Food Glorious Food!

This morning we received good news from Dr. Meyers that things are looking very positive and that one of Lisa's chest tubes will be removed today and that she can have real food! Hooray! Lisa is enjoying her first "meal" of chocolate milk and peanut butter and crackers. She has also been up in the hall walking today. We are preparing for a shift change today. Lisa's sister Terri will be taking over the reins today as her caregiver. It has been so exciting to see the changes that Lisa has made and how she bravely weathered the storm of complications. Everyone will be so impressed to see how great she looks and how much her quality of life has improved. We are so blessed!

Posted by Shannon

Peace and Happy Thoughts

Today has been a day of good news from doctors and a very happy mental state for Lisa. The doctors are pleased with the amount of drainage from her tubes. They are very pleased with her lung function and she no longer needs oxygen. She's gradually getting rid of tubes and devices. And, she set a new record on the treadmill at 25 minutes! Tomorrow we're hoping for REAL food.
Lisa wants to say how appreciative she is of all the cards, goodies, and well wishes she continues to receive. We hoping to post some new pictures soon.

Good News

According to Lisa's surgeon (the wonderful Dr. Meyers) her surgery went well today. He was able to do the necessary fix without another incision - great news. He said that it appeared to him that Lisa has two thoracic ducts which is very unusual. I always knew that Lisa was one of kind, but that's taking it a little too far! She also seems to have had better pain relief this go round. So more observation of fluid is in store for now and here's hoping that there's not much to observe.
Also, seems Renee is doing better this afternoon after having her own hospital stay. I think we're all ready for the healing to begin.

Posted by Shannon

A Quiet Afternoon -Or So We Thought...

Well, the afternoon started off nicely with Lisa resting better and taking a little stroll in the hall. She did a most excellent job and her O2 Sat's stayed @ 97% the entire time. At around 6:30, Dr. Meyers came in to talk to her about the amount of drainage that she was still having in some of her chest tubes. He wanted to try a little experiment. She was allowed to eat high fat, dairy food throughout the evening and night and they would evaluate the color of her tube drainage and decide what the next step would be to remedy this problem. I immediately ran over to Dairy Queen to get several high fat, dairy concoctions - just what the doctor ordered! On a side note, the blog entry entitled "A Quiet Afternoon" was inadvertently erased in all the excitement! So, this morning she was cut off from her diet and her doctor plans to do a procedure to patch up this troublesome spot. He's hoping to do this procedure laproscopic and spare Lisa the pain of another big incision. Will keep you posted.
Also, while your doing your praying, please remember Lisa's sister Renee whose having some complications from her appendectomy from a few weeks ago. There she goes again, trying to steal Lisa's thunder! Hang in there, Nay Nay!

Posted by Shannon

Recovering and Chillin'

After spending the night in the recovery room, Lisa is back in her room (7117). Dr. Meyers feels that her surgery was a success. However, she's still having a little more leakage of fluid than expected. She has also had some issues with keeping her pain under control. She's feeling pretty good right now and is sitting up in a chair taking it easy. She is staying in good spirits and we are having a good time talking about a cute doctor that helped with her surgery that has come by to visit SEVERAL times! I will keep everyone updated about her progress throughout the day. Keep on praying!

Posted by Shannon

Just a Little Bump on the Road to Recovery

Today started with another migraine, but was much improved with the addition of Imitrex (a migraine medicine) to her drug list. It also looks like minor surgery will be on the agenda for tomorrow. It seems that Lisa is leaking some fluid through her chest tubes that is normally absorbed through her lymphatic system. Obviously, this is causing Lisa discomfort and impeding her progress somewhat. This condition is relatively common and is usually fixed by this surgical procedure (called a chylothorax). Lisa remains in great spirits and is ready to get this hurdle out of way so that she can keep kicking boo-tay! On a more positive note, she walked for a record 17 minutes on the treadmill today! She wants me to pass along many thanks for all the well wishes, prayers, and cards that have been sent her way. p.s. She is able to receive flowers now.

Posted by Shannon

Day 9 - Happy Easter!

     Lisa said to wish everyone a Happy Easter!  She had a nice visit with Paul and Kristi today.  She is still not being allowed to eat or drink anything by mouth, but her output from her chest tubes is becoming more clear and seems to be correcting itself.  Yeah!!  She still has more output than normal, so the chest tubes will need to stay in a little bit longer. 
     Shannon is looking forward to seeing Lisa tomorrow.  I'm sure she will be amazed by her progress.  She has seen the pictures, but seeing her in person is so much better!
     Sherman has settled in and is having a good time with the boys.  He called and wished his Mommy a Happy Easter today!
     She is still hoping to be released from the hospital this week, so keep your fingers crossed that those chest tubes will be out soon.  After that, she can really take off on the treadmill!

Posted by Renee

Picture of Lisa - GOOD-BYE OXYGEN!!

This picture was taken after Lisa no longer needed oxygen.  She said it was the greatest feeling!

Picture of Lisa - Bionic Woman

Tried to make this larger, but it became too blurry.  I couldn't distort that big smile!!!

Day 8

     We went to visit with Lisa before heading back to Kentucky today.  At her request and in honor of Easter weekend, we all performed the chicken dance while wearing our yellow gowns.  She took a picture of us for future reference and humiliation:)  It was VERY hard to leave her, even though we know she is in very good hands and will have visits from Paul and Kristi this weekend.  Another HUGE thank you to them for all that they have done for Lisa and our family.
     Lisa encountered a little bump in the road today.  She has been eating really well, but her body is having some trouble passing the fat from the food through the output of her chest tubes.  It is not an uncommon problem and often corrects itself within a couple of days.  She will not be allowed to have anything by mouth during this time, but will receive supplemental nutrition through her I.V. 
     Shannon will be flying in on Monday morning and getting Lisa's place ready for when she is discharged (hopefully midweek). 
     Lisa continues to be in very good spirits and is overwhelmed by all of the support and love that she has received.  Please continue to pray for her recovery and start to her new life!

Posted by Renee

Day 7

Another good day for Lisa, but she had to deal with a nagging headache for most of it:( We had a pretty exciting afternoon as we sat with Lisa through a few tornado warning sirens. Luckily, the worst weather stayed north. On the downside of that, the airport has closed due to a possible tornado in that area. Please say a prayer that it opens up soon because Lisa's sister, Shannon, is flying in from Maryland on Monday to be with Lisa.
I failed to mention in yesterday's entry that one of Lisa's chest tubes was removed. Hopefully the other ones will follow soon.
We had a good laugh today when Lisa informed us that her night tech was named Moses and her nurse today was Mary. We were really hoping that her nurse or tech tonight would be named Joseph, but he was Kurt. He said his middle name was Joseph, but I think he was humoring us:)
Lisa received more e-messages from the Barnes-Jewish website. Please continue to send these because they really brighten her day and motivate her.
Posted by Renee

Day 6 - Continued

Another great day for Lisa! This morning she walked for 12 minutes on the treadmill, then walked for 15 minutes this afternoon without her oxygen!!!!! She said that she was so excited to be able to talk and walk at the same time:) I can't help but think about all of the things I take for granted.
Lisa's brother, Michael, and her aunt, Nancy, came today. She was really happy to see more family.
Lisa was also excited to have only female nurses today:)
Her doctor said that if all continues to go well, she should be released from the hospital the middle of next week. She will then be moving into an extended stay hotel in St. Louis for up to 12 weeks to receive pulmonary rehab.
When we left, she still did not need her oxygen! She said it was an odd feeling, and it felt like she had to learn to breathe again. Her doctor said it was like being a newborn, which was the perfect analogy because Lisa has said that she will now also celebrate April 16th as her transplant birthday.
Lisa received some e-greetings from the Barnes-Jewish website today and loved them. Please keep them coming. Thanks to everyone!
Posted by Renee

Day 6 - Another Move

Lisa called last night to let Daddy and I know she was moved to a regular room! She is in Room 7117. She still cannnot have flowers or plants. She said that she is not quite up for a lot of phone calls - she tires quickly and is still on a lot of pain medication. Hopefully soon!
I just saw on Facebook that Lisa's friend, Greta, found a link on the hospital website that will let you send an e-greeting that will be printed out and given to her. The website is www.barnesjewish.org . Let's see how hard we can work those printers!
Posted by Renee

Day 5 - Move Over Bionic Woman

Lisa keeps improving each day! She walked 10 minutes on the treadmill this morning and 12 minutes (at her request) this afternoon. (See Facebook for picture)
The only down side to the day was the fact that she had all male caretakers, which she found embarrassing. I teased her about enjoying the sponge bath:)
She will hopefully get her chest tubes out soon and have even more mobility. She will also hopefully be moved to a regular room tomorrow.
Posted by Renee

Day 4 Continued

Lisa had an eventful afternoon while Daddy and I were gone. Her bed is right beside the nurses' station. While she was supposed to be napping, she overheard some of the nurses asking each other what show the character "Rerun" had been on. When Lisa realized they didn't know, she pushed her call button. All of the nurses turned their heads and looked at her and she said, "What's Happening", which is the name of the show. Needless to say, she gave the nurses a good laugh. She also apologized for eavesdropping:)
She took another walk while we were gone also. While walking, she passed a man who also received a double lung transplant the day she did. They gave each other high fives and challenged each other to a race in the future. She told me that she thought he was doing better than her, so she had to hurry and catch up:)
She continues to amaze us each day. She has such a great attitude, and we have no doubt that she is going to fully embrace the new life that has been so graciously given to her!
Posted by Renee

Day 4 - Moving on Up

This morning, Lisa was moved out of ICU to a step down room! The building that she is in now is called Queeny Tower, so she is referring to herself as the Queen Bee:) Before leaving, she walked two laps around the ICU. After being moved, the therapist took her for another walk, and she insisted on going further than she had previously gone! I can't begin to put into words how wonderful it has been to see Lisa walk and not become breathless! She has walked more in the past two days than she has in months! I'm sure she feels like she needs to make up for lost time.
She is now eating solid foods and loving every bite! If all continues to go well, she will move to a regular room in a couple of days.
I have been reading her the messages that are being posted on here and Facebook, and she said today that she can feel an energy coming from all of the prayers and messages! So please keep them coming!
(posted by Renee)

Day 3 - Unbelievable

Lisa has decided to take the fast track to recovery! She wowed everyone today by taking a spectacular trip all the way around the ICU. There are pictures of this monumental event on her Facebook page. I will hopefully have some uploaded to this page soon. She could possibly be transferred out of ICU to a step down room tomorrow.

Day 3 - What a Difference a Night Makes!

Walked in to visit Lisa this morning and found her off of the ventilator and awake!!! She was very happy to see us and was asking lots of questions. She remembered everything leading up to the surgery. She said to tell everyone hi and thank you for all of the prayers. Daddy and I had a very hard time keeping ourselves composed as we watched her breathe with her new lungs! Praise God!!!!!

Day 2 - Lisa's Next Adventure

Another great day for Lisa's road to recovery! She had successful surgery to close the part left open in her chest and has been taken off of some medications. Dr. Meyers said that she is doing great!
As Daddy and I were telling her goodnight, she opened her eyes and started moving around a lot. The nurses weren't quite ready for her to be awake, so they gave her something to calm down. It was great to see her responding to us with such spunk!
We are looking forward to seeing her lungs working on their own tomorrow when they wean her off of the ventilator. It will be an amazing sight to see!
Posted by Renee

Lisa has lungs!!!!!!!!!!!

The big day has arrived - much sooner than any of us anticipated. What a miracle! The following is a timeline of how and when her transplant took place:

3:35 a.m. Lisa received a phone call from Barnes Jewish Hospital saying that a donor had been found for her!
5:00 a.m. Lisa calls home to give her family the great news! We were shocked but so excited for her. She sounded so calm on the phone when she called, but said that she was shaking like a leaf. She was also regretting the fact that she did not wash her hair the night before:) That's our Lisa!
4:10 a.m. Lisa left for the hospital with Paul and Kristi Feld, her wonderful friends who have opened their home to her and Sherman.
4:50 a.m. Arrived at Barnes Jewish Hospital.
10:05 a.m. Sent to pre-op
2:00 p.m. Lisa's new lungs arrive at the hospital.
2:15 p.m. The surgery begins.
2:45 p.m. Doctors began removing first lung.
4:30 p.m. Lisa's dad, sister, and two friends arrive at the hospital.
5:00 p.m. Lisa is placed on heart-lung bypass to minimize stress on her body.
6:05 p.m. The right lung is working. Began working on left lung.
7:10 p.m. The left lung is in and working! Preparing her for trip to ICU. Dr. Meyers informed us that Lisa's chest had to be left open to monitor clotting. The heart-lung bypass had decreased this ability. Found out donor was taller than Lisa but the lungs fit just fine.
9:30 p.m. Family and friends allowed to see Lisa for the first time with her new lungs! She had many tubes and monitors, but her color was good and she seemed peaceful.

A very long day, but so full of hope! We have so much gratitude for the donor's family, the doctors, nurses, Paul and Kristi, and the hundreds of people who have offered prayers and well wishes.
Posted by Renee

Day 1.5 - TRANSPLANT

Lisa got her call at 3:30AM Saturday morning, and only after an 8 day wait in St Louis, the household was shocked - none of us were ready. Her surgery actually started right after the lungs arrived at the hospital around 2PM that afternoon. Since we got the the hospital around 4:45AM, the surgery wait lasted for eternity! Surgery lasted until almost 8PM, and there were a few complications, but nothing unexpected based on her pre-surgery workup.
We got to see her in ICU today(Sunday) about 3:30PM. They had just finished the minor procedure of closing her chest. We all thought she looked great, despite the dozen or so tubes hanging around. Doctors said that Monday she should probably come off the vent/tracheotomy and have those new lungs start to take over on their own.
Everyone is completely exhausted, but thrilled the toughest part is behind us.
(Posted by Paul)

Friday - Whew!!

Well, this rehab stuff every day has been tough for me, but I am proud to say I made it thru the first 5 days!  For some reason, yesterday was the hardest for me, even though I was pretty much doing the same things each day.  I walked 30 minutes on the treadmill (I upped it to 1.1mph - yee haw!), then did leg raises and leg lifts with 5 lb ankle weights (20 reps each leg for each exercise), and finally 5 minutes of arm exercises on what I call the "arm bicycle".  With rest in between each activity, I am usually there about an hour.

I have been here a little over a week now, and am settling in well.  Sherman is getting more spoiled, if that is possible.  Paul takes him for walks thru the neighborhood and I think they both enjoy it.  Kristi and Paul are cooking good meals for me, and really taking care of my needs.  Sherman may not be the only one who gets spoiled!

I did want to thank everyone who has sent cards and emails wishing me well.  I appreciate them so much!  It makes it so much easier knowing that I have so many people praying for me, thinking of me, and wishing me well!  I am so blessed!

First Day of Rehab...

...and I survived!!  They had me walk 30 minutes on the treadmill (at a blistering pace of 1mph), and I was very proud of myself for completing it!  That was the most I had walked continuously for a long time.  I have a feeling I will sleep well tonight.  Tomorrow I will walk 30 minutes again, and also do some arm exercises and leg exercises with weights.  A far cry from my hard core gym days, but hey, I will take it!  Any exercise is good exercise right now!

I am getting a pretty good idea of the route to take to the hospital, but Paul plans to take me again tomorrow to my appointment.  I think he would like to take me as much as his schedule allows, and I don't think I will mind that.  I have a feeling the rehab session plus the commute, especially coming home in traffic, will be very tiring for me.  But I do plan to drive it as much as needed.

Not much else to tell, I guess.  I have Skyped with Renee, Shannon, and my aunt Nancy so far.  It is pretty funny and much easier than I thought it would be!

Resting and Settling In

I feel like I have spent the entire weekend sleeping!  The past two weeks have been pretty tiring, mentally and physically, so I guess I have a good excuse.  Paul and Kristi probably think that I have been a bear in hibernation.  They have been so accomodating; making sure I am comfortable, fixing me meals, taking Sherman out for me, etc.  I think I might get a little spoiled!  And I know Sherman is loving the extra attention he is getting.  Kristi has already nicknamed him "George" as in "Curious George".

Sherman and his new sheep (Innards still intact at this point)

Sherman sees his first squirrel  (SQUIRREL!!!)

Tomorrow I start pulmonary rehab at the hospital.  I will have a standing appointment Monday thru Friday at 3:00.  The exercise there is to help me get in the best condition possible prior to surgery.  I am pretty much weak as a kitten right now, so I hope it helps.  That little outing every day will probably wear me out.  Paul is going to take me for my first day tomorrow and other days as needed.  I hope to be able to drive myself some days.

Well, that is it for now.  Thanks for all the nice feedback!

My Home Away From Home

Yesterday was moving day for Sherman and me.  On Monday, I was officially placed on the transplant waiting list  at Barnes-Jewish.   I am going to be staying with my friends Paul and Kristi, who I met in 2004 at a CF conference in California.  Who would have thought that our meeting then, and staying in touch throughout the years, would have resulted in them graciously offering me a room in their home while I wait for my transplant??  What a blessing!

Our new nest

My sisters Shannon and Renee helped me with the move and it all went well.  Sherman behaved like a well-seasoned traveler, which was great.  My first night here last night actually went better than I thought it would.  I was so exhausted, my body had to get some sleep!  Shannon and Renee came back over this morning from their hotel; they made a Target run for me, washed my hair, and helped me finish getting settled.  I was doing quite well until they pulled out of the driveway.  Then the tears started.  They didn't last too long, just a mini-meltdown.  It all became more real at that moment I guess.  Sherman and I napped this afternoon and I am feeling pretty good right now.

My sister Renee

My sister Shannon

What A Send Off!!

It will be difficult for me to describe the wonderful experience of my transplant fundraiser on Saturday night. Just imagine a large room filled with hundreds of people - my Dad, siblings, aunts, uncles, cousins, childhood friends and neighbors, current friends, coworkers, well wishers, and even a couple of ex-boyfriends. :-). The feeling of love and positive energy in the room was palpable. I really felt like I was in a dream all night; listening to the excited voice of the auctioneer, receiving endless hugs, kisses, and good wishes, and continually looking around the room trying to absorb it all. Everywhere I looked I saw smiles and excited bidders in a sea of blue, the color worn in support of our beloved Wildcats.  (They unfortunately fell short in their game against UConn).

Oh, and I do have to mention that my poor sister Renee was not able to attend the festivities because she was stricken with terrible stomach pains the night before and ended up having an unscheduled appendectomy the evening of my party!  She had been so instrumental in the planning of the benefit, then she had to miss it AND have surgery!  Everyone said she was just trying to steal my thunder - hee hee!

I am still in awe of the generosity and support shown by everyone who helped make my benefit a success.  I may not be lucky to have CF or need a lung transplant, but I sure am lucky and blessed to have so many people who care about me.  That fact is going to carry my a long way through this journey.

I am still working on getting some photos uploaded, so I will try and post some later.

A Flurry of Activity

Sherman and me sitting in my guest bedroom surrounded by just some of the wonderful donations we have received for my benefit. It has been a crazy, busy week! Once I recover from tonight's festivities (which may take all day tomorrow!), I will post pics and highlights.