful that he's better and he's still here. His doctor won't rule out the idea that he may have had a heart attack but his symptoms were nothing like a heart attack, he didn't have a stroke, we're just calling it severe vertigo. There will never be an definite answer.

Now for November, nothing happen HOWEVER my Port reach another milestone a BIG one. As some of you might know from sharing my story with my port. November 2000 is when I got my port put in and I haven't need another one. That marks 15 years!

Celebrating 15 Years 

Some would say WOW! Amazing! How is that possible???? 
Well I don't have an answer only theories, but however my theories are what keeping this port going! Now how long after this milestone would this port keep going, I have NO IDEA! But I'll take as many years it will give me! 

So I'm thankful for my Port, it's been my life saver for my IVIG administration.