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. 

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