Last Post

Louie and Pam, checking in for the last time.  I wanted to thank you all for the continuing love and support.  I get a lot of texts, calls, and emails wishing me love, so I wanted to show you all the mushy marshmallow center one last time before I go therapy tomorrow.  Pam also contributed a poem she wrote that will be at the end of the post.

Being with Debbie for almost 20 years has taught me A LOT.  I learned to cherish what you have, it won't always be there.  I learned to prepare for the future, you don't know what it holds and you don't wanna be caught with your pants pulled down.  I learned to love, love your family, love your friends, love yourself.  I learned how to be there for someone...goes without saying.  I learned how to fight and never fucking quit until there is no more.  I learned to like the little things like making little fists in the sand with your toes.  I learned that you go to funerals no matter how busy you are.  I learned to say "thank you", "your welcome", and how to ask for help.  I learned I fix almost almost anything.  I learned that when you put your dog or cat down you have to go to the vet and sit with your pet when it happens.  I learned that community is important.  I learned that a woman with CF can do anything she puts her mind to...almost.

So if y'all haven't figured out yet transplants are not the cure, they are an end of life decision.  As I heard plenty of times, "it is not a cure, you are trading one set of problems for another".  For a lot of people they work great, not all are as lucky.  I don't want you all to believe I am bitter.  We stole 3 more months and with out the transplant I believe the funeral would have been in August.  My anger comes from the work and fear that she was put through for those months. I am dealing with that now and will probably for a little while.  So thank you all for following the made for tv movie that was summer and fall of 2012.  I love you all and thank you all for all that you have done; countless fundraisers, countless cards, food, dinners, showers, calls, visits, pretzel jello, and love.

Pam actually called me today and asked if she could post something and it was funny since I was thinking about it but was too chicken...did I mention that counseling is tomorrow.  Pam sent me this to post...

Enough (or what I wished I had the guts to say at the memorial)

By Pam Grulich

Enough.

Was it enough?

Did Deb fight enough? 

Did we support her enough?

Did we laugh with her enough?

Did we cry with her enough?

Did the doctors do enough?

Did Louie and I consider the choices enough?

Did they try enough of every little thing to help her survive?

Did Deb and Louie do enough prep work?

Did Deb, Louie, and the doctors do enough after surgery?  

Did we hope enough? 

Did we wish enough?

Did we pray enough?

Did we send enough good energy and thoughts?

Did we contribute enough?

Did we tell her enough she was thought of?

Did we love her enough? 

Did we cherish her enough? 

Did we tell her enough?

Was three months of a taste of life without oxygen and breathing freely, enough? 

When will I have cried enough?

When will I have bought enough MAC makeup and eaten enough cookies to soothe the pain? (insert your own method of coping here)

When will I feel like I am okay enough not to be frozen and numb, nodding my head and smiling, when I really want to be curled into myself, protected from the physical pain?

Was 42 years of everything Debbie was, enough to sustain us as we continue on? 

Will our children remember her enough? 

Was her struggle and pain enough so that others may learn from her transplant?

When will we feel like enough of our broken hearts are healed and whole enough so we can become open to new possibilities? 

We will have to remember her enough everyday.  Speak about her enough, tell her story enough.  She touched each and every one of you reading this.  Was it enough?

We all have our own personal answers to these questions.  I for one, know for absolute certain that twenty-three years being her friend will not be enough for me.

From Pam and I we wish you all the best and be good to each other.

Love louie

P.S.  sorry for no cute pics this time.

Thankful Thursdays - X-ray-ted

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at
Run, Sickboy, Run.

The first xray is from today. The second one is from Sept. 10th and the bottom one is from August 5th.

AMAZING.

Humbled and blessed.

Grateful to the person who took such good care of these lungs during their life so that I could benefit from them.

There aren't words for that kind of generosity. If you find one, please, let me know.

xoxox, deb

Thankful Thursdays - It's Back!

This post is part of Thankful Thursdays inspired by Ronnie and Mandi at 

Run, Sickboy, Run.

The last time I did an "Thankful Thursday" post was back in May, Pam did one the day I got listed. It is long overdue and may be tough to narrow down what to be thankful for but I am up for the challenge!

• I will state the obvious and say I am thankful for the beautiful pink lungs that at this moment are working inside my body making it easy for me to breathe.

Before

AFTER!!

• I am beyond grateful to my donor and their family for giving me this gift. It is a very overwhelming thing to know that someone's loved one died and in return gave me a chance at a new life. It doesn't get more bittersweet than that. My challenge is how to even begin writing a thank you note to the family. Are there words for generosity like that. I hope I can find some sufficient ones.

• Numba 1 and Numba 2. Seriously, if you have to have major life-saving surgery, this team is the one to have. Between them I never wanted for anything. There was always a hand to hold, a joke to laugh at, food to eat, tears to be shed and the comfort of knowing I was not in this alone.

Pam, Numba 2 and Louie, Numba 1

• I walk up the stairs and my legs get tired before I get short of breath.

• I can fold and put away laundry (Louie still carries it for now). I can unload the dishwasher. I can make dinner. I know these seem like such little things but to me they are huge. Partly because I couldn't do them for so long but more so because I can finally take some of the burden off my husband. Louie NEVER once complained about all the slack he had to pick up because of my health. He just did it. He has truly shown me what unconditional love is.

Sept. 22 at the Tisdale Family Reunion (my mom's family)

• The last thing I will mention today (because I have many, many more things to be thankful for) is my appreciation for every single text, email, FB and blog comment, phone call, package and card that you all have sent me. You have no idea how they carried me. The sweet and thoughtful cards were needed as much as the funny ones. They all reminded me what a wide net my story has created. Many of the medical staff commented on how many cards I had up on my wall. There are so many people in the hospital who were walking alone in their journey. I feel so blessed for all the wonderful people in my life.   

A small sampling of the cards, this is early on and BEFORE transplant.
It probably quadrupled after this photo!

I know as the weeks go by my thankful list will expand and evolve as I get adjusted to these new lungs and a new way of life. I look forward to every step of the way!

xoxox, deb

A New Normal

So, I am home. It is weird. I am not connected to anything. I can move about the house as fast or as slow as I wish. I can go upstairs for something and then go all the way downstairs and back up again. The only thing that slows me down is my weak legs.

It is a new normal.

Gathering dust in the laundry room

I drove to the store and didn't have to park in the handicapped spot. I didn't need a scooter. I pushed a cart. I carried bags into the house.

It is a new normal.

I am up until 1:00am doing drugs. I can't sleep more than an hour at a time. I feel antsy but can't quite explain why. I feel sad and happy at the same time. I want to be alone and I feel lonely.

It is a new normal.

I don't have to do 60 minutes of breathing treatments or airway clearance. I have to take 40+ pills a day, making sure I always have enough on hand.

It is a new normal.

It is a good thing.

I am a lucky, lucky girl.
xoxox, deb

Home, Sweet, Home

Just a quick post to let you know we got the all clear to go home. So tonight we will be in Michigan, sleeping in our own bed. Woohooo!!!
Xoxox, deb

You Asked, I Answer

• Maribeth - Why did they leave a couple staples in? Were there areas that just needed a bit longer to close/heal before they are ALL out?

  
  

  The person who was taking them out must not have seen them, they go up almost to my armpit so I think my hand was blocking them from his view.

  
  
• 
  

  Bonnie - Are you restricted on any food items?

  
  

  Yes. What exactly depends on who you ask. Definitely NO grapefruit ever. It interferes with the anti-rejection drugs. All the other foods are because of the risk of various food-borne illnesses. No raw seafood or under-cooked meat. Buffets are not a great idea. Unpasteurized cheeses are a no-no. The recommendations vary from transplant center to transplant center and from healthcare professional to healthcare professional. It is kind of frustrating. There is a huge gray area where it really is up to me to decide if the risk is worth it or not. For example, some people say to not eat salads in restaurants because you don't know if it was cleaned properly. *My* transplant doc said it wasn't really an issue, especially with all the antibiotics I am on right now. So I have had salad from a restaurant :-)
• 
  
  

  Sue - What do you know about your donor?

  
  

  Nothing at this point except they flew to Ohio to get the lungs. They will not tell me anything else about the donor and at this point I do not want to know anything. I can contact the family via UNOS if, and when, I choose. I think I will need to just sit and think about all that for a time. It is quite overwhelming to process.
• Mark - Did you really expect anything but success???

  
  

  I always hoped for success but I also knew the realities of the situation and the additional risks I faced going into transplant. However, I became sick enough and had such a low quality of life that the risk was definitely worth it.
• 
  

  Patrice - How long will you be on steroids? How is that experience going for you?

  
  

  I will be on steroids for the rest of my life. They are a key component in fighting rejection by keeping inflammation down. The goal is to stay on the lowest dose possible but still being protected. I have had some side effects from it like hair growth (not fun!), some trouble sleeping, some irritability but it is worth it for the good it does. You will have to ask Louie if he agrees, lol!
  
• 
  

  Terri -How many pills are you taking right now? Will that number get any smaller?

  
  I haven't counted the total number but I would guess I take about 40-45 pills a day. I won't have to take all of them forever. Around 6 months from transplant they stat taking a few drugs away. For the most part, though, I will always be taking 30 pills a day or so.
• 
  

  Shari - OK Terri and I are at the Hospital with Mom, Terri dared me to ask this question so I am . When can you have sex?

  
  My physical activity is limited for the first 2-3 months and I can't lift anything over 10 lbs. for 6 months so I will let you draw your own conclusions! ;-)
• 
  

  Matthew - Are you able to take deep breaths with those new lungs

  
  Yes, I am! But it takes practice and I have to work at it. I was so used to breathing shallow for years that I don't know how to breathe deep like a normal person. So they give me exercises to do to keep opening the new lungs up all the way and let them get working.
  
  
• 
  

  Stacey - Emotionally, what was the hardest part of the process?

  
  This has been a tough question to answer. I think my answer will change day to day. Right now, looking back, I think the hardest part of the process was the couple of years where I balanced on the edge of being listed. I was in limbo and it got very frustrating. 
• 
  

  Shelley - What was your FIRST thought when you woke up in the Recovery Room/PACU?

  
  I had a lot of dreams that were very crazy when I first got back to the ICU. It was hard to tell what was real. I thought days were going by, not hours. The first thing I remember actually opening my eyes and seeing was Louie coming in and telling me that I had the surgery, that it went well and that I did great. I had to keep remembering what he told me because I would drift off and dream I did not have the transplant.
• 
  

  Nick - What was the last thing you thaught of before going in for the transplant.
  
  Things happened so quickly in that last hour I did not have time to think of much, it was probably a good thing. As you know Nick, I was given about 5 minutes notice that I was going to be going to the OR and that it would be the last time to see Louie and my family before the surgery. I gave hugs all around, giving Louie an extra long one. There were not any tears shed at this point, we had done that earlier. I took off the Kermit watch, kissed it and gave it to Louie. As they wheeled me away Louie was playing our theme song ("My Body") and I remember thinking "It's going to be ok, it's time, I am ready". In the OR I was nervous, I asked for some drugs for that and I chatted with a guy about the music playing and then, I was waking up in the ICU. 
• 
  

  Patty - What was your biggest worry/concern/fear? And oh yes, how big was Louies smile when he first saw you in the recovery room ?

  
  
• My biggest fear was always not making it off the table and having things left unsaid. I made an effort to let people know how I felt about them before the surgery. I called them my "Just in Case's" conversations. I didn't dwell on that possibility but I went there for a moment and did what I needed to so there were no regrets and then I moved on. I do not regret having those conversations one bit.
  
  As for Louie's face....I couldn't really see it the first day because I was so out of it, had my glasses off and he visited when it was dark. I can tell you for the next few days, weeks, he would just look at me at smile. I would catch him just staring at me. It was pretty amazing to watch him watch me. I didn't feel great at that point but i could see in his eyes how much better I was doing.
  
  
  

  Nikhil - Why are you so awesome? Why is Louie also my hero? Why?
  
  I am not sure. You just have good taste :-)

  
  
• 
  

  Brett - When you see post after post after post about how great Louie is, do you ever wonder..."have any of these people met him???"

  
  You know he has a marshmallow center!
• 
  

  Janet - Is psychological counseling part of before, during and after ?

  
  I saw a social worker a couple of times over the past few years but there was not an extensive amount of counseling as part of the pre-transplant process. I did go to counseling on my own. I do think they should provide more resources for those that may not seek out counseling on their own. As the months go on, and as I begin to process this whole experience I am sure I will return to my counselor for a few sessions. It is quite a bit to process!
• 
  

  Hollie - Is the heartburn from the large amount of pills you have to take a day?

  
  That is probably part of it. It could als be my body is just recovering from surgery so my digestive system is out of whack. We are hoping to figure it out soon. There has been some research shows that chronic acid reflux can contribute to chronic rejection which is something we DO NOT want. If things cannot get under control with medicine there are surgical options. I am hoping to avoid that though.
• 
  

  Janet -What are a few things you want to do, down the road , when you are stronger?
  
  I created a list in a previous blog post here. It is still accurate.
  1. Go to Fiji with Louie
  2. Get a new puppy
  3. Walk from my basement to my bedroom without stopping. This might even be better if I jog!
  4. Dance until I am really, really, sweaty!
  5. Go shoppi..ng at Target and not think twice about where I park the car. Maybe even skip getting  a cart and just carry everything in my arms.
  6. Have a champagne toast with Bob the delivery guy when he comes to pick up my o2 concentrator.
  7. Stay out at a bar with friends until the bar actually closes
  8. Pay It Forward. Every day. For the rest of my life.
  9. Successfully play Hide n Seek in the house
  10. Go on a trip with one bag and one bag only!
  11. Sing along with the RENT CD from beginning to end
  12. Make Craig proud.....ask me in person about this one ;-)
  13. Run. Anywhere. Everywhere. 1 mile. 12 miles. Alone. With a crowd. Doesn't matter. Just Run.
  
  
  That's it for the questions, thanks to all of you for asking them. It gave me a lot to think about and some questions were much harder to answer than I thought. I hope you enjoyed this glimpse into my life at the moment and what this experience has been like so far. It has been quite a wild ride and I am sure there is more to come, I am glad you will be with me for all of it!
  xoxox, deb

  
  

PFT's and Pics

It's been a busy few days since I last posted. 

I have lots of photos to share.

On Thursday I had an appointment with my pulmonologist. We talked about all the small things I have going on. I got a referral to a GI doc to hopefully figure out my heartburn issue.

I got *most* of my staples out, 28 on the left, 33 on the right with left in accidentally (they are all out now!).

I had an xray taken. It continues to get clearer and clearer. I still have some fluid collecting on the left side. We are just watching it. As long as it slowly gets absorbed into my body there is nothing to do. If it builds up more I will have to get it drained. 

I also did my PFT's which measure my lung function. Before transplant it was 23%. My first PFT two weeks after transplant was 59%. This one was.....

72%!!! Very excited to see it go up and up.

72% Baby!

Carla, me and Maureen

On Saturday two of my very closest friends, Carla and Maureen, came to visit. It was so great seeing friends from home!

We celebrated by going to the Cheesecake Factory where we stuffed ourselves silly!

Carla and Louie

Maureen and Me

We ate so much we had to get our cheesecake to go. This is Louie's brilliant idea on how to get them from the car to the apt. :-)

Cheesecake on an umbrella

We spent the evening laughing, playing games, listening to Carla read "US" magazine...yes, listening. She has a running commentary that is very entertaining!

The next morning we did a little shopping on Walnut St. and then had breakfast at Pamela's. It was delish!

Carla and Maureen at Pamela's Diner

A few beauty products to help spiff me up. (Do people say spiff anymore?!)

Carla and me in Lululemon

They were here less than 24 hours but it really was a good boost for me to see people from home, especially these two ladies that I have know for over half my life. We talked a lot and it gave me some stress relief that had been building up in the days before. I am so lucky to have them as friends!

Sunday and Monday were kind of lazy, seems like all we did was eat and treatments.

On Tuesday I was determined to go get a haircut and get my eyebrows waxed. My grooming skills have fallen by the wayside in the past few months. Taking steroids increases hair growth so I couldn't ignore it  much longer! So, off I went...

Before

After

After the salon we went to the grocery store. I was craving a meat and potatoes meal with a big salad. We bought all the stuff plus a few other food items to get us through the next few days. Louie made me some Delmonico steaks, baked potatoes, some yummy creamed corn and a boatload of sauteed veggies.
It was FABULOUS!!

We will have the big salad soon :-)

I posted the following on FB yesterday:

Do you have a burning question for me about the transplant process and my experience so far? Leave it here and I will answer them in a blog post this week!

Feel free to post a question in the comment section if your are not on FB. I will start posting answers Friday. I look forward to hearing what it is on your mind.

xoxox, deb