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.

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.

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.