Thursday, May 18, 2017

Hats Off!!!!!



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I am so glad to be at this point. So much has happen in the past two months and after two years of being in my Health Information program, I am ready to graduate. 

I had some ups and downs during the course of the program and so did the rest of the class. We gain a lot from our program and are ready to take on the world.

I am excited to venture off to finding a career in my field, and start spreading my wings. 

One of the first step I have to take is my certification exam, my goal is to take it in July that way I have a whole month and a half to study for it and prepare myself for it. I'm super nervous about this exam but I know if I stick to my study plan I will achieve in passing the exam. 

The next step is to find a job and I'll need to start practicing job hunting like a hunter hunting for its prey. My resume may not be up to par, but hopefully someone will take a chance. I already have a associated business degree and now with the addition of Health Information Management Technology Associated degree, I shall shine.  

I am going to miss everyone, but we will stay in contact with one another. I will miss walking across the bridge to my classes. My Tech college is a place where I've spent 6 years of education, I went through two different program before I arrive at Health Information Management Technology as my second full degree. 

Future education???? It's may be possible but it is not in the plan right now, I'm ready to start doing more Life experiences like Job, Dating, Marriage, and perhaps Kids. When I was at my association conference I learned about Cancer Information Management, that program really sounds interesting and intriguing and there's a BIG PLUS . . . . It's all online, I can earn the associate's degree online.  But right now I'm not going to be currently pursuing it because of wanting to do more LIFE things and not STUDENT things. 

There's a long road ahead of me, a lot of adventures and challenges. I can't wait to see where the road leads me. 


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Tuesday, February 28, 2017

National Rare Disease Day


How many people do you know that has a rare disease?

How many Rare disease do you have?

Is your Rare disease Genetic?

National Rare Disease day is a day to bring awareness to Rare Disease that affects more than  Million people Worldwide.

Having a Rare disease can be a challenge, living with the unknown of the disease. It leads you to wonder about your quality of life and health status, how does it affect your family, how does it affect you.

For me I don't chose to live in the unknown of my disease, I chose to thrive with the disease. Diagnosed at aged 5 with Common Variable Immune Deficiency, however I also have other rare diseases that pushes me out of the circle of CVID.

I also have Evans Syndrome and Severe Hemolytic Anemia, both of which are very rare that there's no real statistic to how many are affected by these diseases.

As of right now, my diseases are not caused by genetics but with the advancement of modern technology and the evolution of the Genome project that my genetics can be pinpointed. Neither of my parents were carriers of any sorts and we had an genetic counseling when I was much younger than 5 because I kept getting sick.

I've pretty much live with these rare diseases my whole life, and I've had my ups and downs with these diseases. However I do therapy called Immunoglobulin Therapy, other terms that is used to represent my Therapy is IVIG or Infusion. I have been doing my infusions since 1999 and is done every 21 days.

Without this IVIG, I'd probably would not be here today or would be as healthy as I am today. I am considered to be an Healthy ZEBRA. Healthy Zebras are able to go out and do things like a normal person.

Now yes I said IV(Intravenous) however my route of getting my IVIG is through my Port-a-Cath that was placed in 2000. Believe it or not I still have that very same port.

YES you read that right, I still have the same port, this port is 16 years old and working great. Sure it had a little downfall last summer 2016 but that was resolved using TPA.

This blog is basically an insight on how I live with my Rare Disease(s), although it has some ups and downs. Living with this has become my lifestyle and I don't think I could ever imagine living without it. ALTHOUGH YES Cure(s) is a great thing but then does that change who you are or who you were with the disease?

I would love to have my IVIG be spread out longer in the year rather than have 13-15 infusions a year. There's research on trying to make our way of life better and not have to do frequent IVIG or Sub-Q which is a new route for many people.
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Sunday, January 1, 2017

Looking back 2016

Well 2016 has come to the end, I don't know how many of you do an reflection of your year. I do but most times they're just private thoughts kind of thing. This year I feel there's a lot to reflect back on and talk about my year in general.

Sadly I lost my only grandpa, just a week before Christmas. It's so different knowing that he's not here anymore but I know he's not suffering and is smiling down at us. It been hard on both me and my mom, she took it more harder because it was her dad and all my aunts (her siblings) were dealing with that same thing. One of the things while arranging the funeral, is that everyone had use the picture I took of grandpa in October at my cousin's wedding and honestly looking at those pictures I took, just reminds me that he wasn't sick and he was smiling.

I saw him the day after Thanksgiving, after my dad and I got our Christmas tree. I'm glad that I have good memories, the smiling memories of him rather than what my grandma and my mom and her sisters have seen as he started declining. I love you grandpa and I will miss you.

School
I can't believe I only have one semester to go for my program, I have to say I'm so glad to be finally done with school. I told myself a long time ago (probably when I started college in 2009) that I would be done with school by the time I'm 26. Well I'm turning 26 at the end of this year and I'm meeting that goal.

Work
Yes I officially have my first job, it's an tasking job with a lot of physicality that make it's pretty challenging. It's nice to have one at the same time, I know once I'm done with my program I will be seeking out another job with my degree.

Health
Aside from my whole port mishaps, it's behaving pretty well. Although I know it will come to a certain point in time that I'll need to replace it for good. My mom's insurance went back into network with my hospital but right now currently I'm still at the new site, I still have mix feelings only because sacred heart has been my second home for 17 years. I'm still debating on changing doctors, I can say this . . .  Somehow when you get older you get a little bit more indecisive and that is usually where it stops me because I can't make up my mind. I worry about the domino effect (I think) or that my decision was a bad one but there's no one to tell me if my decision is bad or not. It all has to be my choice. 

Life 
I think the year 2017 is time to start dating, start having a relationship but I honestly have no idea where to look for that. I'm considering match.com just to give it a whirl but I need to ask some people that have done it and has experiences with it whether it's bad or just meh. Should I ask myself if I'm ready for a relationship? I think I am, I mean I'm going to be 26 and most people I know are with someone so I kind feel like the only single person. Even my whole class which are females are with someone. 

I'm also thinking of pushing myself to lose weight, I mean I don't have a issue with my weight but it's there and I'd be so much better off with shedding some pounds. Learning how to eat right is part of the challenge although I have no problem eating vegetables and fruits, it's my self control on Junk food. If I can limit how much potatoes chips I eat or how often I go to a fast food that my weight will be better and my a1c will be better. 

Wednesday, June 29, 2016

Updates on Port

Well yesterday I did my walk-in to the ER, amazingly that time just kind of flew by between having the PA check me out, to a nurse that access me without a hitch and having an radiology nurse come down to check me.

When I got access and check for blood return, there was very little . . . There was slow movement with the blood, almost like clumps from my dad's point of view. For me I just really couldn't look because all I could see was bad news and not much else.

When the radiology nurse came and tried it, the blood return still was the same so we went on down to Radiology Intervention and did TPA. So as we waited anxiously for 30 mintues to come, when the time did we still were having issues with blood return. It got better but not like it should be.

So we went ahead and did the dye test, overall the port is working fine but there may be either a clot or fibrin sheath that is causing all the problems. It's like for example I don't feel any discomfort when getting a flush when my head is turn away but I feel a little discomfort when my head is turn facing forward.

We did another round of TPA and waited 2 hours, during those two hours my dad and I went to say hi to some old friends on short stay and then headed out to eat at Wendy's then stop by shopko since it's right next door.

We return back and the blood return was again a little hesitant but if might be due to the nurse didn't do an flush first then check for blood return. So can I say that the second round works? That I'm not sure but even after the dye the Radiologist that read my dye test said that there's nothing that would indicate a problem or no reason why I can't keep using the port.

So in other words, we won't know how things goes with the port until my next infusion which is next Friday. You can say that my nerves and being anxious grows on my mind as my infusion day comes closer.

I wish that somehow that there were more definite answers to reasons why I was having issues but again if it is fibrin sheath which most likely is, that there's really no way to dissolve it if it's on top of my port and not within the port itself.

My dad did some research on the new and improved ports nowadays, I think if we need to change out the port I will get a new one. After just talking with my parents and talking with a lot of people from the CVID facebook group that I would hate to start having problems and reactions/side effects after going for 17 years without them. 

But at least one thing came out of this little trip to the ER, I did get heparin after not being able to get it at my last infusion.

Tuesday, June 21, 2016

Prayers

June 17th, Need some prayers in these next few days, three weeks ago there were issues getting me access however I did get access and had my IVIG. But yesterday, none of the nurses could get me access as they each felt resistant and the needle wasn't going through like it usually does. Monday my dad will be spending most of his day making phone calls to the doc that put my port in 15 years ago, and to my primary physician since he was not working yesterday (FYI almost no docs works on Fridays apparently) 

I've managed to get a hold of my immunologist yesterday after my dad called the triage nurse who doesn't know the difference between it being an urgent call or something else. I actually call the receptionist where you make appointment and told the women about the urgency that he needed to call me ASAP. 

My dad and I talked with my immunologist, and the reality of the port is that maybe it's just time to have it out. It gave me 15 years and 7 months, weirdly enough I'm not getting an biological signs like a lot of people do. It's really all Mechanical from this point, there's no redness, nothing that my skin is showing signs of an issue. 

So I'm kind of thinking and as a family decision, that the Port is going to have to come out rather than potentially fixing it. We are going to try and get an ultrasound scheduled to see if we can see what's going on because we won't be able to do an dye test because of the issues with the port. 

So what's my next options? My immunologist suggested Sub-Q but with the amount of grams I get that it would be near impossible to do plus I could get more of a reaction and/or reaction Plural with Sub-Q than how things are now with doing it every three weeks for four and a half hours. 

So yesturday how it went with me getting my infusion is that the wonderful nurse name Shelly, who actually used to work for Red Cross looks at my arm and saw some pretty good veins. So she prep me and I got my stuff via antecubital vein. 

So the odds are that my next infusion, it will be another IV in the arms or hand if I can, we will be looking into PICC but for right now I think we'll do the regular IV method. 

As of June 21st, there hadn't been much set in motion about getting an ultrasound or anything done. I will share details when I can. 

Friday, May 27, 2016

My Last Day

Well today May 27th, 2016 was my last day at Sacred Heart Hospital.

As much I would want to say that everything ran smoothly like it always does, but my Port has decided to be fussy today, either because of scar tissues or because my nurses were kind of hitting the wall of the port or just because this was my last day here that it wanted to be troubled.

After the much delay due to the Port, I was able to start my infusion with my port. One of the Radiology nurse that came up to examine my port kind of pressed down around my port and didn't feel anything out of the ordinary although she never seen me or have had me as a patient.

But Radiology/Oncology are the experts of ports, so we had decided to give another saline flush a try after waiting awhile and at that point I hadn't notice any discomfort like I was having earlier, she didn't see anything while doing the small saline flush. But since I didn't feel any discomfort when she had pressed down and Saline flush was going in that we wonder if the needle got a little lodge in a space where it's more dense that where it should ordinary be.

I have a 15 year old port so I have an old version of a port that probably most people don't even have anymore so that space of the wall where its more denser could have very well had been the issue for the difficult access.

We tried a few minutes with IV saline and no discomfort had came, so we decided to make the jump and start my infusion. I did start much much later than usual and kind of slowly gradually bumped my rate.

So while my port doesn't show anything weird in appearance and it doesn't feel weird other than it's sore from all the poking. It look just fine and normal.

So in retrospect of doing a minor goodbye, I had called my dad to come and be here when we were trying to figure out the next step after I had finally got access got great blood return but was feeling that discomfort. He brought in CAKE!!!

While on the phone with my aunt the other day to wish her a happy birthday, I told her that I really wanted to bring in a cake for everyone on Short stay but I didn't think there was no way to get it ordered and ready in time, but my sneaky Dad actually overheard my conversation and put in the order right away.

I had made some business cards for everyone to take and to keep in touch with me, and made a Thank You card (which I did not take a photo of, but in all honestly I made it so last minute). So overall it was a day of goodbyes, but I hope that one day that I can return to Sacred Heart.

But I do plan to drop by every once in awhile just because these are people that have known me for years so I can't possibly just not stop by, I do it with my High school because some of my former teachers still works there and they were teachers that were really like touched by me as a young teenage girl.

So after all that been said and done today, it's sad that I have to go somewhere else because of my insurance. But I'm glad to have known every single one of the nurses on short stay for the past 5 years.

So until next time everyone!

Wednesday, May 25, 2016

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.