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

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

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!

Love,

Lee, Wendy and Missy

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

Bortezomib...my 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 out...it 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

Anti-Bodies Are Not My Friends

Well it seems that my antibodies weren't affected at all by the Rituximab and the IVIG drugs I was given to get rid of them.

That's just not a good thing because I'm getting sicker and my donor pool is still miniscule.  The docs have been watching my antibody levels for several weeks.  This last Tuesday, at their team meeting, they decided it was time to stop "watching" and start something new.

Dr. Palmer (another of the team) and Dr. Zaas came up a new game plan...a new drug...Bortezomib.  Aren't these just great names?  I wonder why they never make a drug that people can pronounce...maybe it won't be as effective! ;-)

The short story on Bortezomib is that it's a pretty new drug.  It's in a family of its own. 

It is a cancer drug that fights multiple myeloma (MUL-tih-pul MY-eh-LOH-muh) -- "A type of cancer that begins in plasma cells (white blood cells that produce antibodies)" and mantle cell lymphoma (MAN-tul sel lim-FOH-muh) -- "An aggressive (fast-growing) type of B-cell non-Hodgkin lymphoma."

The docs like this drug for a couple of reasons.  It fights the cells that create my antibodies and it concentrates on B-cells which are the big problems for me.

The iffy part about taking this is that it hasn't ever been used on a lung transplant patient.  Now that might make some of us step back and say "Wait Just a Sec" but what the heck...there's a first time for everything!

There are several side effects but the ones that Dr. Palmer wanted to discuss with me are:

• Peripheral neuropathy: decreased sensation and numbness and tingling of the hands and feet.
• Nausea and vomiting
• Bone marrow inhibited

These side effects hit a lot of the patients so we want to hope that I'm going to be one of the few that don't get any side effects.  Apparently neuropothy can be pretty painful and is the most common side effect.  Hopefully if I get it it's not too bad.  Nausea and vomiting can be treated with medication - drugs for drugs ;-) 

Inhibited bone marrow can become a very big deal because I could end up with a low platelet count, low red blood cells, and low white blood cells.  That pretty much translates to my body becoming a neon sign to attract any infection passing by.  I wouldn't have any resistance.  Doctor Palmer said that if my platelets got too low they might hold off on another dose until the bone marrow could produce some more or they could give me a transfusion.  OK this is starting to become a bigger deal to me too!

In case you're wondering why anyone would use this drug  here's the answer:

We have to do something to enlarge my donor pool.  Right now they have looked at potential lungs but none of them are ever OK with my antibodies.  I'm getting sicker and I will continue to get sicker.  If we choose not to try this then I would just wait and pray for a "perfect match" to my antibodies.  While I do pray for that, I believe I need to be proactive in my treatment. 

Dr. Palmer is concerned that if I choose the wait and watch approach I may not live long enough to find a donor match.  Now that's enough to get my attention ;-)

I have complete faith in my doctors.  They are educated and caring.  Between them, there is a LOT of experience sitting around that table every Tuesday.  They proposed this drug to me because it is basically the only known way that I might be able to reduce my antibodies.  I need to do everything I can to get rid of those things!

The major obstacle to this undertaking could be the insurance company.  The approval request to give me the drug has been submitted.  The insurance company didn't outright refuse to pay for it - they want some more information to explain why they want to give this drug to a lung transplant patient.  The fact that they didn't deny payment is a really good sign to me!  Let's all pray that they will cover the cost of the drug!

Anyway that is it in a nut shell.  I need to get rid of the junk in my blood so that I won't reject donor lungs!

I'll keep you posted when I hear from the insurance company and when I hear more from the docs.

Take care and Happy Valentine's Day to everyone,

Love,
Lee, Wendy and Missy

Some January pics

Hi again.

I wanted to share some pictures of our month.

I'm crocheting beannies for premie babies at Duke's Neonatal ICU.  It's my way of "paying it forward".  It's also relaxing and a break from other stuff.  Lee wondered if he could learn to do it...nope!

This is the remote control truck that Lee got for Christmas.  He really wanted that thing and I have to say it's just not that amusing when it runs into me by "accident" ;-)  I guess it's better to go after me than Missy...she's scared to death of the thing-  that's our brave baby!

Yes, I have been known to walk Missy too.  Look at Missy's face...she knows it cold out there!  Hey Brandon...do you see the picture on the end table?  We still keep it out even though you've grown some - more like lots!

This is the 1000 piece puzzle that Lee and I put together over Christmas.  We both thought we'd never finish it but at least it had all the pieces!

That's it for January! 

Love you guys,

Lee, Wendy and Missy