Don't wanna jinx myself...

Submitted by Laura on Sat, 07/21/2012 - 11:33pm

I don't want to jinx myself, but I've been feeling pretty good this week.  I've had some extra spoons to use this week, I guess!  (See this blog from fellow tx patient re: Spoon Theory).  This week, I spent Saturday mattress shopping, Sunday visiting with my grandma/aunt/mom playing cards, exercised on Monday, ran bedding/pillow shopping errands and got my hair done on Tuesday, completed bedding shopping on Wed. and cooked dinner, saw a movie with Mom Thursday, did bedding laundry and picked up the house Friday in preparation for our mattress delivery, and today cooked breakfast, picked up the house more, dusted our bedroom, went to a brewery and classic car night at Dog N' Suds.  Tomorrow I am contemplating the Museum of Science and Industry.

Now, with all of this extra energy and ability I seem to be having, I also am just WAITING for the minute that I CRASH AND BURN!  With all this activity, I just know it's coming!  However, I'm not going to stop doing stuff and just sit around waiting to be tired - when the crash happens, it happens.  All I can realistically do is be prepared to turn my little butt around and get home for some R & R.  I did have to make some informed decisions regarding WHICH activities I could do today (walking around a fair = no, sitting at a brewery = yes). When you're ill, these are the moments you have to be prepared for and accept.  I just look forward to the time when I don't have to forgo activities because walking from the car to someplace is simply too far.  I can't wait to stop being left out of activities simply because I cannot breathe.

Of course I realize that transplant is not a cure - you're trading one set of 'problems' for another - but if I can breathe easy, I think I will be able to deal with the 'other stuff'.

XO

Wonderful Experience

Submitted by Laura on Sat, 06/23/2012 - 11:40pm

If you read my last post, you may remember that I mentioned Joe and I were going to have a portrait session done last Friday.  We won a dream portrait by photographer and artist Audrey Wancket (you can read our dream wish submission here).  I was really excited and Joe and I worked hard to consider outfit choices and how we wanted our portrait to look using the guidelines Audrey mailed to us when we won. If you check out her website, I think you'll understand why we felt it was a key decision, based on the portraits she does. Joe and I both had 4 outfits that we made sure were dry cleaned and pressed, loaded carefully into the car, along with the beautifully groomed pups (thanks Shear Paradise Pet Salon!).  I expected our session would be maybe 1.5 hours with 1 outfit change.

Audrey's property is beautiful!  Her studio is in a remodeled barn, she has horses on the property, and many outdoor spots that can be used in the photo (we didn't do outdoor because of 1. the dogs attention span and 2. Audrey said outdoors are better in the morning based on sun position - and you know me - I am NOT a morning girl).  Chloe and Butters were immediately in love with Audrey and Kate, her assistant.  The warmness I felt from the two ladies helped ease my anxiety about working with my special needs.

Audrey chose all of the background and props, so it was great that I didn't have to try to tell her what we envisioned, because I actually wasn't really sure!  This is where her great artistry skill comes in.  For the last shoot, Joe and I got to play around a bit with our last outfit choice and our vision.  We got some REALLLLLY cute snapshots of the dogs alone on pedestals.  I cannot wait to see them!

We were there for about 3 hours!  It wasn't all photo taking - there were many breaks where we just sat around and chit-chatted a bit.  Today, I didn't feel sick. I felt normal - this is a testament to how great Audrey and Kate are.  Kate was super helpful hiding my oxygen and bringing it to me for "oxygen breaks", because I didn't want to wear it during the photo.  They were so patient with the dogs and really good at getting their attention for the camera (thanks burp, fart, bird noise, etc. maker machine!).

I feel like I found 2 new friends during this process.  I look forward to returning on July 3 to see our photos and pick which one will be transformed into our dream portrait.  I know we'll never be able to walk away with just 1 picture.....thanks for a unique, personal, and memorable experience, Audrey and Kate!

Not Much To Tell!

Submitted by Laura on Sat, 06/16/2012 - 11:45pm

Hi everyone!  Well, it's been pretty boring around here!  We saw Dr. Wigfield, who will be the lead surgeon taking Dr. Love's place, on June 2.  He seemed very interested in my case and making me comfortable.  He had personality and spunk.  I felt he was just as accomplished as Dr. Love, but he just doens't get/take much credit. NOw that he will be the head, maybe we will hear his name more! He made me feel confident in moving forward with the program.

I spoke to the Procurement Nurse the other day.  I am listed as #2 for my blood type at Loyola and #3 for my blood type in the region, so my time is approaching, slow but steady!  Sidenote, the patient waiting in front of me for lungs received her gift of life on May 18th and is home now and doing fabulous!!!!  I have to keep those success stories in the forefront of my mind.

This Friday, Joe and I have our dream portrait scheduled that we won (thanks to a lot of you guys voting for us!).  Check out the photographer's website: http://www.wancketstudios.com/ and re-read our dream wish submission here. Her photography and art is so exquisite, but ours will be a bit more on the casual side since we are including the doggies!

Joe participated in his first 10K and ran in memory of his Mom.  I am proud of him for training hard and completing it in under 1 hour. WOW! Next, he will be running half marathons and maybe a triathlon!

On the running note, my friend, Jeff, is running the 2012 Chicago Marathon and has generously offered to run in support of Lungs For Laura!  We setup a separate donation page for his run with 100% of the donations going to COTA for Laura Anne M.  What a swell guy!!!! Thanks, Jeff!

So here I am, waiting....bored....living vicariously through others, so please if you are bored too, make a time to stop over!  Keeping positive thoughts here, over and out!

XO

How to Handle Change In Medical Care?

Submitted by Laura on Tue, 05/08/2012 - 3:48pm

So, I found out today that Dr. Love is leaving the Loyola transplant program in June.  One kicker is that I found out from someone who does not even work at Loyola - it was from a third party.  I would have preferred the program sent out letters as soon as this became common knowledge in order to avoid hearsay. This is a big deal to me - a BIG part of the reason I chose Loyola was because of Dr. Love.  I have had a not so great experience with another pulmonary surgeon before, and so this was really important to me to find someone I felt I could trust.

I feel a little lost now.  I hear he's moving to Milwaukee.  I'm close enough....do I maybe follow him there? Unfortunately, Milwaukee doesn't have a transplant program yet (this is why Dr. Love is probably going there - to start one), so following him isn't really an option, in reality. I know I need to 'interview' and give the other Loyola surgeons a chance, but, I was really counting on Dr. Love.  I'm really overwhelmed by this news today and the manner to which I was informed.

I know this is just another bump in the road.  Maybe I will get transplanted before June comes and then I won't have to worry about meeting the new doctor.  This is just a very scary and fragile time for patients and to hear a member that I trusted will no longer be there, creates a lot of anxiety.

I want to add that while the surgeon is an important part of the journey, the after care is managed by a very competent team that I also trust.  After the initial surgery, you work more with the transplant team. Therefore, it isn't ALL about Dr. Love, but it's an important piece of the pie. What to do, what to do......

Ready for May

Submitted by Laura on Tue, 04/24/2012 - 4:49pm

When will this month finally be over?  Not quick enough for me!  Joe will return home from the Philippines and I will go back active on the transplant list and continue my wait for new lungs.  The seriousness of lung transplant surgery has hit me a little hard this month. Before, I didn't really think much about the surgery, recovery, and long term outcomes of the surgery - I focused more on feeling better and doing things I want to do as a result of the successful surgery.  This month, thoughts about the long term outcomes of a not-so-successful surgery have been weighing on my mind. I'm scared. As time goes by, it's becoming more REAL. I will be happy when Joe is home, because I don't think about the surgery so much when he's around.

I haven't felt very good these past two weeks, either, which forces me to think more about being a sick person and the sicker I get, the closer the surgery is - making it more REAL.  Dr. Love said, "if you walk into the surgery, you will walk out of it."  It's the journey after the surgery that I have stuck in my mind....will it be successful, how much longer will I live, will I have rejection, what is rejection like, will we be able to buy a dream home, will we have children, is it fair to have children....at some point I just have to STOP myself from thinking because it's a never-ending spiral of what-ifs.

I just pray that when it is my turn, the lungs are a "perfect fit".  It's a lot to ask, I know.  All I can do now is continue to work 24/7 on staying as strong as possible.  Rehab, treatments, eating, sleeping - that is everyday in a nutshell. All I can do beforehand is get my body to the highest level of health to increase my chances at a speedy recovery.  

Thanks to everyone who has cooked for me, walked my dogs, and called/visited while Joe is away.  I appreciate you all very much.
Laura XO

Is it Adrenaline?

Submitted by Laura on Sun, 03/25/2012 - 11:18pm

I think it's amazing what our body can do in response to trying situations.  For example, I'm sure we've all heard of stories about adrenaline kicking in to get yourself or somebody out of a dangerous situation.

I've been amazed at my body's response these past few weeks to give me just the right amount of drive and energy to take care of myself and Joe.  Usually, I rely on Joe to make dinner, wash my tubes, walk the dogs, prepare my feedings, feed the dogs, go grocery shopping, and clean up after dinner (I know, he's AWESOME).  Joe's Mom has been ill and he has been spending many weeknights at his parent's house taking care of her and recently, been spending almost all day at the hospital making sure she's getting the care she needs.  I was hoping and wishing that I would be able to step up and take care of him during this difficult time, but I really wasn't sure how my body would respond.

Like I said before, it's amazing how mind over matter can sometimes get you through the things you need to get done before you just crash.  While I haven't done all of the things listed above every day (thanks to my Mom for pitching in too), I have done a LOT MORE than I usually do.  I cleaned the bathrooms, made dinner many times this week, did laundry, kept up with all my treatments, washed my tubes, kept the kitchen clean, picked up the house, picked up food for the family and delivered it to the hospital, went grocery shopping today, walked the dogs many times this week (thank you nice weather), kept up with Joe's mail/bills, and exercised.

I am shocked at myself - I've felt really good these past 2 weeks and I am hoping it lasts.  I do tend to crash at night, but at least I've gotten through the day.  I am happy my body is allowing me to give back to Joe all the things he has given to me.  I love him with all my heart and I hope I can be the rock for him, like he has been to me.  Please pray for Joe's Mom and family and pray that I can keep my strength to help my best friend get through this hard time.   XO.

Submitted by Laura on Mon, 03/19/2012 - 12:15am

It's been a while since my last blog, and I guess it's good news because nothing has really been going on!  Each day has been the same...mundane.  I stick to my schedule, haven't gotten sick, haven't had any crazy feelings, and haven't done anything out of the ordinary.  All the days string together.

I do want to take time and acknowledge all of the work that was put in to make the St. Patrick's day fundraiser a success and thank my volunteers for going out and gathering silent auction and raffle items.  Special thanks to Stephanie, my Mom, and Sharon for their hard work.  

Admittedly, planning and organizing is what I love to do.  I had the time and I didn't procrastinate.....I spent a lot of my 'treatment' time using my computer over the last 3-4 weeks to create all the signage for the silent auction and bid sheets, choosing the auction/raffle items, making lane assignments, coordinating the schedule, coordinating the volunteers, soliciting for bagpipers and Irish Dancers, etc.  I think Stephanie and I could turn our event planning skills into a successful business after transplant. 

The turnout to our event was GREAT!  I think everyone had a great time. Thank you to everyone who came out to support me!  I am blessed to have such wonderful people in my life.  Pictures coming soon!  Thank you, thank you, thank you!!!! 

Laura  XO