Week 2 of Rehab

As I was typing the title of this blog it came to me that our life is no longer measured in simple days or weeks..everything seems to revolve around my breathing - or lack thereof. I'm not sure that is a psychologically healthy way to look at things. I wonder - haven't yet asked - if Lee wouldn't prefer some non-problematic measurement. How about week 2 of our adventure? We'll probably try that one for a while.

Rehab started an hour earlier today - don't know why but I do know that we got out early and that was nice. I wasn't any less tired though :-) Worked out more on leg strengthening. Duke is obsessed with leg strength and I'm glad they are because I wasn't. The staff is incredible. They know every one's name that walks through that gym and why they are there and how they are doing. It's almost like watching a politician running for office when they walk through the place and say "hi there Ken. how is Sally (wife) and your kids? are both the boys still in soccer" It's not quite that bad but I'm really impressed because I haven't learned half of their names yet - thank heaven for name badges! Did I tell you that I have my own Duke Health badge for the gym? Everyone has one and the bar code on the back says what they are here for. We all have to "scan in" when we arrive...no "scan out" so I guess they don't care how long we are there.

I learned a valuable lesson today. When they suggest you bring snacks for your afternoon, they weren't kidding. I didn't bring anything except water today and I could sure tell by the time I headed to the bikes. I've been bringing 1/2 peanut butter sandwich, apple slices and low fat cheddar cheese. I missed the protein today. But I survived and they didn't half to drag me off the floor and take me to the ER!

When I left it was raining and for the first time since we arrived in NC I really thought it was cool outside...of course who would have brought an umbrella (it was sunny when I left the house) and who would have brought a jacket because it was sunny when I left the house :-) Needless to say I was real wet and real cold by the time I had trudged to the car...not sure how someone lugging oxygen can exactly trudge but it seems like that what I did.

I got home early today so Lee suggested we go to Sam's Club. I was all for it because we found that owning only one GPS is not a good thing when neither driver has a clue where they are going and both are driving separate places at the same time. As you've guessed we bought a second Garmin (yea!). Now I can venture out and know that eventually I'll get home!

Speaking of rain, Missy is definitely not into it. She sort of skulks down the sidewalk and tiptoes onto the grass to go potty. It's like she doesn't want to get any wetter than she has to. I don't think she has any concern at all for the poor dumb fool who's hold the other end of her leash and getting soaked! Tonight Lee tried the "I can't take her out because it's raining". Why? Will he melt? I don't think so. I took her out but he gets the next one and if she wakes us up in the night to go out I'm going to wake Lee up. Missy is just like any little kid...go wake up Mom and don't bother Dad. Why???? Lee is her best buddy all during the day but when the sun goes down it becomes me. I thought I'd gotten past that but I guess some things just go on and on!

Tomorrow morning we have Lee's doctor appointment (I wanted to share the wealth!). Actually he is meeting this doctor so he has one for medicine refills and so he get get a Doctor's clearance to join the gym. They have a long questionnaire and if you answer two of them with a "yes" then you need a clearance...I'd like to meet the one person who managed to answer that questionnaire with only one "yes"!!!

Tomorrow afternoon I meet a cardiologist who's going to do my Heart Catherization on Thursday. I hope he looks older than 12 and he has steady hands - my two criteria for success!

Because I have a Dr appt I get an excused absence from rehab. I'm surprised they didn't ask me to come in before and after the appt! I shouldn't make fun because I know when they are done with me I will be in really good shape for surgery and when I finish the program post-transplant I'll be in great shape and that's something I've never been!

Well I'm signing off because I have a lot of stockings to finish tonight and then it's off to bed.

Love,
Lee, Wendy and Missy

End of the first week!

Wow, this week didn't come to a close any time too soon! I am absolutely exhausted. Even though I'm so tired, it is a good kind of exhaustion. I wasn't sure I'd be able to finish everything every day but somehow I did it.

I really like all the staff. There must be at least 15 respiratory therapists plus some other people that I'm not sure what their title is. We don't all get one-on-one treatment (no personal trainers!) but someone seems to always be there if you need anything at all. Everyone is very encouraging even when you feel like you're ready to fall down.

I better understand why the program doesn't let the spouse or caregiver attend rehab. They explained that their experience has shown that caregivers have a tendency to "hover" or worry too much and it can interfere with the patient's progress. I can think of a couple of times this week that I would have loved to have had Lee there so he could step up and say I looked just to weak to continue!! Just kidding because I know I have to give it everything I have because I owe it to my future donor to make my body as healthy as it can be prior to transplant. When I think about getting a transplant someday it really motivates me to work even harder than I have been. This may seem to morbid for some of you - and if it is I apologise -but I know that the only way I'm going to be given a new life is for someone else to die. I owe it to that person's family to give it everything I have and more.

Now on to other topics...Lee got new tires on his truck today. His still had plenty of tread but there has to be a max number of years they are good for. The truck is a 1998 and had original tires! The man needs to drive his truck more!!!! ;=)

We haven't finished unpacking my craft/embroidery room but last night we put a little dent in it. We don't want to hammer nails in apartment walls so I bought shelving units to put in the closet to store my extra stuff that was in all of my cupboards in CA. We'll keep unpacking and setting up tomorrow and Amy is coming out on Sunday so we can sew. We are putting together an order for a woman that Amy met. That will be nice.

Then after Sunday it all starts again. Next week, in addition to rehab, I have my first medical appointment with Dr. Zaas (my pulmonologist). I'm really looking forward to it because we have lots of questions. I also want to know how close I've gotten to losing the 10 pounds I need to shed! I also see the cardiologist on Tuesday and have my second heart cath on Thursday (they will let me take that day off of rehab).

Well I'm ready for bed. We sure miss everyone in CA and we hope everybody is doing great!

Love,
Lee, Wendy and Missy

Thoughts about all this...

Well Lee and I have been in NC almost two weeks and I've been in rehab for three days. We still haven't finished unpacking but with the way they kick our butts in rehab I should be buff enough in another week to unpack everything in an hour or two!!! I'm not serious but I will say that I think I'm going to be a LOT stronger after this program.

Here's what's going through my mind - and it's a bit weird - since we arrived in NC, my breathing has gotten so much better that I'm wondering if the Doc is going to say I'm not sick enough for a transplant. That would just be a mixed bag of tricks...yea that I'm not that sick but boo because some day I will be.

So...it makes me wonder if I am improved - for whatever reason - will they send us back to CA or will they tell us we need to stay in NC a lot longer than we planned. Either way things would be interesting.

I may just be borrowing trouble but I really have been breathing better for over a week. I'll keep everyone posted on this one.

I go see the cardiologist on the 13th because I have to have another Heart Cath on the 15th. I go see my pulmonologist - Dr. Zaas - on the 14th. I am really lucky to have him. He's the head of the program and really nice.

On the 20th I have to go to the GI Lab and have this AWFUL test re-done. You have to swallow a probe (they say it's really small and I say it's really big!) and keep it down for 24 hours while you eat. It tests your acid reflux. It's nasty and it hurts your throat!

Then the last test I know about for the time being is on the 22nd when I have a PET Scan of my chest. The last CT scan showed a tiny little nodule in my upper right lobe of my lungs. They want to make sure it's not cancer. They aren't worried about that so neither am I.

I've met several patients that have had their transplants and they have been both helpful and uplifting. I met another patient this evening while I was waiting at Walgreens for a prescription. He and his wife were waiting for a script too. Small world...especially around Duke. This man recognized me from rehab because I may not have mentioned it but you have to go to 23 days of rehab before AND after transplant. He was real nice and he gave me a lot of comforting info...I'm always grateful for that. His wife told me about a support group for caregivers that Lee can go to. It will be so good for him to meet other people going through what he is. His perspective is definitely different than mine and just as stressful!

Well time for dinner and bed!

Love,

Lee, Wendy and Missy

Pulmonary Rehab at Duke - The First Day

Well, since I've still got the energy to write tonight, I'm thinking rehab will be good.

My program has several parts to it....Every day at 12:30 we check in; do floor exercises; do walking; do weight machines; do bicycling; have lecture. It ends at 4:30. Twice a week Lee comes in with me at 11:30 for the Transplant Lectures.

Today was a transplant lecture and it was about "What to expect". Well I know my eyes, as well as Lee's eyes are a little more open. Cindy, one of the Post Transplant Coordinator taught the class and discussed different considerations after surgery. They include:

• Ventilators and chest tubes -- she said it was really important to realize that you will be on a ventilator up to a few days (depending on a lot of different things). She said one caregiver saw his wife after surgery and while the team thought she looked great he passed out cold from the shock of the ventilator and all the tubes! I'm glad Lee was listening!!!
• Pain -- Said you'll have an epidural from the neck down for a while and then they'll switch you to pain meds. I could deliver a baby at the same time!!! I didn't mention to her that I'm allergic to all the "good" stuff! The docs do know that.
• TCDB (Turn - Cough - Deep - Breathe). Cindy said that this will be REALLY painful but it's really important so you don't get pneumonia.
• Walking -- Cindy said that walking helps you heal faster and -- more importantly -- it really makes your surgeon happy! She suggested asking the nurses for a heads up for when the surgeon is coming and then you can go out into the hallway to make it look like you are doing laps!
• Medications -- There is a whole class dedicated to the post-transplant meds and Lee and I will be taking that the first part of November.

Cindy then explained how there are some things that you should do every day for the rest of your life to make sure you stay well and don't reject your new lungs. She explained that most people don't feel any symptoms of rejection...that's a little scary!

After the class Lee went back to the apartment and I started the rest of Rehab.

Checking in was pretty simple.

Then we all went to the floor exercises. They had me watch today so I'd have a good idea of how it works before I start out. Everyone gets a mat and ankle weights and dumb-bells and finds a spot on the floor. Then one of the Rehab therapists sits on her mat in the middle and gives instructions. There are so many people that she uses a microphone so everyone can hear her. We do stretching and dumb bells and leg lifts and bands. I was using the dumb-bells and bands in my chair today and my upper arms are really sore already! I guess I'll get buff!

Then we went to different "stations". I started with walking. They had me walk around the track for 15 minutes and tracked my oxygen saturation numbers. Because today was a "good breathing day" for me I did fine but I was feeling it in my legs because I think I might walk faster than I should.

Next was weight machines. Today I concentrated on legs and tomorrow will be upper body. It alternates every other day. After using seven different machines my legs were getting a little wimpy.

Next was bicycling. Fortunately for me I got assigned today to the Nustep machine. It lets you use your arms to help move your legs (at least that's what I've always thought). I HATE bicycling...my legs start to burn after a couple of minutes! I did the Nustep for 15 minutes at level 3. It was good but this was the third station so my legs were really getting tired.

Last, we went to a lecture. This one was given by the head of Nutrition and it was about eating well with breathing problems. It was really interesting. While a lot of us knew a lot of info, he shared new stuff about studies they have done pertaining to diets and Breathing ability.

Apparently they have actually linked better breathing with higher servings of Fruits and Veggies! That's good for me because I like those. Also learned that Fat requires less oxygen to burn energy than other foods. Because of that they are now recommending a change to the old food pyramid to have pulmonary patients eat more Fats and less Starch. We then talked about the good and the bad fats. We still can't eat all the fatty meats (you know...the ones that taste really good!)

All in all it was really interesting. Did you know that walnuts are high in Omega 3? I didn't! Did you know that consuming dairy products (milk and yogurt) will actually lower blood pressure?

OK, my last Trivial Pursuit tidbit...You should space out your calcium tablets (if you are taking them) because if you take them all at once they will actually reduce the amount of calcium you get...pretty weird. He also said that you shouldn't take your first supplement right after you have your milk and cereal or your yogurt (that's calcium too!)

My work day completed and Lee came back to get me. We didn't go on errands and we didn't pass Go...we came straight home. It's now 8:40 here and I'm going to bed so that I'm rested enough for tomorrow!

Take care everyone!

Love,

Lee, Wendy and Missy

Finishing the Apt and Getting Ready For Rehab

Well, we've finished - for the most part - setting up the apartment. It will take the whole time we are in the apt to really complete things but except for the craft room we are 95 percent done.

Here are some pics of our new home (apt):

This is the living room as you walk in from the front door.

You can see we haven't hung the pictures!

This is the living room as you are standing in the dining room. Emily and Brandon...do you see Shooter Bunny? We couldn't leave Sacramento without him!!!

Missy likes to hang out wherever we are.

This is supposed to be the dining room. It's such a good thing that we didn't bring our dining room table because it would be sitting in a different room!

We have all the boxes stacked because we are still waiting for the garage to open up so that we can store all these boxes and other things. They told us that our garage will become available some time in October - none too soon!!!!

While we didn't buy a dining room set, we do have a gorgeous solid wood dining table for our kitchen area...isn't it great?

Don't mind how we look because we had been unpacking for about three hours before we stopped for breakfast.

This is the kitchen eating area and the island. We had to buy the two storage units shown next to the windows. There was definitely not enough storage in this kitchen!

This is some more of the kitchen. Behind me is the stove/oven, fridge and pantry (I use that term loosely!!).

This is our bedroom. Lee's dresser and the closets are behind me.

This is the master bathroom. If you have ever been in our house then you know that this bathroom is gigantic compared to our bathroom in CA! Lee and I aren't used to the fact that we can both get ready in the room without tripping over each other.

This is the 2nd bathroom. It is really nice sized also but it only has two plugs! Oh well, we can't complain because we mainly use the room to keep my oxygen concentrator in.

And then there's my craft room! I haven't started organizing it yet. The closet is full of boxes and totes! Hopefully it will be done in time for Christmas gift making!!!

So, that's our new home. We like it. It will be just right while we are working with Duke. Speaking of Duke, I start my rehab tomorrow. Lee asked me yesterday if I was getting nervous and I said "no, of course not". Well I need to retract that statement because I really have the jitters.

This is it. This is why we came out here. There's no more pretending or saying "someday"...we are in the here and now. It is a little overwhelming for both of us. I have confidence that once I get started it will be fine but I know the program is VERY demanding.

I'll blog tomorrow night about what the first day was like.

I hope everyone is well and we send you our love,

Lee, Wendy and Missy

We've Arrived in North Carolina

Hi.

I'm sorry we haven't written in a long time. We didn't have Internet until yesterday and we were both so tired last night that we went to bed around 8:30!

We arrived in Durham on Saturday afternoon and signed our lease and moved into our apartment. Lee, Missy and I slept on one queen sized air mattress on Saturday night because the movers were arriving Sunday morning with our stuff.

Sure enough, Bekins showed up at 8:00 a.m. with their very big truck. The guys unloaded everything and I realized that it was well worth labeling each box because they are at least in the correct room!

Lee and I really cut down on the stuff we were bringing to NC...1/2 our kitchen; no guest room furniture; no dining room furniture; only part of the living room; and not all of our clothes. Having done that I was totally confident that we would be overflowing with space in our new digs...WRONG!

The apartment is really very nice with good sized rooms but the kitchen space and the closet space is not what I was remembering! We went on a mad search for some kind of cabinet/pantry to hold the other half of the food we brought. I was beginning to think the canned goods were just going to stay in packing boxes :(

Today we prevailed...we went to JC Pennys to purchase a small microwave and then to the Target next to this Pennys store (not "our" Target but 20 miles away). The Target store had just what we were looking for -- white, storage and cheap!!! Yea! We will have a cleaned up house some day soon.

We also had to buy a LOT of clothes hangers because we packed one big box and then decided they were cheap and we'd get more when we arrived in NC. Now we'll have a clean kitchen and our clothes will be hung up. I'm not sure it gets much better than that.

Lee is a happy camper now that we have digital cable for the Internet and TV. He went three days with no TV and I'm impressed he didn't start shaking or something ;-). Missy is starting to acclimate to the apartment. For the first couple of days we were worried that we'd get kicked out of the apt complex because she started barking really loud if we went out the door without her. I think she finally realizes that this is her new home and even though "mom and dad" leave her, we will come back. Thank heavens for less barking!

I go in tomorrow morning to Duke Medical for my pulmonary rehab orientation and start the program on Monday. I'm really looking forward to it because I haven't exercised for almost a month and I can really feel the weakness. I need to buff up!!! ;-)

As soon as the apartment is sort of organized I will post some pictures.

Love to everyone,

Lee, Wendy and Missy

On the road to Duke - day 6

Here we are again...another day of driving and we've reached Dandridge, TN. Lee and I really think Tennessee is a really pretty state. It's so green and lush and makes a beautiful change from Oklahoma and the desert.

We left Memphis this morning without ever seeing Elvis. We were crushed! We'll just have to come back when we have more time so we can hunt him down....he is still alive right? :-)

Tennessee is one wide state - we drove all day and are still in the state. We went from the western edge of the state to the eastern edge and the roads were great again. Poor Oklahoma - they must be ashamed of their roads (at least they should be!).

We drove about 425 miles today and had to stop in Nashville to pick up more oxygen again. It's a really nice looking town and I can't wait to come back as a tourist. It will be fun to live so close to all the stuff that I've always wanted to see but it was too far away. Anyone who wants to be a tourist can come out to NC and you could stay with us in our two bedroom apartment. We brought our air mattress with us...

Lee was really distressed today because he had to pay $2.48 for a gallon of gas today. He's been really spoiled by the great prices. How quickly he's forgotten the CA prices.

We take off in the morning to arrive at our new home tomorrow afternoon. We a little nervous and excited at the same time. I don't know how long it will take to get Internet so it may be a few days before I post again. The movers arrive Sunday and Lee, Missy and I are going to spend several days unpacking and getting used to our new surroundings.

We'll write soon.

Love to all,
Lee, Wendy and Missy