Wednesday, April 28, 2010

Trying to put it into words...

I’ve always found it hard to put into words how CF affects me, the spouse; how I look at things…how I struggle in my own different ways... I recently found the proper words in a blog that I found written by Tiffany Christensen. Tiffany had 2 double lung transplants due to CF and also wrote a book that I am reading now call Sick Girl Speaks!. So, here’s how I feel, like it or not:

“Loving someone who is sick brings with it a profound sense of powerlessness. You watch them wince in pain or curl up in their suffering and you have no remedy…”

“Nurses and doctors come and go with news, medicines, and the potential for answers while you struggle to keep track of the often-changing picture of illness. You struggle to hold your life together in the "well-world" while giving all of yourself to the one in the "sick-world." As you straddle these two different landscapes, sometimes it feels you can never do enough, say the right thing or find the strength to sustain the complexity of this life. You look around at your life as a caregiver and wonder how you will find yourself…” Christensen - 3/28/10

Sunday, April 25, 2010

~~~~More Musing from the Spousal Unit~~~~

Well, we made it through the interview process at Columbia Presbyterian on April 23rd, which reminds me, March 23rd was when we had our 1st and hopefully last dry run. The drive in wasn’t too bad and we made it there in about 1 ½ hours (~abiding by the proper speed limit, naturally~). The center wants us to be able to get there in 2 hours.
We first met with the financial coordinator in a small conference room (we likened it to an interrogation room). Of course, I had to take a picture. Not everyone is lucky enough to experience it!

The financial coordinator confirmed Jim's medical insurance benefits and discussed what medications are typically used post-transplant. She said that a majority of the medications are generic so that is financially helpful.

After that, Jim got vitals taken (blood pressure, weight etc.) and then headed to met with the transplant coordinator. We weren’t completely thrilled with her but I’ll leave it at that. Our fellow CF bloggers know the rest...

Next, the Pulmonologist (Dr. Shah) met with us. She has an excellent bedside manner and we were quite impressed. She discussed how the process works starting with the initial notification the hospital gets for a potential donor to the healing process. The typical time spent in the hospital post-transplant is anywhere from 14 to 21 days. I’m sure Jim will be out of there in record time! We also discussed the additional tests that need to be done before getting listed. Jim will need to get an exercise test on a bike and psychological evaluation. I will leave it up to you guys to comment on the psych eval. ;) We were also told he should get some vaccinations, dental check and eye exam but it didn’t sound as if those things would preclude Jim from getting listed.

Dr. Shah asked us if we wanted to talk to a surgeon so we decided to wait for him/her. While waiting Jim went for blood work and I dozed off (gotta’ take care of me too). 2 needle sticks and 16 vials later (seriously, 16 freakin’ vials!!!) we were told the surgeon didn’t reply back to Dr. Shah’s request to meet with us so we decided to head home.

This is when it gets interesting…while walking back to the parking garage Jim checked Facebook and saw that our CF blogging friend (Piper) received a call from Columbia. They wanted her to come in because there was a possible donor for her. Is that why we didn’t talk to the surgeon? Who knows, but if it was for Piper’s sake, we’d rather her get her lungs than see the surgeon!!!! Later we found out that when Piper got to the hospital she had a fever and a high heart rate so they turned her down. Grrrrrrr….the joys of transplant! Please, please, please keep Piper in your thoughts too!! She’s had about 5 dry runs in, I believe, the past month.

As usual, thank you all for your support and comments. Jim and I appreciate it!

Cheers! Denise

Wednesday, April 21, 2010

Back to mainline....

Well Picc insertion is set for 12:00 today. Going to do Tobra and Aztreonam again, same as a month ago, and stay on the oral Zyvox for the remaining 5 days. I got my last good night of sleep and full shower in for the next few weeks. I do look forward to starting to feel better and hopefully for longer this time. As many have noted the main thing now is to try and stay in as good a shape as I can for as long as I have to wait. Better to be in my best possible shape prior to transplant.

On a positive note Jess is out of bed and walking post transplant...way to go Jess! Steph has her chest tubes and staples out now and is putting some serious miles on those new windbags...Way to go Steph too!!

My other transplant friend Piper is still hanging on and working it out while she waits, much like myself....Our time will come, no doubt!

Monday, April 12, 2010

Good while it lasted...

Well I have been IV free for a few weeks now and have tried to take full advantage of it. I got a ton of outside activities in , even rode the lawn tractor around a few times to cut the grass (with a mask on) and of course drove the M around as much as I could. Denise and I took the opportunity to go out for some fine dinning a few times and I even shared in the grocery shopping duties for a change (smile). I was down to visit the CF team at Morristown Memorial last Tuesday, my weight was good at 158, but my lung functions were surprisingly unchanged at an FEV1 of 24%.

It was a really nice break, but now it's no more CF maintenance plan and back to the real active CF infection world.

Saturday morning I was coughing up some blood (only a few table spoons) and was short of breath, but it passed. Yesterday morning I woke up early and very achy and not moving much air, so I got up and took some Advil and relaxed on the couch. I kind of laid around most of the day other than going to Lowe's with Denise for a quick trip and then more rest, at about 5:00 we went to Callahan's for a cookout, but I was not feeling very well and came home. At about 8:00 I took a shower and then proceeded to alternate between chills and sweats for the rest of the evening my temp was 100.1 when I checked it. I slept in this morning till after 10:00 and no fevers so far today, but have a dull ache in my upper right lung. Being the astute student of CF I am, this obviously all leads to the need for antibiotics (35 years of CF knowledge not gone to waste :)..I was diagnosed at 5).

So I fired a message off to Paula and the word came back that Dr Fiel was thinking back on IVs again already. I called back to try and stave off the Picc for a little and we agreed to try some Oral Zyvox first. So day 1 of Zyvox begins today.

On a very sad note last Friday we had to put our cat Phoebe down after 15 years or so with the family, sad sad day...I miss her everyday, and really notice it at times especially like now at breakfast....she always liked to have a little milk after my cereal

Saturday, April 3, 2010

~Musings from Tuesday’s Dry Run as Told by Denise a/k/a ‘Nisey~

It’s about 4:05 on Tuesday, March 23rd and I’m at work as usual. I’m a few feet from my desk and hear my phone make a bleeping noise. Hmmmm, I've got a text message. I casually walk back to my desk, pick up my phone and see a message from Jim: “Come home now!!!!...penn” My first thoughts were - ‘What the heck is he talking about????? He would have called me if Penn told him there were lungs!’ I called his cell, the conversation went something like this:

Denise: What’s going on?

Jim: Penn called.

Denise: Yea? What’s up?

Jim: Get home now!

Denise: Why?

Jim: Hold on a second.

Denise: I’m not holding on!!! What’s going on? (I found out later that he was still on the home phone with Penn asking them to “hold on”)

Jim: ‘Nise!!! They’ve got lungs!!!! Come home now!

Denise: Ok, on my way now!

I get off the phone and look at the girl that sits next to me and say “Hmm…guess I’m out of here…”

I drove home in record time, got additional stuff packed, said goodbye to the dogs and cats, and we were out. Got in the car and realized we needed gas so we stopped at WaWa. Mental note: keep gas tank at ¾ full at all times!

On the ride to Philly I was texting rapidly to friends and family while Jim was making phone calls. We also kept reminding ourselves that this may not be it. It could be a false alarm. Really though, how can someone not get the slightest bit of excitement??? This would be an awesome life changing event for both of us!

After Jim finished with his phone calls I told Jim that I had a really weird feeling that I remember having once before but couldn’t place what it was. I thought about it for awhile and realized that it was the same feeling I had before I walked down the aisle on our wedding day; a feeling of unknowingness of the journey we are about to enter. The only way I could describe it is like having happy butterflies in my stomach.

So, we arrived at Penn, drop the car off and head straight to Admissions.

While all of this was happening we were both getting text messages with good wishes, prayers and a phone call from my friend Andrea (***thank you all for that***).

After filling out paperwork and providing insurance information,

Jim got his hospital bracelet...

...and the admissions person proceeded to tell us that his room is on the 12th floor. As she began to give us directions my cell phone rang. It wasn’t a familiar number. I answered and it was the transplant coordinator asking for Jim. I handed the phone over to Jim thinking that they were calling to see where we were at, nothing else. Then I hear Jim saying “You’ve got to be kidding me…No way…I can believe this”. The surgery was canceled...the donor aspirated into his lungs… **sigh** :’(

Man, I felt like we were on an episode of Grey’s Anatomy! This is just freaking messed up!!! This really cannot be happening!!!!

We were in no rush to get home; it was rush hour. So we walked to the gift shop for a drink. Unfortunately they do not serve hard liquor in a hospital gift shop! After the gift shop I stopped in the bathroom, sobbed for awhile and came back out…trying to stay as tough as possible. We were both hurting real bad. Words cannot express the feeling of loss I felt. I mourned for the donor family…I mourned for the life that I envision we will eventually have.

There will be a post that says Jim got his new lungs and is now breathing easy! Until then, we’ll just hang tough (or as tough as possible).

Love you all,