Wednesday, January 28, 2015

Stressed Out to the Max

Update Time:

Make sure to read the previous posts about me being in the hospital and coming on home IVs to fully understand these next updates. Okay, whew where to start. First of all, I made my first VLOG today. So I'd encourage you to watch that to really understand what I have been dealing with last night/ today...

Here is the video:

Incase it doesn't load correctly you can go to my youtube channel HERE & watch it.

Sorry about the bad camera angles...I don't have a laptop with video capability. So I had to choose between a desktop in my bedroom or my phone. So I made this lil masterpiece with my phone. I'm sure Ill get the hang of the camera angles as I do more.

Normally, I wouldn't post a whole blog with my video (defeats the purpose). However, this is my first VLOG and I have some updates on the medical situation I talk about in the video. My nurse came to do my afternoon med, since I don't feel capable of keeping on top of everything and its just a lot to deal with right now. After she left I had a voicemail from the pharmacist saying to call her back. I was hoping for news that they would give me the elipse balls, she told me the insurance wouldn't originally pay for ellipse balls only for gravity. However, they will pay for the ellipse balls start with the next batch on Friday. I said okay, then I need to set up a nurse to come to set up/ do the IV meds. She informed me I was on my own, that the nurse already came once to show me and now I'm capable... I said I know but mixxing it and getting back into the bag is difficult for me, and keeping up with it is too much. She said "its easy, you are fully capable." I said, but what if I'm not, either physically or mentally, who are you to say I'm able to do the IV med. She replied saying she could send the nurse and the bill to me, I'd be responsbile for it. I said " I can't afford that and if I have to use an IV med method I've never done before, how can I be denied a nurse. Also, what if I don't get the med mixed up completely or air runs through, if I run it too fast, what I burn my vein up?" She laughed at me. Yep, flippin laughed at me and said " Oh you cant do that..hahaha (side note: I knew I couldn't burn up my vein, but I was trying to make a point. I shouldn't have to do these myself if I'm not comfortable) I cut off her laughing abruptly and said very upset (borderline almost crying- my steriods are making me weepy) " Well, thank you for laughing at me and making me feel dumb, I guess I will have to try to do it and hope I just do it right and not mess anything up. I will be talking to my doctor. Good day" I proceeded to complain to Doc and I will be doing a customer complaint once I'm off IV meds and no longer needing their service. Also, I called my insurance to double check and apparently visits that are billed and are solely for IV administration is covered and doesn't count towards the limit. So the Flippin rude lady was wrong. I'm too much of a coward to call her back. But I have the reference number and the names of people I spoke to, all of which will be put in my compaint.

On top of that, my Cayston hit a bump. Insurance is taking their sweet time getting me the documents I need and the pharmacy (a different one that approved my Cayston ) is now saying my approval is contingent on those papers.... So I'm done with IVs meds in 10 days and I hope I have Cayston by then.

I'm just so worn out and stressed, I told Doc I just want to stop doing the meds and give up. I'm about ready to marry Andrew tomorrow at the courthouse to switch to his insurance. His is a lot better than my dad's current insurance.  Once we get married I lose my secondary insurance though, so we are looking at paying our entire deductable within a month or two of us getting married, plus I have more copays. Let's not even discuss specialty meds coverage without a secondary insurance. But that's for another time. I'll get more into the harships marriage (the legal aspects) has for someone with CF soon. I'm not ready to get into all that. I have enough I'm dealing with right now.

I'm happy I'm home, I love that Doc is switching my meds to be more aggressive and really feels it will have an impact on my lungs. But I'm just beyond stressed out with everything. I feel like no matter what I do, the insurance won't be satisfied until I'm dead.

I'm very much looking forward to Friday and my ellipse balls! Plus, I get to do  a few more wedding appointments this weekend (including caterer). And no matter how frustrating life can get, I love it too much to throw in the towel.

Don't worry guys :-) I'm sure once this is all over, everything will be fine.

I can't wait til Andrew gets off work tonight, it's been the longest day ever!

Monday, January 26, 2015

Post Hospital- A CF Bride

Planning and IVs:

If you haven't read my last blog entry, you will want to scroll down and read it. Otherwise, you may be a little confused. I was admitted Tues night into the hospital and thankfully discharged on Friday night. Whew. Doc knew I wanted to be home for the weekend, I had lots of plans. Saturday morning I headed back to my hometown to sign a contract and pay the wedding venue deposit. I went for lunch with mom and even got to hang out with my Dad for a while. I talked to my Caterer and set up another appointment to finalize everything. That night Andrew drove home for Grandma Loebach's birthday. She cracks me up. We got her a card and Andrew picked her out a bright pink nail polish called "Young and Cheeky." She kept saying she was 19 instead of 91 and even asked Andrew to paint her nails with it. Adorable. Andrew dropped me at Mom's so I could do night meds & IVs. He had to head back early because he was due at work at 7am the next morning.

 However, sunday I had signed up for a Big Bridal Expo at the local college. Mom and Sarah (a bridesmaid) came with me. My sister is my Maid of Honor, but she couldn't make it, I signed up too last minute. As a teacher she has mandatory weekend activities, like the school open house that day.

Obviously, we enjoyed eating all the cake samples, signed up for the freebies. I even got a couple amazing deals, including one for the mens' suits! Of course, I was on IVs while at the expo. I was hooked up during the bridal show, but hey what can ya do. Life goes on and I gotta keep moving with it. We went for lunch afterwards and overall it was a great day!

That being said, I was still super relieved to be back at my own apartment that night. It was the most I had done is weeks, since I started feeling sick. I'm taking it easy all this week. AND my follow up doctor appointment is Tuesday, so tomorrow I will know more. I'm really hoping my lung function jumps back up, considering I don't feel really better...I'm not sure. So we'll have to see...

Today was my needle change day. So I got to take it out after my morning med and was needle free until 1pm when the nurse came to re-access my port. What else did I do today besides IVs, meds, and eat?  Well, I made a master list of all the wedding guests and addresses for the save-the-dates and wedding invites! I have 3 weeks until the 6 month mark. I have almost everything planned. Overall, it has been a easy and amazing experience. Wedding planning has gone pretty smoothly, minus Bridal party and guest list. There are too many people I love.

Its been really tough. I have over 140 family members (grandparents, aunts, uncles, cousins). Even not inviting anyone under age 18, we still have 150 family members between the two of us. Our venue choice and ideal small wedding really calls for a guest list of 175 tops... We have a bridal party of 16... So I've had to cut plus 1s, except for spouses. Its been brutal as far as how to invite everyone. And to be honest we can't. So we had to be a little "CutThroat" and not invite many friends other than a few who live nearby and bridal party (of course). Worst thing ever and hardest decision ever.

Pretty much since my lung function is low and I'm not feeling the greatest, I can't do much walking around. But, wedding planning is conducive to sitting while on a laptop. So that works well. I can't wait to have my lung function back, to get to work, and feeling like my normal high energy self!

I'm keeping on top of all my therpies and Ivs. 4 IVs, 6 nebulizers, and 2-3 vests a day. The schedules is a little crazy sometimes, but it is worth it to be home. I really can't complain, I'm very lucky to be home and not in the hospital the whole time.

By the way if you haven't seen my newest photo album on my CF Facebook page, you may want to read the captions. It tells the story of my hospital stay, with some interesting and funny details. haha. I try to keep that page updated with CF stuff, so my personal wall can be about everything else, but it does blend or overlap sometimes. However, the best way to keep up with my current health, Research news, or even the Princeton Walk is to "like" the page, so it appears in your newsfeed. Otherwise, I blog here about almost everything :-) I'll be posting a short update on that wall tomorrow after my doc appointment.

So let's hope it gets better and better. And thank you to everyone for help with anything (medical, wedding, or CF Walk). I really appreciate it. Much love!

Wednesday, January 21, 2015

Hospital Time

My start to 2015:

I started planning my wedding, got started on the CF Walk for Princeton, and I was ready to begin a new clinical trial! However, over the last few months I started to drop in lung function. It was always little by little and since I wasn't feeling sick, we kept holding out for an increase.  Read more details in this blog post here! Why weren't we worried? Well, we were cautious. But I'm allergic to all of the options for oral anitbiotics and most IVmeds used to fight the Psudeomonas in my lungs. Therefore, we like to exhaust all other options before IVs to make sure I don't build a resistance or even an allergy to the only 3 IV meds I can be on.

However, on Jan 7th (as you have read if you clicked the blog post above) that my lung function was 48%. In October 2013 it was 64 right after IVs in the hospital and my baseline for 2013-2014 was around 57-58%.  I started to nocitce I would get out of breath walking normal amounts or doing any type of physcial activity (even cleaning the house). It's time for a "tune up" when I can't do dishes, start a load of laundry and wipe down counters/tables in the morning without getting winded. Andrew and I would go grocery shopping and I'd be so tired half way through, I'd either go sit and he finished shopping, or we'd just cut the list short and go home.  And anyone who knows me understands I usually have tons of energy, so clearly I'm not okay with my shortness of breath (as medical proffessionals call it).

So Doc decided we had two options when we talked on Friday: 1.) Get Cayston approved by insurance and try a round (but who knows if it will get approved, we've been trying for it since October, ever since my machine broke) OR 2. Try IV meds and see if it helps. So Doc's office said they'd see if they could get my cayston machine approved by Monday or we'd discuss the admission to hospital more.

By Monday I was just ready to be admitted, I'm tired of not having energy, coughing more, having to carry my rescue inhaler with me from room to room, and coughing to death. So we set plans for me to be admitted last night (after Andrew got off work) and I'm going to be here for a couple days. I told Doc I just wanted to be out by Friday, so I could go to the meetings (Wedding Stuff & CF Walk) and Bridal Show this weekend.
So hopefully, that will work out and then I can finish the IVs at home. I don't mind doing them at home, it just takes a lot of time!

I'll be keeping everyone updated on my CF Support Facebook Page!

Now for the Hospital Opinion: I love the my Nurses, PCTs, RT, etc. Another perk (mainly due to my CF) is that  I have a nice private room, I'd prefer the beach or skyline window sets...  but I'm sure kids like the Barnyard animals, but not my thing.

The State of the Union Address was on last night,  and then Andrew & I sat on my bed and watch as Mr. President used the advances in the research & medicine towards progess for a cure for Cystic Fibrosis as an example! Whoot Whoot! It was really neat to hear the Shoutout about CF advances, considering how hard we work towards fundraising for it!

The food is great here. The other 3-4 hospitals I have been in have typical bland and boring food. Including a very limited menu. Here I can order an unlimited amount (since I'm on a high calorie diet. Plus, the options are endless: Shrimp Scampio, Mexican,Turkey, Hummus and Pita bread, Any fruit or veggie,  pizza, hot beef sandwich, over 15 entrees and 30 sides to choose from. I'm boring and always order shrimp scampi or hot turkey meals with varying sides. I always gain weight when I'm in the hospital. So that's another perk for sure!

I'm currently waiting for my Doc B to come in, so I can tell him I no longer want a pulsox on. It beeps constantly whenever I have to take it off  to go to bathroom or get out of bed. I understand its precaution the first night in the hospital, but after that he lets me if my pulsox numbers are decent. Which they hardly ever go below 97.  Plus blogging with this big clunky thing on my finger is driving me nuts!

I feel bad complaining, knowing that some of my CF friends are doing way worse and struggling to fight
 transplant rejection, etc. So It's not really all that bad when you put things into perspective. However, all of them would agree with me too, pulsox is annoying. lol

And for anyone who doesn't like needles sorry, but its a really good (informative) picture. This is my mediport needle. The long gray needle part goes into the center of the port (which is bouncy feeling, from rubber top), because and then the needles hits/goes into the back wall of the mediport. By accessing the backwall it gives a direct access to main vein. No more blowing IVS, etc. I love my mediport, but it's old (from 1996). So its not a power port. Which means they can't draw blood off it. Also a difference with mine that I've noticed from others is the placement. Mine is located in my right breast (slightly to the inside). This does make it more difficult to keep it stable/immobile while putting in the needle. But I love the placement, I can wear bikinis and nobody even knows it there (except the scar above my right breast), I joke sometimes I jot a boob job. But really I'd never want one anywhere else, arms, above the chest, by the shoulder, not for me.I had to be a little careful taking this picture, but I think seeing it accessed makes it eaiser to understand how it works. I love that I can have IVs in and still work or go to school.  LOVE my mediport.

I know I usually post a Funny but annoying moment. But you'll just have to wait til later. I'll be uploading a Vlog later today on that Facebook page (I posted above). This will be my first Vlog ever, but one of my best friend's insists I should do some. So I'll get it a whirl later today... perhaps after I shower (very carefully to not get my IV wet).

And I promise to keep everyone updated. And please send good thoughts and prayers to my friend Cloey, who has been in the hospital since before Christmas! She is a strong, beautiful, fun lovin 13 year old who should not be fighting a transplant rejection to the new lungs she received little over a year ago!