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

Listed!

Hi and happy Friday! 

Somehow I thought it would feel different to actually be on the transplant list.  Nope!  It's probably because I know how long it's going to take to find a set of lungs that will work in my body.  Yesterday, just before the lecture part of rehab, several people were saying they were listed and got a call within a day or hours...mine's going to be months so I'm not too worried.  FYI...their calls ended up being "dry runs".

It was interesting to listen to the other transplant candidates asking each other what their LAS (Lung Allocation Score) was...sort of like asking someone what grade they got on a test.  Since I don't even know my LAS I can't participate in those discussions.  Lee and I noticed that Duke has added at least ten people to the group since I started the first of October.  They keep on going!

I didn't have any tests this week (after my non-tests on Monday) so I've actually been able to go to rehab for the remainder of the week.  In an earlier blog I had mentioned that I'd have to go to 23 days of rehab both before and after transplant.  When I said that I was thinking to myself how easy that would be.  Nope!  It's not easy at all to get 23 full days in.  Since I started on October 5 I have completed only 10 days!

Lee and I went to two "Transplant School" classes this week.  Those are lectures for the patient and caregiver that are geared specifically to transplant.  The first one was about diabetes.  It's very likely that I will have diabetes, at least for a while, after the transplant.  Apparently they start testing your blood sugar levels during surgery and start insulin as needed right then!  The medications that I'll be given have a real tendency to drive sugar levels way up.  Then, as they taper down those meds, my sugar levels might drop back down.  But...not necessarily.  That's why they have a lecture specific to diabetes.  Finger pricks and shots may become a new way of life but I will be able to breathe and that's a good trade-off for me :-)

The second lecture was about Duke Home Care.  Alice, the head of Home Care came to talk to us about how we won't be alone - even if we might feel like it.  They are going to teach us (patient and caregiver) how to do all sorts of stuff like giving insulin shots or cleaning feeding tubes or hanging food for the feeding tube, etc.  She did stress that wound cleaning was not required of the caretaker.  I was glad to hear that for my caretaker team ;-)  All in all it was interesting and Lee was good with what he heard.

It seems to have been a long week for both of us.  We're both tired and ready for a rest with no appointments for the next two days.  I have a massage appointment at 9:00 tomorrow morning but that's different!!!!

The waiting continues...

Have a great weekend.

Love,
Lee, Wendy and Missy

Week 4 of Rehab

It's hard to believe that we've been here long enough to have a blog title that says "week 4"!  It makes me wonder if we will ever get the apartment completely settled.  Every time it starts to look good, we just unpack some more boxes and there you have it...instant mess!!!

Today was another IV medication day.  Instead of the Rituxan today I received IG medicine (as if I understand that :-)  Apparently the protocol is to alternate the medicine to kill off my antibodies with immune system boosts on the other week.  It doesn't make a lot of sense to me to "boost:" my immune system because I thought that was what was causing these antibodies...I guess not.  Maybe by the time this is over I'll have a good grasp on the medicine.

After the IV session (only four and 1/2 hours this week) I went back up the the GI lab to have the ph probe stuck down my throat for 24 hours.  I wasn't looking forward to it and I still feel sort of cruddy.  When they told me that the test I had last week (big probe in throat to see how I swallow) had to be repeated I drew that magical line...NO WAY were they going to do that one again unless Dr. Zaas said it was mandatory.  The girl was very nice about it and kept telling me she understood however she was going to stand firm on repeating the test.  I called Khara who called Dr. Zaas and the short story is that I some how got out of both tests (no probes for me today!!!)

By then it was around 2:00 and I hadn't eaten so I went home instead of rehab.  I was going to do some work around the house but I fell asleep and didn't wake up until 5:15 p.m.  It really cuts down how productive you can be.  Vanessa...that's why I need you to come out for a couple of weeks.  You'll get me into shape.  We could then both go up to Amy's and help here organize her new house!  I'd sing Disney songs :-)

Khara is going to talk to Dr. Zaas and make sure there is nothing else that needs to be done so that they can list me...I have mixed thoughts on that..."finally!" and "so soon???" 

I was thinking that being on a transplant list is sort of like being pregnant.  You have to be ready to go at a moments notice.  Lee and I need to finalize our "ducks in a row" to make sure there aren't a few still swimming in the pond.  Can it be possible for Lee and I to be so organized that we won't forget to arrange for Missy and we keep gas in the car so we can go somewhere at 3:45 a.m on Sunday if we need to and we remember to have our cell phones charged and we remember to have them with us and and and and...it seems a little daunting when I start writing it all down.  Not to worry because that's why we can out to NC.  We weren't born ready but we're working on it :-)

Lee's not feeling really great and I hope I didn't give him the flu.  What a group we make when Missy is the healthiest one!  I'll try to give him orange juice and vitamin C!

Well tomorrow I start rehab again and it will be like starting over.  Having missed this much time isn't a good thing.  My miniscule muscles start wimping out as soon as I stop exercising.  I wonder if they'll take it easy on me or start me where I left off...I'll let you know.

Hope all is well and I'll talk to you soon.

Love,
Lee, Wendy and Missy

TGIF - next week's got to be better!

I haven't felt good since Wednesday night...cold?  flu? Who knows and it really doesn't matter what they call it if you don't feel good.  Duke took a strong interest in my being sick and I am now on an anti-biotics, a steroid and tami-flu.  Those ought to do something!!!

I don't have a sore throat any more and I'm not coughing as much and my headache is pretty much gone so I keep forgetting that I'm supposed to be sick.  I know that sounds dumb but with all the lung problems I have when I get sick it seems to stick around.  Today Lee and I were lifting stuff and I was moving some things around.  All of a sudden I felt a little dizzy and a little short of breath so off to find the pulse oxymeter.  Well my sat number was 84 (not good) and my pulse was 146 (a little too good).  I sat myself right down and hung out waiting for one number to go up and the other to go down!  It was a bit scary because my pulse has never gotten that high before.  It came down but I need to remember to rest and take it easy.  Who wants to do that when you feel a little better???  I'll be a good patient this weekend - practice for the transplant :-)

I got the results back from my PET scan...I have an odd little module in my upper right lobe that they can't really determine if it's malignant or not.  Don't freak out Amy because there is lots of good news and not any bad news...

• The nodule hasn't grown since the CT scan in August
• No lymph nodes are inflamed
• No where else on my body "glowed"
• If it is cancer then the transplant will cure it!
• They will definitely still transplant if it came out as cancerous
• The only way to determine if it's cancer or not is to have a biopsy and why bother if we're going to take out the whole lung!

No down sides.  I thought I'd be worried about this but I really am not.  Khara isn't worried at all and with her experience in this field, I feel comfortable going with her intuition.  Khara's going to present it at Team Meeting on Tuesday for Dr. Zaas and the surgeon to talk about.

I'm just really glad that nothing unexpected showed up...that would have been a real bummer and could have created transplant problems.  The only test left is to swallow the probe for 24 hours.  I tried everything I could think of to get out of that but it just didn't fly :-(

On to some good news...a garage came open today so tomorrow - unless it rains - we can move all the junk we've been piling up in the dining room into our new garage.  Wow, it will seem like our apartment got so much bigger!  I don't know if we are going to move our dining set that we currently have in the kitchen into our dining room or leave it in the kitchen.  I'll just leave that up to Lee, our interior decorator!

The craft room is coming along.  I have all the embroidery thread organized (thanks to Lee) and the sewing machine and serger and embroidery machine are all set up and operating.  My newest toy, a Stahl's Heat Press, is now set up and I've done my first three shirts...VERY cool!  Guess what you're getting for Christmas -- just kidding :-)

Oh!  I should have shared this info right up front....
Lee drove to Walgreens three times today and didn't get lost once!  He wasn't using his GPS either!!!
He said he's going to try for the grocery store tomorrow without using GPS.  I think his goal is to be able to drive three miles in any direction without GPS :-)

Missy is well...she LOVES her walks because she gets Lee with her.  Today Lee and Missy walked a couple of miles through the apartment complex and down the street to the stop sign.  It's really great exercise for both of them and they both come back with smiles (or wags)!

I'm done blabbing and off to read my book (the last of the Twilight series).  I wish I'd never gotten hooked on those books but now I want to read the last one slowly to make it last!

Love to all and hope everyone has a great weekend,
Lee, Wendy and Missy

Just some more info - Wednesday October 21, 2009

Wouldn't you just know...I've got a cold. 

I've been pretty healthy (and I know that's a relative statement!) since I got out of the hospital in May.  I've been on a good amount of steroids since then and I know that has really helped.  I woke up yesterday and was pretty much out of breath.  As the day progressed I was still short of breath and last night I started really feeling sort of nasty.  I ended up trying to sleep in the recliner because lying down in the bed was hard for my breathing.  As many of you probably know from my 3:00 am e-mail I didn't get much sleep last night.

This morning - when my throat hurt and my chest hurt - I called Khara and the answer to my question was " No, do not go to the Fitness Center for rehab".  They don't want me getting anyone else sick.  I was started on anti-biotics (I always keep them on hand now) and I'm supposed to call tomorrow with my update.  If I start running a fever I have to call right away.  When I'm feeling "normal" I forget what a tenuous hold I have on health.  My frail little lungs get wimpy pretty easily.  But that's one of the reasons I'm on the transplant list.

Speaking of transplant list, I think this would be a great time to talk about "Dry Runs".

A dry run is when we get the phone call to come to the hospital and we've called everyone and headed to the hospital and have waited around and then - often several hours later - we are told to go on back home because there is a problem with the lungs and there won't be a transplant today.

I imagine that must be very hard to go through but the staff explained that it does happen to a percentage of the transplant patients.  The main reason would be because Duke makes the decision to accept the lungs of the donor based on a phone call from other people.  Those people provide test results (discussed yesterday) and blood type and size and I'm sure different specific stuff I don't even know about.  When Duke says they want the lungs, then someone from Duke goes to get them at the same time they are calling the patient to come into the hospital.  This is important because they want the patient to be prepped and ready to go when those lungs arrive at the hospital so there is minimal time out of the body.

When the lungs arrive at Duke then the docs take a look at them and do other tests (I'm guessing).  At that point if the surgeon doesn't feel they are going to be OK he will cancel the procedure.  He doesn't want bad lungs replacing bad lungs.  Now that does make sense to me.

So the reason for this discussion is just a heads up that that might happen.  I'm hoping it doesn't but we need to be open to the possibility.  Going back to rest now.

Love to all,
Lee, Wendy and Missy

Is is only Tuesday????

Wow!  It's only Tuesday and I feel like I've done enough for the week :-)

Yesterday morning I went to have my first IV treatment to reduce the antibodies in my blood.  Lee went with me and for some reason I thought it would take around one hour....we were finally finished at 2:10 in the afternoon!

These treatments are done in the oncology treatment clinic and I was quite impressed with the way they have things set up.  I arrived at Clinic 2A (took me 15 minutes to find the place!) and told the receptionist my name and that I had an 8:30 appt.  She checked me off and gave me one of those vibrating beepers like you get at The Outback Restaurant...I'm not kidding...it made me chuckle to myself.  But it really was efficient.  No one had to have their name called out and when yours started to beep you just took it to the nurse across the hall and she greeted you by name and took you to your table - ok, your bed.

My nurse, Brenda, was super.  Not only was she really nice, she started an IV in me on the first try with no pain...that is an absolute first!!!!  I asked her if she could come to all my tests where I need an IV put in but unfortunately she's pretty tied up in oncology.

The medicine I am getting is called rituxan - or rituximab - and it's used primarily as a chemotherapy drug for people with lymphoma.  I am receiving it because it also kills off the b cells - whatever they are - and help to get rid of antibodies that would cause me to reject donor lungs.  The first course of treatment - there are four - is done very, very slowly to see if I am going to get a reaction.  They always start the treatment by giving you IV benadryl and IV solumedral (a steroid) and two tylenol.  I don't know why they do that but it's protocol so I go with the flow.  I did really well with the medication and didn't have any reaction.  Because of that, I'll only need two to three hours next week. 

Today I went to the GI Special Procedures Lab (doesn't that sound impressive!) for a motility test (can I swallow right) and a ph test (stick a probe down my throat for 24 hours to measure acid in my stomach).  Well I didn't read the fine print and didn't stop taking my acid reflux meds.  Because of that they were only able to do the motility part of the procedure and I go back next Monday to have the probe put in for 24 hours. 

I hadn't eaten all day because of the GI tests so we went to lunch in the food court in the basement of Duke South (all the clinics).  I use the word food court very generously because it's just nasty :-(  They are going to be opening a Chick Fil a express soon and that will definitely be the highlight of the food court.  We're going to have to branch out and find some other places to eat around the clinic and the hospital or Lee will starve while I'm in for my transplant!  That would be an unpleasant way to lose weight!

While we were downstairs Khara (pre-transplant coordinator) called and asked me to go back up to Clinic 2F (pulmonary) and sign my consent forms with Dr. Zaas.  So we hiked back up there and waited our standard time before they called us in.  The poor coordinator who was working clinic today didn't know how to work Microsoft 2007 (where's the menu across the top????) so she was having a lot of trouble printing out the forms for us to read over before I signed.  Finally success!  She brought them in and then Dr. Zaas came in to talk with us about them.  The first one basically states I want Duke to be my transplant hospital.  The second one says that I agree to make some lifestyle changes and go to rehab and go to clinic and take my meds etc. 

The last one discusses "high risk" lungs...I needed to decide if I was willing to accept lungs from a donor that the CDC termed high risk.  Dr. Zaas talked about this with us for quite a while.  Of note is the fact that the CDC is currently changing its criteria for high risk because the definition as it stands now includes an awful lot of people that aren't high risk.  Duke hospital requests every donor lungs be tested for HIV, Hepatitis A, B and C and a couple of other things I can't remember.  If any of those tests are positive the lungs aren't accepted.  They are told if the donor falls into the high risk category and if all tests are fine, Duke will accept the lungs.  Approximately 15 percent of all donor lungs come from high risk donors as the definition now stands.

Dr. Zaas said that we have the choice of accepting high risk lungs or deciding not to accept them.  Either way was fine with him but we need to stick by whatever decision we make. If we say no then I wouldn't be considered for transplant unless the donor was from a non-high risk group.  If we say yes then I will be told if my lungs are coming from a high risk donor but I will not be told why the donor fits the criteria.  That is to protect the privacy of the donor family.  He wants to make sure we understand what we are agreeing to because last year he had a patient who had agreed to accept high risk lungs and Duke asked for the lungs to come for that patient.  After the lungs came, the patient refused to accept them.  Duke had no other patients at that time that the lungs could be used for and because Duke accepted them, no other hospitals had even considered them.  The lungs ended up in the trash!!!!!  Dr. Zaas said the worst part was they were the best lungs he had seen in over five years.  That really was sad.  What a waste for the unused lungs and the donor family.

Dr. Zaas had said that as far as he knew no lung transplant patient, anywhere in the US, had ever contracted a disease from the high risk lungs.  He said if it were him, or his family, he wouldn't hesitate to accept them.  He also reminded us that Duke really doesn't want the New York Times etc. to be down in Durham because they accepted some bad lungs and infected one of their patients!  All this said and he left Lee and I to look everything over and make our decisions.  This was a tough call and Lee and I made it together.  The final analysis came down to this:

• I'm already going to be cutting my donor pool short because of my antibodies that don't get destroyed
• I don't have cystic fibrosis or pulmonary fibrosis so those patients will be ahead of me
• If I don't include high risk donors, I've cut my donor pool down by another 15 percent
• I am already in my "window" and I don't want to reach the end of my window and not have a new set of lungs. 

I will accept high risk lungs.

We will now turn it over to God because it's getting to be a lot to handle alone.

It's now 6:15 at night and we are both sort of drained.  Easy dinner and kick back with TV sounds good to me.

Oh, one other thing.  I'm going to ask Amy to continue my blog when I actually go into the hospital.  When I'm feeling up to it, I can then take over.  OK with you Amy??

Take care and love to all.

Wendy, Lee and Missy

End of another week 10-16-09

Well the week is over and I've had two more tests. The heart cath went very well except for the bruising. My leg, where they went into the artery and the vein looks purple! And then there are the bruises from trying to put an IV in :-(

I also had a heart echo test with a bubble test. Basically it's an ultrasound of my heart and then they shoot bubbles into a vein to watch how it moves from the right side of the heart to the left. They are looking for leaks. It also meant another IV....ugh

Lee and I were talking at dinner tonight about the transplant list. Dr. Zaas intends to list me next Friday (one week!) as long as the rest of my tests are done. I think they will be because next week is pretty full with tests and tests and more tests! We are trying to make plans but I'm sure we are not thinking of something. We got a house phone because our cell phones weren't that clear in our house and we want to be able to hear the phone if it rings at 3:00 in the a.m. We were talking about Missy -- we're going to ask the neighbor (they are very nice) if they will walk Missy if Lee can't get back to the apt. We were talking about what we do if one of us gets the call and we aren't together (what if I'm at Amy's; Fitness Center; shopping; etc) We will have up to 2 hours so we should be able to connect and get to the hospital in that time.

I have some papers I need to sign with the pre-transplant coordinator on Monday. Per Khara, one is a contract that I need to sign that says I will go by all the rules. Well, if I am going to have a transplant I'd think it's a no-brainer to follow the rules but apparently that isn't always the case. Lee and I still talk about the high percentage of transplant patients that go back to smoking after a transplant - that just makes NO sense to us. It took me 11 trys to quit smoking so I know I'd never want to go through that again!!!!

I'm really looking forward to January when NC law makes it illegal to smoke in bars and restaurants. So far we have only been in one restaurant that still has a smoking section. We have avoided The Waffle House (highly recommended by Stephen) because I know that they allow smoking and they all look like dives to us anyway.

Lee and I both got our flu shots this week and Lee also got a tetanus and I got #2 of Hepatitis B. I know it must seem like we are really big into needles but we really aren't!

I know this sounds sort of disjointed tonight (if not always!) but I'm really tired and I sort of don't feel good so I think I'll head to bed and wake up feeling great.

Love to all,
Lee, Wendy and Missy

Meeting with the Pulmonologist 10-14-09

Hi all.

Lee and I had our first "clinic" appointment. It was scheduled for 8:00 a.m. with Dr. Zaas. I think I mentioned that he's my pulmonary doc and the head of the transplant team.

We showed up at 7:50 and they called us right at 8:00. Yea! Yea! Yea! I only need to loose three more pounds! That's so exciting. My blood pressure was great and my O2 level was 99 (why in the world would I need a transplant with numbers like I had???)

The nurse gave me three pieces of paper and put Lee and I in a room (just as small as CA) and we were set to wait the "normal" 45 min - 1 hour but Khara - the other pre-transplant coordinator came into the room within ten minutes. She - like Lauren - are both RNs that specialize in lung transplants. They both are members of the transplant team and coordinate everything medical for the pre-transplant patients. It's sort of like having your own concierge at the hospital and clinic :-). Khara has just come back from maternity leave (she has a cute little baby girl named Kyneddy) and this is the first time Lee and I have met her. I asked if she was going to be my new coordinator and the great answer for me is no. I will have both Lauren and Khara - at least for a few months until Khara is back on board. Two for the price of one and just that much easier to get a hold of!

Anyway back to the appt...Khara asked a couple of medical questions and started reading my electronic chart. I asked if I could just have the Right Heart Cath tomorrow instead of both the Left and Right sides - it makes a huge difference in the procedure (Left requires an artery and Right only just requires a vein). Khara agreed that because I'd had a Left and Right done in October of last year then the Right is probably all I'd need. She'd ask Dr. Zaas. Other than that she was happy with my progress in Rehab and she left.

Next came Dr. Zaas. He is so nice. First question about our move - how did it go, etc. Then he asked how I like the Rehab program. As you probably have figured out by now, I am really impressed with the program. Dr. Zaas was glad to hear it and he told us that a couple of weeks ago he as visiting another transplant program that asked him why Duke's numbers were so high (survival rate). He said he directly attributes it to their Pulmonary Rehab program - both before and after transplant. Good to know. He liked the weight loss and asked me to continue losing weight if I can...again there's a direct correlation between optimal weight and survival rate. When put that way how do you argue with continued dieting?

We discussed the heart cath and I do have to have both the Left and Right side done. He said he wants Duke to do the procedure because a few months ago they transplanted a man and a couple of weeks later he dropped dead from a heart attack. It had nothing to do with the transplant and they had no clue that he had significant heart issues that should show up on a heart cath. That said, I'll have both sides done. Dr. Zaas said if they do find heart problems they are VERY aggressive towards fixing them and it will not rule out a lung transplant - it will just require more work before the transplant.

We talked about the esophageal wrap surgery that I will probably have to have. It keeps acid in your stomach and doesn't let it go back up into the esophagus to ruin a new set of lungs. They do that surgery two to three weeks after the transplant.

After all the not fun discussions took place Dr. Zaas leaned back in his chair and said "why don't we try and move your PET Scan to next week so we can list you next Friday". Good thing I was sitting down because I was really surprised. He probably knew that because the first words out of my mouth were "Are you sure?" He was sure.

Then we talked about those nasty little anti-bodies that I have in my blood. You know...the ones that would attack 90 percent of the donor lungs I'd receive. He doesn't want to to the cleansing process (where they take out all the anti-bodies) because there is a stronger chance of infection. It's pretty much dialysis. I'm going to have a series of IV medications given over the next 4-5 weeks. They will kill off the anti-bodies. Meanwhile they try to match me up with a donor that doesn't have all those anti-bodies. He said that most people with anti-bodies get their transplant before they ever finish their IV treatments.

So now I'm really excited and really scared! Every time I think I've seen the reality of this situation something comes along to make it more real! End of next week....WOW! That means we will have to be available 24-7 and could get the call at any time. WOW! We're ready. Sure we are :=)

Amy called to see how the doctor's appt. went. When I told her about next week she was really surprised. She then asked what her responsibilities were as the back-up caretaker. You have to laugh or you'd probably cry so I'm laughing!!!

Amy got just as freaked out as Lee did when she heard what he was told last week. Flushing PIC lines. Cleaning Feeding tube clogs. Giving food through the feeding tube. Giving Insulin shots. Amy thought these sounded like jobs for a home health worker and shouldn't we have one? I explained it was really easy (according to the person who told us about it) and that they will train her and Lee in how to do this stuff. I'm going to quote Amy on my favorite and most reassuring comment she made during the conversation...."I don't know if I can give you a shot. I might faint." Oh joy! The only difference between Amy and Lee is that she voices her concerns and Lee keeps his to himself - but it's very obvious! Lucky for Amy that Michael's Aunt is a nurse. I suggested Amy discuss this with Carol so Carol can reassure her. Maybe Carol could reassure Lee -- and Me!

Not to worry though. I have complete confidence in both Amy and Lee. I love them and they love me so I'm sure they'll do well. Lee thought it would be a great idea to fly Vanessa out too as an additional support person. Oh you bet! This is the person who told me if I pulled out my own IV she'd have to hurt me! She watches House so she knows how that stuff can fly all over you! Poor Vanessa had to sit with me in the ER while I was still in Sacramento. We sat for hours and it gave me an opportunity to learn more about her. Let's see, she doesn't do needles (she too faints) and she doesn't do blood! The more I think about it, Vanessa would probably be a great addition to the support group! Either way, I'd love for her to come out for a long visit...you too Stephen. I love you guys and miss you!

They aren't the only ones we love and miss either! If ANYONE wants to sign up for the caretaker roll, feel free to call us or e-mail us. But don't feel bad if we don't get back to you right away because the list of interested parties will probably be really long :=)

I'll let you know how things are progressing.

Love to all,

Lee, Wendy and Missy