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

Feeding Tubes and ER visit

Hi all.

 

Another fun filled week is over :-)

 

It really is nice here but it's not CA and neither of us is used to all this rain!  It absolutely poured Wednesday, Thursday and Friday and then yesterday was beautiful.  Go figure.

 

It was another good week until today.  I went to rehab and on Wednesday we had transplant school to learn about Feeding tubes.  This is one of the "sensitive" areas with Amy and Lee.  Amy called Lee the morning of the class and told him he needed to listen closely and take notes!  Amy has decided that if she has to choose between the feeding tube (GJ tube) and insulin shots, she'll take the shots!  I believe the whole thought of this grosses her out :-)

Here are some pics and an explanation of the GJ tube...

At least 80 percent of all lung transplant patients end up with a GJ tube.  The primary reason is that we don't want to reflux into the brand new lungs.  I learned today that when my lungs are transplanted they attach the new trachea to my old trachea.  When that happens, my swallowing reflexes will be different.  Apparently I won't have a gag reflex any more so it will be very difficult to tell if I have inhaled food or liquid...  They also want to see if, when I swallow, I keep the food in my stomach or if it comes back up into the esophagus  and lungs.  That isn't good.  So...most people have a feeding tube for at least a while. 

Below is a close up of the tube.  It has three branches:  The gastric (G) opening;  The (J) something and the Balloon opening.  All meds go into the G opening which sends stuff directly to the stomach.  All food stuff goes into the J opening which sends stuff directly to the small intestine.  The Balloon opening creates a small balloon in the tubing after it is inserted so that the tube doesn't easily pull out.

The tube is surgically inserted in my abdomen right over my stomach.  The long tube goes into my stomach.  It has inner, smaller tubes.  The first (outer) layer is the balloon layer.  This layer is only long enough to reach the inside of my abdominal wall where the little balloon will be blown up to hold it in place. Yes, someone asked if the balloon will be deflated upon removal of the tube and the answer, pleasingly, is yes it will. 

From the abdominal wall into the stomach there is a two-layer tube and the out layer is now the gastric, or stomach layer with holes that will allow "stuff" - mostly medicine - to filter directly into the stomach to be consumed by all those acids and other good things - it's sort of like a cylindrical drainer.

From the stomach on into the small intestine is now just the one tube that is connected to the "J" opening.  It too has little holes for the "food" (and I use that term loosely!!!) to filter into the small intestine. The food has to be dripped VERY slowly into the tube because the small intestine can not break it down like the stomach does. Lots of food equals lots of poop! Sounds fun so far!!!

 

This is Lee showing where the tube is intserted into the stomach.  It has a small ring type cover that "screws" on to help protect the hole that is made in my abdomen.  It usually doesn't get infected and crusty so not to worry!

These tubes have stuff going into them so, like any tubing, they could get clogged.  To eliminate that, the lines need to be flushed six times a day (sort of like a fuel line in a car).  To flush them, caretaker takes a giant syringe (shown below) and fills up a certain amount of water (warm - not cold) and shoots the water into the line to flush it out.  We need to do this on the G and the J openings.  Below is a pic of Lee practicing.Oh, I forgot to mention...these lines have caps on them and when they are not being filled, they need to be capped or have the line kinked.  The nurse said that was to make sure that my stomach contents didn't come spewing out of the tube (stand back!).

I am making light of this but I know it's really necessary and it really doesn't look as hard as it seems.  I know that between the three of us, it will be fine!

Now for today's fun...it really started Friday night.  I was getting ready for bed and noticed that my cheeks were really red.  I thought it was unusual but who cares when you are really tired.

I got up Saturday morning and noticed that I had a rash on my chest and upper back.  It didn't itch so I went about my business.  Saturday night I noticed that my face was swollen and I still had the rash.  It didn't itch and I could swallow fine so off to bed.

Well, Sunday morning (today) I woke up and my eye was almost swollen shut and my face and neck were all swollen.  Lee provided the comic relief my telling me that:

• I had chipmunk cheeks
• I had a pig nose
• I had a wart hog neck
• I had squinty eyes

All in all, I was quite a pretty picture.  Oh darn, i should have taken a pic of that look!  So, after I finished making the burp cloths and bibs that are due to Emma Jane's Children's Store tomorrow, I called the transplant coordinator and explained what was happening.

Short story...off to the ER for evaluation.  It seems that I may have developed an allergic reaction to the antibiotic I was taking.  They said it might be due to the rituximab I'm taking to kill my antibodies -- it lowers my immune system and goofs things up.  They pumped me full of IV benedryl, IV something else, and IV steroids.  It made me sleepy, dizzy and buff (love those steroids :-)

We sure got to the ER at the right time.   There was only one person ahead of me and we got in within a half hour.  The nurse said that the "after church crowd" would be arriving soon.  Sure enough.  When we left around 5:30 the waiting room had more people in it.  If you've ever been to the ER at UC Davis Med Center then I can say that Duke doesn't even come close to the number of people waiting!

Any way, the drugs reduced the swelling (it's coming back now but they said to expect that) and got rid of a lot of the redness.  I need to take new medicine for the next couple of weeks.  The docs said that this will NOT have an impact on transplant.  I'm glad about that because I was pretty concerned that it might.

That's it for last week. This week I have another go around of the chemo drug for the antibodies (rituximbab) on Wednesday and I think that's it.  I'll write again soon.

Love to all,

Lee, Wendy and Missy

It's November now...

Well, we survived our first month here in NC. This is a pic of us after a week of rehab...yes we know we look a little ragged :-)

 It really is beautiful here right now.  The trees are just gorgeous.  I always thought Sacramento had a lot of trees but this place is amazing!  Here's a pic of a road that we take on the way to rehab...


There are so many trees that you can't even see on the other side of the trees.  It's like this on the freeways and lots of the roads.  The different colors of the trees are so cool.  They really do have the fall colors.

This next pic is of the tree across from our apartment.

It's not a very good picture but the tree almost glows when the sun hits it.  Very cool.

Missy loves the grass and the trees.  She has definitely acclimated to apartment living.  She comes and gets us when she wants to go out and she likes to sit in the recliner and watch the world go by in the apartment complex.  She's become good friends with the apartment's maintenance man, Les.  He's really nice and he stops by to help us do little things that are out of his "norm".  He helped us move the TV the other day and that was a Godsend because we would have waited a long time for me to be able to move it!!!

Les said if w need someone to walk Missy or feed her while I'm at the hospital that Lee can call the office during the day and one of them will run down and take Missy out or give her food or water.  That takes a real burden off of our minds.  We are still looking for a pet sitter and we thought we'd found one but ...wow...she was way too expensive.  We didn't want a live-in nanny - just someone to walk Missy occasionally!!!

To change the subject...rehab was really good this week.  I was able to go every day which I haven't been able to do since week one.  I've got 16 of my 23 days in and I should be able to "graduate" the week after next.  I can really tell that I'm getting stronger.  I still get worn out but my muscles feel a little stronger. 

We had two transplant schools this week.  The first one was "What to expect at transplant".  We had already attended this once but it's one of those classes that you'll get more out of each time.  The other class was about transplant medication.  It was very interesting.  The transplant pharmacist taught the class and we really liked her.  She is the main pharmacist who will follow me and my meds once the transplant takes place.  I'll have to keep in touch with my coordinators for the rest of my life regarding medications.  The pharmacist discussed the medications that we will all most likely be on.  Prograf is the main anti-rejection medication that is prescribed and it's a little tricky getting the dose just right.  Once we are discharged from the hospital we will be having weekly blood tests for the first several months to check our Prograf levels.  They'll keep tweaking the dose until it's just right.  Prograf interacts badly with lots of different meds and that is the main reason we can't take any medication without transplant approval.

Prednisone and Imuran are two other meds to help prevent rejection.  Most of us that are there for a transplant are only too familiar with prednisone (weight gains and mood swings) but the docs do try to reduce the dose to 5 mg a day and that will help.  I've never heard of Imuran but it must be a wicked drug.  If there is a female that is pregnant or might be pregnant, they can't touch the pills or inhale crushed pills!  That means Lee and I will be the ONLY ones to touch those pills!!! 

Next, I'll be taking drugs called Nystatin (prevents thrush); Septra SS (prevent PCP pneumonia); Prilosec (stomach acid); Valcyte (prevent the CMV virus); Multivitamin (no mega vitamins...just the simple ones); Citracel with D Maximum (it's calcium citrate with is easier to absorb); antibiotics for about 3 months; baby aspirin; and pain meds.  I'll also be taking the meds I'm on now except for the inhalers and other breathing meds...those will be gone.  The biggest thing I'll get to eliminate is the oxygen.  That will be so great!!!

The pharmacist also explained that we'll never be able to take Advil, Naprosyn, Orudis, or Celebrex again.  Those are anti-inflammatory drugs and, when combined with the Prograf, will damage your kidneys.  Since I mainly take Tylenol only that shouldn't be too much of a transition for me.

Have a great week-end and Happy Birthday on Saturday to my brother Gordon!

Love,
Lee, Wendy and Missy