I'm listed....yipee?

Well, I got the call Wednesday that I am in fact a candidate for bilateral lung transplant and that they have accepted me into their program.

I was getting my nails done Wednesday afternoon, and my cell phone rang. Well, as the only person that calls me on my cell is Kelly, and I knew I could call him back, I ignored it. My nails were goopy at that point. So when I went out to my car and listened to my message, the transplant coordinator said, in a grave voice, that he needed to talk to me about what they discussed at the meeting today. He hemmed and stammered a bit and said, please call me and told me what times he'd be in the office. The tone of his voice and that we needed to talk...I thought crap, they aren't going to list me. What do I do then? Everything is getting so hard, breathing is a chore, what if I can never have a transplant? What if they found something with my health that says I can't have one? Panic.

So I went home and called him. He told me I'm listed! I immediately thought, what if they call me right away? I'm not that sick. I don't really need a transplant.

Can you say schizophrenic? Neurotic? Plum loco?

He said he hadn't calculated my score yet, but that when he did he could let me know if it looked immediate or long term for waiting. I am getting to know a man that is listed at USC also, and he has had the social worker calling him to tell him that he has almost been called twice, but the lungs were no good. So he is someone that is ready, and wanting a transplant now. I'm assuming they won't say I'm that ready (health wise) yet. This man has been listed since June and he wants a transplant asap...so I'm sure I have at least 6 months to wait till I start to panic in earnest!

I'm as confused as ever, but closer to knowing that it will happen one day. It's the walking down the hallway and being out of breath that has me feeling that way. I did one of the 5 planters in the front yard Thursday. Sitting on the bricks pulling weeds is ok, even though my legs are killing me now. But each time I had to get up to empty my box of weeds, I had to rest before I could start again. Bending over to reach the back of the planter makes it very hard to breathe. When I was done I swept up my mess and I thought that would kill me, but I refuse to not be able to do something. It's just so hard. Then I hosed off the driveway and I had cleaned off the porch the other day...had to get rid of the frozen crunchy plant...and that's it for me! But the front of the house looks nice. Just don't look anywhere else! I need to prune 6 more roses, then the 5 climbing roses, then the rest of the palms and the weeds. I should be done by spring!! The back yard? Well...let's just not go there! Anyway, the point of this rambling story is that I shouldn't have been so out of breath, literally just from standing up. It shouldn't have taken me 3 hours to do one planter, and I didn't even get to the climbing roses. So I am aware of my lungs getting worse. I'm trying my best to stay in some sort of shape, but it's not easy. I feel like I spend all my time cleaning or doing chores, because it takes me so long. I'm the one who wants my house clean or my yard done, so I'm the only one putting pressure on me. Kelly would never get mad at me if I couldn't do stuff. But I like it a certain way. But then I get so sick of working every day, errrrrr.

Next week is going to be a busy one. I have a drug study appt. on Tuesday and I hope to get home in time to go material shopping with my sister. I have the dentist on Wednesday...do you think that will ever be over? Thursday I have a procedure..surgery..what ever you want to call it. I'm having a CT angiogram to see if any of my arteries are enlarged enough to be worried about them. I'm not sure if they'll actually do the embolization at that time if there are problems or if they'll have to get insurance approval and then have me come back. I hope it will be in one fell swoop. The drugs are fun, but the laying flat is sure not, nor is the pain that comes after.

My cousin Merle and I are going to see a movie on Monday, so that will be nice. Michelle will be coming down next weekend, I hope I feel ok. I got most of the house clean yesterday and today so I just have to do the guest room. Cross your fingers nothing is wrong, no embolizations and no pain.

Tonite Kelly and I went to dinner with a friend from his old job and his wife. They are the nicest people. I wish we saw each other more often. They don't live that far, it just seems like stuff always comes up! We ate and talked and talked...they are all smart people so I told them I would just talk in sign language and then I'd be the smart one! ha

So guess that's all. Later I'll tell you about the mean lady at the grocery store, my sign teacher at Chaffey and other fun stuff! Good night!

many topics

So, what a long day. Fun, but long. Yesterday I met Lynn at the quilting convention and went to a lunch and demonstration with her. It was very fun. The teacher was hilarious. Lunch, not so much. But it was a short time and then I left. Today, she picked me up at 11 and we didn't get home till 5 ish. There was a 1 hour showing of quilts, but other than that and a short stop to eat I was on my feet, walking, walking, walking. With 100 pounds of 02 on my back. Well ok, it wasn't 100 pounds but it sure felt like it by the end of the day! There has to be an easier way. Yes there is the kind you pull, but the arthritis in my elbows prevents me from doing that for more than a very short (30 minutes) while. Anyway, I got some very cute material. "Carol, I didn't know you quilted", you say....well heck I don't! But the material was so cute I couldn't resist and my sister swears she is going to get me to make a quilt! We'll see! I was wiped out, but Lynn went back for a quilt class or group, whatever it's called, to do a quilt from 6 PM to 6 AM. Yep, she's gonna be there all night! I gave her a key so she could come sleep here if she can't make it home.

Anyway, after she dropped me off, Kelly and I went to eat and then to sign language class. His is from 6:30 to 7:30. He did great! Now he can understand me when I can't talk ( I lose my voice a lot) but do you know what he told the class, in sign language? The teacher asked how much sign language he knew. He was supposed to say a little, some, a lot.... He said and I quote "crazy woman, her". Meaning that's what he knew.. the words "she's a crazy woman". Hey, that's not nice!!! But the class enjoyed it. Then he went home and my class was from 7:30 to 9. Now I'm home and tired but thought I'd write. What a fun day it was!

Let's see, what other topic...hmmmmm. Oh, transplant eval. As far as I know, I've done all the tests, some twice. But still no answer. The transplant coordinator called while I was gone and told Kelly I have to do something more, not sure what it is, but that it wouldn't slow down the process. I'll find out Monday I guess. On the regular medical front...my primary doc did regular blood work which showed my three month blood sugar level is 6.3 (should be under 7), my cholesterol is 183, my other levels are all good, but I'm anemic. So wanted more testing to see if there was a problem like bleeding and no there's no other problem but I'm low in iron, B-12 and folic acid. Weird. So yup, more supplements. I'm hoping if we get the anemic part fixed I won't be so tired all the time.

Lastly, I'm afraid all my plants are dead. They are crunchy and not happy at all. My few potted plants are ok because I put them in the garage with blankets on (towels on them) but the outdoor stuff...not so good. It will be interesting come spring to see what grows and what doesn't. I'm not supposed to be playing in the dirt (aspergillis from the dirt can get in your lungs...yea yea yea...I've been playing in the dirt for years) but think this year I'll be in the dirt a lot replacing plants. Hmmm, my chance to relandscape, what do I want?

So I think that's all. I'm off to do med's and see how long my eyes will stay open. Oh, in case anyone wondered, Kelly is really loving his new job. People, good, drive, good, work load, good, fun, yep. Whewwww. I'm so happy for him. Ok, really that's all now. Bye

It's too darn cold!

What the heck is going on? Is California having a REAL winter? Good thing I've got really warm coats. The other morning, Kelly woke me up to look outside and said "look, everything is white". Well my brain was still asleep and I was thinking "yea, so?" Then he had me look out the sliding glass door and I saw a two or three inch layer of white stuff on the brick planters. Oh, I get it. I thought it was snow but he said it was hail. And then I noticed all the white yards and roofs he was trying to show me before. I was afraid for him to drive to work if the roads were frozen. It started raining and the "white stuff" didn't go away!

Well, he waited a while to leave for work and I went back to bed. When I got up it was sunny, not a cloud to be seen, and no white stuff left. I'd have never known if he hadn't shown me! I do have a picture and will post it if I ever learn how!

I've received a picture from my friend who was in Albuquerque for Christmas, it snowed there about a foot. She grew up there and it never snowed there that much. I received a picture from my Aunt in Oregon. She lives on the coast...another picture, another snow, another snow man!
It doesn't usually snow that much there, if at all. I'm not sure.

What the heck? Freezing in Dallas and Austin? I've had to put little blankets on my plants so they don't die. The plant in front is all crispy and I don't think it'll make it back. I just pruned all my roses a few days before this weather. I hope they live. I don't want to replace 15 rose bushes!

Other than that, I went to my first night of sign language class at Chaffey. Only sign I is open, but I think it will be too easy for me. I recognized the teachers name so stopped to ask her if she was related to...She said yes but we got divorced 6 years ago. Oops, next subject!
Before class it was very cold (class starts at 8PM) and all the stupid teenagers had on windbreakers or those half sweater that they think are so cute. Some even had on flip flops. They were all shivering and blowing their noses....heee heee. I may have looked dorky in my mountain man coat, but I was warm as toast! The class before us didn't get out and didn't get out. Finally I went in and said we were waiting, so the other class was let out. You'd think someone would have thanked me, but NOOOOO. They were all afraid to even look at me with my 02 on. It was sounding really loud out there in the quiet cold air. No one even sat by me when we got in. But if I stay in this class, they'll want to sit by me soon enough when they find out that I already know most all from this class! I'm going to try to get into Sign II at the Norco campus of Riverside Comm. College. Then maybe I can go on to III. Novel idea...how many schools can you take I and II at?

So that's it for me. I'm having lunch at the quilt show tomorrow and Friday with my sister. She makes the coolest quilts. Me, I do real good at snuggling in them! All summer I complain the quilt she made for our bed is too hot, too heavy. Well not now!! And the cats like it too.
So, off to make Kelly's lunch, do meds and treatments and try to get up early tomorrow. Yick. I hate early!!!
Good night

A thought provoking day

This may be a bit rambly, long winded, confusing...but that's how I think! So hang in there readers!

Yesterday, Sunday, was a very odd day. A very sad day. My uncle has been very sick for a long time. He was in a nursing home. He started out in his own apartment, where they do your sheets and towels, cook for you and serve in a main dining room...that kind of thing. But not too long after being there, he began to have problems. Actually now that I think about it, the real problems seem to have started after a dental treatment in which the dentist gave him the wrong antibiotics. Anyway, he deteriorated to the point of being in and out of awareness, not eating, not talking, on oxygen, not getting out of bed at all, losing weight...
His one daughter, my cousin, lives here, near him. She takes care of him, sees him almost daily and puts up with all his stuff. The other daughter lives in Oregon and sees him when she is here.
Well, my uncle was doing very poorly and they didn't know how long he had. It could be days, or weeks, but nothing in a way that was good. He had no life.

So the cousin came down from Oregon. She and her sister were with their dad, just waiting, talking to him off and on. My other cousin and I went to see them on Sunday afternoon so that we could see the cousin from Oregon. I was in shock at how differently my uncle looked. It's been a while, 6 months or longer, since I'd seen him. If I had been looking for him I would have passed right by his room knowing that man wasn't him. It couldn't be.
Well, we visited for a while, then decided to go have a quick lunch. The four of us were only gone 30, 40 minutes and my cousin gets a call from her son, telling her the home just called and her dad had passed away.

We knew it could come at any time, but it was still a shock. I went thru a myriad of feelings...from we should have never gone to lunch, (guilt) to maybe that's why we were put in this situation to keep the cousins from having to watch their father die (mabye useful) to I didn't even say good bye (guilt again) to even feeling thankful that he no longer looked like my dad so that it wasn't so hard for me (feeling very selfish). I didn't know what to do, there was no point to rush, but wanting to get them back. Wanting to help in some way, but there was no way to help. Wanting to comfort, knowing that the hard stuff is still coming.

As I was driving home I got to thinking about all the family I have lost. My dad came from a family with 7 girls and 3 boys. My dad was the youngest. Each of them were married. I knew and loved all those people. With my uncle gone, there is now only one aunt left. I was thinking about all the grave stones with all the different names, about how I used to visit those people and now they are gone. Wondering how strange it must feel to be the one sister left. Her whole family, just gone. Then I got to thinking about my grandparents that died, my parents, my brother and sister even though I never met them. And the countless amounts of friends with CF. So many people gone.

Today I just read an email from yet another cousin of mine :) and her mother in law passed today. I never knew her but it just seemed to make me sink a little lower.

I'm not depressed, but just a lingering saddness. Again with the feelings of needing to say kind things to people, of wanting people to understand that life is too darn short and you need to take care of things. Today I went to lunch with a friend on the spur of the moment. I didn't want to go because I had so much to do today. But I went and had a nice time. The house, the yard, all that will be here tomorrow. I don't intend to not ever do anything agian using life is too short as an excuse to excape my responsibilities, but I need to put it in perspective and get my priorities straight. I try to do a good job of that, but I want to do better.

I also want to learn to not feel so guilty. It wasn't my fault we went to lunch at that time, it wasn't my fault my uncle died while we were gone. And as for the past, it wasn't my fault that my dad died. I couldn't have stopped it. I still FEEL like maybe I could, but my brain is saying I couldn't and let it go. So I'm going to try. I will try to stop feeling guilty all the time for so many things, like not being the kind of wife I want to be because I'm so tired all the time. I can't help it. I need to stop beating myself up for being afraid.

I could go on and on. My brain is still running in circles from yesterday.
I hope my uncle is in a better place and that he is at peace now. He was not happy for so long.
Maybe he and my dad are raising some kind of hell, riding motorcycles and visiting with all the other family that is up there.

It is just odd, to be so close to death, but knowing that it really doesn't effect me ( I didn't know my uncle that well, he lived in Arkansas all his life). It is odd how life just goes on. It's like it should stop for just a minute to acknowledge what has happened. It is so odd to wonder what's after, if anything. It's sad to really think about all the people you've lost and even how you lost them. It's sad to think of when it will happen to you, will anyone remember you, think about you, or do you just cease to exist in the minds of those who come after you. I have no children, so I expect I will quickly fade away. So sad.

Happy New Year

I hope everyone had a wonderful New Year celebration, whether that meant staying home, going out or going to sleep! I hope for everyone a New Year filled with love, peace, hope, health, family (that includes pets!) and friends.

Two people in my world (CF) died this season. One wonderful man on Christmas Eve, one young woman on the 27th. Both were wonderful people and will be so very missed. Know that life is short, too short to hold on to grudges, annoyances or petty differences. Let your loved ones know how you feel. Don't assume they know or that they don't need to hear it. It can make all the difference if you can just say how you feel.

Happy New Year
All my love to my family and friends that mean so much to me
Carol