6 Months

Yesterday was Mebsie's 6 Month Anniversary of her Double Lung Transplant! I'm so very proud of her! She has spent roughly 5 of the past 6 months in the hospital dealing with complication after complication, yet she still came out on top! I am so honored to call her my friend! It's been a long journey, and it's really just beginning, but I know she can beat anything!

2 days after transplant

2 days ago

Spine clinic, Mebsie update & a puppy!

Hello blog readers,
I suppose it's time for a little update.

First, an update on Mebsie.
Mebsie, as you know, got her double lung transplant on May 28th, 2015. As many of you know she has not had an easy recovery. She has pretty much been in the hospital since transplant. (with the exception of MAYBE 2 weeks). Her complications range from complete kidney failure to pneumonia to seizures. I stayed with her in the hospital in Philly for 3 months. May 29th - Aug 29th. Then I finally had to come home and take care of my own appointments. It's really hard being away from her, especially when she's unwell. We text everyday and talk on the phone occasionally, I also am in frequent contact with the charge nurse and a social worker at the hospital. But it's not the same as being there. I'm going down for a visit tomorrow, but unfortunately it's only a one night visit because I have a new addition to my family...he's furry, and adorable, and goes by the name of Jaxon Wilson!

This brings me to my next topic, puppy!
Jaxon is 14 weeks old. He's a mini goldendoodle and he's desperately attached to his mommy! (me) He cries when I so much as leave the room. He's very sweet and playful. And he's also my future service dog! (for PTSD, social anxiety & syncope detection)

And finally, spine clinic.

As some of you know, I have been suffering with severe back pain for about 7-8 years. I have been taking pain medications for it but never really having the underlying issues treated, or even examined for that matter. I finally decided I couldn't take it anymore and I wanted to do something more.
First I saw a pain management doctor (after waiting 2 months for an appointment) to try to get to the bottom of what was causing it, unfortunately this doctor did nothing for me. He wrote me 2 new prescriptions and sent me on my way. He didn't even fully examine me. He just handed me the papers and told me to come back in 2 months. Also, it should be noted that one of the medications he prescribed, I cannot even take! It's a muscle relaxer that should NEVER been taken in combination with my cardiac medications as it causes drastic drops in blood pressure, heart rate and of course, fainting. Cool, huh?
And before you jump to his defense, YES, he had my medication list in front of him. I didn't get much relief from the other medication he gave me either, so I decided to rethink things. My plan? Acupuncture. I did some research and found a local clinic near my house that does an array of neck, back & joint care. I contacted them and got an appointment 3 days later. My first visit was of course acupuncture. As well as a set of Xrays and a full evaluation. (for free!) Well when the results came in I was a bit shocked. I have a host of back problems. Scoliosis, complete with uneven hips. Compressed discs, pinched nerves, and I've also had whiplash, probably multiple times. So we began a 36 session program of massage, acupuncture, chiropractic adjustments, decompression & physical therapy. All of which is covered under my insurance, up to a point. For example, insurance only pays for 24 physical therapy & chiropractic sessions and the doctor was very confident that I needed the full 36, so what did he do? He waved the fees for the remaining sessions! All $3000!!
Anyway, I'm about 16 sessions into my program and have noticed some improvements. I'm really going to keep at my home stretches. I would love to be able to knock some of the meds off my list!
Okay, well, that's all for today. I'll leave you with some pictures of my spine.

10 years, NEW LUNGS, Stress, and TONS of LOVE!

This post may be a little scattered because, well, my mind is. I've been meaning to post a blog for awhile now and tonight I felt extra inspired to do so. So, where to start.

10 years:
March 27th, 2015. My 26th birthday. 10 years since I lost my very first friend to Cystic Fibrosis. 10 years that I've been working to raise awareness and money. She is the reason I am, who I am. For my 10th year doing the GreatStrides walk for Cystic Fibrosis I raised roughly $1200!

NEW LUNGS:
Now for the big news! As many of you know, my best friend, "Mebsie" received her double lung transplant. On 5/28/15 (surgery went into the wee hours of the next day) It was exactly one week ago (minus 1hr) that she was wheeled into the OR. It has been a CRAZY emotional ride, and it's just the beginning. Mebsie has made tremendous progress, and I couldn't be more proud of her. She hasn't even had these lungs for a full week and she's already been sitting, standing and walking. She's already had 2 chest tubes removed. She's got color in her cheeks and power behind her voice. She is still very sleepy and in quite a bit of pain, she's still unable to eat, she's still feeling pretty miserable; but this time, it's not because of Cystic Fibrosis, but because she's healing. And soon, she'll be doing things she never could before. Soon, she'll be living the life she deserves. I'm honored to be her friend.
Mebsie will have a massive amount of bills that go along with this new life, if you wish to donate, Click Here! And don't forget to sign the guest book!

Stress:
In about 12hrs it will be one week since I "moved in" to the hospital to be with her. One week of sleeping (or not sleeping) on uncomfortable pull out chairs, one week of extremely overpriced ($10-20 per meal) and mostly unhealthy food, one week of not being able to properly elevate my swollen feet, one week of stress, anxiety and crazy nerves, one week of a single small shower shared by ALL caregivers, and one week of unrelenting back pain. Now don't get me wrong, I wouldn't change it for the world. I'd do it all over again in a heartbeat. My desire to be here for my best friend trumps all these minor inconveniences.

Tons of Love:
Due to the everything listed in the "stress" section, I did finally have a slight breakdown yesterday, and reached out to my friends (and a caregivers support group) for support. But in the hours following I was met with an unexpected outpouring of love that literally brought me to tears. I had friends send me money, to help me pay for food. I have a friend bringing me some extra clothes tomorrow. I had a perfect stranger, bring me Dunkin Donuts coffee and munchkins this morning. She had been following my updates on Mebsie in the transplant support group and was here visiting her husband, so she brought me breakfast. I had another friend pay for my dinner and have it delivered to the hospital. (it was delicious btw) I have 2 other friends assembling care packages. Another one bringing home cooked food. And yet another offering me a bed for a few nights. I have never in my life felt more loved and appreciated. I honestly couldn't (and still can't) comprehend it. So thank you all, from the bottom of my heart.

 CF walk day. (5/17/15)

2.5 days post op. (6/1/15)

More stuff from my brain

I just have a few things on my mind.

figured I'd write them somewhere.

first off. Mebsie is here, for my birthday. On Monday we went up to Conneticut again, to see Melissa & Emily. I know I had said that I wasn't going to go back up, however Melissa had to be moved to a facility because the home care nurses were unable to control her pain. The facility is much closer to me (1 1/2hrs) and its also about 10mins from Emily. So we had a nice day.

yesterday was my 23rd birthday, meaning I am now 21yrs past expiration date, lol. (I was not supposed to live to see 2) I had a pacemaker check in the morning, battery has 1-8 months left on it. The rest of the day I spent in bed. I was super cranky, and not feeling well. I did get a bunch of camera accessories & a gift card for a massage, which is awesome.

I leave for the condo on April 3rd, I'm excited to get out of here again. I'm really wanting to go on a road trip but right now my mom doesn't want me to go. I'm frustrated. I hate not doing anything with my life, but I've been told I'm not mentally stable enough to survive in the real world yet.


there is more, which I'll get back to later....

Update on my life (cindy)

I really don't know where to start.
I was sick from Thanksgiving till New Years.
in and out of the hospital a few times.
most of you already know the details on my hospital stays so I'm not going to go into that. My last hospital stay ended early January, after being discharged I basically moved into the ICU waiting room at Columbia Presbyterian in NYC. I had to be with Cindy. I spent countless days and nights at her bedside. tearing my heart apart by the minuet. watching my best friend go through this. it was more then I can even explain.
I always imagined she'd get her lungs in time. I wasn't prepared for this. I......I will get back to this blog later.

TO BE CONTINUED...


Resuming:

I always thought she'd get her lungs. losing Cindy was never an option. never a possibility. I knew she had CF, and I knew her life would be shortened. but it was not supposed to happen now. she was supposed to get those lungs. she SHOULD have gotten those lungs. I blame the Hospital in so many ways and due to my emotions, I am going to write them all out.

: They waited FAR TOO LONG to list her, they kept giving her excuse after excuse. they waited until she was on her death bed before a doctor from St.Joe's called and told them to get their fuckin acts together.
once listed she got a few false alarm calls. One of those calls, SHOULD have been hers. The donor family consented to organ donation, but the decided they didn't want to donate the lungs. for God knows what reason. I was beyond furious. once she was in the hospital, dying, they chose to put her on ECMO, and put in a TRACH to help her breathe. Cindles began having seizures and was taking a long time to wake from sedation. so the ingenious hospital decided she was no longer fit for transplant due to minimal brain activity. Even though the girl was still squeezing my hand, and saying that she wanted the transplant.


I was not prepared for this. Seeing her that way. Being there, Holding her hand, crying with her family.
hugs. prayers. tears. whispers. love.

I spent 2hrs talking to her from 4am-6am the day we lost her. She shared some of her wishes, and planning things we would do in her honor.
holding her hand and watching her slip away. was the hardest expirence of my life.
I'll never forget her. Ever.

Breathe Easy Cinthia
8/17/89-1/12/12

Lungers Playdate

So yes!
the long overdue blog post about the exciting day I had on the 19th of Feb.
LUNGERS PLAYDATE!

A bunch of Lungers collected at my house, we mingled, and talked, and other exciting things. lol.

then we went to visit Cindles in the hospital! armed with balloons and gifts!

then we went to TGIF and that was awesome. we're obnoxious! LOL our waiter was fun!
Laura & I danced with an old dude. Dylan made a mess. Mebsie wobbled around lol.
and Daniella jumped on my back and surprised me!

after dinner & a few drinks we went back to my house. Patti unfortunately had to leave then.

Dylan & Laura stayed a bit longer :)

and of course mebsie stayed for a few days!!

overall, it was fun!

now for a few pix,

(theres lots on facebook)

Excitement Overload

Where to start where to start?!

I'm selling purple CF wrist bands that say "Breathe Easy Cure Cystic Fibrosis"
$3.00 each! message me on facebook for more details!



I'm also selling Scentsy! Check it out!
Its awesome stuff! Much more fiscally responsible than a yankee candle as they last much longer and the fillers are only a few dollars. they're flameless, there hundreds of warmers to chose from, and over 80 fragrances.




Work has been absolutely insane lately! I worked th past 4 nights. 3-11:30pm. last night I worked 1-11:30pm. and we were short like 3 nurses.

Friday was an unpleasant night, it started out with us calling a Rapid Response at 3:30. thus pushing us back about 2hrs. The family of this person hadnt been fully educated on what "DNR" meant, so they were following the nurse around all night. Finally when his blood pressure got around 40/30 she had to explain to them that he was going to die. and he did. right at the end of the shift. I cried. Its never easy to lose a patient. Especially when they are so loved by their family.

Saturday wasnt too bad, it had its crazy moments, but overall, a decent night.

Sunday night we had this woman come up from the ER. from the moment I saw her I knew it was going to be an interesting night. she was fussing and screaming. turns out this little old woman was 90 yrs old. and God Bless her! she put up some fight! If I have that kind of energy when I'm 90 that would be awesome. but anyway. It took myself, a male tech, a nurse & a house doctor, and 45mins later we finally had wrist restraints on her. It took about 12 attempts before we finally got her BP too! unfortunately she was very confused, kept carrying on about dogs coming down from the ceiling and such. I must say though, thankfully she was in for dehydration, because if not, we would have been covered in spit! We all walked away with bruises from being kicked and punched, and scratches from being bitten and clawed at.





And last night we (Monday) had a man detoxing, and I've seen him sober, and hes really a nice guy, but holy hell, when he is detoxing! I ended up having to call Code Grey (security) and like 6 big muscle dudes had to come hold him down so we could restrain him for his own safety, as he cant ever stand up without falling over. and he pulled out his IV about 4 times, and trust me, getting an IV in a man who just wants to flail around is no easy task. and his flailing and desire to get up lasted the entire 10yrs I was there.


ALSO!, this weekend I've organized a 'Lungers' playdate! lots of my lovely CF friends are coming out to spend the weekend! I'm totally psyched!!


And finally, dont forget to sponsor me in this years greatstrides walk for CF!!

(I'm also selling Tshirts for Bush's Team Breathe!)

Emotions

So much is going on in my head and my heart. I'm not sure where to start really, so I feel I'll just ramble. Deal with it.

It seem like people are dropping all around me. with the most recent being my own uncle.

its causing regressios in my depresion. I've been feeling the need to cut again.

I'm moody, irritable, lonely all the tme, never hungry or starving, I havnt slept in 4 days. I'm having problems at work. I dont know what to do anymore.

I'm losing it. I've got an increase in my anti depressants and a new sleep aide. but this sleep aide is Ambien, and I'm afraid to take it.

I've been having palpatations, I shake all the time, I cant breathe, I feel like I'm going to break.

I'm scared.

My shrink basically told me I need to pull myself together because I'm not the only one in my family that needs support (I.E. my grandmother and my mom)

I know that, I understand that, But I cant help it. I'm cracking. I want to cry all the time.

I feel like my friends dont want me around.

the only people I've been able to talk to are Mebsie, Maria and Daniella.

I cant deal with people and their rumors and lies and drama.

I just want to get away from everyone.

But I cant.

Help me.

Someone. Help Me.

I'm not "ok" stop asking.

No, I'm not okay. No, I'm not going to tell the whole story every time someone asks. so here you go!

I'm kinda going through too much right now to deal with everyone wanting to ask whats wrong all at once, so just read this.

On Saturday, my 21st birthday, a CF legend died. Eva M.
Rest In Peace Eva. Breathe Easy Angel.

On Monday, my uncle died. Leaving behind my 17yr old cousin. <3

after that all the days start blending together.

I hit a bunny on my way home from work, and cried.
I had a nightsweat caused by one of the meds I'm on mixed with the high level of stress I'm under right now. and when I say nightsweat, I mean like. climbed out of a pool wearing all my clothes and got in bed. Have to change the sheets, type of nightsweat. This nightsweat proceeded to ruin my brand new Ipod touch that I got on saturday for my birthday. I got a parking ticket for parking infront of my own house, on a side street that no one drives on unless they live there. Not that I could have avoided it. Theres a huge dumpster in my drive-way for the useless construction workers. Along with my mom's fat assed car. and my grandma who is down planning the funeral for my uncle. and I cant park next to her because that leaves a foot between my car (with the door closed) and the brick wall. which is fine for me to get out, but my dad is the one that has to move the car in the morning so he can get out of the garage.
thankfully my amazing best friend is going to have her step-dad try to get rid of the ticket for me.

now, moving on.

last night at work, I had two meltdowns.
I was already in an aweful mood when I was leaving for work (how could I not be)

As soon as I got to work I saw the name of a certain nurse on the board, who was going to be working on my side. and I was like NOOOOOOOOOO!!!

anyway, as I was writing the names of the nurses next to the room numbers on my papers so I knew who to get report from. the woman walks up behind me, takes the papers out of my hand and goes "I need my vitals"
I'm just like.............-blank stare-

Later shes like "Katelyn where have you been, I've been looking everywhere for you, You need to get vitals on the new ER, and strip the bed of the discharge"

I had been sitting at the computer at the oncology nurses station, putting in my vitals....plus. its not that hard to hit the page button and say "katelyn can you come to the nurses station?"

anyway, as we're walking down the hall we see that another nurse has already stripped the bed. and she goes "oh it looks like NURSE B is doing your job for you"

(like seriously wtf)

a few mins later she comes and finds me again and goes "well! the patient in the room you just walked out of was sitting in a dirty diaper, the daughter came and found me and asked me to change her"

(when I walked out of that room, 3mins earlier the daughter was all smiles and said "thank you" as I walked out. the fact that she went to find Nurse A, insted of telling me, is not my fault)

the night continued to go on like this, but I dont really feel like typing all of it.

at one point Nurse C came up and was like "uhhhm Katelyn I need you to stay up front because some of the nurses were looking for you and couldnt find you"

I'm thinking dont you mean "Nurse A didnt have me kissing her ass for thirty seconds and freaked out"

Like seriously, I know the nurses have alot to do, but she had 7 patients, I had 16. I'm reporting to 3 nurses. not just her. she needs to freakin chill. and learn some respect.

So finally I called her aside and I'm like "look, is there something I'm doing that you just dont like? because it seems like you're constantly looking for something to call me out on."

and then she went on a rant about how she doesnt think I have a routine, (which is bull) and yada yada yada.

Anyway, Like I said.
I'm kinda going through too much right now to deal with everyone wanting to ask whats wrong all at once, so...now you know.


on the plus side, My awesome friend Mebsie is coming for the weekend, and my BFF Daniella will be home for the weekend also. which makes life better. Cant wait!

I'd also like the thank my new friend Little Hug for helping me through all this



(my adorable present from Megz that came at just the right time)



~!Breathe Easy!~