Wednesday, February 23, 2011

OUTRUN CF in your backyard!

Some new things:

#1:
Jim is returning to the workforce on Monday!

#2:
I'm back in training and will be doing the Out Run CF-Virtual Run! The walk/run/stroll or whatever it is that you care to do is on 3/20/11 and the track is wherever you decide to have it. Pretty flexible, huh? Yes, yes it is! The official event will be held in Grosse Ile, MI.
I know this is last minute but I would LOVE to set up a team here in Bethlehem, PA to get out and show awareness and Out Run CF!
So...who's with me?
Leave a comment with your contact info and we'll work something out! If you cannot join me and wish to make a donation please let me know!

Here are some details:


Registration Closing Date

Saturday, March 19, 2011 @ 11:59 PM, AFTER MARCH 1-NOT GUARANTEED A TEE SHIRT BEFORE THE RACE.

Brief Description

The RocK CF Foundation and CysticLifeare joining forces to Out Run Cystic Fibrosis and you are invited to help! If you are not running the Rock CF Rivers Half Marathon or 5K March 20 on Grosse Ile, MI but you still want run with us, this is YOUR race! On March 20 you will find a route or race by your house, lace up your joggers and hit the road in your Out Run CF shirt.

Join over 100 others across the country that are Outrunning CF in their hometowns on March 20th. It only costs $20 - you get a cool "I Outrun CF" shirt and proceeds go to immediately impact the lives of people with CF!


Tee Shirts

We cannot guarantee an Out Run CF shirt for race day if Registration is after February 25. Shirts will be mailed after if this is the case.

Check us out on Facebook!

http://www.facebook.com/pages/Out-Run-CF/164020056961598

Additional Information

You choose the mileage. 1 mile? 5K? 10K? 10 Miles? Half Marathon? Marathon? It's up to you! Nothing is too short or too long, too fast or too slow. REGISTRATION AFTER MARCH 1-NOT GUARANTEED A TEE SHIRT BEFORE THE RACE. Report back to us at CysticLife.org!

Check us out on Facebook!

http://www.facebook.com/pages/Out-Run-CF/164020056961598

Check this blog out! Dax of San Diego, CA will OUTRUN CF! So far 34 states are represented!

And here's the shirt. I love it, it's comfy and not black. Black shirts with yellow labs don't always go well together.


I started running last year because of the anger and anxiety I was having while Jim was on the transplant waiting list. I never ran a day in my life before that. I ran my very first 5k last July. I sturggled to finish the run because while in training for it Jim got his real call for transplant. Here are my blog posts from that time:

http://fahrjr.blogspot.com/2010/07/5k-tommorowbecause-i-can.html

http://fahrjr.blogspot.com/2010/07/beautiful-day-for-walkrun.html

#3:
Jim had his appointment with the nephrologist today. They will be doing an intrajugular biopsy to determine what is going on with his liver. The MRI showed that his liver had some nodules but they do not use the MRI as a diagnostic tool. So, in a few months he will have that test done. The nephrologist doesn't seem to concerned with things. All of his lab results have actually gotten better since his transplant. Friday he will be having a bronch.

Thank you donor and donor family!!!
To become and organ donor click here.

Sunday, February 13, 2011

Home and ready for some "NORMALCY"!

We got home yesterday evening after:
- My 8:30am abrupt wake up call/evacuation from the hotel. Ummmm...I was on the 17th floor and my calves are now killing me from going down 17 flights of steps. Thankfully it was a false alarm and I was able to take the elevator back up to my room.
- 2+ hour wait for doc to finish up the paperwork for discharge. Anyone know why it takes so long???? Last time we waited at least 8 hours for the paperwork.
- Getting the car jumped. Yep, finally discharged and the getaway car won't start! Thankfully, Jim's dad was there to help us out and follow us home to make sure we didn't have any problems getting there.

That evening ended with Jim breaking off the key in our back door.

Final diagnosis: gastroparesis, pancreatic cyst and fibrotic liver. Plan: meet with pancreatic doc to discuss cyst. Keep an eye on the liver (don't know who he'll see for that) and follow up with tx pulmonologist. Reglan for gastroparesis and Zofran as needed for nausea. He missed his bronch on Friday so he'll need to set that up soon. Lungs, sound great!

My day today consisted of sleeping in, a visit from my parents, trip to the drug store for Reglan and Zofran and then to Wegmans for groceries. After that I did a little cleaning and am now watching the Grammy's. I always find that for a few days after Jim comes home to be the most stressful. I think I try to keep everything together until it's calmed down then I have a bit of a breakdown. Any other CF spouses or family members have that happen to them? Same thing happened after his transplant. I had a few weeks of a Chron's flare up once everything settled down with him.

I am ready for "normalcy"!!! Consider everything OK if you don't see posts for awhile. I need to focus my energies on something fun and put this health stuff in the back of my mind as much as possible so I can keep on keepin' on.

Donor and donor family, thank you! Regardless of any of this crap, Jim is still here and we can enjoy a much better life together because of your selfless gift. For that I am extremely grateful!

Friday, February 11, 2011

Cyst, MRI, fluid, liver fibrosis, needles and other fun stuff...

Jim woke up in painand was nauseous this morning so we are still here. The MRI done last night showed that the pancreatic cyst IS still there, his liver is fibrous (common occurrence for a CF'er) and that he has fluid in his abdomen. The docs wanted to find out if the fluid was an infection so a procedure was planned for a needle aspiration. The aspiration never occurred because when they went to do it, they were unable to find a pocket of fluid big enough that was away from major organs. GI doc stopped by briefly and mentioned LASIKs or beta blockers as a means to get rid of the bloat. We are still waiting for him to come back to discuss next steps. As far as the pancreatic cyst...we have no idea what the plan is. It does seem that the gallbladder is out of the picture, for now at least.
Not much joking going on today, we're both pretty much want to get this figured out and get back to a "normal" life.
Me waiting for Jim to come back from eating his radioactive eggs.


Tomorrow's another day. Maybe we can bust out but he is still having pain.


Thursday, February 10, 2011

Radio active eggs, again.

Trying to make t is a short one. I don't like typing on this iPad. :/
Today consisted of a gastric emptying study and an MRI.
He had to eat radio-active eggs for the gastric study and pictures were taken of his stomach periodically to see how fast the food moved through. The test showed that he is having an episode of gastroparesis. With that diagnosis the doc's recommended at he try a med called Domperidone. Domperidone was pulled from US shelves so we have to purchase it from Canada. Apparently this med is safer than taking the Reglan that I mentioned in yesterdays blog post. He had an MRI this evening and hopefully we will have the results of that early tomorrow.
His diet has been advanced and he does have a bit of pain after eating. They took him off of the Dilaudid (IV pain med) because the last dose he received put a large welt on his arm where the site of his IV is. They are giving him Oxycodone orally in place of it.
Almost forgot. The doc told us today that when we came in Tues. the doc was concerned that it may have been "catastrophic". Thanks for not sharing that info until today doc...i appreciate it but if it happens again I may not believe that the "rapid response" is "procedural".
Hopefully we will get out of here tomorrow!!

Wednesday, February 9, 2011

Rapid Response?

I just deleted a huge blog post so I'm just a bit annoyed. Here is an abbreviated version of the past 2 days.

I woke up Tues am to find Jim downstairs sick, was retching since 2am. I went to work since he was doing ok, just ok. Got a text at work saying "I need you, please". Got home, he was retching and had sever abdominal pain. I called the tx coordinator and was told to come in and she would be getting a hosp bed ready for him. I grabbed all our bags (prepacked since this has happened before) and drove Jim to Philly, docs looked at him and decided to call a "rapid response". A rapid response will ensure that you are sent to a secluded ER room without having to wait in a germy ER waiting room (and also ensure that I get completely freaked out). The docs told us to expect people to be showing up to check him out and transport him to the ER and not to worry. Well... people came from all over the place within minutes checking him out. Docs, nurses and even security! The heads up was appreciated, but it still scared the crap out of me. Thankfully I had Jim's transplant coord next to meet hugging me and telling me it was ok and just procedural. After he was checked out they transported him from the Lung Center, across the bridge and down to the ER (about 3/4 mile away). There were security guards at EVERY turn keeping people against the wall in single file and out of the way for us to get through. It was very impressive to see how well they respond to emergencies. Scared the crap out of me but also comforted me knowing he was in the best place possible should there be something even more serious.

In the ER they put an IV in, took lots o' blood and gave him Zofran (anti-nausea) and Dilaudid (for pain) meds. Within 20 minutes he was comfortable. Once the meds started to wear off he started with pain and retching again so the gave him more. We were in the ER from about 2pm to 10pm when a room finally opened. Not bad considering the last time this happened we were in the ER for 22 hours! While waiting for a room he had 2 abdominal ultra sounds. We had a good time messing with the residents too!

Trying to make a long story short since I wrote this once before...they will be doing a CT scan at some point to check his entire abdomin since they only checked his upper right quadrant when they did the 2 ultrasounds last night. Doc's are thinking that this is the gastroparesis (slow stomach emptying) again and started him on Reglan which helps with motility. The GI doc's awhile ago took him off of it because long term usage can cause bad neurological issues. Now the GI doc's seem to think it may be a good idea to use Reglan when he starts with these issues again, but not as a daily regime. He is still getting Zofran and Dilaudid and is on a liquid diet. We'll see what tomorrow brings. Hopefully it's more productive than today!

Thanks so much to all of our friends and family that have taken care of our dogs and kept us entertained while going through all of this. Love you guys! Just a bump and things will be better!

Quotes:

ER doc: Do you want some pain meds?

Jim: Absofuckingoutly!

Jim while doc was doing the ultrasound: I don't want to know the sex.Just deleted a huge blog post so I'm just a bit annoyed. Here is an abbreviated version of the past 2 days.

This is what a rapid response looks like:









Friday, February 4, 2011

The case of the mysteriously missing pancreatic cyst

Jim had his EUS last Friday and the cyst on his pancreas has seemed to disappear. Yep, it's not there and we have no idea why. Next Friday he'll be meeting with the surgeon to discuss what his thoughts are about the disappearing cyst. Pulmo doc is in no hurry to have his gallbladder out and neither is Jim. He will also have a bronch next Friday.

Funny thing happened when I came home from work the other day...
I didn't see Jim in the kitchen so I looked to see if his O2 line was in the bathroom. What???? He hasn't had that thing for 8 months! Yes, it's been 8 months since his transplant and there are still eye opening moments. I like it though, it certainly keeps things in perspective.

I've been scanning a lot of pictures lately and you can't have a blog post without pictures - right? So...here are a few pictures from 2000 when we went to pick out our Christmas tree at our dog breeders house.