Saturday, March 20, 2010

It's March...

Hi everyone. 

I know I haven't written in a long time (thanks Vanessa and Gordon for your reminders!!!) but I was going through a weird time when I was losing my confidence.

As you can see, we are both now smiling and we are moving on from my pity party!

I don't know if you can see the green tubing - instead of clear - that I now use.  It is for higher flows.  I don't know why you can't use the clear.  Who knows maybe it would blow out or something.

I'm sure you all want to know if the new drug worked.  Well, so do I!!!  They won't know until they run the HLA blood tests on April 14th.  Somehow I expected instant results.  That definitely got me down for a little while but oh well...if it works I don't care how long it take.

I saw Dr. Zaas on the 10th and he told me that he's keeping a lot of people really busy because of me.  Whenever a set of donor lungs that would be the right size and blood type for me becomes available they immediate ask for blood to be shipped for a quick HLA analysis.  There's always that hope for a perfect match.  I sure know they are trying their best. 

I'm feeling pretty much OK.  I have good days and I'm glad for them.  I now have more "not very good days"  where it's a chore to go to rehab and it's just plain hard to exercise.  But Duke doesn't care if it's hard...they just care that you do the best you can.  Whatever it takes to keep your strength up.  I do sometimes wonder if this exercise is using up all my muscle and leaving me with nothing in return!  I'll have to ask one of the rehab staff.  My next appt with Dr. Zaas isn't until April 14th.  If anything comes up before then I let everybody know.

This is the Fitness Center. It shows the track that we walk around every day. Walking is absolutely the hardest of all the exercises!

Oh! I almost forget to tell you that Lee has now joined the gym. He can work out with me.  I use the word "can" loosely because Lee didn't want to go to the gym.  So...I just signed him up and paid for it.  I knew that if I paid for it then he'd go!  I had to drag him in (a little kicking and screaming) but I think he may like it a little. He was really surprised after the floor exercises. They kicked his butt and he had to admit it because he had a surprised look on his face ;-)

Now on to the other part of our life!

We finished another puzzle.  Lee actually did most of it and that's not easy when you're color blind!  He goes pretty much by shape and picture but he can't see the blues and greens.  I guess that explains why it takes him longer ;-)

Here are a couple of pictures from Amy's friend Crystal's baby shower.  Isn't the cake cute?

 And here's a picture of Crystal and Amy...

They've been friends for ages and Crystal was Amy's maid of honor in her wedding.

Amy and I went to our weekend scrap book crop.  It was a lot of fun but it will definitely be the last weekender until after transplant.  Sometimes it's a lot of work to have fun!

Oh!  Here's a picture we haven't seen since we got here...commuter traffic!  It was really backed up but it turned out there was an accident on the other side of the road.  Otherwise it would be the normal - not crowded - traffic.
Below are a couple of pictures of Lee and Missy.  Lee does a lot of the cooking now because for the most part I don't have the energy.  He's already told me that he knows I'll want to take over post transplant.  Really?

Isn't Missy cute?  She sure loves Lee.  The other day I offered to take Missy out for a walk and she wouldn't go unless Lee went too!  Spoiled rotten!!!!!!

This is a picture of our friends Susan and Don.   Susan had a single lung transplant the first part of January.  She looks great and is doing great.  They are really good people and Lee and I are both glad we met them!

Lee and I drove up the Winston Salem so that I could go to a baby shower.  We drove by some interesting property.  Wonder what this would sell for?

And then there's the house that offers separate mother-in-law quarters.  I hope Amy and Michael don't snatch this one up!

Honestly though...these are really old (no kidding!) and it amazes me that they are in the middle of a pretty well developed area.  It's sort of historic.

On to another happy note...Spring has finally arrived.  The other day I saw robins playing with each other and singing.  We hear birds singing all the time now.  Lee said he wasn't sure NC had birds because he didn't hear them when we arrived.  I think they'd flown south for the winter.  They would have to leave NC if they wanted mild weather because we all know NC is not a "mild southern state".

Lee and I went to Lowe's Hardware the other day and purchased a hummingbird feeder.  It is proudly hung on our patio.  Now we just need the birds!

I took some pictures from our patio of the spring look.  We still need the leaves on the trees but that will be here really soon.

I wish I had more information to tell you all but I just don't right now. In a way that's good...since we don't know if the drug worked, I don't want to tell you that I'm getting really really bad!

That is just my way of making it "the cup is half full"

Love to all and happy spring!

Lee, Wendy and Missy

Friday, March 5, 2010 new friend?

Two weeks ago - at the Tuesday meeting, the HLA docs said my anti-bodies hadn't gone down at all.  Dr. Palmer then asked if we use Bortezomib and the antibody counts go down will the group feel comfortable to open up to donor pool based on reduced numbers.  Good that the team voted "yes".

The best news I received on the 19th of February was that my insurance company approved the use of Bortezomb!  I am SO blessed...most companies would just say "that's experimental for lung transplants so no coverage"  Not my insurance -- they just asked for letters & info as to why Duke wanted to give this stuff to me.  Then they said yes!

I started the first of four doses of Bortezomib on the 22nd of February.  It was very fast and I was done with the first treatment in no time.  Side effects were hard to figure took me two doses before I realized that it makes me really tired and dizzy and feeling sort of sick to my stomach.  The good thing is that the tiredness lets up a bit and so does the dizziness.  The stomach stuff is just a little wierd. 

I've been having weekly blood tests to look at my platelet count.  I had one yesterday and don't have the results back but I'm sure it's just fine.  The test last week showed the platelets in the normal range.

I have one more treatment - next Monday - and then I don't know what will happen next.  I'm not even sure the docs know what will happen next since they don't have any history to follow protocol.  I guess we are making up the protocal as we go along ;-)

I've asked several times how long it will take before we see any results (reduced antibodies) but no one has given me an answer.  I don't know that the team knows!  I hope they get some results soon because between the IV treatments and the blood tests my arms are a roadmap of bruises.  It's not a really good look - especially because they've started poking my hands now.  That doesn't feel good and it too bruises. 

I'll let you all know when they find some results.

Now on to other news...
  • my friend Susan (transplanted in early Jan) was released to go home.  She lives in North Carolina (about 3 1/2 hours from Duke).  Susan is doing super!  I miss visiting with her - and her husband Don - but once transplanted Lee and I can go visit them!  They'll have dinner with us when they need to come back for checks at clinic.  Susan had high antibodies too.  Her's were around 70 and they found a perfect match for her!  There is hope!!!
  • my friend Karen was just called for her transplant on Tuesday.  She too had antibodies and they also found a match for her!  Karen is still in the hospital but she was up and walking on the day after surgery!
  • I'm starting to feel a little down because everyone is being transplanted but me.  Duke has transplanted over 50 people since Lee and I got here in late September.  I just want to be next!!!  Okay, I know that sounds really selfish - and it is - I'll suck it up and get over this feeling.  In reality, Lee and I are grateful to be at Duke because the CA hospitals would have likely have given up after rituximab didn't work, if not sooner.  I would have been sent home to die ;-(  I know that doesn't sound nice but it is reality!  Given that scenario...I'm so glad Duke is still trying and I know for a fact that they are as anxious as we are to get me transplanted!!!
  • Sheila (rehab - transplant liason) told me about one patient that had higher antibody numbers than me.  This was before the days of rituximab.  The patient lived in South Carolina and after four months the team felt bad that she was having to spend all the out of pocket costs to wait for a transplant that might never happen.  Her husband had needed to go back to SC for work and it was just she and her daughter at Duke.  The team told her that she might not live long enough to get a "perfect match" so if she wanted to just go on home they would respect that.  The patient said she would stay at Duke.  It took quite a while but she did get her match and is still doing fine!  THERE IS HOPE!!!!
  • It snowed again this week - Ugh!  I wonder when Spring will hit here.  I think we've had more snow than rain...that's weird.
  • I've been embroidering some orders - b-ball caps and burp cloths.  That's always fun!
  • Did I already tell you guys that we found a new church to attend?  It's really nice and - very important - the people are really nice!
  • Lee and I miss our friends and family in CA and wish they could all come out to visit!  We have a queen sized air mattress and a couch for sleeping!  We'd love to see our CO family out here too!
  • I'm heading to a weekend scrapbook crop with Amy.  For the last two years I've been flying out to go to it so this will save some money.  It's really fun and I'd love for Vanessa and Sue - and any other scrapbookers - to come next year!  We could have our own table!  I have more pics but I'll show them in another post. 
I hope everyone is doing well.  Please let us know what you all are doing.  I read updates on facebook for a lot of you about what all you are doing.  I just keep reminding myself that Lee and I can do those things too once I've had my transplant!!!!  It gives me incentive to keep on plugging along!

Love you guys,

Lee, Wendy and Missy