Tuesday, April 20, 2010

Disappointed in April

Hi everyone.

We just got news today that the new drug (Bortizomib) did nothing!  It didn't reduce my antibodies at all.  To say the least I am disappointed.  Lee is worried and I'm not sure where Amy fits in between the two of us.  The test results were discussed today at team meeting and Khara said Dr. Zaas is going to investigate what Kidney Transplant folks do in this case (Bortezomib didn't work).  No one wants to just give me another dose if it's not going to do anything.  Is there a different combination of drugs to try?  Add pheresis (blood cleansing - like dialysis)?  Just wait for a perfect match?

I know I'll have an answer as soon as the team does.  It's just a little bit hard watching the others get lungs and I'm just hanging out.  This experience is teaching me a great deal about patience and God does know I need to learn that ;-)  It will be OK...I really believe that - I know sometimes it's hard to see my belief but it's always there!  When I hear anything new I'll post it (sooner than later!)

What else have we been doing since Easter?  The weather has been awesome.  I just love it and hope it lasts for months.  Lee and I have been taking Missy for walks and that's been good for all three of us.  Missy loves having both of us taking her.  I use my walker because the longer walks - and going up hills - is hard to do. 

We bought patio furniture and a garden...
The rockers are very comfortable and we can pretend we are the porch of our old Southern House!

We have high hopes for our garden.  We have tomatoes this year.

Our friends Susan and Don came for dinner and brought us this beautiful plant.  Now I just need to keep it alive!  I'm thinking that will be harder than the tomato plants!

Lee and I had our spring photo shoot with Robert.  We went to a park right around the corner from us.  Robert took around 100 shots and here are a few...
This is a beautiful park with lots of green - grass and trees everywhere- and a pond with a fountain.  This is where the geese hang out when they are passing through.

This is in front of our apartment when we're all done.

This is pretty much it for now.  I have another doctor's appointment the middle of May.  Hopefully before then I'll have good news!!

Lots of Love,

Lee, Wendy and Missy

Saturday, April 3, 2010

A few more pictures

Hi there.

I wanted to add some pictures that I didn't have last night when I blogged.  Amy came by today on her way to visit her Crystal and their new baby girl.

These are just a couple more pictures from the hospital trip for transplant.

This is the heliport on top of the hospital.  The nurse said it wasn't the Duke helicopter because that one is a really dark blue (Duke blue).  No one in our group new where the copter came from.

These next two show Lee.  You can see from the first one that he was originally sitting on the other side of the glass door by himself.  Amy and I roped him into the room with us and I think it was better.

Last night, because I couldn't sleep, I baked 6 dozen cup cakes.  At first I stopped at 4 dozen but then just kept on going!  Here are pictures from that along with pics of my beautiful frosting.  Martha Stewart move over...Wendy has arrived ;-)

This is the first time I had ever used one of these bags.  It was really fun!

And here she is...the frosting fool!

All done.  Now we give most of them away! 

We weren't done for the day.  We moved on to decorating Easter eggs...

We made some really pretty colors...we thought!

And here are our eggs.  We can't recommend the purple or the denim blue and the pink took 30 minutes to color!

And now...a picture of our baby girl!  Isn't she beautiful?  It's hard to believe she is 9 years old.

We hope each of you has a beautiful Easter.

Love to everyone,

Lee, Wendy and Missy

Friday, April 2, 2010

March was a long month!

Hi all.

The title says it all...Lee and I are both tired after this month! 

Since I blogged on the 20th, I've been to the hospital twice :-) and :-(

The first call to the hospital was on the 24th of March.  It was my FIRST call for lungs.  It looked like they had a "perfect match"!  Woo Hoo!!!!! The call came in around 8:30 a.m.  Lauren called... 
  1. Lee was doing dishes and I was in the shower when the house phone rang.  It wasn't in its charger and he couldn't find it in time.  No problem...they will leave a message.
  2. Then my cell phone rang.  Of course that phone wasn't sitting right by Lee in the kitchen either.  He stopped doing the dishes to look for the phone while he was thinking to himself "that's Amy.  If we don't answer the house she will often call the cell." 
  3. Lee answered the phone and it was Lauren.  They had lungs that looked like a match and we needed to come to the hospital.
Next thing I know, Lee has whipped the shower curtain open and told me I have to stop because we need to go to the hospital!  Dummy me...I was definitely not expecting a transplant call so when Lee told me that, I figured we needed to go to the hospital for him -- not me!  Maybe he cut himself on a knife while he was doing dishes?  But then Lee said Lauren had called.

I can remember telling Lee that I was going to finish my shower.  Easier said than done when you can no longer remember if you've rinsed off or not!  I finished, got dressed and we started trying to get ready to walk out the door.

Bear in mind that we had put together our "suitcase" to take to the hospital with us a long, long time ago.  It had water, books, puzzles, pillow, snacks etc.  Well...after almost five months we had long unpacked that puppy and never packed it back up.  So...we had to first find the bag and then put some stuff in it.  Finally off to the hospital.  I needed to call our friend Robert to ask him to check in on Missy because we didn't know when we'd be home.  No problem...he's a great friend to us.

I called Amy from the car and she was at work.  Her assistant went down and asked her to call me.  She called me back wondering what in the world could be so important to call her out of a meeting with her boss.  She too wasn't expecting a transplant call ;-)  Amy made it to the hospital with just a couple of problems.  Wouldn't you know it...her Blackberry died and she had to reboot it at home before she could leave.  Not to worry I knew we had lots of time.

Amy called Sharen and the two of them made their calls and texts to let people know we were on our way to the hospital.  They were both great.  Sometimes it can be a little confusing until you've made those call.  We may rethink how we send out the notices next time ;-)

Lee and I got to the hospital and were admitted to the short stay unit.  That's where the lung, kidney and liver transplant patients go Monday - Friday.  They go to the ER on the weekends.  The short stay was great!  The nursing staff was unbelievable.  I know I say that about everyone here at Duke but it really is true!  They are nice and everyone seems to have a great sense of humor.  That is a must-have in lung transplant!

Have I ever mentioned that I have totally crappy veins?  Well, I do.  The nurses in the short stay can attest to that!  It took two of them, working together, to get the blood draw to fill about 30 tubes.  I don't have a clue why, at this point in the game, they need to run all those blood tests!  God help us if they find something else now!

After the blood draw it was simply a matter of waiting to hear the outcome of everything.  Originally the donor surgery was scheduled for 1:00 p.m.  It then slipped to 3:00 p.m.  I don't believe the donor was at Duke because it wasn't going to be an immediate transplant.  For all I know they had to go out of town.  Duke docs fly all over for lungs.  That's one of the reasons that they have more transplants than most hospitals.  Duke has the funding to fly to more remote places to check on lungs and pick them up.  Lots of hospitals can't so they pass on those locations.  I just found that out recently when I was wondering why Duke got so many more lungs than other hospitals.  Here are a couple of pics we took - we were a little bored but excited and nervous too!

Waiting together!

Working while waiting!
All of the soda and water on the table are from Amy and Lee.  They later brought lunch up -- some really nice looking deli sandwiches.  Me...I had nothing.  I felt like the little piggy who had none!  That would be just fine if I ended up with lungs!

Did you notice the recliner that Amy's in.  She had that one and Lee had an even nicer one at the foot of the bed.  We were at the end of the hall in the Short Stay so they opened our glass door outward to create a little "room addition" for us.  It was really nice because we were right across from the rest room.  That will be the room I request next time ;-)

Time was going by slowly.  Of course it was.  This is a really big deal so every hour seemed forever.  We were all getting a little antsy so I called Lauren a couple of times that afternoon.  I wanted to know how things were progressing.  She had no update but she promised that she'd call the minute she heard.  She was on call that day and night so she would be hanging in with us!

Then, at around 5:00 p.m. we got the call from Lauren.  They found another big antigen that would have caused major rejection.  I think Lauren was as upset as I was!  So we headed home - after Lee and Amy fed me!

It turns out - sadly - that no one got those lungs.  They weren't viable enough for transplant.

No we just continue to wait.  It's hard to believe that I been on the list for five months already.  We've been here six months!  Wow!  We sure didn't think it would take this long when we got in the truck to drive out!  But thank God we did.  With my antibody problems we're better off here than anywhere! 

Oh, I forgot to show you Lee at the gym!  He does have a grimace on his face!  Lee made me laugh when we were driving to the hospital.  He said he just knew that as soon as he joined the gym we'd get a call!

So to close out the month of March...I had the "dry run" on Wednesday, the 24th.  I had a good breathing day on Thursday, the 25th - until that night.  Then on Thursday night and Friday, the 26th I was super short of breath.  It felt like I could only get air in about three or four inches into my lungs.  Long story short...I was back in the hospital from Friday - Sunday. 

They needed to give me some IV meds and then it was home and rehab.  They give you NO break from rehab!  I know in my heart that's a good thing but ughh!  We made it hospital free through the end of March!

Here's a pic of some burp cloths I made for Leah (Amy & Michael's family).  Daryl and Leah just adopted the most darling twin babies.  That's a whole blog in itself!  I'm really enjoying my embroidering and I'm also making some t-shirts with my heat press.

April is National Donate Life Month.  I sure hope each of you is an organ donor!  You can't take your organs with you and Heaven knows we need them here!   Anyway, off my soap box...I'm making t-shirts that promote organ donation.  This is what they have on them:  I've made six of them so far and several people at rehab want them.  Yay!

Enough about me, I know I've been blabbing here for way too long so I'm off to bed.

Happy, Happy Easter!

Lee, Wendy and Missy