Transition

Well for the first time in 17/18 years, I am forced to make an sudden transition.

And no it's not about Sub-Q, it's actually about where I go to do my infusion . . . In April I've gotten a letter from both my insurance and my hospital saying that they are reviewing their contract and the decision wouldn't be made until the 30th of April. However I only had one infusion in the month of April, so May was of concern because I have two.

Well after I had my first infusion of May, I get a letter from the hospital saying that my insurance and them have terminate their contract with one another. What that meant was that anytime after May that everything will be out of network.

Now in late April, I did tour another facility that was in network with my insurance (for now) and my dad and I had to reach out to them about me coming in for my first infusion in June, since I already have my appointment for my next infusion set-up at the hospital later this May and according to my Mom (who I'm under insurance with her) Human Resources said that we're covered for the month of May.

But now everything is needed in order for this other facility to be prepare for me in June, luckily I only have one infusion that month as well. It's unfair to myself and to other patients and employees even that they now have to seek out another place, seek out another doctor that is in-network.

We're working hard on making sure that the other facility has everything they need in order to take care of me during my infusion and that they have all the supplies for my infusion(s), since I'll be going there from June to the Future.

Usually I'm a very positive person but when it comes with insurance, there's too many WRONG things that they do that doesn't help me or to anyone for that matters. Even my Cousin who works for United Health, hates the system. He had more than one incident trips to the ER or Urgent Care and get Billed for so much when really he had one or two things that he needed but they billed him for many tiny things like just going to the ER/Urgent care. He even posted a youtube video about what the bill really is when you go to the hospital just to have your child.

I'm attaching the youtube video in case anyone is curious

I'm sure my Transition will go smoothly but I'm leaving a family that's been my family for 17 years, I won't see this family maybe for a year, two years or maybe forever. I'm sure I'll go through another transition again later down the road, but it's just hard.

It's hard to say goodbye.

I'm working hard to make my last day with them memorable and giving them a way to keep in touch with me because I know I've touch their lives in one way or another, I'm someone that they'll never forget.  I hope that maybe one day I can go back there, but it clearly unknown if I can or not.

Motherhood:

 

This is all opinions and my perceptive on motherhood.  I have not experienced Motherhood yet. 

Living with a condition that affects your life in a big way and you wonder how would that affect some things down the road that you want to have like Motherhood for example. 

For me I know I've always wanted children, when I first said I wanted children I never even consider all of my conditions that I have because really . . . In all honesty? I don't let that stop me, I don't let it stop me from going to college, I don't let that stop me from doing anything. 

Here's a common question: Can I pass CVID down to my children? 

In my opinion NO but genetics plays a role in what your children get, half from you and half from your spouse. When I got sick as a baby naturally my parents worried that there might have been something they didn't know which is why we saw a genetic person (this was over 20 years ago) and that didn't tell us much but again genetic wasn't as sophisticated back then as it is now.  

Now genetics are being studied on more and more, answers are being solved and better treatment are being created. Another thing to keep in mind CVID is not proven to be hereditary, if it was then that changes my whole answer about passing CVID down to your children. 

Still don't sound convince? That's okay I'm not writing this to convince you, I'm writing this so you can read one person's point of view and mine is quite large. 

So what can you do? 

The first and foremost is to try and plan your pregnancy, if you're just getting diagnosed and is "sick" you don't want to become pregnant at this time. I know there's that saying things don't always work out when you plan but for me in my mind planning helps. Planning prepares me in what would be the goals in maintaining an healthy pregnancy as well keeping myself healthy. Like if I could and was with someone committed I would try to get pregnant now because I'm in the best health that I can be in.

I plan to do genetics testing before I have kids; this won't change me wanting to have them but again to see what may or may not be passed down from myself and my spouse.  I think we would both want to know percentages even when it won't interfere the decisions of having kids.

IVIG/Sub-Q facts 

If you're one of those that don't always like having their IVIGSub-Q because of the side effects, well you will have to expect to do more when you're pregnant. Doctors wants to make sure that not only you are being care for but also the baby because the baby thrives on your system to keep it healthy.

The Pregnancy Process
I'm sure you'll be seeing an high risk OB/GYN because of your condition and would want to be monitor closely.  I would expect it to be the same for me so unless your immunologist is comfortable with you seeing an regular OB/GYN and the OB/GYN is comfortable seeing you without feeling that you're out of their experiences.

You will be doing a lot more than your average first time mom-to-be because our bodies doesn't work the way it's supposed to. 

The one thing I would suggest after having the baby is to STAY on TOP with your IGG levels and IVIGs or Sub-Q because you may not feel sick but you could secretly be sick because your follow ups fell through the cracks because you had a baby. Having a baby can do a lot to your body, so it's important that once the baby is here you are on top of your health.

2 Cents Remarks
 

Honestly don't let anyone's else opinion stop you from having kids, because the way I think is this: I don't care about anyone's opinion and if someone does say something, I would say that's your opinion but your opinion is wrong and jaded.

Keep in mind you will probably get the 2 cents remarks from a lot of people, even your own friends and family. But just remember that they aren't the one living with your conditions and even if your closest closest family/friends say something just try to forgive them for that momentary relapse.

I know there's a lot that I wish I could offer as advice/suggestions but again we all grow wiser as we go through certain experiences. But you can guarantee that when it comes time for me to have that wonderful experience I will be very open with it.

Keep in mind for that webinar
"Family Planning and PI" on
August 24, 2016 | 8:00pm ET 

You might gain some insight from the speakers and other people that tunes in.

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

Thankfulness

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!

 

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.  

A Little Trip

Well for the first time in many many years, I ended up in the ER . . . TWICE.

Now you're probably wondering WHY? Well hopefully this long story can be short and simple. I was trying to start back on a Immune Suppressant medication that I've been taking for 15 years until 2013 came along. When my 2013 event happen, I was taken off it and was never put back on.

Fast-forward to why I was getting myself back on it.

I don't talk much about the kidneys problem because the "only" way to treat it is by doing a kidney biopsy to figure out the problem then go on from there treating it. BUT I did my own little research and found that immune suppressant could help revolves this issue I'm having with the kidneys. I spoke with my immunologist about my research and findings, and a few phones call with him. Even he couldn't figure out WHY he started looking at my kidneys for problems and that question is still left unanswered.

Anyways we agree to put me back on the medication thinking that it was going to be smooth sailing, however the first day of starting it . . . I got sick. Plus to top it off it was very humid and hot the day I got sick so after a few hours my doctor told me to go to the ER for some anti-nausea med and fluids. I was at the ER for maybe a couple hours?

So after coming back home and resting, my parents and I agree not to try it again until AFTER I came back from my trip. I even called my immunologist that Monday to notify him of what had went down over the weekend (the message rely was slower than it should have took). SO I went on my trip and I came back home, we already knew what the plan was after speaking with my immunoloigst.

He did say that some adult cannot tolerate this particular immune suppressant and while we were figuring out if that was case. We tried baby steps (SORT OF) so I started with a small dose this previous Monday July 27th and I even ate food with it. SADLY a few hours later I get sick again and we knew right away what was the problem.

I was in the ER within 20 minutes after getting sick but while the ER staffs/Nurses were kind, the process of getting me the anti-nausea med was much longer. They did lab works which turns out had been sitting waiting to be taken to the lab after the doctor orders a full CBC (complete blood count). My white cells were very elevated as well my hemoglobin but that was due to being sick and dehydrated. So they had to figure out why my white cells were the way they were, BUT they had to call my Primary doctor asking "What do we do?" like they couldn't figure it out themselves?

He wanted a blood culture done to make sure there wasn't anything going on in my blood that could be causing me to have an elevated white blood count. I sleep partially but I was also cold from the fluids so I was completely wrapped in a cocoon trying to stay warm. I had at least 10 warm blankets on me.

We did an chest x-ray, CT scan and urine sample to rule out everything, my primary doctor knew that it was the immune suppressant that made me sick in the first place but the way my white blood cells were elevated suggested something else was going on and it turns out that I had a UTI going on with NO Symptoms!

So after hours and hours at the ER on Monday and being able to hold down water ever after I threw up the chalk stuff they made me drink for the CT scan, I was sent home. YAY! I was given antibodics for the UTI and my parents and I believe that we should not try this immune suppressant again even when my primary doctor suggested even smaller baby steps.

This was an Trial and Error and it was a fail BOTH TIMES. But my immunologist still need some data to determine if I really need the immune suppressant or not. But for me that kind of throws out what I was trying to do for my kidneys, but after my IGG values from May were well beyond of Awesome maybe the blood pressure medication I take is working.

So for the first time in many many years, I ended up in the ER twice in the same month. I do have my next infusion coming up so that mean we do blood work, so I'm hoping that my white blood cells are back to normal when they draw it but as far everything else? I'm not sure. My platelets were in the high 100s when I was sick and normally for my platelets they like to be around 80-90s. Hemoglobin been doing pretty good but who knows how they will be after enduring this reaction from the drug.

Follow UP: My labs values were normal! Platelets were 86,000, Hemoglobin was 13.0 and WBC was 4.00 and RBC was 4.09. Everything was normal.

Infusion Day

This week was the IDF National conference, my first year of not going after attending the last 4 years. It's a strange feeling because I'm not seeing old faces however I've notice that this year I was missing a lot of old faces because I wasn't attending an book con that I fell I love with last year. But I will see some at a new book convention that is taken place in St.Louis in July.

It's been 8 years since I've been to St.Louis so this upcoming trip I have in July for that new book convention that I've never been to will be bittersweet seeing the arch once again. 

So one of the main reason why I didn't go to IDF this year was because it was my infusion week, I still do IVIG at my local hospital. So there was no way to move things around, but I did do an infusion selfie and I went on posting it on the common variable group page as well two other groups that are readers/writers. 

It's no secret that my life is unique, being a zebra is unique. So when I shared n my two writer/readers group page they were moved. They were moved that I share something so personal, the reality is that being a zebra isn't personal it's my life. It's a side of me that I show whenever the opportunity occurs, I get told this all the time I have a bubbly, sassy and fun personality. So that what's makes me personable, I may not wear zebra ears or have many items of clothing that represent zebra but it's no secret.

People would call me brave

The Definition of the word B-R-A-V-E;  ready to face and endure danger or pain; showing courage.


maybe the word Brave isn't the right term to describe myself as a Zebra, because I've dealt with this all my life, I didn't have a choice in this lifestyle. This is my lifestyle and I've accepted this lifestyle a long time ago.

I was told as a kid when this all started was to be brave and while the fear was there and the pain, that bravery have subsided into acceptances and being my own advocate.

If you're just starting out, the adjustment struggle will be there. Don't just expect that maybe you won't have a hard time adjusting that it will be smooth sailing. You will have some hard adjustment, whenther its getting your IG products, finding the right doctors, meeting the doctors, learning everything about what it means to be a Zebra.

You must accept it at your own pace and learn about it at your own pace. That what I did when I first started in '99. Can I say when I finally accept this lifestyle? NO because it became a regular routine for me and it will for you.

I wish I could give advice to those that are in relationships and your spouse is having a hard time adjusting to this new you. But I can only give in what I believe and expects, not from experiences.