I went to Weight Watchers this morning.  They have re-vamped the entire program, changing everything.  It sounds like (with the exception of fruit) that they are doing the high protein and fiber, low fat and carbs... whole grains and fresh produce. 

I lost 2.8 pounds.  I feel like it was more, but I think that is because I am actually moving now.  I went back to the bike tonight.  It wasn't as easy tonight as it has been.  Usually the first 5 minutes are the hardest then I get into a groove and time flys.  Tonight I trudged through my hour and only made it to 8.4 miles.  I should have pushed to 9 miles, but honestly I was spent.  I gave kisses and hugs to Britt and Layla and drove home, hooked up to oxygen and laid on the couch for a half hour.  Usually after I ride I have this energy... not tonight.

I had a coaching session with a girl from BodyBugg today as part of the program Britt paid for.  She went over adding my calories and to be careful to get the correct values in.  You add food for instance...  Campbell's Tomato Soup, condensed.... then it gives the calories, carbs, fats and fiber.  But there are a gazillion different Tomato soups and they all have different values.

She also told me that while riding the bike is wonderful and it will help build muscle... it is not a cardio work out.  For me to have a cardio work out with my heart issues has to be done slowly but intensely and for short periods of time.  She said this will burn more calories than riding the bike (which I intend to keep up).  So, in the evenings after my ride at Britt's I will come home and throw the ball around, do "old lady" crunches, and walk rapidly in place. 
As a matter of fact, she suggests it just while I am watching T.V. instead of sitting, stand up and move.

Sounds good to me.  It was nice today at Weight Watchers there was a friend I hadn't seen in a few months.  She told me I looked wonderful.  Britt said she had a awesome compliment the other day too.... so we are doing the right thing. 

Tomorrow starts the holiday madness.  Yes, I have had our tree up for a couple weeks, and yes we have our outside lights up ... but tomorrow starts the finishing up shopping, wrapping gifts. Baking and mailing cookies and candy to my brothers, and making big plates for our friends and neighbors.  Britt said she would help me.  Baking cookies and making fudge and candy will be difficult not to eat it all.  So, we have made a pact.  We can eat ONE of each and then quickly package the rest.  I make gingersnaps every year that Bill LOVES and I told him he will have to hide them somewhere I can't get to them.  The same for all the chocolate and goodies that will be around here. 

I am not a drinker, never really liked it.  But at Christmas and during the holidays I make a Champagne Cocktail that is so good.  It is good champagne and pomegranate juice with a splash of orange juice.  Then sugar the glass rim and float pomegranate's in the bottom of the glasses.  It is so good!

I am thinking to try it this year with cranberry juice and float some cranberries in the glasses and leave off the sugar.  Diet drinks???  LoL

I have gotten about 2/3rds of the way done with my Christmas cards.  I need to run to the store and get more then get them in the mail.  I still have a few online orders to get done for Bill.  I love shopping online, but I get nervous during the holidays about shipping getting lost, or being late.  So, I had better just get it done.

I have a feeling this year I am going to be taking a few naps in between.  i am already tired just typing it.  LOL

Let's change the subject... sorry

I wanted to post my biking progress before I forget.

Sunday (yesterday) I went to Britt's and rode for an hour and did my 9 miles.  I had to push it the last 10 minutes to get 9 miles in but I did it.  :) 

Britt is at the Gym right now, but as soon as she gets home I am going back over.  I'll get on here tonight and post.

~~~~~~~~~~~~~
It's tonight.  LoL  I went to Britt's this afternoon and rode for an hour and 2 minutes to reach 9 miles today.  I must have slowed down at some point.  I was much more winded and felt the effects on my lungs today after riding.  We have an inversion layer today and I am wondering if the stagnate air and the smoke from fireplaces is making breathing more difficult.  I forget about these days.
I have weight in tomorrow, I'll post the results.  I think I have done well.  Actually, I know I have done well ... I just hope the scales shows it.  I have had a problem with constipation for the last couple months.  I have been taking laxative 2 or 3 times a week.  I forgot this week and just took them today.  I don't think they work quick enough for me to rid myself of excess weight before tomorrow's weigh in. 
I have a doctor's appointment on the 9th with my general practitioner and I will talk to her about this.  It's really odd.  I have been eating tons of fresh veggies both steamed and raw, I eat a high fiber diet and high protein.  I can't imagine why suddenly I have this issue?

I have been having nose bleeds.  I am going to buy a humidifier and keep it going this winter and see if that helps.  I have a saline solution (mist) that I can use, but I really hate that stuff.  If the humidifier doesn't work then I'll try the saline.  This morning it was bad, I rolled over and felt a rush of something out of my nose.  Before I could get out of bed and to the bathroom I had a handful of blood.

Boy... What a blog tonight, constipation and bloody noses.  Sorry.

Bikes and Breathing

I was back on the bike again today.  Britt called and offered to come get me and bring me back home so I could ride for an hour.  How could I resist?  I love her for keeping me going.  I rode an hour and did 8.5 miles at a higher speed.  I was trying for over 9 miles but Layla and I were chatting and I would get side tracked and slow down.  LoL  I find myself at night now using my 5 pound exercise ball while I am watching T.V..  A month ago I would just sit and look at it and think to myself I should be using it.  I can feel a difference now in how my clothes are fitting.

Tuesday after Weight Watchers will be my 2nd measurement.  I'll let you know how the weight goes and how the inches go.  I really love this program.  I think the reason why I am doing so well is because I can at any moment get online and look at how may calories I have used and how many I have burned.  I think (if I remember correctly) that it takes burning an extra 1300 calories above what you have consumed to lose a pound.  It's nice watching and having power over what that # is per day.  I am trying to keep my calories burned at least 1000 calories per day higher than what I am consuming.  Some days it's a little more, other days a little less.  We'll see Tuesday at weigh in if the 4 pounds will be an average loss.

Did I tell you about talking with my pulmonologist's nurse about BMI?  She calculated mine for me and I am at 36% BMI.  I need to be @ 32% for the LVRS.  She said that would be approximately 185 pounds.  Weighing 207 pounds now (that's a 16 pound loss by the way, lol) that leaves about 22 pounds.  Now, add in some actual muscle mass and that number will be less.  I am planning on continuing past that weight.  My Weight Watchers goal weight is 150, and I would personally like to get to about 140.  I plan on continuing with Weight Watchers only because I like the group setting and the weekly weigh ins. 

Thanksgiving and the turkey and dressing and bread was difficult.  But, I was proud of myself.  I had no dressing and 1 roll and about 4 ounces of turkey breast.  Not so bad.  I did eat 1 very skinny slice of pumpkin pie, but only at the filling and not the crust.  I think that saved me some fat and calories.
I need to start drinking more water.  That's hard for me to do for some reason.

I have noticed that my breathing is better, but my lungs are burning more.  I am not sure why that is.  I should say ... my breathing is better until I go out in the cold.  That is extreme for me.  It actually steals the breath right out of my throat.  Bill had been a doll and makes sure if I have to go somewhere he will go start the car for me and let it get warmed up.  I had to one day shovel to the car and scrape the windows and broom off the snow.  I had visions of being found passed out in the middle of the street.  Terrible! 

Testing is done & a weight is lifted :)

Lot's to update you on.

I now have had all the tests that Seattle University of Washington wanted me to have.  The last appointment that I had was with my Pulmonologist's nurse and she is a doll.  I had a full Pulmonary Function Test and then she tested my blood gases.  She asked me if the Dr. had gone over Nancy's (from Seattle) information with me.  I said no.  She asked me if he talked at all with me about Seattle.  I said the only thing he had told me was at the last meeting with him that he wanted me in Seattle by winter and I needed to pick a transplant hospital.  She sighed, then went on................................

First of all, the reason he wanted me to pick a transplant hospital and have them familiar with me was because at this stage of emphysema/copd if I were to have a lung collapse or in case of emergency they would need to know where to send me.  Oregon does not have a specialized lung hospital that can do transplants or Lung Volume Reduction surgeries.  She told me that my Pulmonary function (FEV1) level is high 30's 37/38.  And, in order to be put on the transplant list levels need to be nearing 20.  She said it is shameful that the criteria is so low for transplant, that is a lot of suffering, but that is the standard.  So..... I have time.  She couldn't tell me how much time, only that how many exacerbation's I have and my over-all health will have an effect on my time.

I asked her about the BMI, and she said she didn't recall Nancy mentioning that, however she would measure for me.  She did, and I am @ 36% BMI... I need to be @ 32% for LVRS and 30% for transplant.  That made me feel so much better.  That is within my reach.  She figured that for me to be @ 32 BMI that would be around 186 pounds.  I can do that standing on my head.  My goal was far beyond that anyway.

She said once all my test results were sent and received and looked over I would be getting a call from Seattle for an appointment.  She said most likely February. 

All in All I came home elated.  This was good news for me.  Also, my blood gas tests showed that I can be without oxygen on room air for about an hour at a time if I am not moving around.  :) :) :)  This pleases me very much. 

We went to Britt's boyfriends mom's house for an early Thanksgiving.  It was a lovely evening.  Lot's of good food and great company.  I was feeling big for my britches and left my O2 off for almost 4 hours.  I could tell.  My lungs began to burn and it was more difficult to get a good breath of air.  So, I showed myself didn't I?  LoL 

I have continued to watch what I eat and exercise.  I have only been to Britt's twice this week, on Monday and Tuesday, but I have been working out at night with my 5 pound ball working on upper body muscles. 
This afternoon I paid Bill's for December and have them ready to mail out, and have almost gotten my Christmas cards done.  That is a relief to me.  It is the one time every year when I actually sit down and write.  Everything these days is done on the computer and it is so impersonal.  I try and be good at Birthday cards, hoping to be better each year... But Christmas is a never fail.

I feel hopeful now.  Like even with LVRS ahead of me, it's not a transplant.  It may be a long surgery to recover from and a longer stay in the hospital... but there are no immunosuppresant and anti-rejection drugs that will need to be taken every day forever.  It will buy me 5-10 years before I have the worry of transplant.  That is a wonderful thing.  I can use this time to live, and enjoy every moment I can. 

I am learning to be positive.  I tell Bill and Britt all the time now, that mine will be a happy house.  Yes, we will have sadness once in a while... but I want this to be the place people can come and relax.  No worries, no judgements... just a happy home.  I watch very little news anymore.  I am just so tired of political bickering, harsh and hateful actions taken by those who are supposed to be working for us.  And, all the crime shows on T.V. ... Bill watches them, now he watches them in the bedroom and not in the living room.  I don't want to watch death and depression on T.V..  This doesn't mean I am burying my head in the sand.  I still read the headlines online, and I still watch T.V., it's just that I try and lighten the mood every chance I get.  I have learned first hand that life is precious and it goes by us quicker than we think.  So, I don't intend on missing out on any part of it, and I am not waisting it worrying who is getting patted down or put through an x-ray. 

Snow and Weight Loss

Today has been an eventful day.  I woke up this morning to find a foot of new snow and temps around 20 degrees.  I got started getting ready to go weigh in at Weight Watchers and realized since Bill was still sleeping I would need to shovel the walk to my car and then sweep it off and defrost the windows before I left.  After shoveling my way to the car I was so out of breath I wasn't sure I could continue.  The combination of cold air and exertion wasn't a good combination.  So, I struggled to open the door and turned on the defrost, swept it off and came back in the house. 

That was my first work out of the day.  I met up with Brittney at Weight Watchers and she weighed in first.  She has made it past her 10% goal and is only 5 pounds or so away from her total goal!  So proud of her!!!  My turn came and I was so excited/nervous.  I lost a total of 4.4 pounds this week!  YIPPEE  That is 8.4 pounds in just 2 weeks on this body bugg program.  I do believe that this is one program that I can be successful at and in combination with Weight Watchers weigh ins and meetings to re-enforce the goal I am thinking I can meet my June deadline I set for myself to get to my goal weight.

I came home and soon after I got home I got a call from my pulmonologist's nurse.  She asked me if I wanted to re-schedule my appointment I missed.  What???  OMG, I was supposed to be at the hospital @ 10:00 this morning for tests then at 11:00 at my Pulm. for more testing.  Crap!  I never miss tests.  So, I called the hospital and got a hold of a friend of ours who works there, she pulled some strings in 2 different departments and I had my tests done this afternoon from 2-3.  Now I go in tomorrow and have another full Pulmonary function test and blood gas tests.  These are the tests the University of Washington wanted.

I came home and went shopping with Britt to find a dress for Layla to wear tomorrow for our early Thanksgiving dinner and Britt picked up a few sweaters.
We came home and I changed clothes and went to Britt's and rode my hour on the bike.  Tonight I rode 9 miles in an hour with an increased tension.  Came home and had a salad and 2 rice cakes and now I am ready for bed.

I am hoping to get over to Britt's before dinner tomorrow and get another hour in on the bike.  It helps burning calories.

One of these blogs I will post the results of one day to show you what calories burned verses calories consumed.  I think it's interesting that a little computerized band around my arm can keep track of so much.

I am just about ready to call it a night, but wanted to post my biking progress.

I went over to Britt's this afternoon and rode for an hour.  I increased the distance to 7.5 miles, up from 6. 

It is snowing heavy tonight.  I think during the night it may stop because it's supposed to get down into the single digits by morning.  I am hoping they won't cancel the Weight Watchers meeting tomorrow.  They said that if the City schools are closed then the meetings will be cancelled.  I can feel my weight loss now.  My clothes aren't fitting the way the did a month ago.  My face is slimming down. 

I'll post tomorrow to let you know if WW had their meeting and how my ride goes tomorrow. 
Night

Not much is going on.  My energy levels have really dropped the last couple days.  I haven't slept well, so I am going to give it a really good shot tonight.

Sometime last week I realized the anniversary of mom's death was coming up.  I did my best to forget it.  I don't need to remember this day.  It's 2 years today.
I think of her almost everyday.  There is so much I want to tell her.  There are so many days I just want her to comfort me.  I was the baby of the family and till the day she died I was her baby.  Crap... I just miss her so much.
I didn't get to say goodbye to her.  She was scheduled for heart surgery to repair a leaky valve.  We (Brittney, Layla and I) had planned a trip down to see her in October and we were all going to do a little early Christmas shopping.  So, when her heart surgery was scheduled for the middle of November I asked her if we should cancel and I would just come down for her surgery?  She said no, that my brothers would be there and she wanted a nice visit with her girls.  So we spent a week there in October.  2 days before her heart surgery was scheduled my oldest brother called me and told me that during the night she got up to do something and fell and broke her hip.  The next 3 days he would call and give me updates.  I spoke with her on the phone the first day she was in the hospital.  Finally the 20th Greg told me I may want to get there ASAP ... this was Thanksgiving week traveling and the only flight I could get was the next day getting into Phoenix by 4:00.  I was met at the airport and taken to the hospital by my step brother and step cousin.  As we got to moms room I saw my big brother and step father and they told me the doctor had just went in and I could  see her shortly.  She passed away while I was outside her room.  I didn't get to let her know I was there or to tell her I loved her. 
I won't ever forget how painful and heartbreaking that was.  I was 15 feet from her bed and never got to say goodbye.
Anyway....................
That was 2 years ago and so much has happened since then.  I know she has been with me a few times.  I have such lovely vivid dreams of her. 

This isn't the day I want to remember.  I would much rather spend the time and emotions thinking of her birthdays, or our trips we would take together. 

I already took my nights meds, the earlier I can get to sleep tonight the better I will be. 
Before I go I wanted to fill you in on the "body bugg" diet plan.  I think it will work wonders for me.  It's difficult not to eat carbs, white flour or white sugar.  That doesn't leave much. 

Thanksgiving is coming and we will celebrate the day before with Brittney's boyfriends family at his mothers house.  Then Thanksgiving Bill and I will just hang out ourselves.  Britt has plans and we have most of the time had it be just the two of us. 

I have a Weight Watchers weigh in on Tuesday.  I'll let you know how things go.

Miss you mom! <3

Pushing Forward

I was back on the bike last night at Britt's house.  I did 50 minutes, I figure today I'll shoot for 55 minutes and next week work to 1 hour.  Let me be very clear ... I am peddling consistently, but I am only averaging 6 miles in almost an hour.  So, like the doctor said I am trudging along being careful not to put too much pressure on my heart. 
Sad... I am not even 50 and have let myself get to this point.  Sometimes I have such disdain for myself!

Anyway, this is all a step in the right direction.  Britt is very helpful when it comes to motivating me.  She, being a single mom is up @ 5:00 going to the gym, home to shower and get Layla up for school, then to school herself all by 9:00. 

She has worked with a personal trainer long enough to be helpful to me with a low impact exercise plan.  She was over the night before last trying to load the "body bugg" program onto my computer.  For some reason she couldn't get it installed.  So, I gave hers back to her and she said when mine is delivered today she will come over and get it installed, even if she has to get on the phone with our friendly computer fixer guy.  LoL

I am curious to get this system started and to see how it works.  I know right away dieting watching carbs is a challenge.  I never paid attention before.  And, no white flour or white sugar.  I have never in my life eaten so many veggies, which I am fine with.  I have always gnawed on them anyway, diet or not.

Every year for as long as I can remember I have baked candy, fudge and cookies at Christmas for us and for gifts for our friends and family.  I told Bill I am not baking this year.  It will be almost impossible for me to bake and not taste.  Well it would be possible, but torture.  I am sure everyone will understand.  I did some canning earlier this fall and have some of that ready for gifts.  I will come up with something else. 

I am feeling (looking for the right word) naive regarding transplant, lvrs and treatment in general.  My entire life I take things literally.  If someone tells me blank... I expect blank to happen and in a timely manner.  LoL  Why is it that it never does?  And, why is it I haven't learned my lesson with this years and years ago?  Could it be.... life doesn't really revolve around me???  LoL  Honestly I am just kidding!

When I first was told in August about the need for transplant and my doctor told me he wanted me in Seattle by winter.  I believed him and took it to heart.  Then I found out that the wheels moved slower than I expected and that too was fine as long as they turned.  Then I find out that transplant now will be placed secondly as a treatment and that lung volume reduction surgery will be #1.  (And, I was relieved about this, and happy that my fears about lung transplant could wait a while)  However, now I am reminded that my weight will be an issue.  Why hadn't that stuck with me before?  I was aware of the BMI in August. 

So, now my Pulmonologist tells me that tests will begin next week and the results will be sent to Seattle and they will notify me of an appointment.  This appointment will not be for the lvrs, but will be a meeting to go over several things .... Insurance coverage, results of testing, I will have a psychiatric review, I will speak to a counselor and then they will tell me I have to wait for surgery until my weight loss is further along.  LoL

I know my disease is not at it's worse.  I know things can get much, much worse.  And, because of that it buys me time to wait for surgical procedures.  I know how I am feeling now.  I have heard others describe symptoms I hoped never to have.  People without this disease can't imagine living with it.  My fear is that stage of suffocation.  Of not being able to get a breath in AT ALL or breath out for that matter.  Of not being able to move about by themselves.  Of needing that damn cart at the grocery stores.  Of lugging around a push cart with a large O2 tank in it.  Of sleeping elevated because you can no longer lay flat and breath at the same time.  Of not being able to go outside AT ALL during frigid weather or extremely hot days, or days when the air quality is bad.

I can now squeak by all of that.  Yes, I am having breathing issues, and yes at times they are so bad they bring on anxiety attacks ... but nothing like I have heard described.  Yes, I carry an oxygen canister everywhere I go, but for now I can disguise them in a hand bag.  I keep eyeing those carts at the store and swear to myself I will walk if it takes me hours!  I will not give in to those carts.  Yes, the extremes in weather, hot or cold bothers me but I can still get around it either with scarves in the winter, or air conditioning in the summer.  Bad air quality days still keeps me inside.

What I am getting at is ... As bad as I think I have it, things will get worse.  There are many people living bravely with much worse symptoms as I have.  So, I have time for surgeries.  I have time to live as well as I can until those days get here for me too.

I have to keep reminding myself of that.  To LIVE.  Us Copd-ers are a tough bunch and the best thing we can do for ourselves is to not give up, to push through and do as much as possible even when we don't feel like it. 

Normally at 3:30 in the afternoon I am ready for a nap.  Now, I sit on a bike and ride.  It's a necessity for me to advance my chances for a better life.
S0 when you're feeling like you just can't take one more thing ... accept the frustration and push yourself.  You'll feel better about yourself if you go down trying rather than giving in and giving up.

***
Britt came over after she picked up Layla from school and programed my "bodybugg" that came today.  We added my weight and measurements and I set a goal to lose 62 pounds by June.  I would love to get there sooner, but this weight did not get on me overnight, and I have carried it around long enough to know it doesn't want to let go very easily.
I then went to her house and got on the bike.  I rode today with a increase in intensity and for 60 minutes.  My heart rate stayed around 130-140. 
I will stay at an hour and week by week slowly increase speed and intensity. 
I am not sure if I mentioned but I am going to ride Monday-Thursday, which also over time may increase.  We'll have to see.

Christmas Decorating and Weight Loss

Let's get the weight issue out of the way first.  I went to Weight Watchers this morning and lost 4 pounds.  Keep in mind that I did not weigh in the week before, I played hooky.  That brings my total weight loss for 12 weeks to 12 pounds.  1 pound a week is great... but I need to do it faster, and without this up and down.  I am now at 212.2 pounds.  (I hate admitting that)  I am not sure what my BMI is at this moment, but my first goal to reach is break the 200 mark.  It will be interesting to see how this new "calorie" diet works compared to WW. 

Bill and I went grocery shopping after I got home and I stocked up on veggies and lean ground turkey and chicken breasts and fish. 
I came home and cut up all the veggies and put some in storage containers for snacks and Cauliflower, Broccoli, Brussel Sprouts and Cranberry's in baggies to cook with.

I also bought myself some good decaf coffee beans and some fat free Cafe Vienna international coffee to add to it for something special and comforting in the evenings.  Plus, Weight Watchers Fudge Bars for zero fat and 60  calories.  I am hitting this weight issue with a new dedication.  This is not a diet like other people go on.  It's a life saving measure.  I know without surgery or transplant I wouldn't have much of a life.  I would be home bound eventually and my heart would continue to get worse.

I NEED this weight loss.  It is not for vanity it's for life.  However, my memory can't even place when I had 30 BMI.  LOL  So, it should be fun to see.

I am going to start going to Britt's house 3 or 4 times a week to ride her stationary bike while she works out.  She said it will help her too to keep a scheduled exercise program as well.  She is doing some program on DVDs that would kill me. 

I mentioned last night that I had decorated our tree and house for Christmas.  I love Christmas and if it was left up to me I would leave them up all year.  Bill jokingly says that any month ending in "ber" is fair game for Christmas to begin around our house.  LoL

Living Room

Living Room

Even Christmas in the Kitchen :)

Dining Room

To me there is nothing better than to sit surrounded by Christmas.  I come by this honestly... Mom would decorate so beautifully every year for the holidays.  She used to make fun of me for putting my stuff up so early.  I have passed this onto Brittney as well.  She actually had her tree up before me this year. 

It's time to get to Britt's now.  I just wanted to share my weight loss with you.  Yippee!  And, post the pics of Christmas.

**Just a ending note.  We are back from Britt's.  I rode the bike for 46 1/2 minutes.  My highest pulse rate was 156, but after resting and slowing things down it stayed about 130.  I can already feel it.  When I stood up from the bike my legs were like standing on spaghetti noodles.  LoL  Back again tomorrow and Thursday.  I will do it Mon, Tue, Wed and Thurs.  I'll keep track of my progress here. 

My Pulmonologists appointment and some news

There have been a few times that being so "forth coming" about this process has been embarrassing, or shameful or uncomfortable for me to write. 

I went to my pulmonologist's appointment today.  He had heard from Seattle and they sent a list of requirements and tests they wanted me to have prior to visiting them.

The tests included but not limited to ...

An Echocardiogram
A High Resolution Ct Scan of my chest
A complete Pulmonary Function Test
A Blood Gas test without O2

He said there would probably be more blood work, but those tests are easily scheduled.
So, on the 23rd (in 8 days) I am scheduled to go @ 10 for the echo cardiogram and ct scan, then once I am finished there remove oxygen and wait 30 minutes then go to his office for the Pulmonary function test and the blood gas test.

He said I meet all requirements for LVRS and Transplant EXCEPT FOR ONE AREA ... MY WEIGHT!!! 
He as politely as he could said he will take it upon himself to be "that" doctor that I will hate, and just tell me.... I am overweight.  I need to lose weight in order to save myself.  I sat there shaking my head agreeing with everything he said.

I have been going to Weight Watchers and losing slowly.  Sometimes losing, sometimes gaining, always wanting to have big losses but going up and down.  I have not eaten fast food, I have watched my fat intake and low calories.  But what I hadn't done is exercise. 

He told me today that even with my heart condition (which he will forward concerns about to my primary care doctor) I need to get up and move.  He said even if I can only walk 15 minutes, then rest in between and walk 4 times a day for 15 minutes.  I get it, I understand. 
For people without this disease it would appear ridiculous that I cannot walk for periods of time.  It seems ridiculous to me. 

He said that in order to have the LVRS they would like me at a BMI of 32% and for Transplant at 32-30%. 

So, he said they will want to see me.  Go over all my tests with me and get familiar with my case as well as letting me get familiar with them and how they do things.  He said he doubts they would do the surgery until I had significant weight loss.

So, I give up and give in.  I will continue to go to Weight Watchers weekly and weigh in.  The support system there is good for me.  But tonight Brittney brought me over this calorie counting and calorie burning system she has been using.  I wanted to get one but they are 200$ and I didn't want to spend the money.
She put it on my arm and told me she ordered me one and paid for 6 months worth of online support to go with it.  When I get mine I will give this one back to her.
They are called the bodybugg (version 3) calorie management system.  It uses body temp to keep track of calories burned.  Then you plug it in to the computer at the end of each day and add what you have eaten and it tells you calories burned verses calories eaten.
You can set your own goals and it will calculate, and give you your daily calorie allowance.

I will keep you posted on how it works. 

Being over weight to me is one thing.  But being SO overweight that I do not qualify for surgery is something shameful. 

I go to Weight Watchers tomorrow and I am hoping to see a loss.  I didn't go last week so this weigh in will be for 2 weeks.

I am so tired tonight, but I will get on tomorrow and post some pictures of Christmas.  I got energetic and put up our tree and decorated the house for Christmas. 

I was thinking today about this time last year.  Bill and Layla and I going to feed our ducks and walking around canister free.  We walked or got outside nearly everyday. 

What a difference a year makes.  I often wonder what would I be like today had I not quit smoking 522 days ago?  I can't imagine putting anything in my lungs, even cold air will make me panic.  I look back at the holidays last year and I want that me back.  Of course then I thought I was damaged beyond repair ... little did I know of the downward slide that would take place.  I can see the evil-ness of this disease.  It slowly almost unknowingly steals your breath, energy and independence. 

I can remember last November being able to take walks, dress without being out of breath, clean house (if I didn't use harsh smelling cleaning products), walking from room to room, taking a shower without the need for oxygen. 

I am not sure when it happened, I didn't notice waking up one day and not being able to do something, but it happened.

Now when I shower I lose my breath, when I get dressed I am breathless and exhausted by the time I'm done.  Cleaning house now takes me all day just to vacuum and dust ... a chore that used to take me an hour.  I can no longer walk for any distance or period of time.  Strangely though I can walk pushing a shopping cart.  I think that is because of my oxygen canister being in my purse and being so heavy to lug around.

I can only imagine what I would be like in another year?  With some luck I will have this lung volume reduction surgery and it will go smoothly and I will be able to see an improvement.  That would be nice. 

Suddenly I am finding it impossible to keep my eyes opened.  I guess it's time to go take meds and go to bed. 
Night.........

I have to add another blog tonight.  Since I started this journey I have met so many warm and giving people.  They are what give me strength and hope when I am afraid and want to quit trying. 

I joined a quit smoking site Become an Ex and met some of the most wonderful people there.  I consider many of them friends even though we have never met in person.  They will never quite know how much their friendship and loyalty have helped me these last 15 months. 

I also joined groups on face book.  Copd sites and Transplant sites.  There I share many things with people who are going through the same things I am.  We understand each other and no one second guess us when we speak of being scared and breathless, or having pains that no one else can see. 

On one of these sites I met a woman who came to me and requested friendship.  She was genuine and gentle and caring.  She had a heart and double lung transplant 15 years ago and would ease my fears with her strength.  She was married and loved her husband.  They had one son who was everything to her. 
She passed away yesterday afternoon from complications due to organ rejection..  Bless her soul. 

It just made me want to come here and let my friends know how much you've meant to me. 

I can not go through this journey alone.  My husband and my daughter are wonderful and give me strength.  But in life for one reason or another I have few good friends who live near us to confide in ... not counting my daughter.

This just caught me off guard and scared me.  I guess it's easy for me to sit at my computer and type blogs and spill my heart onto a computer screen.  But in real life it's not so easy to deal daily with it all. 

Today was a exhausting day and I did nothing.  That to me is frustrating.  I am off to bed, but wanted to give thanks and much love to all of you who have stood beside me and helped me along this last year.  I want you to know I value your friendship and I never take it for granted.

Goodnight

I woke up this morning and got a cup of coffee and sat down in my chair to watch the news, about 3 hours later I woke up and couldn't believe I had fallen back asleep and for so long.  Bill snuck out and while I was sleeping he put up Christmas lights on the house and fence. 
Good timing, it started sprinkling snow this afternoon, not enough to count, just enough to make it blustery cold.

I painted a few little miniature people scene's for Brittney's Christmas village and played on the computer for a while, then went in and laid down and slept another 2 hours.  I am still ready to call it a night and go to bed and it's only 7:30.  Talk about a waisted day!

I went outside a few times this afternoon because Bill wanted my opinion about lights or something and as soon as I hit the cold air... my breath went away.  I had forgotten from last winter about the dry cold air.  This year it's much much worse.  There was nothing there to breath in.
I will definitely have to keep scarves around to wrap around my face while I am out and until I get into a building.  It was scary today how quickly it took my breath away.

I get tired of having special needs.  I get tired of being tired.  I get tired of a lot of things these days.  In the last week I have step on my own cannula ripping it from my face SO many times I can't count them all.  It hurts.  I get so pissed that a few times I have sailed my cannula and tubing across the room.  I feel like a little kid having a tantrum and half expect to hear my mom say "do you feel better now?"  LoL  It just is so annoying dragging this thing around all day.  I feel like a dog tethered to a post.  I have a certain diameter I can go in and then I reach the end of my rope (so to speak). 

I am down on myself because I have blown my diet this week.  I am going to pass on Weight Watchers tomorrow.  I know if I go I will have a gain, and I would rather try and make up for it this week and see what the damage is next week.  I feel like a total loser for this.  How can I take control of anything in my life if I can't even control my food intake? 

It sounds like just a down day today.  Maybe I should just call it a night and see if tomorrow can be better.

By Definition Lung Volume Reduction Surgery

Lung Volume Reduction Surgery



Many people who suffer with emphysema have portions of the lung which are more affected than others. This finding led to the development of a surgical approach to treat emphysema. Lung volume reduction surgery (LVRS) is a procedure which removes approximately 20-35% of the poorly functioning, space occupying lung tissue from each lung. By reducing the lung size, the remaining lung and surrounding muscles (intercostals and diaphragm) are able to work more efficiently. This makes breathing easier and helps patients achieve greater quality of life.


Good Candidates


It is very important that this operation is only offered to people who are likely to benefit from the procedure with the lowest risk of complications. A good candidate for LVRS is someone who has stopped smoking for at least 4 months and has disabling emphysema despite complete compliance with optimum medical therapy. The patient must be able to participate in a pulmonary rehabilitation program prior to and after surgery. Any other medical conditions that the candidate may have must be well controlled and must not present unacceptable risks for complications from the procedure. Most importantly, the patient must have a pattern of emphysema that is amenable to surgical management. This means that there are space occupying, poorly functioning areas of the lung which can be removed to improve lung function. Imaging studies including chest x-ray, CAT scan, and lung perfusion studies are done to determine this.


The National Emphysema Treatment Trial (NETT) was a prospective, randomized, multicenter trial which compared the results of LVRS to medical therapy which showed that there were 3 groups of patients that tend to benefit from LVRS. The following groups of patients are candidates for LVRS:


Group 1: Patients with predominantly upper lobe emphysema and low exercise capacity. These patients have improved survival and functional outcomes after LVRS compared to medical therapy.


Group 2: Patients with predominantly upper lobe emphysema and high exercise capacity. These patients have improved functional outcomes after LVRS but no difference in survival compared to medical therapy.


Group 3: Patients with non-upper lobe emphysema and low exercise capacity. These patients have improved survival after LVRS but no difference in survival compared to medical therapy.


Poor Candidates


The NETT also identified patients who are unlikely to benefit from LVRS and have high risk for death after the procedure. The following groups of patients are not candidates for LVRS:


Patients with non-upper lobe emphysema and high exercise capacity.


Patients with extremely poor pulmonary function (FEV1 20% or less than predicted) and either homogenous distribution of emphysema on CT scan or extremely poor carbon monoxide diffusing capacity (DLCO 20% or less than predicted).


What to Expect
To optimize exercise capacity and improve early postoperative recovery, patients must participate in a 6 to 10 week pulmonary rehabilitation program prior to surgery. The operation requires general anesthesia and can be done through either a breast bone incision or smaller chest incisions using video surgery. A special surgical stapler is used to remove the diseased lung tissue and seal the remaining lung from leaking blood and air. Immediately after the procedure patients are awakened from the general anesthetic and allowed to breath on their own. Pain medicine is given through an epidural catheter to help control postoperative discomfort. Drainage tubes are left in the chest to drain any excess air or fluid from the chest after surgery. These are removed once the air and fluid leakage stops. Physical therapy is reinstituted early during the recovery phase during the hospitalization. Patients are discharged from the hospital once the patient is mobile, tolerating a regular diet and drainage tubes have been removed.




Anticipated Benefits


Relief of shortness of breath


Improved lung function


Increased energy level and physical mobility


Improved ability to function at normal daily activities


May decrease need for supplemental oxygen


Potential Complications


There are significant risks associated with LVRS because of the poor baseline lung function. The major risks associated with this procedure are:


Prolonged air leakage is the most common complication after LVRS. Approximately 40% of patients will have this problem. Some patients will actually go home with a chest drain in place for a few days to help manage this.


Pneumonia (15%) can occur in emphysema patients, especially in patients who have a history of recurrent bouts


Bleeding (2-5%)


Stroke (<1%)


Heart attack (1%)


Death: The chance of dying after LVRS is approximately 3-8%
 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The above is from USC
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The below is from U of W
 
What is the Washington University experience?



Modern lung volume reduction surgery was pioneered by Washington University School of Medicine surgeons, who performed the first procedure at Barnes-Jewish Hospital in 1993. Since that time, the surgeons have completed hundreds of lung reduction surgeries, with outcomes showing marked improvement in patients’ ability to breathe more easily.


The success of the lung volume reduction surgery program is made possible by the skilled surgeons, pulmonologists, radiologists, anesthesiologists, respiratory therapists and nurses who all have extensive experience working with lung and lung transplant patients. This multidisciplinary approach assures the highest standard of care.


What are the benefits of Lung Volume Reduction Surgery?


The following outcomes can be expected as the result of surgery:
•relieves shortness of breath


•increases energy level and physical mobility


•improves ability to function at work, housework, social life and hobbies


•provides an alternative for patients not suited for lung transplant and for those who have not responded to medication, respiratory care or other medical therapy


•creates a dramatic improvement in lung function (45 -55% six months following surgery)

•may decrease need for supplemental oxygen

I Have News ~ :) ~ :) ~

The phone rang this afternoon and the voice on the other end told me she had heard from the transplant center.  Kellie... They are interested in your lungs.  They want to order a battery of tests which I will begin to schedule Monday morning and once the tests are received and looked at by them they will CALL ME FOR SURGERY.

Not Transplant.  They don't want to transplant me at this time due to my age. :)  Instead they think I may be a good candidate for Lung V0lume Reduction Surgery.  I will post some information after this blog for those who are interested in what it is and what they do.

As I was listening to my Pulmonologist's nurse it was like I was in a fog, dreamland.  Someone heard my prayers.  Someone could feel the fear I had about transplant.  Someone finally listened and acted correctly.

I couldn't be happier.  For quite a while tonight I wasn't sure if I was actually happy.  I didn't feel happy.  I didn't feel lighter.  I had repeated over and over to myself that I would have a transplant and I would be prepared and be fine.  Every night when I went to bed I said a prayer asking to make it to transplant and be better after.  So, hearing I wasn't to have the surgery I wasn't sure what to do or how to act??? 
Finally it hit me.  The reality of this hit me.  Yes, the University of Washington had heard of me, and yes they are interested.  Only this time I feel like I am starting with a second chance. 

People come through these surgeries and do well for years.  Maybe eventually I will need a transplant... But this girl doesn't get one yet!!  I have a second chance.  I feel like I can relax.  I almost feel that knot in my neck release for the first time in 17 months. 

I no longer have to worry about relocating to Seattle.  I will have to make some trips back and forth for follow ups.  From what I hear that makes all the difference in the world.  If nothing else comes from this it is that ..... I am a darned good patient.  I listen to instructions and follow them to a tee. 

I am hoping that if I get my breathing capacity better then these problems with my heart may go away.  These problems walking or swimming may go away.  I know this is not a cure.  I know I will still have limitations, but I should breath much better.  I shouldn't have anymore of those anxiety ridden out of breath moments anymore. 

What a nice start to a new year this would be.
I can go to bed tonight and dream the dreams of those free of stress. :) 

I feel bad about last nights post.  It is the first time I have ever spoke about  Bill's drinking "in public".  I feel like I am disrespecting him by doing so, but at the same time it is so nice to get it out.

Our entire marriage he has drank and most of  the time it's just fine.  However, the times it's "not" fine then it's ugly.  We have had THOSE times lately.  I am sure it's his way of dealing with stress.  Hell, I would love to deal with things by hiding in a bottle for the evening.  It's just that he gets argumentative and loud and I end up avoiding anything and going to bed or removing anyone from the situation.  When we have visitors I am on edge all the time because I don't know what may happen or when he may decide to strike out.  He is never physical, but says hateful  things sometimes.

Yes... I live with an alcoholic.  I have my entire life.  Both parents liked to drink and did so every day to some extent, and then I married a drinker. 

I want you to know, I love him.  He takes very good care of me.   He has stepped up and has taken over those things which I can't do anymore.  One little imperfection.

O.k.  That is all I can allow myself to talk about him and his issues.  I feel like I dishonored him or something.  There are just moments that I want things to be about me.  There are times that I need peace and no stress.  There are moments that I feel I shouldn't have to worry about having family and friends around me in case he may be in a mood.  You know... I shouldn't feel guilty about needing this time to be about me. 
All I have asked is for there to be no fighting, arguing or being pissy around me for a while. 

I have nights where I am awake for hours just thinking of all that could go wrong with the transplant.  Will Brittney and Bill be O.K.?  Will they be able to deal with my belongings fairly or will Bill change like my step father did?  I have nights where I just cry, for no apparent reason.  I have times when I go to bed that I feel so alone and lonely.  Times seem to suck lately.

I thank god for my anti-depressants.  I know without them I would be a heap curled up in a ball not able to deal with life.  I actually most days feel not depressed at all.  There are just periods of helplessness.
I don't talk to much to Britt about my fears and my health.  Yes, she goes to doctor appointments with me, but I do my best to put on a happy face for her.  She is entitled to have a happy life and not worry about my mental state.  I find myself getting quite good at covering everything up.  I can be cordial and have a moment .... go into the bathroom and have a little cry and come out smiling.  Does that make me crazy???  My life lately seems like I am living with a split personality.

The holidays are approaching and I usually go all out.  There have been years that my tree is up before Halloween... always up before Thanksgiving.  This year I want to hold off.  Somewhere in the back of my head I am thinking just as I get all of our decorations out and put up I will get a call to go to Seattle.  Wishful thinking?  God, some days I am mentally just not wanting to cope.  Today must be one of them.

I am so tired, I haven't slept well in a long time.  Last night was particularly dreadful.  I had cramps in the sides of my legs and feet.  Cramps that walking wouldn't even get rid of.  I would rub them and rub them as hard as I could and still they were cramping.  I am so hoping tonight is better.

I blew my diet tonight.  It was like a train wreck.  Of course I over ate on non fat foods, but on Weight Watchers at my weight I am allowed 25 points.... by the time I finished tonight I reached 40.  That will most likely kill my next weigh in.  I'll do better. Please... let me do better.

I want to be able to do with food like I did with cigarettes, only you need to eat food to survive, so cold turkey is not an option.  Turkey bacon, fat free chocolate pudding, Mandarin oranges, apples... I could not satisfy myself.  Ughhh.................. Tomorrow is another day.

Sorry for the self indulgent pity party.

There are moments of grace, when clarity and wisdom, love and understanding, guidance and insight, are brought to you and through you. These moments of grace will change your life forever, and often, the lives of others as well.  (Neale Donald Walsch)


I might as well get this right out of the way.  On these days I feel like a criminal being brought in to court to listen to his punishment. 
Yesterday I went to Weight Watchers and .............  Gained 1.6 pounds.  So again I am riding the roller coaster of weight loss.  That brings my total weight loss to 8 pounds. 

I am now forced to have a serious discussion with myself and remember that this weight loss is not to fit into a new pair of jeans, or to look good in a swimming suit.  This weight loss is as important as anything I have done in my life.  It will make a huge difference to the doctors who will decide if I am a proper candidate for transplant.  And, it will help me breath easier in the mean time. 

So, here I am re-newing my weight loss pledge.  Just reading my blogs in this area of my life I feel like a huge failure.  I won't be so hard on myself, and I understand that I am not the only one who struggles with weight.  It's just that me continuing to gain weight is a bad reflection on my goal to be as healthy as I am for transplant.  It is like watching a person with lung cancer chain smoking.

O.K.   Enough of that.

Bill and I have been talking (well mostly me talking and forcing Bill to listen) about just me relocating to Washington, and he and Britt can come up once a month or so to visit.  I will be tied to that hospital, or at least a small radius around it until my name is called for transplant.... We shouldn't have to put everything we own in storage and rent our house, or even sell it.  This will be a temporary thing.  Yes, even after transplant I will be required to hang around for a few months and I will then need some care and support.  We can cross that bridge when we come to it. 
It would just be so easy for me to have a small apartment without having to worry about our dogs or having enough room for all of our stuff.
I just get irritated when I try and talk with Bill about our choices, and he seems more worried about the dogs than for me to get up there and get settled.  I know he doesn't feel that way.  I know sometimes I am overly  sensitive... but we are at the oil and water stage again.  Nothing he says gets through to me and vise-versa.
I think a lot of it has to do with his drinking.  He gets stressed and hides in Screwdrivers.  I tell him that must be nice to hide like that, only it just leaves me here alone to deal with all of this.  It doesn't seem to faze him, right back at drinking the next night.
Just so you know... I grew up with drinkers around me and I didn't like it.  If someone could have one or two drinks and act normal that's one thing.  But with my mom and Bill (those closest to me) one too many drinks and I can tell.  And, they get so enraged when I bring up slowing down or quitting drinking. 

I think dealing with the unknown about this transplant and just dealing daily with the Copd is enough.  I feel like I shouldn't have to deal with his drinking and moods right now.  It's been a rough subject for us our entire marriage.  I am getting tired, I just want to not be apprehensive about his moods or actions and just deal with me for the first time ever.

I never in my life have lived alone.  I always either had roommates or was married.  But honestly, having myself to worry about for a while might be nice.  I know Bill will be fine without me, he can keep busy easily.  Britt and Layla I will miss.  But we can have phone calls, and they can come visit when they can.  

The part about this that is the most frustrating is... while I am on the list I cannot leave my radius.  So, if someone were to get sick and I wanted to be with them, I would have to be passed over for any organ that would come in during the time I was gone.  So... It's very important for me to be there and stay there. 

There is a transplant coordinator that stays with me throughout the transplant and follows me after. 

You know..... I just want to know what is coming.  I want to know where I will be and with whom?  I want to know if my insurance will be a problem and if I will need additional funding and if so where will it come from? 

Patience!!  Breath in ..... and out.  Repeat as needed.  This is what I mean.... I am not a good "these things take time" kind of person. 

This shows the gravity of how transplant effects a family.  I am always there for my daughter and granddaughter when they need me.  Not that Britt isn't fully capable of taking care of herself and Layla, but it's nice to have a grandma there for much needed breaks.  And, frankly I depend on Britt far more than most mothers do their daughters.  We are very close and consider each other best friends.  I talk to her WAY too much about Bill's drinking, but I have no other friends nearby to chat with.

I always feel like that is a dirty little family secret.  You know the kind.... everybody knows about it, but it is never "talked about". 
Bill is a good man.  He will drop anything to help out someone in need.  He volunteers his time helping so many people, he is a good guy. 
It's just that vodka that makes him unreasonable and one you can't reason with or talk to.

Enough talking about Bill.  I feel terrible doing it, but it helps to see what other stress I have.

I went to my surgeon today to get the "all clear" on my thyroid surgery.  He said all pathology was good.  He said he took quite a bit of my thyroid out and that I may possibly need thyroid medication, but maybe not.  Just for me to watch for symptoms.  I am not sure what these are, but will talk to my doctor about them. 

That's good news to me and I am fine with the possibility of needing a pill.  I'd rather that than the alternative.

O.K.  Meds are kicking in and I want to put this day behind me.  I wish for sweet and peaceful dreams and uninterrupted sleep. 

Thinking of a friend

Today was an exhausting day.  This was the day to update all my SSI information and keep them in the "loop" as far as possibly moving out of the state for transplant.  It almost takes an act of congress for my benefits to be forwarded to Washington State on a Temp basis.  I still have heard nothing about the transplant. 

This is difficult for me.  Knowing that this is in my future, but not knowing ANY details about journey.  I don't even know if I should put my Christmas tree up?  I am sure yes, but I keep going back to what my pulmonologist said... "I want you in Seattle before winter".  That makes me think at least for my initial consultation and exams it will be soon.  But then I talk with my Pulm.'s nurse and she says be patient this could take a while. 
So... where does that leave me?  I am in limbo.  I can do limbo, but it just makes this whole process seem like it's not happening.

I am trying to tie up all these loose ends.  I am going through closets cleaning and throwing stuff out, organizing other things and cleaning.  Making sure all my necessary paperwork is labeled CLEARLY in the filing cabinet for Bill and Brittney to get to if needed.  I am making notes and leaving them on my "desktop" on the computer.  Things like... where to find my advanced directive, my will, my bills that still need paid, my passwords for face book, pogo, credit cards... etc.  These things will have to be taken care of at some point.  I have also written personal letters to Bill, Britt and Layla to have after I am gone.  All this does not mean I am thinking negative because I am not.  I have to be realistic though and I would rather be prepared for the worse and not need any of it, than to go through what we did when mom passed away.  That was UGLY.

Bill and I went to the grocery store today.  NEVER again will I go to the store on the 1st any more!!  Rude people everywhere.  Anyway.. after our shopping was done we stopped by our favorite taco wagon on the way home and out walking our attorney.  He is adorable and the nicest most genuine man ever!  He keeps reminding me to finish writing my will and mail it to him and he will make it top priority and get it to the point where I can meet him at our bank to have it notarized. 

One of my friends I met on face book through the COPD group and I were chatting last night about how cute the trick-or-treaters were.  Tonight her husband left a message on her page saying she is in the critical care unit of the hospital with acute heart and lung failure.  She had been telling me she was coughing phlegm up, and I warned her about pneumonia. 

This is why I am so afraid of germs anymore.  I continue to knock on wood everyday and thank the big guy ^ up there for keeping me healthy.  I have not had one cold since I quit smoking.  That last cold I had in April and May of 09 scared me.  And, had I not been diagnosed and quit smoking in June I would have probably been in about the same shape as my friend.  I remember like it was yesterday.  We were at Brittney's house when she lived in Lebanon and Abe was there visiting for a couple days and I had to sleep on the couch almost sitting up in order to breath without having coughing attacks.  I don't think that I had ever been that sick or scared.

So, I protect myself as well as I can.  When we shop I carry disinfectant wipes to use on the shopping carts.  I soak all the veggies when we get home before I put them away.  I use cloths to wipe down all canned food we buy.  You just never know what is lurking.  Mom would be giggling at me.  She bleached EVERYTHING, even us kids at times.  She used more purex than most people use laundry soap. 

I have had some dizzy spells that has Bill worried.  They never last long, but I had one yesterday that almost took me off my feet.  I also have had some coordination problems.  I usually am not a klutz, but lately I just don't have my footing.  I am not sure if this is Copd related or not, but worth mentioning.

At the store today I found fresh Brussels Sprouts.  Have you ever seen them grow?  Bill was amazed.  LOL

We bought this awesome bottle of wine, I thought if nothing else we can use it for Thanksgiving or Christmas dinner.  I love the bottle.  LOL  That is no way to buy wine... I know I know!  ;)

My 87 Pages of recipe book I wrote and had printed.  I love it, and will make 2 more for my brothers only I will change the cover for them so it's not so "girly"

And to put a adorable face on the end to my night.... Layla.  She is growing so fast!