It's the end of January

Hi all.

We've made it through another month.  It's been a good month - all things considered.

Since the first of the month my breathing has gotten more difficult.  I went to my clinic appointment last Wednesday and had my usual tests (blood work, PFT, ABG).  The PFT, as I mentioned in the last post, was quite a bit lower.  I didn't think it was that much worse but the "brains that be" said it was.  I made a chart of the changes since October:

The blue line represents my Forced Expiratory Volume in 1 Second.  The FEV1 shows what percent of my air I can exhale in one second.  Most people can exhale 75% to 85%.  My percentage has gone from 39 to 28 since the middle of October.  Apparently this explains why I'm struggling at times.  The FEV1 is really important to the docs.

The FVC is a measure of lung volume.  This one isn't as accurate as the FEV1 but they still look at the numbers.

As you can see the percentages have dropped and that basically means I'm moving along my timeline of the "window for transplant". 

I met a new doctor at clinic because Dr. Zaas was in Cancun...nice for him!  I met Dr. Snyder.  She said she had met my x-rays and cat scans in the Tuesday meetings and it was nice to put a face to a set of lungs! 

She seems like a nice doctor and if Dr. Zaas is comfortable with her filling in for him then Lee and I are comfortable with her also.  We talked with Lauren (Khara's parter transplant coordinator) before Dr. Snyder came in.  Lauren really wants to get me transplanted soon.  She is really hopeful that the blood tests I had done that day will reflect lower anti-body numbers.  She was glad that they were at least looking at potential donors...she seems really hopeful.  Whenever they have a potential donor that is at Duke, they run a cross-match with my blood and the donors blood (they have my blood on file).  So far the tests have shown positive for antibodies -- here's a pic of one of the test results:

As you can see, my "T" and "B" numbers are both showing positve with high numbers.

As soon as the results would show negative then we would have a viable donor. 

THAT DAY WILL COME!









So that's about it...my numbers on the UNOS score went up - just as expected - and everything else stays the same.  Still working out at rehab and still hanging around with Lee - both are good ;-)

On a lighter note...it is snowing big time right now.  Lee and I went to the movies this afternoon (thanks a bunch Gordon and Ronda and Keith!).  We made it home shortly after it started snowing.  Here's a picture I took after 2 1/2 hours of snow...
Isn't it pretty?  This is outside our building in the apartment complex.

The next one shows right in front of our patio.

Notice how they salted the sidewalks. 

This brings us current so it's off to bed for me and love to all of you!

Lee, Wendy and Missy

Hanging in there

Hi everyone.

I don't really have any new info except to say that my saturation numbers are going down so my oxygen numbers are going up.

For some reason right after the first of the year my numbers went south - sadly not to the Caribbean ;-)

Now I need 3 to 4 liters of oxygen at rest and 6 liters for walking or other exercise.  I was on 2 at rest and 3 for walking.  I get really short of breath doing some of the simplest things so it has become a real pain.  When I walk from the bedroom to the kitchen to my embroidery room my sats drop to the 80s...ok, time to sit down.  But, I have to walk out of my embroidery room and into the living room before I can do that.  The sats stay down just that much longer :-(

In an organized world I would increase my oxygen level every time I walked around the apartment or took a shower or cooked or anything except sitting.  We are not that organized ;-)  Lee or I would be running back and forth to the oxygen concentrator every five minutes.  While that might be good exercise, it would get really boring and we'd all go crazy!  So at home I try to walk slowly (not easy for me!) and do a little bit at a time (also not easy!).  By trying to do this stuff my sats don't drop as often which is a good thing.

For walking I can't go any lower than 6 liters or my number drop really fast.  I can walk across the room but I can't walk very far without increasing the level. 

Lee and I went to Winston-Salem this weekend for a birthday lunch with Michael's family.  They celebrate all the family birthday's in the month or they just celebrate life if there aren't any birthdays.  January was Lee's b-day month and that was nice.  Two things became apparent at the lunch... First, I could potentially run out of oxygen (at my new higher level) and not have enough back up tanks in the car.  That would be very scary on a weekend day.  Second, no one in the family eats a lot of sweets.  Lee wanted to bring his favorite chocolate cake from Costco (all chocolate with fudge filling and fudge frosting) and we ended up bringing 1/2 of it back home with us.  That's the last thing we need after the holidays!  We took a big piece to Robert - our friend who takes Missy out when we are gone for more than six hours and we ended up throwing out a big piece.

Because we are concerned about running out of oxygen when we are away from the house, the pulmonary people gave me an "oximizer".  It's a tubing that has a reservoir pendant that holds extra oxygen.  That way when I breathe in I'm actually getting 50 percent more oxygen.  Because of that, I can set my tank on 3 and with the oximizer I'll be getting the equivalent of 5 liters.  When I'm walking I can set the tank at 4 and get 6 liters worth of oxygen.  That will make my tanks last longer which will be a good thing!  It's a little bit noisy but it will be great for walking and travel.

Back to my dropping sats...I spoke with Khara (transplant coordinator) and  she made note of it and talked to Dr. Zaas about it and it basically boils down to I getting sicker.  Duhhhh.  I knew that and I'm not a doctor.  They have sort of been expecting this dive and I think they thought it might happen sooner.  I still do rehab every day and they don't cut you much slack there.  I still do the floor exercises and the walking and the bikes and the weights.  I have cut back a couple pounds on the chest press and the leg lift machines but other than that everything has stayed the same.  It just takes me 3 1/2 hours instead of 2 /12 hours.  Lee also drives me most of the time.

I haven't had a lot of extra energy lately so Lee drives me to rehab.  Anyone who knows me well knows I must really not feel good to have Lee driving me ;-)

I go see Dr. Zaas next Wednesday and that's when I'll have another Pulmonary Function Test and blood test.  I expect the PFT will be a bit worse than last time (and boy that's relative because it's always bad!).  This blood test will show the HLA lab (anti-body lab) if my anti-bodies have really gone away.  If yes then they can change my numbers with UNOS.  The lower the anti-body number the easier to find a donor match.

Well that's it for now because I'm going to bed.

Love you guys,

Lee, Wendy and Missy

Where I spend my days...

Hi all.  Is everyone settled in after the holidays?  I hope so.  I still am craving the date filled cookies that Ronda makes every year.  They are so awesome and it's the only time I eat them.  Lee and I missed being with the family at Christmas (Elverta/Rio Linda and Pebble Beach) but hopefully next year...

I realized the other day that I had never shared pictures of the Fitness Center where I spend half of my day Monday thru Friday.  I took some pictures with my cell phone so there's no need to post how bad the pics are...I already know it!  ;-)

I didn't think to take a photo of the outside of the bldg but I'll do that another time.

The first picture shows some of the machines and the floor exercises are taking place in the center of the equipment on the wood floor.

The Center has tall glass windows on two sides to see outside.  It is so pretty...even in winter.  The floor exercise last for 45 minutes to one hour and we work on stretching and strengthening.  I use 2 pound ankle weights and 3 pound dumbbells and a green thera-band.  For teaching a class to a bunch of sickies, they sure keep the pace going!

After the floor exercise I usually go to the bikes...  They are on the far side past the treadmills and other equipment.  They have other bikes but I like the NuStep.  It works my legs and arms.

After bikes, I take a 10 minutes break and then head to the weights and then walking.

Part of the weights are shown here.  I work on lower body one day and upper body the next day.  Then I walk on the indoor track (shown here).  I alternate 20 minutes one day and 30 minutes another day.

I spend lots of hours here and it really is a great place.  Lots of good people.

I'm heading to bed.

Love to all,

Lee, Wendy and Missy

How a set of lungs arrives at Duke

I was talking with Sharen on the phone the other day and we were talking about Lung Allocation Scores (LAS) and how the new lungs get to patients.  As we continued to talk I thought "gee...I should blog about this" so, here you are ;-)

 

For a patient to be "listed" - or placed on the nationwide lung transplant list, the patient has to be tested up one side and down the other.  The doctors determine if the patient needs a transplant and if the patient is in their "window of opportunity".  The window means the patient is sick enough to need a transplant but not too sick to survive a transplant.  That window can be pretty tricky and no one wants to reach the end of the window before transplant...that would be so sad.

 

Once the docs decide the patient is a good candidate for transplant they calculate a "Lung Allocation Score" or LAS for the patient and send that information to the United Network for Organ Sharing (UNOS).  The LAS is calculated based on different percentages for the following criteria:  Lung diagnosis; Date of birth; New York Heart Association Class; Assisted ventilation ; Height and weight; Diabetes; Supplemental oxygen; Percent predicted FVC; Six minute walk distance; Serum creatinine; Pulmonary artery systolic pressure; Mean pulmonary artery pressure; Pulmonary capillary wedge mean.

 

Some of these things are easy to figure out and some are a little more complicated.  They all factor into the LAS but some carry more weight than others.

 

So, now the patient is listed with UNOS and their specific data is stored in the UNOS database.

 

Now when donor lungs become available UNOS searchs the database looking for eligible patients based on blood type, distance from the donor hospital to the transplant center, and age group.  The closest hospital to the donor hospital receives the "offer" for the lungs first.  If they don't have a good candidate for the lungs then UNOS broadens its range and sends offers to more hospitals.  Duke receives a huge number of offers for two reasons...first because there are only two lung transplant centers in the state and Duke has a large number of patients on the list at all times so the center is "flagged" a lot.

Once Duke gets an offer for a set of lungs a team reviews all the information about the donor lungs.  They look at size, blood type, antibodies listing, etc.  Then, the transplant team will call one or more patients to come into the hospital for transplant.  They often call multiple patients because until the docs have actually looked at the lungs, they can't be sure which patient would be best served by them.

Duke has flown all over the country to retrieve lungs and, just like in the movies, they fly them back and the docs take a look at them to determine if they are usable (sadly they can deteriorate before they can be transplanted).  If usable, the team then decide which patient should receive them.

Then they transplant!

So the short list is:

• get listed
• be high enough on the list to receive calls for transplant
• wait for the right donor lungs in the right geographic area
• wait for the right antibody match
•  then it will be a go!

My LAS is still relatively low and I'm still at the first part of my window. There are a lot of patients that are way sicker than me with a much higher LAS. They will, and should, be transplanted before me! At some point my score will be that high and I pray that I'll get my lungs at that point.

My friend Susan had a LAS of 64 (that is really really high) and she just got transplanted Sunday night! That was such great news because Susan was so sick but she, like me, had a lot of antibodies that they needed to try and get rid of. I was worried about Susan because of how sick she was. Duke's normal LAS score for transplant patients is between 30 & 40.

Oh, one other piece of info...

Five years ago no hospital would transplant a patient with antibodies.  I would have died instead of receiving new lungs.  Duke has one of the most high-tech, state-of-the-art HLA labs in the country and they can identify and measure antibodies to the point that they can be dealt with.  Apparently Duke provides this lab service to most of the hospitals on the East coast.  There are still very few hospitals that will transplant a patient with antibodies and I have a slew of them.  We still don't have the results of the chemo treatments on my antibodies.

I'll keep you posted.

Love to all,
Lee, Wendy and Missy

Christmas in North Carolina...

Merry Christmas to everyone and we wish you all a wonderful new year!

While we missed everyone in CA and NV, we had a really nice time here in North Carolina.  We celebrated Christmas Eve with Amy and Michael at their new house and then at Michael's aunt and uncle's house.  That was really nice.

Today, Christmas day, we cooked a turkey dinner and invited a friend from the apartment complex to join us.  He didn't have any family here in town so we asked him to join us for Christmas dinner and that was a lot of fun for all of us.  The turkey was medium rare after 4 1/2 hours so we ate MUCH later than planned but it did taste good once we started eating...I wonder if we were just half starved by then ;-)

Here are our Chirstmas pictures for 2009. 

Before Christmas...

Lee and Wendy.  Robert took these pictures for us.

Lee, Wendy and Missy

Christmas Eve

Amy and Lee

Amy and Mom

Michael and Amy

Martha Stewart has nothing on Amy!

This is a picture of Amy and Michael's back yard a week after the snow.  They really got a lot of snow...

Lee by the downstairs tree.  Doesn't he look nice in that sweater?  Please say yes because I bought it and made him wear it!  :-)

Amy in her Carolina Blue "Fight like a girl" t-shirt.  It makes me laugh that I bought this very Carolina colored shirt at Duke University Medical Center...you'd think they would be more selective in the colors they offer (like Duke blue!)

Lee and his new toy.  He was like a little kid....all he wanted for Christmas was this great big remote control truck and I think he was really worried because none of the packages I brought home were big enough to be his truck.  That's because Amy and Michael bought it for him!  We both want the rain to stop so that we can try it out!

You can see how excited Michael is with Amy's new present.  She was excited!  This picture made me laugh because that look would be on Lee's face also if I was getting one more thing for my craft room!

Michael in his Carolina snuggie.  He told his cousins that he too had a snuggie and they sort of laughed but I bet he'll like it a lot because there house is freezing!!!!

Now on to Carol and Rock's house for lunch

This is Carol and Rock, our hosts. 

Amy, Carol and Leah (Carol's daughter in law).

The gathering.

More of the group.  There were 18 of us in all.  It was really nice.

Christmas Morning!

Christmas socks from Sue.  My sister is known far and wide for her great choice in decorator socks :-) Amy got some too and was so excited that Aunt Suzy didn't let her down :-)  By the way Sue, she was really pleased with the colors too.  Michael even wore his Argyle Chirstmas socks to lunch at Carol and Rocks!

Lee and his autographed cap.  John and Sharen (and Brandon and Emily) got Lee this World Series Championship cap and then had CC Sebathia autograph it.  He's a pitcher and won the ALCS MVP in 2009.  And, in case you thought I was blind or something, I did tell Lee that he looks a lot like a convict in this picture! 

Isn't this the greatest hat for NC?  It will keep his ears warm and he'll be ready to play Daniel Boone or whoever roamed the hills of NC!

Missy and Mom.  Missy really wanted to be in the action!

In fact, here she is looking for a present!

And of course she found a treat!

And this was our Christmas in pictures.  I hope you can see that we had a great time.

I'll blog again after the first of the year unless there's news sooner!!! 

Love to all,

Lee, Wendy and Missy

It's starting to look a lot like Christmas!

Merry early Christmas!

We are getting into the spirit of Christmas and really feeling blessed that things are going pretty darn smoothly.  Nothing new on the transplant horizon but we are ready!

Today we shipped the last of our presents to CA and NV.  Yea! Yea! Yea!  Now I can concentrate on wrapping for Lee, Missy and Amy and Michael.  It's not nearly as bad as that may sound because my very awesome husband has already wrapped the majority of the presents.  I do need to wrap his though :-)

It is snowing!!!!  It's actually sticking to the ground!  Lee and I are really good with this because we have no place we have to be tomorrow.  We're going to stay home and watch Christmas movies and wish we were going to be in Elverta and PB for Christmas.  But, when choosing between a lung transplant and one Christmas with family, we choose to stay in Durham.  It'll be great next year when I can breathe!

I've put some pics here.  The first two are at The Melting Pot with Amy and her best friend Crystal.  It's the first time I'd been there and it was so good.  Lee would have just hated it (way too fu-fu for him) and Michael doesn't like it too much either so we made a good choice for lunch with girls. 

The first pic (not a very good one I know) is of the dessert.  It's dark and white chocolate with all sorts of really good stuff to dip in it!

The second pic is a close up of the chocolate.  I was impressed with how they were able to separate the dark and white.










Now for the rest of the pictures...we show snow!

I needed to go shopping and it had stopped snowing so off I went to the post office and then Target. 

Well, I tried to pretend that the big white blobs that were hitting my window were just large rain drops...I wasn't looking to drive in the snow.

But by the time I got out of Target there was snow on my car and it was getting in my shopping bags!

Here's another pic of the Target parking lot.

I got home from Target to find Lee's CA truck covered in snow.  The poor thing...it's never seen that much snow.

Neither has Missy!

Lee and Missy needed to go for a walk...Missy needed to go a lot worse that Lee did :-)  As you can see, Lee has the clothing down pat for walks.  He's where ear muffs, a Kings beanie, a scarf, gloves, and a winter jacket.

Please note the little princess puppy has her holiday sweater on too.  She actually likes the sweater a lot and doesn't like me to take it off!

Lee has lost his "manly" tan umbrella so he needed to borrow my old pink and purple one (my black paisley umbrella was in the car). 

Don't he and Missy make quite a fetching couple!  :-)

It's looking like Christmas...snow on the cars and ground

outside and our "beautiful" 4-ft tree inside and the presents that

Lee has wrapped.

Joy to everyone this season!

Love,

Lee, Wendy and Missy

It's December and it's cold!

Hi all.

I'm sorry I haven't written in such a long time.  I'm sure it's because I'm too cold.  Lee says I have a new way of saying how cold it is.  North Carolina is "stinkin cold"!!!!  We are wearing gloves and both of us have now invested in thermals :-)

I've been listed but I haven't had a call to come in. 

Since the last time I blogged in the middle of November, I've been to doctor appointments and had more Pulmonary Function Tests and  Arterial Blood Gas Tests and X-Rays and CT Scans.  The results are just what they expected...my PFTs are worse than last month and my ABGs show a tiny bit more carbon dioxide in my blood than last time.  The X-Rays show a slight deterioration in the upper lobes of my lungs and the CT Scan shows no change in the "nodule" in my upper right lobe.

The Team updated my LAS (lung allocation score).  They will do this each month.  As my test results get a bit worse then my LAS gets a bit higher. 

When I saw Dr. Zaas last week he was really insistent that I get an H1N1 shot so ... one more needle!  I think I've mentioned before that each time I see Dr. Zaas it's refered to as "clinic".. Each time I go to clinic I have blood tests (lots of vials), a PFT, an X-Ray and an appointment with Dr. Zaas. 

The people in the blood lab need to go back to school. The lady there had to stab me - that's really what it felt like :-( - three times and she drew some blood out of two of the stabbings but she ran out before the vials were filled.  So, she started sharing the blood between the vials.  My brother and sister-in-law both know more about blood tests than me but I'd think the goop at the end of the vials must mean something so I hope I don't get wierd results because she poured stuff from one vial to another.  Hopefully by next visit (December 30th) they will get a little more proficient at finding my viens!

Dr. Zaas talked with Lee and me about the waiting and wanted to make sure we weren't getting anxious.  Neither of us are because we understand that right now there are people who are way sicker than me on the list and hopefully they'll get transplanted before me.  Dr. Zaas said that the team decided to bring me out as soon as possible instead of waiting until I was critical because he didn't think I'd be able to make a cross country move at that point.  The team wants me in rehab getting strong and buff...oh yeah, I could be in a Kung Fu movie!  OK maybe not but I do feel a little stronger.

I've finished my chemo (rituximab) and IVIG (IV Immunoglobulins) treatments.  They hopefully will kill off the anti-bodies that would reject donor lungs.  Dr. Zaas says it takes a long time for these treatments to kick in.  The blood test I had taken this week to check those levels will most like only show the results of the first set of treatments (first set in October and second set in December).  Well, I hope I'm more receptive to foreign things in my blood than I was.  Because of my anti-body levels and my current degree of sickness Dr. Zaas said it could be another four - six months before transplant....OH PLEASE let's pray it's sooner than that.

Amy Paige came to Durham last Wednesday to go to Transplant School.  They were teaching feeding tubes again.  After attending the class (Lee went with us too) Amy said it wasn't as bad as it could be and she's now traded responsibilities with Lee (again).  She'll handle the feeding tubes and he can take on the insulin shots.  It's so nice to see how anxious they both are to sign up for these jobs!!!

Amy did say that I looked like the healthiest one in the room (patients only).  She is used to seeing me do as much as I possibly can all the time.  Some of the patients aren't as active...if at all.  She was sort of shocked to see how sick some of these people are. I'm probably as sick as some of them but I'm driven to stay active and that makes a huge difference.  One doc I saw said it's really sad but a lot of the patients come to the Durham area for a lung transplant at Duke and simply sit on the couch waiting for the phone to ring telling them to come in - even if it's months.

I'd go crazy!  I'd make Lee crazy!  I'd make everyone around me crazy!  I have to keep active.  It is getting harder at times but Dr. Zaas said to "push through it" so that's what I try to do.  In the last month Lee and I went up to Amy's for Thanksgiving.  That was fun because Michael's family was there.  They are really nice people.  Then the Saturday after Thanksgiving Amy and I went to a huge Holiday Faire in Greensboro, NC.  People come from all over the east coast to this thing.  It was really cool.  Then Saturday afternoon Lee and I went Christmas shopping.  I was beyond exhausted after that day but I think anyone would have been :-)

I've been sewing and doing a little embroidery for Christmas.  I LOVE my embroidery machine.  Amy and I embroidered 144 caps for a new restaurant that is opening.  Heads up to us that they will have six others opening in the new months.  I embroidred burps and bibs for the baby store.  They were really cute!

This last weekend I drove up to Amy and Michael's new house to make cut-out cookies with Amy.  She and I baked and baked and baked.  My Friday night stay turned into a week-end stay just so we could finish the cookies.  They are done and here's some pics:

You've heard of writer's cramp...how about froster's cramp?

It's all in the details!

Amy was so proud of her VERY green frosting.  To quote her "Isn't It Stunning?" 

Our official taste tester.  He was very good at his job!

Amy and 1/3 of the cookies.

Me with 1/3 of the cookies. They really were cute!

Now here are a couple of other pics for you: 

MY BEST BUDS:

I guess they let anyone drive in North Carolina!!!

It looks like I'm really digressing here so that's it for now.

Love to all of you,

Lee, Wendy and Missy