Two Patients

Submitted by Laura on Mon, 10/24/2011 - 4:07pm

Our house now has two patients!  Joe has a lacerated tendon in his hand after a small accident on his weekend camping trip.  We go see the hand specialist tomorrow, but I think he's going to be good as new in a few weeks.  His left hand won't be useable for a good 6 weeks - but should be back to normal after some physical therapy.

Suddenly, our roles were slightly reversed this weekend.  For once, he needed ME to help him get better.  It's usually the other way around!  I got him his antibiotics and ibuprofen, took his temperature, made him hot cider, unwrapped the wound and checked his stitches, looked at his tetnus shot area, helped setup his dinner/eating/sleeping situation (keeping the arm elevated), called the doctor to make his appt. and of course gave him many smiles and "you'll be fine" speeches.  He's pretty much over the initial shock of it all, I think, and now he's falling into a groove figuring out how to do things one handed (putting on socks was a big accomplishment!).  However, all of those things I did are a drop in the bucket compared to what he does for me on a daily basis.

I knew he was feeling better when we went to bed and he was able to joke, "Is this the sick and disabled bed???".  YOU BET IT IS!  Now, instead of 2 dogs between us when we're sleeping, I have a stack of pillows AND 2 dogs.  I don't know how we all fit in a queen bed sometimes.

Oh, kudos to my Mom for also coming to help out by walking the dogs, cooking meals, cleaning up the garden in prep for winter, doing my hand therapy and other misc. tasks to help us out.

A Bag Of Mixed Emotions

Submitted by Laura on Sun, 10/16/2011 - 2:16am

Okay, so I've been REALLY good about not thinking about the actual transplant and not being too anxious about when they're going to call....mainly for one reason.  The doctor said that, generally, I should anticipate a call once my LAS (Lung Allocation Score) reaches 40 or higher.  The LAS is a measure of how sick you are - the higher the number on a scale of 1-100, the sicker you are, meaning you're closer to transplant.

Well, October 10, 2011 is officially the day my LAS score reached 40.  As soon as I read the letter from the procurement nurse, something in my brain switched and I just got really scared, anxious, depressed, excited, sad, relieved and numb all at the same time.  This is making the actual transplant very real for me, whereas before, it was something in the near future.

Just in the past few days, I have found myself thinking about it a LOT more than I have before.  Today, we went up to Milwaukee for a benefit and I thought, "What if Loyola calls right now? Can I make it from Milwaukee to Maywood? Should I have gone on hold from the transplant list for the 4 hours I will be away from home?"  I know I will be anxious every time I leave the house and I am contemplating bringing my 'transplant luggage' with me whenever I leave.   At the gym, I left my phone in the locker room, but now, I will definitely take it with me.

I think I will be fine....the next few days I think I will be a rollercoaster of emotions, just like I was when I first got on the list.  All these 'What Ifs' just don't work in a world where I like control!  I know eventually my stress will ease out, but I wanted to document and share with you all this milestone in my journey.  The day the threat of transplant surgery became REAL.

Laughter Is The Best Medicine

Submitted by Laura on Fri, 10/07/2011 - 2:30pm

I find humor in everyday life and I laugh at myself a lot. Laughing is exercise - it burns calories and tones core muscles, right?  Laughter is positive energy. Laughter brings people together.  Studies indicate people who laugh often and have an active sense of humor have a reduced risk for heart disease, lower stress, stronger immune systems and less pain due to the release of endorphins.  This makes me wonder why more doctors are not literally prescribing laughter as part of regular therapy!

At every appointment with my CF doctor, we find something to laugh about. He spends the same amount of time catching up on my illness as he does my life. I feel like my doctor will remember me after he walks out of the room and that I’m not just another case in the filing cabinet.  Laughter creates a bond and a trust between people, which is just as important between friends and family as it is between doctor and patient. I feel lucky to have found a caring doctor with my sense of humor that I can trust to tell everything to; even in the old days when I wasn’t 100% compliant, the nature to which he approached the situation with compassion and humor helped me get everything back on track.

Just to finalize my thoughts on humor and laughter, a few quotes:

• The most wasted of all days is one without laughter.  ~e.e. cummings
• Laughter is an instant vacation.  ~Milton Berle
• Laughter is the shortest distance between two people.  ~Victor Borge
• Laughter gives us distance.  It allows us to step back from an event, deal with it and then move on.  ~Bob Newhart
• A man isn't poor if he can still laugh.  ~Raymond Hitchcock
• Man, when you lose your laugh you lose your footing.  ~Ken Kesey
• Laugh at yourself first, before anyone else can. ~Elsa Maxwell
• You don’t stop laughing because you grow old, you grow old because you stop laughing. ~Michael Pritchard

To All You Anonymous Donators Out There!

Submitted by Laura on Sat, 09/24/2011 - 1:20pm

Hello Anonymous Donators,

Since I am not able to directly mail you my personal thanks for supporting me on my journey through lung transplant, I am writing you a letter that I hope you will see online.

My sincere thanks and gratitude for your generous donations - you are giving me even more hope that after transplant, I will have the support I need to keep celebrating life to the fullest extent.  I look forward to getting back to my passions in life - cooking, helping others, exercising with my dogs, being active with my husband, celebrating with family and friends - and this will all be possible in part to what you've contributed.

Thank you again, and please continue to follow me on this journey through my blogs!

XO,

Laura

Who has questions?

Submitted by Laura on Fri, 09/09/2011 - 1:05am

Hello everyone!

I thought for this blog entry, I would let you pick the topic.  Are there any questions you want me to answer?  They can be transplant or CF related - or they can be anything you want (about life, me, etc.).  Post a question as a comment to this blog entry, in the Guestbook or email me atlauramanarik@yahoo.com and I will answer some questions for my next blog!

XO

Swim

Submitted by Laura on Tue, 08/23/2011 - 8:31pm

Today, someone told me to listen to the song "Swim" by Jack's Mannequin.  See the video on You Tube. 

This song is very inspiring.  My favorite lyric of the song is:

"You haven't come this far
To fall off the earth"

That is so true!  I have accomplished so much, but there is so much more I want to do and see!  I haven't come this far to just give up.  I vow to keep doing all of my therapies, exercise, eat, rest, and stay strong (both mentally and physically) before it's time to receive my gift of hope. I will remain positive and upbeat.  This is a promise to myself, my family and my friends.

XO, Laura 

P.S. Jack's Mannequin will be at Ravinia on 9/3, and I will be purchasing tickets!

Daily Routine

Submitted by Laura on Tue, 08/16/2011 - 12:57am

Here is a glimpse of my day from the time I wake up until I go to bed.  You wouldn't think someone who didn't work would be THIS busy!!  It's time consuming to properly take care of myself while I wait for my transplant.

• Clumsily stumble out of bed at 7:30 AM to disconnect from nightly feeding tube.  Cough for 15 minutes and go back to sleep.
• Wake up for good at 11 - 11:30 am.  Cough and blow nose for 30 minutes.  Hug my doggies.
• 11:45 - 1:00 - Prepare and eat breakfast.  Do nasal wash and take morning medications. Give Chloe her medicine.
• 1:00 - 2:30 - Do first therapy and while doing so, multi-task: check my email, read a book, read CF forums, or write a blog.
• 2:30 - 3:30 - Prepare and eat lunch.
• 3:30 - 5:30 - Exercise at the hospital gym (M-W-F), otherwise do light chores, water the plants, see a movie, get some sunshine! 
• 5:30 - 6:30 - Recharge my batteries and rest or do another treatment.
• 6:30 - 8:00 - Prepare dinner and eat.
• 8:00 - 9:00 - Spend time with Joe.
• 9:00 - 11:00 - Treatment again. I do my vest therapy for 30 minutes and my Mom comes over nightly to do an extra hour of manual chest therapy (basically beats the mucus out of me).
• 11:00 - 11:30 - Get ready for bed....take medications, hook up to feeding tube, cough, get comfortable and sleeeeep!!!!

Whew!  This is a full time job, but I'm not complaining.  I'm just very lucky to have the resources available to me to stay home and take care of myself, so I have the best chance at a successful future and a successful lung transplant.  Thank you to everyone who supports me in my journey!  XO.