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)

Be Bigger Than Yourself! (and an update)

So, it has been a long, LONG time since I did a blog.
A ton has happened, most of which I'm not really going to get into because it's old news.
Short version: got referred to another hospital for my cardiac issues, found new heart problems, started new meds, increased those meds twice, if I increase again I'll be on the max dosage and then will be looking at surgery because my problems will continue to increase over time. I am officially on disability after over a year of fighting for it. I want to move out but realistically can't afford it, not if I want to stay in NJ (which I do). I stopped my mood stablizers due to side effects. Without them I seem to have zero motivation for anything and it's starting to bum me out. I haven't been able to travel due to my dog's health. He is 14+ years old and his health seems to go downhill if I leave. My last trip was in July, I went to the Transplant Games of America in Texas with a good friend. It was a great experience but my dog didn't handle it well. So I'm stuck home until I'm forced to go to Florida in November. (or until he dies *sadness*)


Now for the fun stuff!:

I am now an official intern for the More Than Just Me Foundation! 
Why? Well because the MTJMe foundation developed something called the Saltwater Challenge. (inspired by the Ice bucket challenge) and yours truly not only participated in it but also recruited the marketing team at the global medical supply company BD to participate as well.  Okay, I can't take all the credit, my mom works at BD.  Anyway, roughly $600 was raised. My mom also applied for company gift matching, and it was approved. So all in all around $1100-1200 was raised. I was contacted by the founder of MTJMe with the opportunity to become an intern for them, and of course, I jumped right on that! We all know I bleed CF awareness. MTJMe focuses on raising awareness for multiple causes including helping the homeless and Cystic Fibrosis. I'm super proud to be a part of the awesomeness that is MTJMe!


Things to check out!:

My Saltwater Challenge video!

The BD Marketing Team doing the challenge!

Chronic Fever

So yeah, it's been awhile.
I'll make this short.
I've had a low grade fever ranging from 99.9-101.7 for the past 2 month.
I've seen about 5 doctors.
I've had blood draw after blood draw, 9 blood cultures, and a full cardiac work-up.
Nothing.
I have had miscellaneous symptoms but nothing is constant.
Dizziness, palpitations, random weight loss, chills, sweats, nausea, vomiting/diarrhea, fatigue..ect.
I've been put on 3 different antibiotics, all of which were stopped because there was no change, so it's best not to stay on them.
The one thing I do know is that I'm not contagious, and I'm not dying.
So yeah. The end.

Sarah needs YOUR help!

"I'm not going for easy, I'm just going for possible" 

- Janet Murnaghan. (Sarah's mother)

This beautiful, brave little girl is Sarah Murnaghan.  Diagnosed with Cystic Fibrosis at one year old, Sarah, now at only 10 years old, is dying.  She is in desperate need of a double lung transplant or she will die within weeks.  Sarah has been listed for over 18 months, as pediatric lungs are very few and far between.  The only thing standing in her way is a UNOS rule (United Network for Organ Sharing).  This rule states that while Sarah can be listed for adult lungs she may only receive them if all other adults/adolescents (over the age of 12) in the area turn them down, regardless of how sick they are.

Sarah's parents and supporters are fighting to have that rule changed.  They are not looking to take lungs from people who are sicker than Sarah, they just want to give Sarah, and other children, a fair shot at survival.  If Sarah were just 2 years older, she would, most likely, have gotten her life saving transplant by now.

Sarah's story has been taken up by many news channels, here is just one of the interviews. 
Another news story


Ways you can help: 
Sign the petition!

SHARE her story! 
Facebook, twitter, word of mouth, they all help. The more people we reach, the better the chance that we get this rule changed!

and of course,
Register to become an Organ Donor, today!


Click here to learn more about Cystic Fibrosis!

it's been awhile..

I suppose it has been awhile since I last posted. I'm not really sure what to post, things haven't been good.
Going through a lot of physical and emotional struggles. I've been doing physical therapy for my back, this should be the last week of that actually. Mentally I'm not really sure if I can fully put into words at this time. But to sum it up, I've been feeling like a total and complete let down to my family. I feel like they drew the short straw, got the raw end of the deal, that type of thing.
yeah, I'm done for now. just wanted to post something.

Momma Duck

just a quick recap of what has been going on with my mom. in no particular order. (and grammatically incorrect lol.)
I also have no idea why the hell it keeps posting with the white background thing. GRRR

Mom had been sick for 7 weeks with pneumonia. she ended up in the hospital.

they still don't know what she has. they do know it's NOT contagious. they sent samples of everything to a few different places (CDC..ect)

but she saw 3 different pulmos and they all had the same reaction..."wow" and my mom was like "is that a good wow or a bad wow?" obviously it was a bad wow.

her sats had been stable and then one day they randomly went to the low 80s on 2L of o2. so they did a bronch and sucked out over 3 cups of mucus. when I met with her pulmo (the one she ended up staying with) I asked about different diseases/conditions and tests and results. he actually said the words "you know too much" after he left my mom goes "okay..what did you say and what did he say?" he actually said the words "you know too much".

once she was "stable" her docs decided it was safer to send her home to be in my "fully capable hands" than to have her stay there and risk contracting another infection. if she gets sick again in the next few months it could end really bad. I had to order her a HEPA filter mask for if she leaves the house (for dr appointments and such, also for when the construction starts on my house (from hurricane sandy)) she's not allowed to go Xmas or grocery shopping, or anywhere with big crowds without her HEPA mask. and I went over the house with the pledge & antibacterial wipes. she's always had a pretty non existent immune system (respiratory wise). and no one really knows why since her blood cell count is fine. years ago her doc told her she had Chronic Bronchitis (a type of COPD) but her new pulmo said that was unlikely since she never smoked. although when he did the bronch he said it did have the appearance of COPD. (you can now see why my health is so stubborn lol)

anyway, the doc said it will be a few months before she even starts to get back to normal. =[

 so yeah, that's what's going on with momma duck.

P.S. funny story.

my mom wanted a mask attachment for her neb so she can read while she does treatments. so my dad, trying to be helpful, went to the pharmacy and got one. my mom comes into my room later and goes "dad got me a mask for the neb but I can't seem to figure out how to get it on" I go upstairs and look at it. Silly daddy got a Pari mask which doesn't fit on regular nebs. my mom turns to my dad and goes "I appreciate the effort hun, but leave the lung stuff to the kid"

I love my family