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

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