Tuesday, August 31, 2010

Mama's got a new set of lungs!!!

Hi everyone!  I bet you were wondering if I'd ever be blogging again.  Well ... so was I :-)

Amy did such a great job keeping things updated that I didn't think my input was all that necessary!  It actually took me until now to sit down at the computer and start typing.  I keep telling people that 'I'm fine' but that just seems so minimal compared to what I really am!!!

I am a walking miracle!!!!  I can breathe!  I can breathe as well as most people!  My heart rate isn't sitting at 125...it's hanging out around 75 - 80.  My pain decreases for the most part every day. 

I had my first clinic visit today (post transplant).  It was supposed to be tomorrow but I was having some pain when I was taking deep breaths so they brought me in a day early.

My pulmonary function test was amazing!!!!  I showed an improvement of 181 percent over my last PFT (pre-transplant).  And these results are when it was a little painful to take a deep breath!  I am equal to around 75 percent of the other people out there breathing!!!!  Yay!

My blood tests were fine and my x-ray showed possible fluid buildup in the bottom corners of the lungs.  So...of course...Lee and I are off to Duke North for a CT scan tonight.  If it shows fluid then they will drain the fluid and / or put in another chest tube.  I'm voting for there not being any fluid! 

These little situations are to be expected and it doesn't mean they need to put me back in the hospital.  If they were to drain the fluid they can see if there is any infection there.  That would be jumped on right away.

I did find out today that while my antibodies were a go with this donor, apparently I had a positive cross match which meant after all was hooked back up, my cells started fighting with my new lung cells!  That's why I had so many doses of plasmapheresis.  I'm glad I was out of it early on so I wouldn't be worrying about that too!  I guess that's OK now because they stopped the pheresis a couple of weeks ago.

Yesterday I went to rehab and walked without my walker, did the bikes for 15 minutes and worked on weights for lower body...also did the floor class.  It felt good!

I'll keep everyone posted on the CT scan and whatever else they decide to do.

Thanks so much from the very bottom of my heart for your love, support and prayers.  Each and every one is appreciated and needed!

Love to all,

Lee, Wendy and Missy

Saturday, August 28, 2010

Doing Well

I went to spend part of the week with Mom and Lee after she got home Monday. Mom and Lee are doing well. There is definitely a lot to remember after coming home from a lung transplant.

Oh my gosh, is there a lot of medicine! Mom's pill box for the week is about the size of a sheet of paper. It took them 2 1/2 hours to get it all set up for the first week and after seeing all that medicine, I can DEFINITELY see why! Mom takes medicine every day at 8 am, 10 am, 12 pm, 5 pm and 10 pm plus she will continue having IVIG once a week with an in-home nurse. I'm sure it will all become routine after a while, but for now it will take some serious adjusting. I think by the time I left Thursday I had finally gotten Mom's blackberry to ring at the right times every day.

This week was not the 'typical week' as Mom had quite a few appointments, which I'm sure will taper over time. I got to go with her to her swallow test Thursday and that was SO cool (but also pretty disgusting, too)! They put a camera up her nose and watch her drink and eat various things that are dyed green. She liked the Little Debbie Oatmeal cookie, but is SO not a fan of YooHoo. The Speech Language Pathologist thought it all looked good, but last I heard Mom was waiting on final sign off from her doctor to start drinking thin liquids and regular food. I took a lot of pictures, but did not have a chance to upload them before leaving for my business trip today. If Mom says it's okay (they're gross) I will post them next week :).

Well, I am on the plane to San Diego (got to love in-flight Internet...or hate it if you are working on the plane like I am except this quick break for this post :) ) for a work conference until Wednesday. On Wednesday, two of mom's friends from CA, Linda and Polly, are coming to visit and I know they are really looking forward to that. Probably because they are pretty sure they won't be as drill searganty as me! I am hoping to go see them all Friday evening after work, too.

It's CRAZY to me that by the time I see Mom next she will be four weeks post-transplant. We have all been so blessed by how smooth this has gone and how great Mom is doing.

Till next time - love to you all!


Tuesday, August 24, 2010

Mom is home!

Hi everyone,
Mom is home and doing well. Her pain level is so much better! Tomorrow will be the first day back to rehab, which I know will be great. Thanks for your continued thoughts and prayers.

Saturday, August 21, 2010

We're at Day 15 Now!

Hi everyone,
I am sitting here with mom at the hospital today. She is doing really great and wanted me to make sure I let all of you know that she has been upgraded from chopped food to mechanical soft food. For those of us that are not nurses - that just means soft food. This will definitely be a nice change.

Before she can go home, they still need to remove the rest of her chest tubes. She is doing fabulous on her walking - she walked 38 laps yesterday, which is more than 2 miles. Mom can't even remember the last time she walked 2 miles. It looks like she might be able to go home next week. They will do another swallow test on Monday to see if she can graduate to drinking thin liquids. Until then she is using a thickener before drinking anything. She just had a 'thickened' diet coke with lunch. She has this process down pat now!

I know I haven't been providing many updates, but things really aren't changing, which is actually a great thing!

Will let you know when she comes home.


Tuesday, August 17, 2010

Day 4 - Day 10

I have been a terrible blogger for mom. Things have been very busy around here.

Late on Day 4 (Monday, August 9, 2010) Mom was moved from the ICU to the Step Down Unit. This is still in the cardiothoracic unit, but no longer the ICU. On Day they gave Mom her swallow test. She was most anxious for this test and the results so that she could hopefully drink or eat. At this point, the only thing she had received by mouth was a "mouth swab." A mouth swab is basically a VERY, VERY small sponge on a stick that is dipped in water. She could only have those once an hour at most, which was not nearly enough! I think Mom may deprive Lee and I from liquids after she is home from the hospital to help us understand what she was going through. Just kidding...we hope! :) Two of Mom's chest tubes were removed on Monday, which they said would help with her pain levels. Mom had her fourth pheresis treatment Monday morning.

Day 5 (Tuesday, August 10, 2010) - Mom had her final round of pheresis Tuesday morning. Mom found out she passed the swallow test and was approved for thick liquids and pureed foods (Read: crazy thick, gelatin-like juice and blended food-like items). Still no thin liquids. Mom was very happy to receive the juice, but DOES NOT like the Dairy Thick drink. I don't think I would like it either. She was able to have yogurt and applesauce, which was quite a highlight.

Day 6 (Wednesday, August 11, 2010) - We thought Mom was doing pretty well with her walking and were impressed with the seven laps she had done so far. At least we were until one of the surgeon team doctors told mom she should be doing walking more by this point and he wanted her to be walking 20 laps by the weekend. We didn't know this. Mom, being Mom, said, "You mean I'm being a slacker?" Dr. H said Yes. Prior to his visit that afternoon, Mom had said she was tired and was going to rest. Not even two minutes after he left, she said okay, let's go walk again and we did two more laps. This was my first walk alone with Mom. We discovered Lee is a much better walker, I kept running into Mom's ankles with her poles. This did not make mom happy! Lee stayed the night with Mom in the hospital.

Day 7 (Thursday, August 12, 2010) - I had to go to work Thursday afternoon, so I stayed the night with a friend Wednesday night in Durham so I could be there by 8 am. Dr. H had already visited mom that morning and they disagreed with her walking goal for the day. He said 12 laps, she said 10. She had already walked 4 laps by the time I got there, she and I walked another 2 with the PTA. He is super nice and had walked with Mom for the last few days. I did a little bit better with the pole that day. That night I found out that Mom exceeded both her goal and Dr. H's goal and walked 16 laps Thursday! The speech pathologist also came in while I was there Thursday morning and approved mom for chopped foods.

Day 8 (Friday, August 13, 2010) and Day 9 (Saturday, August 14, 2010) - I didn't get to see Mom Friday or Saturday because of work and my 30th birthday party (which went on without mom at her insistence!). She walked 20 laps both days, which is just awesome! She had her epidural removed as well, which meant no more walking with the pole. They removed more chest tubes Friday, which is great, but Mom has an air leak from this, so she has puffed up quite a bit and sounds like she sucked on a lot of helium. This is fairly common and the doctors are not concerned about this, they cannot remove any more tubes until it goes away though.

Day 10 (Sunday, August 15, 2010) - Michael and I visited Mom Sunday afternoon, we walked two laps together (I was a much better helper since the pole is gone!) The pain medicine definitely makes Mom pretty sleepy, but we had a nice visit. I showed her all 200 photos from my party. We definitely missed Mom and Lee Saturday, but the best birthday present I could have asked for is Mom receiving her lung transplant.

If you aren't an organ donor already, please sign up today. We are so fortunate that Mom's life has literally been saved because someone signed up to be an organ donor.

Thank you again to all of you for your love and support.


Monday, August 9, 2010

Day 3

Well, we've made it to Day 3 post transplant. Mom is doing very well. She has been walking three times a day like she is supposed to. Yesterday (Day 2) she even walked more than one lap in one walk. She has to be able to walk 20 laps (one mile) in one day before she is allowed to go home. She is having plasmapheresis everyday so far to make sure she doesn't have any antibody issues.

We are very pleased with her progress. When I have something new to update, I will make sure to update the blog for all of you. Thank you again for your continuing support and encouragement, Lee and I really appreciate it. Mom is still in the ICU, so she can't have any calls, deliveries, etc. Lee and I are not able to even see her for very long each day. We will make sure to let you all know as soon as she is able to receive anything.


Saturday, August 7, 2010

Update on Mom's Transplant

We have finally reached the the Double Lung Transplant part of mom's journey. It feels like it took forever, but it was so worth the wait. Mom and Lee received a call around 9:15 Thursday night that they found a perfect match for her lungs and they needed to head over to the hospital. The surgeon had not looked at the lungs yet, but if they were viable, they would take her in for surgery. We thought she would receive that call between 12:30 am and 1:30 am. Well that time came and went. Around 2:15 they said it would be another couple hours. At 4:15 am Mom received the call that it was a go. She called me and said we have lift off! I was so asleep that I had to say...What does that mean? She said it was a go!

Then next step in our journey began. Mom and Lee waited for her to be taken to surgery. Michael and I raced out of the house to head over to Duke. We did not get to see Mom before surgery, but knew that was likely. They took her back around 6 am and we received notification that they started the surgery around 7:45 am. It was a VERY long day! A little after 4 the surgeon came out to see us. He said the surgery went well and they were good lungs. He said it was a one in a thousand opportunity to find a match for her.

We got to see her around 5:30 and she was still under anesthesia, but everyone said she was doing well. I saw her again around 6:30 and Lee and their Pastor, Tom, got to see her around 8 pm. It was hard to leave without her being awake. I hadn't realized that she wouldn't be awake when we saw her, but this is normal.

I called for an update before going to bed and she had started to open her eyes, which was great to hear. When I arrived this morning she was still on the ventilator, but was alert and smiling. They did plasmapheresis again today and after finishing that, they removed the tube. I saw mom for the first time in 2 years without oxygen. So amazing!

She is now talking and smiling. She truly looks great, she has more color in her cheeks. The Associate Pastor, Tim, came to see her and said it best - you are the only person in the ICU with this big smile! It is so true, she is so excited to have new lungs and is very happy. We still have a long road ahead in her recovery, but every step of the way is worth it.

In the ICU she has her own personal nurse, they have all been great and are super informative. I will post some pictures soon.

Thank you to everyone for your continued thoughts, prayers, calls, texts and emails. I will try to respond to all of you, but I'm sorry if I don't get back to you right away.