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.

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!

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 

more pacemaker drama & vacation

So as you all know, my pacemaker is dying, and I've been fighting with the docs/insurance companies to get it changed.
the insurance companies like to wait until the last min (when the pacer goes into safe mode)

well I had a pacemaker check scheduled for June 19th. and my genius ass missed the appt. so I called them later that day to reschedule. we ended up rescheduling for yesterday. and (as I suspected) they decided to tell me its time for surgery, the battery needs to be replaced. well of course they tell me that then. because I was scheduled to leave for FL this morning.

anyway, these are my posts from yesterday:


"I KNEW this was going to happen!!!!!!!!!
the but NO! they wouldn't listen to me! 
pacemaker people said I need the battery replaced! 
and of course I leave for FL tomorrow morning. or at least I'm supposed to! 
UGGGGGH! they're gonna call me back in a few mins to let me know if I can still go!"


&

"UPDATE:
I officially CAN go to FL, however,
no matter what I do (in her words) "you could run a marathon and your heart rate wont get over 65"

so basically I'm not allowed to do ANYTHING remotely strenuous. wheelchair in airport. no beach walking. no kayaking, no swimming. nothing =\ which kinda sucks. but at least I can go!"

Recap: battery is in safe mode, meaning HR wont get over 65, and it is only pacing the ventricles (usually mine paces the atria as well) 

I can't really do anything physical 

my appointment with my electrophysiologist is scheduled for the 17th. and he'll probably schedule the surgery for the next day. I also still have my heart monitor on 24hrs a day for 2 more weeks due to the A-fib. 

but I'm here in FL now. so I'm a happy duck!

Cardiac Update

So today I had a cardiologist appointment.
Found out quite a few things,
1. my atrial wire is NOT shot!
2. still cant change pacemaker.
3. I'm having major A-fib.
4. med changes are needed.
5. surgery will be same day :)

So we are setting me up with a heart monitor, and starting a few new meds. one of the meds (anti-arrythmic) I need to be hospitalized for a few days to start so we'll plan that.
another med is baby asprin, which even though its a tiny, tiny dose, I'm still nervous about because as some of you may remember, I had quite a problem with asprin once before.
ambulance, liver failure, kidney failure, lost my hearing, landed myself in ICU for a few days. but I think it will be fine. I'm just nervous.
I will also be starting another medication to maintain an even pulse.

in order to start the first one, I need to come off my mood stablizer. so I started decreasing that today, and will stop it on tuseday. Not sure what they'll put me on in place of that. but I suppose we'll figure something out.

I see my cardiologist & electrophysiologist on the same day, in 6wks. after my 30 day heart monitor. so hopefully by then we'll have figured out what meds I'll be taking.

June is a busy month for me, and I need to be feeling my best. so fingers crossed everything gets fixed! lol

the endddddddd.

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

Hospitalization

Hey all,
as many of you know, I've been in the hospital since Tuesday.
Past few weeks I've been feeling worse and worse. finally after a bit of nagging from my friends, mom & boyfriend I decided to go to the ER. didnt plan on getting admitted. but I did. not long. 3 days. it wasnt bad (except the food was horrible).
the room was amazing. the nurses, techs & phlebotomists were good.
I did flip shit on one doctor (new guy) who was completely arrogant, and WRONG! lol.
he kept avoiding my questions and then tried to explain something about a pacemaker to me. and he was dead wrong. which made me mad. so yeah, I yelled. and stormed out of the room. I didnt see him after that lol. a different doctor came in the next day, he was great, answered all my questions. gave me the names & numbers of a bunch of new peds cardiologists. and a new pulmonologist. also gave me some new meds and put me on nebs Q4hrs for the first few days, then Q8. then once daily. then as needed.

so yeah, initially they thought it was congestive heart failure. which thankfully it was not. I do however have bronchitis, and fluid around my lungs.

which means antibiotics, nebs, & water pills! OH JOY!

anyway my BF rocks for taking me to the ER, staying with me for hours, picking me up, and babysitting my car. (on top of the fact that he just rocks in general!)

Cardiac Update

Just got home from having my pacemaker checked.
They say my battery has another year on it, but then again, last time they told me that, I was on the table 2wks later!
they Also saw an increase in arrhythmias, I've had 13 since the 28th of feb.
and although they dont last long (usually about 2mins), they're actually affecting me. I'm always tired lately.
my pacemaker has been switching modes more often too.
(10 times, in the past 3 days) this happens when my heart rate goes up to 155+
(which it should never do) so yeah, they had me in the chair for over an hour,
called in the doctor who was there. who proceeded to call my doctor.
and suggested a holter monitor. yet again. I also may be switching hospitals!
which is exciting. *claps* anyway. thats about it