I am so disappointed in myself

I need to have a talk with myself and make me understand that losing weight is my #1 priority right now.  Well, behind trying to stay healthy. 

Let's backtrack shall we?  LoL  Week one on Weight Watchers I lost 5lbs.  Great!!  Week 2 not as good but still lost 3.4lbs, that's a decent loss!
Week 3 I didn't go because of Thyroid surgery the day before, but still thought I was eating right and drinking lots of water.  Week 4 (last Tuesday) I went and GAINED 3.4lbs which puts me right back to week 1.  I am so irritated and disgusted.

So, I am trying to get back on track.  Honestly, I could be much more focused.  I could use the weights I bought every day while sitting around.  I could do stretches and walk small walks.  I could make portion size smaller.

This food thing to me is harder than quitting smoking. 
I just have to keep focused on the transplant goal and in order for me to get there I need to lose. 

I have been waiting and waiting for the results of my Thyroid biopsy.  Just a few minutes ago I decided to call the surgeon.  His nurse tells me I need another biopsy because last time they got no tissue... only fluid.  Only fluid?  How the hell does that happen?  They took 5 samples.  That is 5 chunks off this mass in my throat, guided by an ultra sound and they only get fluid?  This is a "nodule" that on ex-ray and ultra sound shows it's solid?  How the heck does that happen?
I am a little more than irritated.  It was painful.  O.K., not child bearing painful, but very uncomfortable to say the least.  And, last time I didn't have a very easy time keeping my blood pressure stable.  It dropped to 83/76 and took a while to get back up.  I am just not looking forward to this.  The nurse will call me back today and let me know which day next week.  Joy of Joys!

Stay positive .... remain calm ... repeat as needed.  LoL

My memory is total poo lately, so if I keep repeating myself forgive me. 
I am so close to being done with my cookbook.  I am waiting for a few pictures from my brother and a couple recipes from my sister in law.  Then I can order one and see if I like it before I order more for gifts.  I will make myself a note later today to call them and give them by the end of the weekend to send me what I asked for 3 months ago, otherwise the book will be missing them. 

I made some different plum sauce.  I had half of the plums left over and they were getting soft and no one was going to eat them.  I think I like this recipe better.  It tastes more like an oriental plum sauce, I think because it has sesame oil in it.  Anyway... I was once again amazed that 4 pounds of plums (I weighed them for the recipe) once cooked down only made 4 pints of sauce.  So I have spent 2 entire days in the kitchen to make 8 pints of plum sauce.  lol  Oh wait... make that 3 days, I forgot about the rose hips.

We will appreciate those 3 days when we use it to marinate chicken or pork.  Or use it for a dipping sauce.

Berry's and Sore Lungs

Yesterday I canned plums and made Chinese Plum Sauce. Today I canned Rose Hips and made Rose Hip Catsup (more like BBQ sauce). My feet are so swollen, my back hurts and my lungs are just burning like never before.

There are forest fires burning around us. The slightest smell of smoke and I lock myself in the house and don't go out for anything. Yesterday Bill and I spent 2 hours in the morning picking fruit on the nature trail not realizing what I was breathing in. That air quality is nothing to mess with. Sadly we live in a smallish town that doesn't give air quality on the local news. So, I go out and if I can't see the mountains around town I know to stay in.

I can tell when I am going to suffer lung pain when my back starts to hurt. It always starts there then moves to my lungs. Today even my throat was getting sore.

It seems like it used to take fewer fruit to make more. LoL I swear I should have had pints and pints instead of what piddly amount I did. It's O.K. I enjoyed it and it made me actually feel like I accomplished something, which lately I haven't felt much like.

Layla spent the night last night. She is quite the girl. I just adore her. She sleeps with me ... we gave her her own room with a pretty little daybed and T.V. and her toys... but she always ends up in with me. Lately I have just given in and started her out in there. I go to bed much later than she does, but she always seems to know when I get into bed and hugs me and tells me she loves me. If only I could go to bed like that every night.

She started kindergarten a few weeks ago always tells me all about her outfits. This was her first school picture day. She is just growing up so fast.

I forgot to mention that at my last doctors appointment she said she was going to try and get me a Optometrist's appointment (even though my insurance dropped their vision program) I have a few of my medications that say they can cause vision problems. They called me yesterday and told me that she cleared it with my insurance and my appointment is the 5th of October. I am so looking forward to it. My sight is getting so bad. I use my regular glasses and for somethings like my prescription bottles I also use a magnifying glass. I can tell such a difference in a years time. I can't even read things that are written on the T.V..

I have been working on my attitude the last week. I have just let go of needing control. I have come to the conclusion that as far as my health and medical treatments go.. I have no control, and it doesn't help me worrying about when or if something will happen.

As for Bill and Brittney and I... I think that too is better. Bill still has the burden of doing most of the housework and all the laundry, and taking care of the yard. I used to do it all while he worked, even the yard work. Now I guess it's his turn. Only I am not out earning a living or contributing... I am sitting there most the time watching him. I have tried to take over all the cooking and dishes. When I can I do the dusting and vacuuming. I feel bad for him, and I feel guilty not helping.
That is the next thing I need to work on. Letting go of the guilt and realizing for the time being I can't do these things.

My biggest thing is waisted time. Months go by faster than ever now. And, with each one that passes is a missed opportunity to do something to make memories. They think I am crazy when I say we need to start making memories. But we do. I want to start taking pictures that also include me. For the longest time I stayed away from the camera because I was overweight. Well, that is no longer a reason to be left out of family pictures.

I am trying to make plans for after the transplant. If there is a transplant to be had... still no word on that either. Anyway... with or without a transplant there is that chance that my life will be cut short. I finished my advanced directive all I need to do is send it to my brother for his signature. They want 3 witness's. So.. Bill, Brittney and Greg will be making my final decisions if the need be.
I am writing letters to Britt, Bill and Layla to read after I am gone. I still have my will to do, which annoys me. At one time I had the entire thing written out and saved on my last computer. It had a melt down, I didn't back anything up and I lost everything! So, I need to start over.

I'll pick a day when Bill isn't going to be home. It's actually pretty easy. Brittney and Layla get all of my things. I am leaving it up to Brittney to pick out things for Bills daughters and a couple of my friends.
O.K. My night time meds are kicking in and I am off to bed.

Even though I didn't go to Weight Watchers this week (I am feeling like a cheat.  LoL) I am still doing my best to lose weight quickly.  These are 3 days worth of snacks.  Well, minus the plums in the strainer... those are left over from our walk the other day.  I am considering making Chinese plum sauce but have to buy canning jars.  Anyway... these are my snacks; celery and carrots cut into bite sized pieces ... red peppers and celery, and then in the large containers, tomatoes and cucumbers and tomatoes and onions and celery.  It gets me through till dinner time. 

My biggest problem is eating before I go to bed.  This is where a bowl of cereal or a cheese sandwich always was so good.  So, I am making fat free/sugar free pudding with skim rich milk.

Britt was here today and measured me.  We have done this every week for 3 weeks now.  In 3 weeks I have lost 4 inches off my stomach.  Yikes... Still have lots of inches to go, but that's not bad.  My chest is the same, which is usually the first place I lose it.  Lost some in my arms and thighs and butt, but I am most pleased with my stomach. 
I will be very interested to see what next Tuesdays weigh in brings.  It will be 2 weeks worth of losing instead of just one.  I admit I had a few times that I broke my rules.  I had a pepper jack cheese sandwich with mayo on really good bread one time, and then ate chips one night.

It's the late nights.  All day I can get by drinking water, munching on a carrot if I need to.  But, at night I need something cheesy, salty with mayo and bread!  LoL!!  Just kidding.

I have this idea that might help me.  I love soup, and especially this time of year when there is a nip in the air.  I made some vegetable soup yesterday that was really good and about 1/2 point for 1 cup.  If I bought some good heavy bread of some kind, maybe like a baget or something I could get my fix of bread and still come in under calories and points. 
I'll look at the store and see what kind of bread they have there for serving size and points value.  The Weight Watchers point value is just based on fiber and calories and fat grams.  If those #'s are low enough then I am good.  Actually you want high fiber and low everything else.

Anyway... Just thought I post my nightly struggles.  Tonight I'll go for the pudding when I need that something before bedtime.

Monday was the biopsy

I had my thyroid biopsy.  I usually handle these things very well.  Get in and get out, go home and rest then the next day I am as good as new.  This time the procedure went fine.  He didn't deaden deep enough with lidocaine and had to stop and use some more to numb the area he was taking chunks out of.  Other than that it was bearable, uncomfortable but bearable. 

This time I handled the procedure just fine, it was afterwards that there seem to be a problem.  They had been taking blood pressure before and during.  It started dropping some during the procedure, but after it went low and stayed there.  83/76 is the lowest #.  She told me she wanted to send me to the emergency room instead of releasing me... then kept taking it and finally said I could go home.  Bill, being a paramedic in his working days told me that was trauma criteria and if it had been him he would have taken me to the E.R.  Of course, I chose to come home.  We have a blood pressure monitor here and if it dropped again we are only 5 mins from the hospital.

As it was, I came home and slept all day almost through until Tuesday which is not like me.
Yesterday I felt much better.  So... what made my blood pressure drop like that I dunno?  Oh yeah... I will find out the pathology of the 5 chunks by the end of the week or next week.  I am counting on next week.  LoL

I didn't go to Weight Watchers yesterday.  Bill said it might be a good idea to stick close to home just in case.  So... I don't have weigh in results to give you.  I think I did well.  I know I am losing inches.  Britt took my measurements when we first started and last week I had lost a 1/2 inch pretty much in every measuring spot, except my breasts.  Those things are the last to go. 

Anyway, I had all these veggies and apples here, so I made breads.  I made 2 loaves (with 2 more to go today) of Zucchini Bread with Walnuts, 2 loaves of Apple bread with no nuts (for Britt), and 2 loaves of Carrot Bread with Pecans.  All from that one Zucchini bread recipe that is around here somewhere.  Anyway... Great recipes. 
I used 1 1/2 cups whole wheat flour and 1 1/2 cups white flour just because and really couldn't tell much difference.  It just made a heavier bread is all, and that's fine with me.  It adds fiber which is never a bad thing.

I haven't heard anything about the transplant.  I trying not to think about it and just live life dealing with the Copd.  My lungs have been burning again.  This time it's not letting up.  I still have that pain in my right lung when I breath in and out... like a stabbing knife pain.  Dr. says that's normal with my damaged lobes.  I also seem to be having nose bleeds much more frequently than before.  I am using saline spray trying to moisturize the tissue.  It obviously is not working.  So now I keep tissue with me always just in case.  :)  Love this Copd and all the little things we have to do to accommodate the disease! 
I have been taking the Flexeril during the days now.  And, since about day 4 or 5 I can now take it without it "doping" me and making me feel fuzzy. 

Fall is in the air.  Actually I think today is the first day of fall.  I love this time of year.  Warm daily temps about 65-70 with a chill, just letting us know there is a change coming ... Cool nights that tell my tomatoes to hurry up and get ripe!  LoL
I have our fireplace going this morning, and all it does it make me wanna decorate for Christmas.  I know, I know!  I have this problem with Christmas decorating.  One year I had the tree (fake) up before Halloween, and the trick-or-treaters were so confused!  LOL  Bill swears that any month ending in "BER" is fair game at our house for Christmas decorations.  He tried to get me interested in Halloween decorating, but no, not so much.  Black and Orange and spider webs doesn't "do it for me".

I have already bought a couple red pillows for the couch, and was eyeing this really pretty red furry throw to go with them.  One would think Bill would get annoyed with this.... Now... Every year since Layla has been here (5 now) Bill starts growing his beard out in August and has his own Santa Suit and plays Santa every year.  Some of the stores even hire him to sit and hand out candy canes to their customers.  LOL  He used to play Santa for the 911 centers Christmas party.  He doesn't charge them.  He played Santa for the Borders book store last year and Mrs. Santa (that would be me) got a 25$ gift card and a stuffed bear for Layla. 

I have about 5 more recipes to add to the cookbook and I am waiting now for a few pictures from my Aunt and then I can get my cook book done.  I promise when it gets done I'll post a link here.  I am excited about it.  It will make great Christmas presents for Brittney and my brothers. 

Britt is coming over this morning to wax her poor mom.  My eyesight is SO bad anymore that I can't even see hairs growing in places they shouldn't ... so I told Britt it is her job to make sure I am presentable.  She also is in charge of my "proper" hair color.  Over the years let's just say it is getting "lighter". 
I love her and she takes good care of me.

I promise to be better

I have talked, I have listened and I am doing better.  Bill and Brittney and I had a long discussion about my behavior, about their expectations and about the reality of what is going on with me.

We all decided to take off the gloves "so to speak" and just be honest with each other.  I had been keeping things from Brittney so I wouldn't worry her or burden that poor child with her mom's problems.  She explained to me that she knows me well enough to know when she asks me how I am doing and I give a half assed "O.K." that I am not being truthful with her.  At the same time I expect her to let me know (the way she used to) when things are upsetting her, because I can also tell when she is upset or going through something.
With Bill I told him I expect him to go to doctor appointments with me and learn what will be happening.  That by him not talking to me about things it is driving us further apart.  And, that also goes for me.  I need to not assume he is not interested because he doesn't ask questions... and just tell him what is worrying me and what is making me afraid.  We both agreed we need to become a married couple again and quit dancing around our problems.

I have tried to warn them that depression is a very real part of Copd, and I have no information to say this, but I can only imagine being told you need a lung transplant can add to that.  I am trying.  I am doing my best.  I just have some days where I am tired of waiting...... And, YES I KNOW, I have just begun.  Like I have said, patience is not one of my strong traits. That will be one of my biggest challenges .... to just let things happen at the pace they are supposed to.  No amount of wishing or bitching on my part will make it happen any sooner. 

I wanted to at least think about starting to pack.  Britt and Bill tell me to try and just relax and do what needs to be done right now for my health.  That if we get the call to be in Seattle whenever Britt and Fernando can come over here and babysit the dogs and pack everything if we need them too.  I have to give up control.  That's not easy. 

I have to realize that Bill worries about me when I leave the house now, so a phone call to him wouldn't kill me.  To remember I can't or shouldn't go on walks by myself.  Just in case.  These things are hard for me.  I have always done things my way.  If I wanted to go see my dad and Bill didn't want to go I would pack up and drive the 12+ hours to get there by myself.  I owned my own business and never answered to anyone. 
So, this is all new territory to me.  I think the only person I have ever felt really compelled to answer to was my mom and only when she would guilt me extra hard.  LOL

As far as my step father and step mother.  If I wanted to be a grown up and considerate I would say... I wish them well.  But evidently I am neither, because I do not wish them well.  I had been working on this family recipe book for months now.  I worked so hard to find pictures of family to fill it.  I am now using cropping to remove Abe from all of the pictures.  This book will be for me and my  brothers and any friends who wish to order one... If they feel like having Abe in pictures is needed then they can add him. 
I don't want to open that book up and see him with my mom and think of how he disrespected her and made their relationship meaningless to me.  I want to remember mom happy and smiling.  It's my book, I can do what I want with it.  Now... tell me that doesn't sound like a small child having a tantrum!  lol

Bill and Layla and I went Berry picking today and it reminded me of this picture and this day.  We lived in Alaska and we were out on a beautiful fall day picking rose hips by the gallons!  LOL  Then mom went home and made batch after batch of rose hip catsup.  I called the Alaska Extension office years later and asked them about the recipe and they sent me a really nice book of wild Alaska Berry's and fruit and recipes to make all kinds of stuff.
So... We picked and picked today.  Bill picked wild plums, and then he and Layla picked black berries while I picked rose hips.  I didn't pick nearly enough so we will go back down Tuesday and pick enough more to make catsup.  Then we'll need to buy canning jars and lids.  I thought I was over this years ago!  LoL  I haven't canned in forever.
Smelling the rose hips took me right back to our house and the smells.  Ahhh It was nice.

Tomorrow morning is my Thyroid biopsy FINALLY!  It's only been 3 or 4 months.  I am of course not looking forward to the procedure, but will be glad to get some answers.
It is just done with a local anesthesia and will only take about an hour.  Once it's finished I can just go.  No lifting or even twisting of my neck.  She said just get into a chair and stay there for the day.  That the thyroid is full of blood vessels and bleeding is always a concern.  So... I will sit.  I hate sitting... but I will sit. 

I am not sure who is reading this anymore.  But, I just wanted to thank my friends.  Those who support me and don't make me feel like I am being a baby or pain in the butt.  Your kindness and friendship mean the world to me. 

Today isn't good

I feel like I am in a downward spiral.  I have hit the bottom, at least the bottom for me.  I don't think I have ever sunk this far.  I feel anger... great anger.  Anger at those around me and destain for myself for feeling like this.  I have never experienced such dread before.  What brought it on the last couple days?  Who knows?  It could be pushing at Bill and getting frustrated he won't do or say the things I need, or it could be just a new bigger depression. 
I hear that my step dad is back together (officially) with my step mom.  Long story... one I don't care to go into right now, but I have such anger.  HUGE AMOUNTS OF ANGER, and sadness for my parents who are both dead.  Neither one of them would approve.  Neither one of them would be O.K. with this. 

Is this what happens when your spouse dies, you just quit thinking about them and honoring their memory?  Because this is not honor.  This is a spit in the face.  I felt sick to my stomach when I read on a face book page how "happy they are together, and it is such a nice ending to their lives".  BULLSHIT!  It is like all the pain and anguish of my youth was for nothing.  When I went to visit my father it was understood that my "other parents" name was not to be mentioned, and the same when I was with my mom.  Even as the years went by and I grew into an adult.  Now they are back together and both my parents have died.  That is honor, that is cherishing a memory.  Anger, that's a good word for being 48 and feeling like my mom and dad never mattered to them. 

It just added to my day.  Bill and I got into a "discussion".  Discussion is a polite word for not quite fighting, but loud arguing and accusing the other of being the reason for all discomfort in the house.

According to Bill, I would not have to worry about any of this if I would have quit smoking when "he asked".  That was almost enough to make me pack a bag and leave.  He brings it up once in a while, this was a below the belt hit though. 
Evidently it's not just Bill who thinks I am being mean or short tempered, he says Britt feels the same way.  So, Britt comes over to bring Layla's things (because Layla is spending the night) and I say.. "so, I hear I am being quite the bitch lately and treating you badly"?  She says, we will talk about it tomorrow when she comes to get Layla.  Which just means I have another day of crying, sobbing and breathlessness ahead of me. 

The last person I would want to hurt is Britt.  I have even tried to keep tests and news from her to sheild her from hurt or unnecessary worrying until I get all the results. 

The thing is... yes I know I am moody.  I tried to explain to Bill I sit awake nights when he goes to bed at 6:30 or 7:00 and think of nothing but what is ahead for us.  All the unkowns... will we have to get an apartment?  Can we afford it?  How long will we be away from home?  Should we just sell our house and relocate?  How long until I even hear anything? 

I just finished yesterday all day filling out my Advanced Directive.  It took me all day.  I thought about each question... Do you want tube feeding and life saving measures if you are unable to speak for yourself and there is little to no hope for recovery? 

This advanced directive I got from the hospital is very specific about anykind of scenario that might come up.  I told Bill tonight when he kept telling me how moody I am and how he feels like he is walking on egg shells around me... First I apologized to him, then I told him this.... After spending about 8 hours (while he was across the street helping a neighbor build a deck) deciding my fate, in every life and death scenario there is... how do I change moods to happy, carefree and agreeable? 
It may be easier for him and Brittney to be judgemental because they are not dealing with this on a daily basis.  I go to bed at night and lay there thinking about surgery, about what happens to those around me if I don't make it, about if I do make it and what will life be like and how long will it be?
Then to have Bill tell me I did this to myself........... YES I DID.  Should I wear a scarlette letter around my neck so everyone knows, yes I am sick... but I somehow deserve this because I did not listen to my husband and quit smoking?  If I never hear that statement again it will be too soon.

Bill has not been to ONE doctors appointment with me.  Britt has been to 3.  She is more likely to realize what I am going through than Bill is because she has heard it from the doctors.  I try and tell Bill and he argues with me. 

I guess I have made this public enough.  Bottom line is I had a crappy week.  I felt terrible, tired, moody, lungs burn, nose bleeds, and irritable because I want to eat comfort food... Cheese, Red meat, Grease. 

I am upset.  I feel like the whole world is against me right now.  I know that is over dramatizing things... but I need to get a grip.  This is not pity, or feeling sorry for myself.  This is actual fear.  It is writing a will.  It is writing letters to file away for Bill, Britt and Layla.  It is preparing for what "could" happen.  That is not being morbid.  It is very real. 
I am hoping that this mood lifts.  I am hoping I can bring back my family.  I really miss them.  Bill is like a stranger who lives in the house with me.  He sleeps with the dogs, me in the guest room because of my tubing and concentrator.  With my moods he leaves and finds things to do elsewhere.  Then comes home and goes to bed.  Britt is busy with her life and her boyfriend and Layla being in school and herself starting back to school. 
It's me who is alone.  I guess I am to blame.

When people tell you enough that you've changed I find it hard to figure out who I am or what I was like before? 

2nd Weigh In

This morning was my second weigh in at Weight Watchers.... lost 3.4 pounds.  It's not exactly the 5 pounds I lost last week, but it's still significant for one week.  I will be happy with that.  I am still eating once a day mostly, and always a good protein and a ton of veggies.. be it broccoli or a ton of green leafy things. 
I have been eating fish which amazes me.  It still is not what I would call one of my favorite meals, but it is high in protein and lean with good oils.  OH MY GOD I have become a granola cruncher!!  LOL  Not quite, but I am watching very closely what goes in my mouth.
My problem, and for those who don't like "personal blunt talk" shut your eyes and skip over this part.  .... The heart medication the doctor put me on causes Diarrhea.  I was taking 5 big fiber capsules a day and NADA.  So today I talked to my other doctor who tells me I am not normal... well, DUH I said.  She told me which kind of gentle laxative to use which won't cramp me up and I can use it ever couple days if I want. 
One would think with all this healthy food going in... something would easily come out.  LOL  O.K. enough talk of that type of stuff.

I am working on the cookbook and will soon be lumping all the recipes into one category.  I will still occasionally add one here and there, but for the most part once I get done with the cookbook I am taking a break on the food writing.  All it does is make me hungry.  I am already wondering what will happen this year when I start my Christmas baking.  Those cookies and fudge will have to come out and go right into baskets for our friends.

I'm here

I took a much needed few days off.  I had a lovely talk with the nicest woman (I won't mention her name without her permission).  She had a transplant in 1998 if I remember dates correctly?
It was wonderful to hear her speak about the surgery, the recovery and the ongoing battle with infections of all kinds and her struggles with the immunosuppresants. 
But, as she said... "I am still here, I am oxygen free and I am living".  That about says it all.
Another woman called me, come to think about it strangely enough from the same state and live not far from each other.  She hasn't had a transplant yet, but is on the list waiting.
It set my mind at ease to hear actual human beings talk about transplant, rather than read it on some web-site or some hospitals postings.  It also made it much more real.
Both of the women said to try not to think about it.  It can be a long road and patience is necessary.  Well, I need to take a class on that, because it is not one of my best attributes.
I spoke with my Pulmonolgist's nurse last week and she said that once she gets things going she will call me and let me know.  So, it really is out of my hands and now I wait to get on a list that I will wait some more. 
I feel like I have all this time that I could be doing something?   Packing things in boxes so when we leave we can either rent this house or move in Brittney.  Either way... we will need to pack our things.  Some to take with us.. some to store.  I have been going through small places and throwing things out and organizing others. 
I am trying also to tie up loose ends.  I am not thinking morbidly... only realistically.  I have yet to do the advanced directive or will.  Even though I blogged about it somewhere here... and expressed the importance of having such things!  Ugh... I am not good at taking my own advice either.
This recipe book that I started I am almost done with.  Once I finish I will post a link here and you can order a copy if you want.  It will have most of these recipes along with many more from my family.  I was surprised how cheap only 35.00 for the book.  Printed, using my own pictures, pages that you an add to and remove to use in the kitchen.  Very nice.  It is actually 35$ for 100 pages, I have 74 pages and one dedication page to my mom.  So, I can over time add 25 more pages to this book for free.
Anyway... I thought that was one thing I could get done that I wouldn't want to drag a large box of family pictures and recipes along with me. 
I was talking to my brother last night (love him and he calms me down) and he said if we are taking the dogs (which Bill won't move without) we may be asking for trouble.  Only because we would then have to find somewhere to rent that allows dogs and has an elevator or ground floor apartment so I can get in and out easily.  Didn't even think about that.  I would have been on the 10th floor and walked down to go shopping and wouldn't be able to get back UP to my own apartment.  LOL
I have had a few outbursts at Bill and Britt.  Just moody, snotty behavior of which I should be ashamed.  One day poor Bill got it with both guns. 
I was trying to snap him into reality and trying to making him talk to me about this transplant business.  He will talk to his friends, our kids, my brothers but not me.  He said he was afraid.  I tried to explain that is to be expected and we can be afraid together, but I need to be able to talk to him.  I need to be able to know he understands what is in store for us.  He just shuts down, which I find to be the most frustrating. 
Anyway... I am working on my moods.  The last 2 days are much better. 
I just didn't want you all to think I had vanished.  I just needed a few days of down time. 
Before I get off the computer I forgot to mention the hospital called me and my thyroid biopsy is scheduled for the 20th.  Now, I am off to bed.

It's been a long day

The last couple days for me have been tough.  I am not sure why now?  I thought I had gotten used to the word transplant, even spoke about it to a few friends and my brother without crying or wallowing in self pity.  These last couple days I think the full spectrum of what will happen and what needs to be done hit me.

I got a call this afternoon from the Radiology department at the hospital.  The surgeon who was going to do my biopsy of my Thyroid can't do it now and so a Radiologist will.  I will have it done to only the right nodule on my Thyroid the 20th of this month.  Day surgery, just need someone to drive me home because of the anesthesia they will use.  A local I do believe, maybe a Valium to relax me they said.  She'll call the day before and go over what I am not to do, and from now until then I am supposed to go up to the hospital for blood work.  Fine and dandy, it will be nice to be able to check this off my list of things falling apart on me.

That's how I feel.  Like my body bit by bit is breaking and becoming useless. 

I had my appointment with my Primary Care Doc today.  I adore her.  She was not surprised at my transplant situation.  That is why she pushed to get my pulmonologist appointment pushed up.  She and my pulmonologist decided they cannot fix my heart issue.  It's my lungs causing my heart problems.  Medication will mask the problem, but not fix it. 
Also, my oxygen saturation is at a point where I will need a different kind of concentrator at home, and a larger canister.  I now will need to have one of those tall slim ones that is on a cart to wheel around which means how the hell will I shop or do anything? 
Also, because my saturation is at such a low point she said I could notice problems with coordination.  And, this explains my headaches that won't go away even with meds, and my short term memory loss.

So.... I am becoming an idiot!  I am kidding and making fun of only myself, not others who are going through this.  That wasn't very nice of me... but I am beyond frustrated.  I really feel like damaged goods.  I feel like I can't be left alone, I can't be depended on for simple things.  I forget to take my meds some days.  I forget words when I am doing these blogs, and sometimes it takes minutes.. I mean 5 or 10 minutes to figure out a word.  I can tell you the definition of it, but can't come up with the word.  I will be talking to people and suddenly lose track of my train of thought.  Yes, this has happened once or twice, but it is happening to me almost daily now.  I scold Bill and Brittney when say "I told you" that, or "we just talked about that".... It feels like they aren't listening to me.  Listening... that's another thing my hearing is going.. I can't tolerate over stimulation anymore.  Like having the T.V. going and Bill talking on the phone, and Brittney talking to me.  I just want to scream, and sometimes do... I have Layla trained not to make a lot of noise in the house.
These are things that are new.  I could handle before my shortness of breath, the tightness in my chest, the hoarseness of my voice... But not my ability to hear, remember and write. 
This must be what the beginning stages of Alzheimer's feels like.  TERRIBLE.

OK,  Dinner tonight.
1/2 cup egg whites, 1 ounce pepper jack cheese, 3 slices turkey bacon 1 slice crumbled and 2 eaten, 8 potato slices baked then smashed, onions, red peppers and some cherry tomatoes.
Weight Watcher Point total 12 and water. 

Wandering Aimlessly

To eat today... 1/2 cup Edamame just as a snack to munch on.  I love them.  They are loaded with fiber and no fat and little calories.  Then I had a cup or so of cherry tomatoes off the vine.  :)  That got me through to dinner, that and water, water, water.
Dinner was Sole (white fish) cherry tomatoes with a sprinkle of fresh parm cheese and a rice salad I made.  Brown rice cooked as package says.  Remove and add 2 teaspoons of sesame seed oil and let cool.  While waiting to cool take frozen peas out and let thaw and chop some green onion.  Throw all together and refrigerate.  The longer it sits the better it is.  Salt to taste... I am off salt right now so I forget to add that.
Anyway... that's dinner.  High fiber, low carb, low calories and fat.... And, water, water, water.  If someone a year ago would have told me I would be eating fish and drinking water all day I would have told them they need to lay off the juice!  LoL

I have had a bad day.  I think I can safely say this is the second one of these I have had in a year.  The first one was just frustration and fear of having emphysema, and this one I think is just a combination of being afraid and not knowing what to expect, and the waiting.  I KNOW and I just am getting started.  I strike out, I cry and basically act like a spoiled child not getting her way.  Three times today my O2 cord has been jerked off my face.  Usually I can just put it back on and smile and continue on.... today I threw it across the room and stormed off.  It is either me sitting down, then when I stand up I step on the tubing and rip it off, or it gets caught under a door or around the couch, or under the refrigerator door and gets ripped from my face... once in a while the poor dogs will get caught up in it, or Bill will step on it.  I HATE IT!!  All it does is remind me how much of a pain I am anymore, how I have "medical supplies" that I need and follow me all over the place all day and all night.  I am getting so out of breath that I am considering taking it into the shower with me.  

I got a lovely note from one of my friends, one of my mom's lifetime friends today with copies of some of mom's recipes and a lot of pictures.  I bawled.  I miss my mom so much, there isn't many days that go by that I don't think of her.  I wish she were here with me.  We both did this to ourselves, she just got away with it for more years than I did.  I wish we would have both smartened up years ago and gave up the smokes so we could be crafting or exploring today.  I watch Brittney smoke and it takes every ounce in me not to scream at her.  I know that won't do any good.  She tells me she will quit in November.  I am going to hold her too it. 
It was a nice surprise today and I need to remember to get a Thank You note out to her.  

Speaking of remembering... The last month I have noticed I am forgetting small things... Big things... just things.  Mostly short term, but forgetting just the same.  Bill said today he has noticed it getting worse.  He thinks it is oxygen deprivation to the brain.  Could it be?  
I have a doctors appointment tomorrow afternoon with my Primary Care Doc. I will ask her what her opinion is.  I also have to let her know I have yet to hear from ANYONE regarding my thyroid.  I have to have all medical issues resolved by the time I get to Seattle.  
I have to remember to just BREATH..... B R E A T H. 

I got a call from a woman who I met on a transplant group on face book.  She too is waiting.  Only she is waiting for a double lung transplant.  She's been on the list at the University of Wisconsin for 5 years.  She gave me some good advice and some information.
Tomorrow morning a woman will call me that has had 2 transplants.  I am very interested to talk to her. 

I know this will take the patience of Jobe, something I have none of... especially lately and with this disease I want instant information.  That is just not possible, and I know I am being unreasonable. 
I spend nights while waiting to fall asleep going over having to move to Seattle and what to do about our house, my things, our dogs?  How long will we have to live there?  Should we sell our house and just move and buy something there?  It wouldn't be out of the question I have my brothers in Eastern Washington and it would be nice to be closer to them.  Then I wonder about Britt and Layla.  I haven't been away from Layla for any period of time.  How will I handle being away from my girls?  Will Bill be happy there?  What will he do to keep busy?  If I live out of Oregon will my SSI transfer?  Will Oregon Health Plan (my insurance) still cover me if I am living in Washington?  So many questions and many of these I won't know until I get to Seattle for my first visit.  So... I will continue to lay there at night and wonder.  These are what sleepless nights are made of.

Speaking of sleeping... It seems lately I am asleep more than I am awake.  When I am awake I am tired.  I am sure that is oxygen saturation.  I really need to order an oximeter to find out what my O2 levels are.  It just seems everything costs so much $$. 

I Borrowed my neighbor's water-bath canner.  I have a ton of tomatoes this year and still so many that are green that I hope will ripen.  They are starting to get ahead of me as far as what I can eat, and what will go to waste.  So, I am going tomorrow to buy some canning jars and "put up" some fresh tomatoes.  At least then I will have fresh good tasting tomatoes for soups and casseroles this winter.  I am also going to go back to the nature trail and pick some rose hips.  I found Mom's recipe for the sauce and I will can that as well.  If there are any of the wild plums I will see what I can do.  I don't think I will can those, but will definitely grab some to make plum sauce with... Great for lean pork or even chicken.

Well, as you can see I am all over the place today.  I cannot get one thought to stick, I can't get one mood to hold onto.  Must be time for bed.

First... the girls came over this afternoon.  It was Layla's first day of Kindergarten today.  Here's my beautiful girls.

Layla was so excited and felt like such a big girl.  She said though... grandma there are no blankets at school and so that means no thumb sucking.  LoL  We have been trying to get her to stop sucking her thumb.  Actually no one has worked on it very much, only to tell her Big Girls don't suck their finger.  She does really good until she actually holds her blanket... as soon as she can feel her blanket it's automatic, her finger goes into her mouth.  She goes a full day.  That surprises me.  I thought kindergarten was 1/2 days.  Anyway... She will do great.  Except, WOW there are 35 kids in her class with one teacher.  That is crazy.  What happens to all those school levy's and taxes we pay?  That to me is just unfair to the kids and the poor teacher.  Britt says they rely on parents volunteering.  If that is the case, then the city should give them credit on their taxes.  LoL  When I was little no one would have considered having parents help teach and our taxes were so much less.  What's going on?  Another thing Britt isn't really happy about is their lunches.  Britt said she looked at the months menu and the healthiest choice was one meal of turkey with gravy in a bowl... And that isn't even healthy.  The rest of the menu is pizza, corn dogs, chicken nuggets, french fries, puddings, and chocolate milk.  MY GOD!  No wonder the kids of this generation are getting fat. 
Did any of you see the Jamie Oliver experiment?  When he fought one town somewhere in the Midwest to re-do the school lunch program to fresh healthy foods, instead of frozen, processed foods.  It took a act of congress almost to let him feed kids fresh meat instead of processed chicken and nuggets.  Fresh veggies instead of french fries... the school's idea of a approved healthy veggie was french fries!!!!!!
Anyway... Britt said Layla will most likely have a few lunches at school, but will also be packed a decent lunch to take to school and then drink their chocolate milk!  LOL  Ridiculous.
Ok... I am off subject again, and this time really going to bed.

The nature trail

I wanted yesterday to go for a walk on the nature trail.  I have walked it before 2.5 miles and there is always something to see.  Bill didn't want to go yesterday and I didn't want to bother Britt so I didn't go.  Today I asked Bill and he said he wanted to take a nap, so Britt and layla went with me.  I didn't get very far without having my lungs seize up on me.  I just couldn't get air.. and that was with the oximizer they gave me.  I am not sure if it was because a low pressure system is coming in and the wind was blowing at my face... or my lungs just wanted the day off?  So, we didn't walk.  We turned around and backtracked and took a few pictures and found some fruit.  LOL

Rose Hips.... I am going back tomorrow to pick some for sauce

Layla trying to convince me more berries won't make her sick.

Wild Plums..  I am going to try and make some plum sauce

My girls <3  Just love them. 

This was supposed to be just a walk, white clothes and black berries are not a good idea.

I didn't take any pictures of the Black Berry bushes because once we realized they were there we had emptied out our water bottles and filled them with berries and our hands looked like we had been in a cat fight and Layla's white dress had the prettiest purple stripes on it.  We pledged to go back tomorrow with equipment to get back into those berry bushes and get the bigger berries. 

Britt even climbed a tree to get some fruit we didn't know what it was.  She couldn't get high enough but I found some good specimens on the ground to bring home. 

Then we found huge patches of rose hips.  When I lived in Alaska my mom and step dad took me and a girlfriend out picking rose hips.  They brought gallons of them home and mom made Rose hip Ketchup.  It actually wasn't as good of Ketchup as it was a BBQ sauce for beef and chicken.  And, it's SO good for you.  I think she even made Rose hip Jelly.  Anyway... I am going to make some sauce.

If was can find enough of the mystery fruit (that I found out were wild plums) I want to pick enough of those to make plum sauce out of.  GREAT for pork!

So, after losing 5 lbs last week and weighing in this morning... Tonight we took some friends to dinner at a Mongolian restaurant.  I had no meat, lots of veggies and LOTS of yaki-soba noodles.  I can't  find anywhere how many points that might be, so I am maxing out my points for today. 

The rest of the week I will have to do great.  I don't want to lose momentum.

I am not sure if it's because I have a full stomach, or because I haven't been sleeping very good, or from all that fresh air this afternoon... Fall is in the air.. But I am so tired tonight. 

It is only 7:30 and I am ready for bed. 

First weigh in minus 5 pounds this week

Last night Britt and Layla came over for dinner.  I ate Fish!!!!  let me say that again.......... I ATE FISH!!!  I hadn't eaten fish (besides the really good heavily breaded kind) since I was a little kid.  It didn't kill me!  It actually was pretty good. 

Of course, with every meal I am eating a ton of veggies.  So we also had broccoli and peppers and onions.  Notice that every meal has peppers and onions in it?  It is a great tasteful healthy filler!  I am all for healthy fillers. 

Britt and I went to Weight Watchers this morning.  Our first weeks weigh in. I lost 5 pounds.  I am happy with that.  I know there will be weeks that the weight won't come off and there will be plateau's that I reach occasionally, but I am determined to lose as much weight as quickly and healthily as I can. 

When I have my first exam with the transplant center, I want to show them that I am serious about following rules, and taking care of myself.

I started slowly exercising.  It's difficult when you are not supposed to get your heart rated up to find something you can do.  I bought one of those Shake weight things.  I am using it to try and tone up my upper arms and back and shoulder muscles.  It does give you a work out.  Then I bought a 5 lb work out ball.  Also to work my upper body, but also to use while I do little tiny curls on the floor. 

I am going walking this afternoon.  I found a oximizer cannula for my oxygen.  What it does is trap some of the O2 in a bladder like thing and when you are breathing heavily it gives you a boost of O2.  I am going to try it today on a 2 1/2 mile walk on the nature trail and see how it helps.  Walking and breathing isn't the issue as much as when I do anything that exerts energy my O2 levels drop quickly, and that is dangerous.  I am hoping this works.  I am so determined and focused on getting my body in transplant shape that I do not want my own set backs. 

I understand there will be setbacks, if nothing else this last year has taught me that.  I just want to be able to take control of one aspect of my health and life. 

The last couple days have been difficult air wise.  My lungs have been burning, especially my right one.  It gets so painful that they have woke me up the last 2 nights. 

I have noticed and Bill has noticed that I am having incidents of memory issues.  Short term and words.  Bill can tell me something and the next day or even hours later I would swear he never told me.  When I am writing sometimes I have a really hard time coming up with a word.  I can describe it, but can't find the word.  In this area... Bill has been an ANGEL.  I don't know if this is a menopausal thing, or a Oxygen to the brain thing, but at moments it is embarrassing.  I will be in the middle of a conversation with someone and just go blank. 

I belong to a group on face book that is a Transplant group.  People who are waiting for new organs, people who have already had them, family member of transplant patients.  When I joined I introduced myself and asked if there were anyone who had been through the process of a lung transplant who wouldn't mind talking to me.  I had several reach out to me.  I met a very gracious woman named Judy Russell who will be calling my Thursday.  She had a double transplant from a living donor then had to have another single transplant.  So, if anyone... she should be the one to ease my mind about these survival statistics I keep seeing.  I am making a list of questions for her.

Bill tells me to just wait and not worry until the time comes.  Just knowing what could be in my future is scary.  I have confidence that I am strong and can fight when backed into a corner, I just am afraid of the months and short years following the surgery.  I can't not think about it.  It is always in the back of my head.

We are going to dinner tonight with friends.  So I need to get going if I am going to walk and come home and get showered and ready.  TahTah

Family dinner and I am off to bed

It's been a long day. Yesterday school shopping and Layla spent the night. She is the most adorable thing and the joy in my life. Waking up to her saying I love you grandma is just about the best thing ever!

We went to Britt and Fernando's tonight for dinner. We try once a month to have a family dinner. I cooked today and was in the kitchen 5 hours. I cooked stuffed chicken breasts and made roasted red pepper sauce to serve over it. Then made garlic bread and a big salad. Doesn't sound like much... but it is just very labor intensive. Worth it, but it is one of those dinners you wish you had someone helping you prepare it. I don't know if you've ever tried to peel a roasted pepper.. not easy. Anyway, dinner was good.

I had a 5 ounce chicken breast and salad with yogurt parm dressing. No bread. I love bread! LOL
I think it's funny I have been taking the fiber pills and haven't had a bowel movement since. I am not uncomfortable, but definately not lighter in that general area either. Britt was amazed when I told her. She said that worked so well for her.

So, I think for the time being I am off the fiber pills. I think the veggies and water will flush my system just fine.

I am exhausted tonight. I was tired last night and then today was a killer so I am going to go take my meds and get in bed.

School Shopping

I am so tired tonight. I took Britt and went school clothes shopping for Layla. She starts school Wednesday. Kindergarten, it just doesn't seem possible. We ended up bringing Layla back home to stay with Papa after we got her sizes down, then went back out shopping.

I am so tired.

I came home and ate dinner. A chicken breast sliced up on top of romaine lettuce, onions, english cucumbers.. with sliced beats and a boiled sliced egg. And of course water with cucumber.

I didn't drink all my water today and I ate WAY too late. I didn't eat dinner until 8:00 and by that time I was famished. I'll remember to plan ahead next time and at least eat a little something before we leave.

It's been a long day, and I have the cutest little girl who is snuggled up in my bed. I am going to take my meds and go snuggle. Good night.

Doing My homework

I have been looking online since I got the news anything I could find about lung transplants. Success rates, hospital ratings, surgeon ratings, after care, before care, just anything.

I have found for sure that the survival rates scare me. This is the best and most recent article I found regarding success rates.........
Lung Transplant Statistics in the U.S.
Article by Leigh A. Zaykoski (11,712 pts )
Edited & published by Emma Lloyd (16,921 pts ) on Jul 31, 2010

Patient survival after transplant depends on several factors. Lung transplant statistics for 2009 indicate that 95.6 percent of adult transplant patients survived one month after transplant. The survival rate decreased to 82.86 percent after one year and 66.96 percent after three years. Pediatric survival rates follow a similar pattern. Pediatric patients had a one-month survival rate of 97.30 percent. This rate decreased to 87.98 after one year and 64.57 percent after three years. Some of the factors that affect survival after a lung transplant include post-operative care, adherence to medication regimens, compliance with physician instructions, the presence of infections or other medical conditions and the amount of support a transplant patient has during the recovery period.

These #'s just don't thrill me, as a matter of fact when I see these figures transplant doesn't sound so appealing.

I understand this won't be a easy or pleasant process. I have read and fully understand that the surgery and recovery is brutal. One of the toughest as far as discomfort and pain goes from what I hear. However, it seems to be almost like giving birth for a woman. Extreme pain that you somehow forget because of the happiness of what you get from it.

I found a blog written by someone who underwent the transplant process and is writing about it. Sounds like my kind of person.

Here is how he explains the surgery...
www.newlungs.com

Question:
What is it like?

Answer:

What is a lung transplant "like"? It's like needing major surgery you dread at first but by the time you really need it, desperately hope will happen. In actuality, by the time you get the call--if you are lucky enough--you won't really care what it's going to be like, because by then it can't be any worse than what you've already been through.

Or, from another point of view, as I told my doctors, "Listen, I've had Periodontal surgery--nothing you can do will ever come close to that". As it happens, it's largely true.

But as far as what actually happens after you get the call, once the basic mechanism of getting you to the party has been accomplished, this is what you will likely experience:

1. Upon arriving at the transplant center, you will be delivered to a prep room on a gurney where you will receive an IV line and a mild sedative, possibly from a technician that seems to speak a language other than your own. Your spouse or one family member can usually accompany you up to this point, but after this, you are wheeled into the Operating Room alone. There, you'll be be put under general anesthesia and possibly hooked up to a cardio-pulmonary bypass machine (depending on whether you're getting a single- or a double-lung transplant), and the operation will begin. Your family will go to the waiting area where they will spend the next 5, 6, or 7 (or more) hours. Periodically, a doctor or nurse will come out to update them as to how you are doing, or if the transplant will even be performed. Often the donor organs will, upon closer inspection, be rejected prior to transplantation. Then the operation is called off and everybody goes home, only to again--hopefully--repeat the process all over again when another donor organ becomes available. This is actually a good thing, as long as the patient can withstand additional wait (not to mention the mental anguish), since a donor organ in poor condition will not lend itself to a successful outcome. Some patients have gone through this process two or three times before finally becoming transplanted. It is the mark of a talented transplant team that knows how to differentiate between good and bad donor organs.

2. Upon completion of the surgery, you are moved to ICU, where you eventually wake up on a ventilator and with all kinds of chest and neck tubes and urinary catheters stuck in you. Typically you will also have approximately 60 staples across your chest in what is called a clamshell incision, which runs from armpit to armpit under the nipples. On one side of the bed there will be a container with what looks like Hawaiian Punch that drains from your chest. On the other side there will be a container with what looks like apple juice that drains from your urethra. You will be on a small flow of oxygen through a nasal cannula and remain on the ventilator for a day or two. You will have a very dry mouth. It will be all you can do to try and ask for an ice cube or lemon-flavored swab to moisten your mouth. There will be one nurse that amazingly, will be able to perfectly understand your mumblings, but all others will ask you to repeat yourself over and over again. Periodically, a nurse will come in and administer a mechanized vibrator to your back to dislodge any mucous. You will think of and say many hilarious things, but they will not seem all that funny to you.

3. At some point, the ventilator will come out and you will be better able to talk. Things will be confusing, and you may even feel that the entire hospital is conspiring to kill you. This is usually an illusion (kidding). You may try to, or even successfully use the telephone to call home and tell them to come and get you right now, because you are "getting out of there". This will pass.

4. A nurse will at some point come in and help you out of bed and somehow get you to walk approximately 10 feet using a giant stand-up walker on wheels. You will get back in bed, totally exhausted, and wonder why everybody around you is so apparently happy.

5. The food will be so distasteful that you will be nearly unable to eat. You will find that the mashed potatoes are especially disgusting.

6. After about a week to ten days, you will leave ICU and get a bed in a private room in the step-down unit and be on reverse isolation in a ward with other transplant patients, possibly even some with organs from the same donor as you. The food will start to improve. A night nurse will be your friend as she takes the time to explain your medications to you and help you to gradually learn to assemble them yourself. Every day you will be dragged out of bed at 6 AM to be weighed and a mobile X-Ray machine will be wheeled in to X-Ray you in your bed.

7. A sub-contracting respiratory therapist will come in dressed in a Level 4 Bio-Hazard anti-contamination costume and administer Amphoteracin-B through a nebulizer twice or three times a day to prevent Aspergillus infection. A physical therapist will bother you at periodic times about pedaling on a sit-down bicycle and walking with a medium-sized stand-up walker on wheels. An occupational therapist will visit you with instructions on how to wash your butt while sitting down. A psychologist will wake you up one morning and tell you she (or he) thinks you are a prime candidate for post-transplant depression. This will haunt you until you realize that you are so happy to be alive that depression is the last thing on your mind. Much blood will be taken from your veins. Days will pass.

8. You might have a wild dream one night that will wake you up with a start in a cold sweat, wondering if you should try to go back to sleep, for fear that it will pick up where it left off. You will discuss it the next day with your favorite transplant coordinator, and ask if any of the details match what she (or he) may know about the donor's life. You will learn nothing. It will not occur again, but you will never forget it.

9. Your transplant surgeons will stroll in from time to time, and gradually you will realize that you are passing into another phase of recovery and that, sadly, you won't be seeing much more of them. You will continue to see your Pulmonologist. There will be nurses that you will grow to love, and others you will grow to hate. You will forget all of their names--except two or three--minutes after they leave your room. You will beg for better-flavored drinks and snacks. Some will bring them, others will forget.

10. After about two weeks of physical therapy and general care, your doctors and your insurance company will conspire to make you leave the hospital and enter an inpatient sub-acute rehab center, unless you are of such great health that they feel they can take a chance on sending you home (providing that your home is close to the center). Otherwise, you will have to get an apartment near the center until they are satisfied that you are in a position to be trusted walking, washing, eating, taking your pills, administering IV infusions, and all the rest that is involved in the recovery process. At this point you are two thirds of the way there.

11. From this point on, you will administer your own IV Gancyclovir infusions, maintain your Hickman catheter, flush your lines, eat as much calorie-laden food as possible, and attend regular clinic meetings where you will be given Spirometry exams and have chest X-rays taken. This will continue for what will seem like a long, long time. Also, you will be enrolled in an out-patient physical therapy program where you will actually start to gain back some of the strength you had before all of this started.

12. Eventually you will be able to sit in a chair without a foam pad, sleep without getting up every hour-and-a-half to urinate and then suddenly one day, you will realize that you can almost see ahead to a time when life will be sort of normal. And during all of this, you will be breathing room air.

I think I can handle that. That doesn't sound so frightening to me. Maybe because I am reading it from a living BREATHING person?

I need to make a note to myself to check the University of Washington's Transplant success rate. And the surgeons. Many sites including the persons above suggest a rating of 60 or better. That sounds reasonable.

He goes on to talk about many subjects and answers many questions (which I really appreciate). It is one thing to read these things from a website the hospitals put out.... It is an entirely different thing to read a patients own words from experience.

One of my fears is the immunosuppresant drugs that one takes for their lifetime after transplant. I won't bore you with all the articles, only to say... they are terrible. The prices are outrageous and I have read a lot about insurance companies not paying for them. They are taken every day, 3 times a day for your lifetime. Those along with steroids can cause so many problems. They are needed to keep an organ from rejection but cause kidney and liver failure as well as heart issues due to hypertension. They have also been known to cause (yes cause!!!) cancer. And, that is fairly common.
It's a roll of the dice how well someone will handle the post transplant meds.
Now to the cost.... He has made a list of sources to go for $$, So, I am copying that here. I will need it later.

Towards the end of his administration, President Bill Clinton--the best President a patient has ever had--signed into law a modification of Medicare that provides for unlimited free transplant meds, namely Neoral and CellCept. The limit under Medicare was initially 36 months post-op, which was then extended to 45 months, and then extended by this last law indefinitely.

The rest of the medications you will need may be covered for a period of time until your annual cap kicks in. For me, that usually happens about ten minutes after the first 90-day shipment, after which I'm on my own, shopping at my favorite transplant-friendly mail-order supplier (formerly Stadtlander's, and now Good Life Resources).

Expenses such as these can be deducted from your taxes, however, to whatever extent the law allows.

There is, however, another approach if you are extremely strapped for cash. Nearly every pharmaceutical company has a drug assistance program for financially needy patients that cannot pay for their meds. The programs vary from company to company. I recently found in the Gift For Life newsletter (www.donors1.org) a list of contacts at various drug companies with such programs. Here are the ones that are, I think, most appropriate for lung transplant patients:

Imuran (Glaxo-Wellcome) 800-722-9294 800-423-6869

CellCept/Cytovene (Hoffman-LaRoche) 800-285-4484 800-526-6367

Mycelex (Bayer Corp) 800-998-9180

Cyclosporin/Sandimmune/Neoral (Novartis) 800-722-9294 800-455-6655

Prednisone (Upjohn) 800-242-7014

Lasix (Hoechst-Marion-Roussel, Inc) 800-362-7466 800-522-3656

There are many others, but these are most of the ones associated with lung transplant meds, from what I can see. Check out the Gift For Life website (see above) and you may find more help there.

Obviously, this is the greatest challenge facing the post-transplant patient. However, with care and perseverance, it can be managed. It is never easy, but it is doable. As far as I'm concerned, it's nothing to get upset about (right).


So there is my homework for today. I still have my personal "paper work" to take care of. But, I have made progress. Bill, Brittney and I talked about my advanced directive and agreed how it should be handled. Now to just write it out and have someone notarize it.

Questions I have for those who have been there.

First things first... Today's food



Today I drank water with cucumber, lots of it. I took 3 fiber pills this morning with the rest of my meds. At lunch I had 2 string cheeses made from skim milk. That seemed to do me until dinner tonight.
I made an omlete out of egg whites in the carton 1/2 cup. Peppers and onions and the rest of the ground turkey w/ taco seasoning we had the other night, and then 1 ounce of grated pepper jack cheese. Then I had 1 whole wheat english muffin sprayed with "you can't believe it's not butter spray."
I actually was stuffed and it was very good. The whole wheat muffins will take some getting used to, but I thought maybe I could make mini pizza's and use those as the crust. We'll see.

I found a couple facebook sites for transplant information and people who have had transplants. I traded phone 3's with a couple woman. One who has had her left lung transplanted, and one that is on the waiting list for a double lung transplant.

I need to write a list of questions. I have so many I don't know where to start?

When I was first diagnosed with Emphsyema I wanted to know all about it. At first it seemed I was most focused with what stage I was in. Then what the life expectancy is.

This seems to be the same type of thing. Not stages... but definately life expectancy. All that I have read concerns me. I know there must be survivors, but hearing the #'s scares the (excuse me) shit out of me.

I want to talk to the woman who had the lung transplant about recovery and what to expect? What can I do to help and what shouldn't I do? Also, about the immunosuppresive drugs that I will need to take the rest of my life? How she deals with the side effects? Do they damage the liver and kidneys?

I want to ask the woman who was already accepted into the program and waiting about the beginning of the process and what to expect. Was the transplant center near her? Or did she have to relocate?
What are the precautions she is living with while waiting for lungs? I am possitive about infections of any kind.. viral or bacterial, no flu or colds. What is she doing to pass the time?
I want to know from both of them how long they have waited?

It's just all so unknown and I think I would feel better if I knew something. Of course, then I go back to the point of ... me jumping the gun and waiting for my file to get to the center and them to send the paperwork to me.

I guess that would be the best thing and in the meantime I could work on my will and the advanced directive.

That is something to sleep on.

Spinning around and round

I didn't mention but on August 31st I re-joined Weight Watchers, Britt joined with me. I am taking it a step further than Weight Watchers recommends... so this is my disclaimer!! LOL

Britt suggested (being a young person who excercises on a daily basis and for the most part watches what she eats) that I take fiber pills. Not because of constipation or a medical reason, but to get that "filled up feeling". She told me which ones she uses. I plan to be on them longer than she so I am starting out at a lower dose than recommended on the bottle. The dose says to take 5 capsules every day. Well, I took 2 this morning, and will take 1 more tonight with dinner. I just want something to help me feel that bulk I have been giving myself all these months. So, I'll let you know if it is helping at all.
I am a little afraid to take ANYTHING that is not perscribed right now. I don't want to ruin any chances I may have or do any harm to myself.
I figure this is a no brain-er... food in... food out.
I am using Weight Watchers as a guide. Their points system helps me keep a low carb, high fiber, low calorie and fat diet. I am veering off the plan by not eating all my "allowable" points for each day. They want you to eat 3 meals a day, and yes... I know that is the ideal healthy thing to do. However, I have never been a eater in the morning or even lunch. Most of my life I have eaten early dinner or at 5 or 6, then snacked right before bed. That is what I am changing... that snacking... and if I snack it is now carrots, or apples, or the nonfat yogurt. That works for me. I drink water all day, but as soon as I have one meal then I want to snack ALL day. And, besides that... I need to lose a great deal of weight as healthily as I can in a short period of time. As soon as my heart medication the pulmonologist perscribed for me starts helping my pulse rate I can start walking again. That will also help with the muscle build up.

So, I am having a perplexing issue. As if my entire life lately isn't perplexing! LoL

I got this message (I won't say who it is from, just in case.. I wouldn't want him or her in trouble)
Now, if I were too need a transplant, (a non emergent one) in which I had time to research let me tell you what I would do. First, I would try any and all options first. Knowing what I do about lung transplants, I have to be honest that of all, they can be the hardest. The most uncomfortable post op, the most difficult, often times prone to infections. AND if at all possible find, and talk to a living lung transplant patient, ask them if they would do it again. It does mean, (among many other things) immunosuppressive medication that you MUST take for the rest of your life--and those medications are not without their own side effects. But, if that what it takes to live--then we do what we have to do.


It just left me afraid of the entire thing. I took his or her advice and am looking for a transplant patient to talk to. Hopefully someone who has already gone through the process can give me insight. The way he talks it would be better not to have it.
I asked my pulmonologist about the LVRS (lung volume reduction surgery) and he said that is something I can talk to them about at the transplant center.

I kinda feel like my pulmonologist is out of answers so it's onto the transplant center. However, I do know that this is effecting my heart and I have no air at all anymore. I now get breathless in the shower, getting dressed, anytime I move pretty much, and even sitting still at time I am taking deep breaths trying to get enough air in. All this and on O2 at 5 liters per minute. So, I am sure my pulmonologist is right. I am looking for reasons not to do this, when I know realistically it's the right thing.

I had Brittney read the email, and asked her what she thought. She said.. "Mom, you know all those things, you just don't want to consider them." What a smart daughter I have!

I tried to talk to Bill today and he just says "yeah, or we'll wait and see". Anything I want to discuss or feel like deserves an answer and he says yeah or we'll see. I told him I talk to total strangers online and have gotten more support and conversation from them. (I in no way think my online friends are "strangers", but you know what I mean) I had a visit the other day from one of Brittney's friends who is like a daughter to me. Her parents live across the street. She told me Bill have been over several times visiting with her dad and just seems to want to "talk". My other neighbor tells me the same thing. I know Bill is on the phone all the time talking to our friends about this... but not to me. I don't know if he tells them he is concerned? But to me he says... you will be fine, don't worry, wait and see, or just nods.

I am so frustrated. There are a lot of decisions I need to make and if there is no feedback I cannot make any. Just one example. Some of the transplant things I have been reading specifically says if you come to our facility with a spouse or family member you will most likely be staying for a long period of time. And, once you get that call you have to leave IMMEDIATELY so, if you have pets there isn't going to be time to look for babysitters for them, so it's best not to bring them.
I told Bill this today, and he says ... "then we may as well get them put down right now!" This is his wonderful way of making sure I know that he thinks I am being unreasonable, so he will make an unreasonable remark back to me... VERY GROWN UP of him! It just infuriates me.

So, this is what I have been dealing with. I have asked him to read or listen while I read that 5 page thing I posted here about transplant from the beginning to the end... he says he doesn't need to know.

Yes... Denial is expected with him as well. But come on! We are grown ups, we used to talk about everything. Lately, if I have a different idea than his... I am looking for a fight. If I disagree with him I am being a bitch. I dunno? I do no... I don't need it. Not now.

I want to be able to sit down and talk to him and I NEED TO SOON!

We have decisions to make. Once they approve me and put me on a list we have to be within an hour of the hospital, bags packed ready to go. It may be 3 days, 3 weeks or 3 years. And, people die everyday while waiting for a lung. So... we need to make long term plans.

And, I may have an eternaty to do all the things we need to do. Maybe he is right?! (god I would hate that!) lol

I know I am putting off writing my advanced directive. And, I know they will insist on one being done prior to surgery. I also have to go through my house room by room and write a Will for myself. That is a priority. I just have to do it. It's one of those things which is easily ignored and put at the bottom of the list.

I gave myself a goal to have either one done by Sunday. My will is going to take more than one day, but just a start needs to be done.

Almost time to start dinner. I think a burrito tonight out of ground turkey w/taco seasoning and sauted onions/peppers. I'll snap a pic.

I forgot to put my memory card back in my camera so no pic of dinner.
I had a very healthy dinner of... sauted onions/peppers (sauted in 3 sprays of "I can't believe it's not butter) 2 tablespoons refried beans, 1/4 cup of browned ground turkey with taco seasoning and green chili's and onions added, some fat free sour cream and fat free cheddar cheese. I also had more of the black bean and corn salad. And, water.

I haven't taken anymore of the fiber, and I actually feel like I don't need those late night snacks. :) Maybe this will help me.