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