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.

Volunteer Travel

BioLife in Menasha, WI

Hey everyone!

So last week (May 17th - 21st) was pretty busy for me, a few month ago I got an email from IDF looking for PIDD patients to volunteer to speak at some of the Plasma centers in Wisconsin. And clearly I said yes because I love to travel first of all and plus it was an adventure!

I visited Sheboygan, Appleton and Menasha, Wisconsin. Three days, six meetings altogether two per day. Luckily my voice didn't go out, it has a tendency to do that every once in awhile when I need to speak in front of people.

Sheboygan adventure . . .

 

 

Some pictures I took while in Sheboygan, I like interesting sculpture because that's just me and art. The fishes photos were at a restaurant that my aunt and I ate at after I spoke at the Sheboygan BioLife center. 

Appleton Adventure . . .

My appleton fashion outfit and really my first dress that I actually wore! Plus rocking Zebras Socks

One of the journey that I had hoped it worked out was seeing Brittany, she and her fiance were traveling to Wisconsin to head to Iron Mountain to see relative. We both really had hope that it would have worked out but due to their little boy not handling car rides well and getting lost amid Ohio and then ended up in Michigan and ended up goign through Michigan which was not their original plan. However I told her to MAKE sure to tell me when they were planning on coming back up to Wisconsin because where my aunt and grandma lives it's only about an hour and a half from Iron Mountain. I can make my 3 hour drives to my aunt and grandma and Brittany can make a little pit stop before heading up to Iron Mountain.

One of these days it will work and it will be spectacular

 

Now there's a story (stories) behind some of these photos, let's start with the British Man. If you didn't know I am an elite bowler and sometimes you travels for bowling events. Well in 2012 I was actually in Appleton for High School Bowling Tournament and after that tournament we ate at this very restaurant. It was no wonder why the restaurant looked familiar, it was crazy to think back on that.

Now Barnes & Noble plus the books I brought, CLEARLY I'm an avid reader and I also blog about books so that's really why I take pictures of book stores and books.

The Elephant that I took at the restaurant Good Company which was delicious by the way, an author that I'm friends with loves elephants so I tweet to her that when I see elephants I think of her because she love them. She was really touched.

Menasha adventure . . . 
There wasn't much because my aunt and I were going to the Menasha BioLife and then we were heading back to her house and then I was leaving the next day.

Me and Cassie

I spoke to multiple staffs at each centers, and for the most part a lot of them did have some really great questions. There was one person that work for the company that creates the machines to process the Plasma from the donors and turns out she works at numerous company with plasma therapies and has a vast knowledge of PIDD. She even told her own mother-in-law and friend to get check because they had the symptoms of reoccurring illness that just won't go away. 

She held back a lot of questions because she didn't want to take over the meeting but it was really great to meet her and hear from someone that has a great understanding about PIDD or Zebras. She loves how open I was with my journey and clearly have such an positive thought about myself. The first day at Sheboygan, the staff was a little bit more quiet and I'm honestly am an OPEN BOOK. But hearing any one story can be quite a lot to take in.

Overall this trip was fun, I love traveling to begin with so I'm not picky at all. As long it's inside the STATES I'm good an as long its not anything hunting/fishing museums I'm good.

I did get a thank you card from Cassie and she said that many staff were deeply moved by my story and my overall perspective in life living with PIDD. Even Cassie said that in the thank you card and told me to never lose that perspective which I never will.

Thank you Cassie for representing me, thank you to my aunt who drove me to each centers, it was a little fun adventure for both of us.

New Discoveries

 

You know for years genetics have said that they have the answers, we will find the answers in 5 to 10 years. Now depending on when you were born and what generation you are from that could have been 30 years ago! 

Well with the rising of technology and how much advancement there is that some might get one step closer to their "cure".  Yeah I know its hard to believe that word might become real, now for me I'm not sure if the word CURE might be accurate but you'll see why I think that. 

When I went in for my 6 month check up with my immunologist, the first thing we had discussed was about genetics. Now a little brief snippet, both of my parents did do genetics testing to determine if anything was passed down without their knowledge that might be the reasons why I was always sick but everything came up ZERO . . . and that was 20 years ago.  Genetics and technology wasn't as advance as it is now.

 

***This is a Chromosome Chart

At this seminar they explained that it goes deeper than just genetics and chromosomes, it's actually your GENOME

GENOME DEFINITION: 

In modern molecular biology and genetics, the genome is the genetic material of an organism. It consists of DNA or, in RNA viruses, RNA. The genome includes both the genes and the non-coding sequences of the DNA/RNA

So things like where you get your eye colors, hair colors, and other physical features  that you would get from your parents as well as certain chromosomes that gets passed down aren't not the biggest role in how you might get this or that.  

My immunologist also have said that while they were showing and explaining certain genomes that they know cause this or that, this particular Genome is the exact profile of me. For years my immunologist couldn't put me under an certain category because I didn't quite fit in right but he had to put me somewhere which is CVID. 

What I found interesting was that this particular genome is the exact profile of me and my immunologist explains that these genome(s) are turn on way up high which is why some of us has this or that. Genetics believes that if they can turn down how active this genome is so it's not as active but still on because you can't turn it off. 

So what's the plan?

*** If you don't understand about what the picture represent, it's basically how the process of transcribing and translation occurs. You unwind your DNA then the Messenger RNA copies the one strands of DNA then it is translated.

Well they found that these genome that are getting transcribes the RNA and the RNA turns them up on high, what they hope to do as my immunologist explains to me that they'll take a cell out of your body, readjusted the RNA sequences once they know which Genome(s) it is before they place that corrective cell back in you.

Now you might say like what I said "Aren't they worry about the body attacking this because it's foreign?" my immunologist answer said that it's your cell, part of your body so it shouldn't not and have no reasons to attack that one particular cells. Our body reproduce these cells all the time so by placing in a new and healthy cell and that will ALSO be reproduced. = HEALTHY CELLS

I already told my immunologist that I would be willing to submit blood work and whatever else the genetics people need. So hopefully by the time he has his summary report done and sent to me that is when I'll know more about what to do as far as being a part of this amazing discovery.

10 years down the road isn't far, I'll be 35 believe it or not and if turning down these active Genomes that triggers what I have for good and only have to do IVIG every so often then so be it. Plus this could also help solve others answers that I may not have had questions to because the genome(s) had pointed it out without my knowledge of even having it. 

Hey it could help solve my kidneys problem, which I hope it does because doing an bispoy will for sure put me 10 steps backwards and the recovery time could take a 6-12 months. Plus what happens if they don't find anything?

This could be start of a better future for many, but it taking it one step at a time FORWARD and not backward. Now this might not work for all of you but you know it doesn't hurt to ask your doctors about new genetics and genome information. The organization that my immunologist had said are working on funds to start this and I'm more than happy to do the genetics/Genome testing done. 

I'm even more curious to what the name that one GENOME that is the exact profile of me is called. 

I will compose more posts as this progress along, I'll even explain about what my goals are before having kids even though that could be 8 years from now. But I like to set a premeditated plan, even when it's a crazy plan.

~Kat

Past Remembrance

It's not very often when I come across something that takes me right back to that day and age in my life. As kid there were times where I had to be admitted to Children's in Minneapolis/St.Paul  because of this and that. Well during those times I spent most of my time coloring or drawing, I was a big artist back then and Children's did this day by day pictures that were submitted on the children show at the hospital that way the children could see their masterpiece on the TV.

Well today while shopping and browsing, I came across a spiral bound book that were animals stencils. I also had animal stencils back then when I was at children's, I can't remember where I had gotten the stencils from but I would spend hours doing those and because I was there at least a week or more because I was so sick. SO at one point my drawings were featured. 

It was crazy how much I remember and how joyous I could be drawing, now did I buy that book? Sadly no the store was asking for a hefty price on it but it was definitely worth while stopping at that particular store and it was new to me. 

I'm sure that I'll come across other things that I do have personally like stuff animals that I had gotten while at Children because I been there a couple times as a kid. I can remember when my parents and I would be driving to the cities at night because it was urgent that I get admitted.  

It's the little things that take you back, things that you probably don't think of anymore. It like when an adult man dances and whistle to a old Disney song ( yes that also happen today) I had to stop at the Disney store of course. Those things are fun to remember and sometimes just act like a kid for just a few seconds.
~ Kat

Healthy Living Struggle

This post I feel that its a struggle that many face, I am one too.

I struggle with . . .

To Eat Healthy . . .

To Exercise Daily . . .

To Lose Weight . . .

To Sleep 8-10 Hours . . .

Now whether its all part of the chronic illness we all live and share, however for some it might be doing one thing or another that can help with staying healthy and living healthy.

For the past couple weeks I've seen many of my friends on facebook share their accomplishments of losing weight, eating healthy and essentially feeling healthy. I'm not negative on their journey, I'm glad that they are getting to a point to where they want to be. However my reality isn't that easy and it's probably not easy for many others as well.

To Eat Healthy is a Struggle . . .
For me, you wouldn't think I eat excessively and I don't really but I do eat a lot of fried food and not so  much grilled stuff. I don't mind grilled stuff and for some things I would actually prefer it just because sometimes those Crispy fried food is a little too tough on my teeth and I'm very self-conscious about my teeth.
This biggest issue I have is that I can't eat all the GREEN Veggies which is very good for you but bad for my blood thinner. Over the past month between both weeks before I do my regular blood work (it's done every 21 days) my INR has been low but since one of my favorite veggie was on sale that I consumed it quickly and in large consumptions. For this particular veggie it costs about $4 a pound!!! and when it's on sale it's about a $1.98 a pound.

But again my blood thinner hates it and during this previous doctor appt for my upcoming infusion, I had asked how long does it take before the veggie starts interfering with the blood thinner and she said that it's almost right away after it all digested of course.

What most doctors do is increase the dose of the blood thinner to compensate with the veggie intake but after what had happen to me in 2013 which part of it was due to being on a high dose of coudamin and my INR was literally through the roof where my doctors were acting as quickly as they could to write an order and have it process for me to get an Vitamin K shot. So we know that and I express almost daily that I don't ever want a repeat of 2013.

So basically I don't try to eat a whole lot of green veggie and if I do its best that I have it maybe once a week or twice a week on an low portion. But I think now my goal is to eat my favorite veggie when it's back on sale to eat it two week before I have to do my routine blood work/check up. So yes the Struggle is real when trying to eat healthy.

To Exercise Daily is a struggle . . .
To exercise daily, I found that I like working out early afternoon or late morning but as you know some of us deal with fatigue. For me it's that finding the right routine for me to get repetitive but after my last semester ESPECIALLY DURING my last semester, I couldn't work out. I was struggling in school and literally would be exhausted by the end of the day because the stress I had would drained me but I try to maintain positive throughout the whole semester. I had probably put at least 20 hours maybe 35 hours a week during that ONE semester.

So Exercise wasn't in the picture, I'd probably gone about a year without working out I might have maybe one here and one there in this past year and my mom who works out three days a week always frown when I tell her that I didn't go to the gym. But she doesn't understand, I don't have that kind of energy and plus I'd already begin to wind down for the day, she doesn't wind down until after she's done at the gym. It's work and gym then comes home and by the time she's done it's already almost quarter to 8pm. I read that it's not good for you to work out at night because it keeps you awake, you eat late and your digestive is slower when you exercise. Plus a few other things. I do bowl in a league once a week and that helps during the winter times but now that spring is coming around and the season is coming to an end, I will have to find myself going to the gym and work out.

Losing Weight is a Struggle . . .
Losing Weight sort of ties in with the two things I discussed above, those two things can aide in losing weight. I know I could lose 20-25 pounds but I'm not one of those people that stress out over what their weight it because I'm not going to adapt to what Society believes that we should be. I'm going to adapt to myself and where I'm happy. I still hate how Society will still give pregnant women a hard time on their weight gain and a hard time on the "losing weight battle" Kelly Clarkson obviously been on the media lately and people are critiquing her because she hadn't lost the baby weight but as long you feel comfortable in your own skin why should you worry about how society thinks you should be?

Society have been groomed a certain way that isn't adaptable for every normal horses and every single zebras in the world. I'm even more appalled that Giuliann Rancic from ENews was getting criticized for how skinny she is, that women went through breast cancer, she went through fertility issues and she is still taking some drugs for her cancer that causes her to not really gain weight. Giulianna should have never gotten those rude and ignorant comments, because she was also struggling, and I applaud her for being open about it and wanted to set the record straight even though she should have never had to.

So I know it will take time to get to the weight where I'm comfortable, I know that I'll adapt comfortably when I have children. I will not let society tell me what weight I should be . . . I will be happy if I weight 145 pounds. If a guy tells me that I should lose 30 pounds because I'm "fat", I'll kick him out of the door . . . I have insecurity about my weight and how I look but I refused to be look in the way he thinks I should be as well to Society. If a guy tells me that he'll help me with my weight loss plan, then I know that he supports me and love me for who I am and not by what my weight is.

You need to be happy with your body, it's your body . . . only you can be the toughest critic.

To Sleep 8-10 Hours is a struggle . . .
Now the whole sleeping 8 to 10 hours a night has to be every single adult problem, whether it just their daily life that sleeping for that many hours just doesn't seem reasonable. Some people struggle with sleep issues, I know my dad does with sleep apnea so he could only get maybe 4 hours a night if that. It's a struggle for him as for everyone else in the world.

For me I am a night owl, I don't stay up all night but I like to do things at night like write, read, watch a movie or anything else that doesn't require a whole lot of energy. My brain is consider creative, I'm one of those that has that emotional brain aspect, but as far to how would that prevent me from sleeping 8 to 10 hours is basically sometimes I get "Train of thoughts" and I'll toss and turn throughout the night. Then sometimes for no explanation I'll won't completely fall asleep and this has only have happen a couple times. But I'm a slow mover in the morning, I have to get up at least an hour before I have to go somewhere. Plus because I do frequently get up in the middle of the night to go to the bathroom and that could be two to four times a night ranging between 12 to almost 6 in the morning.

But another thing is that it takes me a while to fall asleep, for years I had to listen to thunderstorm music just to sooth me to sleep now I don't do that except for a few times when I really need it. Now I'd simply put a sleep timer on my tv and I'll usually fall asleep quicker that way. Is this a struggle or is this a life choice, it could be both . . .depending on how you look at it. I know that us Zebras should be getting more hours of sleep at night because of our health and our body relies on us to get as much rest as possible and rejuvenate.

We all have struggle with something(s) and yes it's up to ourselves to make the changes however you know that changes can be tough. Changes takes a long time.  If you have gone through a change adjustment, give yourself an pat on the back. If you are just starting to want to make changes, just remember Take ONE STEP AT A TIME.

~ Kat

Infusion Day

Okay so this is a week late since I had my infusion last friday but I had a big big weekend so I didn't have the time to sit down and type away!

So my infusion went a little bit different because I had a nurse who seen me before and sometimes changes the bottle every once in awhile if my primary nurse isn't around. Well she was my primary nurse and I know she's knows what the routine is for me but she or I was going to play hardball.

First it had to deal with my needle size really its the same dance over and over again, I typically "Usually" uses an 1 and 1/4 size needle that practically the biggest size they make.

BUT . . .




. . . .




BUT . . .

The claim is that they don't have that size!!!!! Which I know is not true because Ive made it a habit to check the needle size when I come every 21 days. There's only a few nurses that actually know where that neddle is stocked but still it's the same old dance.

Anyways so I said we can do 1 inch  but I can't go any smaller than that.

So I'm access and waiting for my stuff to come up the nurse wanted to give me an IV saline bag which is like NOT WHAT I DO! Not in the last 6 to 10 years!

But she was insisted that it was protocol but I know the routine for me so after she was trying to provide an argumentative discussion about it's a backup, we can't just give you your medicine and such but I told her that we don't do IV Saline for me, we never have unless we needed to and I've been doing pretty good on Privgen without an reaction.

I kept telling her that no one else give me that IV saline but she goes on saying that everyone's problem but I had to put my foot down because I did not need that excess fluid running in me!

SO after I told her that I simply don't get it, she asked  

"So you're refusing this?" 

NEVER IN MY LIFE had I had someone say that to me! It was like I was refusing treatment but which I was not. But I said YES I'm refusing the Saline bag and so she gave me Saline Flush (Syringe) which is what everyone else does, simple as that.

Its rare that I had to do that but I did not need that medium size IV Saline bag, it wasn't even the smallest they had!  The only other time that I had to explain that I don't get an IV bag saline was with a new nurse (really new) and she asks for a switch

I promise I don't BIT! Or Claws but she was very new so she was uncomfortable with how things were run with me and me being so vocal.

And that's okay . . . with me it's just a go with the flow.

Vaccines, Vaccines, Vaccines.

I know with the measles stirring around many Zebras are very concern about getting it or are stuck with that should I or Should I not get vaccinated (if you haven't already)

Now I was given the MMR as a toddler but we did not know that I wasn't suppose to get it because it was a live virus. But in the end my titer shows no indicated that I've ever got those Vaccines but we have the paperwork saying so.

Now the doctors, our immunologist or whomever you go and see say that ever time you get your IGG, you're essentially getting those vaccines every time you infused so theoretically you should be protected. But you can be left wondering about your owns kids (present or in the future) how do you protect them as well yourself?

Yes you should get your children vaccinated! That is IMO but everyone is entitled to their belief and reasons why they won't vaccinate their children. My goal when it does come time I will vaccinate my kids but maybe not at the age they usually given them at.

With my personal experience, the vaccine "LOT" that I receive contains a high amount of Mercury and from that "LOT" there's been kids that gotten those and had develop some health problems or even autism have been noted.  So naturally I'm going to be hesitated on when it's the right time to give my kids the vaccines or if they can even receive the vaccine because you never know, they might get CVID or another form of a immune deficiency.

You want what's best for your children as well yourself especially for us Zebras, I know that I'll have to get my kids to get the chicken pox vaccine because I've never had it (the vaccine) so I know even though the IVIG is suppose to help me against those virus that I can't get vaccinated for like chicken pox. Chicken Pox is dangerous to adults and if for whatever reason one of my kids were to get the chicken pox then I might have to isolate myself from her/him. 

Don't you think that at some point you'll have a fear of not being able to tend to your children when they're sick? I kind of have that but I hope that I have wonderful healthy kids.

So what about you? How would you approach the Vaccine decision?

How do you Administer your IG?

Did you catch that IDF Advocate newsletter about Infusion ports? IDF Advocate Newsletter I have had my port (my only one for nearly 15 years) There's part of me that has an few issues with this, I understand that Sub-Q is becoming more probable for patients. 

However if you put it in a sense of where a patient is needing 80gram of IGs or more, you have to think how often that patient would have to do it. When my immunologist brought it up, he did the math every other day for three weeks because of my dosage. Now I do IVIG via port-a-cath at my short stay clinic/hospital, and I do that every 21 days (every three weeks). 

Now if you ask me, my odds are better with the standard IVIG via Port because I won't have to worry about the constant poking and because I have Evans, with that I would most likely have more bruising sites with Sub-Q since Sub-Q is done wherever the patient is most comfortable placing it as well. Plus the number of times I would have to do it every week. 

I gotten the port place in 2000(?) because my veins were completely shot from the IV and it gotten painful as well. Trust me I think I was traumatize by the end of the first year when I first started IVIG, now I'm sure my veins are grateful that I got the port just because they had the time to build up again and remember veins are fragile! 

The only "bad side effect" I had with my port is the post-op, when they check to see how it was doing after a week of placement and also check to make sure nothing was wrong. I had develop a clot beneath the port, although that clot haven't done any harm to me probably because I take coudamin. But to this day I never had any related problem with that clot that developed under my port. 

The only issues I tend to get is scar tissues which is to be expected and I had some sort of reaction or something that my immunologist wanted to do a blood culture from the port and that turns out fine. I've had one incident where getting an access was and seem merely impossible but that occurs when I gotten sick in mid 2013 and during at one point I stop taking coudamin for almost a month but we kept tabs on my INR among other things because it was a really horrible "event" I had but again wasn't related to any port issues it was probably the matter of fact that I wasn't taking coudamin. When I did restart taking coudamin again the access went just fine after that.

I guess part of this is just my personal experience with my own port and I'm probably one of the lucky ones to have a port for this long. But you could also look at it that I'm lucky I didn't develop any of those horrid complications especially with all the conditions that I do have.

To this day I'm thankful and glad that my port is doing so well and my immunologist used that common quote about fixing things "If its not broken, don't fix it."

So am I against Sub-Q? As of now yes, because it's just doesn't seem reasonable for me to switch to Sub-Q with the dose that I receive as of now. If Sub-Q works for you great! but if you're one of those that don't like it then try to covert back to doing the IV. 

If doctors are not in favor of ports anymore then that's fine but for me I would never go to Sub-Q and I don't know how long I could do IV if I had to. I'm still just very grateful that my port has lasted this long, it works like a charm.

~ Kat

Infusion Day

This will be my first infusion blog that I have done in a long time, I  had used to write Infusion blogs on an old blogging site but I wanted to part from that. So now with the Zebra Divas I thought why not post an Infusion Day post.

To start off, I don't do home Infusion . . . WHY? you might asked is mostly because my home setting isn't suitable for sterile field too much clutter.

Another reason why I don't want to do home infusion is because I would miss my 2nd family that I have at Scared Heart, I'm like their 2nd/3rd/4th daughter to them. But also it's my comfort zone BIG TIME.I know at some point I might leave that comfort because of life changes.

So you might wonder what I do (AT) the hospital while I infused . . . A Computer, Ipad, Iphone

Typically I write (I'm a writer can't you tell?), it doesn't matter which book I'm working on I just know that I have to write or WANT to write.

Every once in awhile I will watch TV mostly for Cupcakes War (if its on) or Say yes to the Dress shows and sometimes whatever TNT is playing. 

I listen to music on a very regular basis, I'm almost never anywhere or doing anything without music playing. Then I get a visit from the spiritual people, we talk and then we say or well he says a little prayer for my life journey because I'm always doing something new that is towards my life journey down the road. 

Well that's pretty much what's goes on during my infusions, I'll share a old story of how I used to spend my time while doing my infusions so long ago.

~Kat