I have to make a minor correction to my post titled, Wicked. In it I wrote Kelly was snoring that puffly snore. I was mistaken, he was snoring a manly man snore. He is no Puffly guy.
I stand corrected:)
Wednesday, February 28, 2007
Tuesday, February 27, 2007
Wicked
The title sounds like I'm going to talk about something mean and wicked...but I'm not!
The play was wonderful!! It was almost as good as in New York. I have to say almost because it was, well, in New York. The whole night went well. We got there really early so we got to park right across a small street and because of my handicap placard we got to park right up front. Then we got inside and yikes, no elevators and my tickets were for up in the top. But Lynn carried my oxygen and we just took a little at a time. The seats were great, the audience quiet (I'm used to movies where no one can shut up) and the show was wonderful! I forgot how funny Galinda was. I think the set was identical, if not close to what I saw before. We laughed, got goosebumps, a little teary eyed and a big smile at the end.
The usher lady was very helpful in getting us in before everyone else and letting me go first in the bathroom line. I had to laugh at that, my lungs are broke, not my bladder! But Lynn said there were benefits to going out with me, parking up front, first in bathroom lines...see she rolled my oxygen so that she had to go in first with me too, heee heeee, sneaky. We were trying to figure out how we could get to be first in the snack line, but that didn't happen. Darn. I was hungry!
It was funny on the way home that Lynn said Galinda reminded her of me in high school. I was all "WHAT?" I was smart and was not popular and was nothing like Galinda. We were laughing. Funny how you think you are and how others see you.
On the way home we were starving, but there was no where to go. My mission is to find a Denny's by Lynn's house, or what?, a Coco's, are they open late? So I had to come home and scrounge the fridge and there was nothing there either.
The next day Kelly and I just hung out. We were both tired, it had been a really long week. So we took a nap and I was thinking it was total bliss even if just for a few minutes. Kelly and I were resting, snuggled together and he fell asleep with that little puffeling snore, Carrie was asleep on my pillow with her head resting on my head. The blankets were warm, nothing really needed to be done, ahhhhhh.
So that was my weekend. A perfect weekend with the people I love. (Yes Carrie Carrie is a people, just a furry four legged one)
The play was wonderful!! It was almost as good as in New York. I have to say almost because it was, well, in New York. The whole night went well. We got there really early so we got to park right across a small street and because of my handicap placard we got to park right up front. Then we got inside and yikes, no elevators and my tickets were for up in the top. But Lynn carried my oxygen and we just took a little at a time. The seats were great, the audience quiet (I'm used to movies where no one can shut up) and the show was wonderful! I forgot how funny Galinda was. I think the set was identical, if not close to what I saw before. We laughed, got goosebumps, a little teary eyed and a big smile at the end.
The usher lady was very helpful in getting us in before everyone else and letting me go first in the bathroom line. I had to laugh at that, my lungs are broke, not my bladder! But Lynn said there were benefits to going out with me, parking up front, first in bathroom lines...see she rolled my oxygen so that she had to go in first with me too, heee heeee, sneaky. We were trying to figure out how we could get to be first in the snack line, but that didn't happen. Darn. I was hungry!
It was funny on the way home that Lynn said Galinda reminded her of me in high school. I was all "WHAT?" I was smart and was not popular and was nothing like Galinda. We were laughing. Funny how you think you are and how others see you.
On the way home we were starving, but there was no where to go. My mission is to find a Denny's by Lynn's house, or what?, a Coco's, are they open late? So I had to come home and scrounge the fridge and there was nothing there either.
The next day Kelly and I just hung out. We were both tired, it had been a really long week. So we took a nap and I was thinking it was total bliss even if just for a few minutes. Kelly and I were resting, snuggled together and he fell asleep with that little puffeling snore, Carrie was asleep on my pillow with her head resting on my head. The blankets were warm, nothing really needed to be done, ahhhhhh.
So that was my weekend. A perfect weekend with the people I love. (Yes Carrie Carrie is a people, just a furry four legged one)
Friday, February 23, 2007
Bog, Blog Blog
Well, I figure the only way to get the picture of the blood to the bottom of the page is to put other blog posts and move it down. So here I am.
Not much new, I'm still in pain and now I'm having chills and last night, night sweats. Great.
But I refuse to get sick.
Tomorrow night I'm taking my sister to see "Wicked" at the Pantages Theater. I will make it. I will not cough all night. I will not bleed. I will not sweat. Got it?
Anything else? Hmmmm. Was supposed to take in my taxes today but I feel like crap and haven't got them put together so I had to call and cancel. That's the second time. Once the Friday I went to the hospital and now today. I've got to get my act together!
I did go and have lunch with my friend Darcie yesterday. We went to Chili's and had a nice time.
We can talk like there is no tomorrow. What do we talk about? Who the heck knows?
Mmmmm, the weather is cold? I like the rain.
My house is a mess.
I need to gain weight.
I need to get stuff ready for transplant.
I'm tired.
Ok, one blog down, maybe the blood picture will move down a bit!
Bye
Not much new, I'm still in pain and now I'm having chills and last night, night sweats. Great.
But I refuse to get sick.
Tomorrow night I'm taking my sister to see "Wicked" at the Pantages Theater. I will make it. I will not cough all night. I will not bleed. I will not sweat. Got it?
Anything else? Hmmmm. Was supposed to take in my taxes today but I feel like crap and haven't got them put together so I had to call and cancel. That's the second time. Once the Friday I went to the hospital and now today. I've got to get my act together!
I did go and have lunch with my friend Darcie yesterday. We went to Chili's and had a nice time.
We can talk like there is no tomorrow. What do we talk about? Who the heck knows?
Mmmmm, the weather is cold? I like the rain.
My house is a mess.
I need to gain weight.
I need to get stuff ready for transplant.
I'm tired.
Ok, one blog down, maybe the blood picture will move down a bit!
Bye
Tuesday, February 20, 2007
blood and hubbies
So I see that my wonderful hubby, who never, ever, ever has time to put a picture on my blog, because he doesn't know how, really he doesn't, found a way to put a picture of blood on my blog. Such a helpful guy he is. That is a pic of the first bleed of the day Friday. It is the smallest of the bunch. Try picturing this being thick and texured, not like water. It was almost like jello as it starts to thicken. And the sink is clean, that's just a shadow you see! Anyway, I was trying to aim so that the doc's could see that it was bigger than the drain hole, since that's pretty universal in size and sorta taller, but it didn't show that it was thick.
Anyway, just wanted to explain what the heck that was.
Thank you so much honey. Now do you think you can remember how you did this and put something pretty on here?
Anyway, just wanted to explain what the heck that was.
Thank you so much honey. Now do you think you can remember how you did this and put something pretty on here?
Hi everyone,
Just thought I'd write an update. I just got out of the hospital yesterday. I had been bleeding again, a lot. Not a lot in terms of blood, but a lot of times a day. For a week, 2, 3 or 4 times a day. I really wanted to have surgery again, but my doc's said no. They just put me on IV's which I knew wouldn't work. Then I had a week of no bleeding (nope not due to IV"s because I got mad and didn't start them till 5 days after I was supposed to) and then on the day I was to go to the doc's, I started out my morning by bleeding more than the other week. I bled again at the doctor's office, and they still didn't want to do anything. I was so frustrated. I knew it would just get worse. Well, I had 3 more that day for a total of 5.
By Friday, I had a large one that seemed to just go on forever. I actually got a stool so I could sit down with my head over the sink. It finally stopped, but 3 hours later it started again. My husband just walked in the door as I was getting the stool to sit. So I called the doc and this time talked to a different one. Told him I just couldn't do this, that the bleeds got much worse that day and I even took pictures so they wouldn't think I was faking about the amount just so I could have surgery. He called radiology and had me come in, to have surgery the next day. As I was trying to get ready and pack a bag, I had a large, long bleed. My husband was so afraid to drive me to the hospital, it's about an hour away. We were trying to figure out each hospital en route in case it got to be too bad. But I made it. Got in a room, long story, but moved to another room and promptly started bleeding. A LOT. The nurses were freaking out. My husband was out getting my stuff from the car so I was alone. I actually clogged up the sink because clots kept coming out and had to move to the trash. It was a long hard bleed. Finally it stopped. It was so weird then because they were trying to get me settled, trying to clean up the mess, and one of the nurses was putting another extension on the 02 tubing so I'd have more room to move. When she pulled it apart and the 02 stopped, I immediately started bleeding with only about 5 minutes rest from the last time. It was again bad and scary.
Well, finally it stopped. I was too afraid to go to sleep, but just read and stared at the wall. About 1 am, it started again and I had two more. Finally I made it to the morning and had surgery about 9am. The surgery went well in and of itself. But they had to block some significant arteries or veins and I'm in a lot of pain. My arm hurt so bad as one of the arteries also went to my arm. Plus as soon as I was able to sit up, I started throwing up. Miserable. That went on for 2 1/2 days. We tried all kinds of pain med's but nothing much helped . ( no not for the throwing up silly, I was on something for that too, can't remember the name, but each time they put it in my (IV, I threw up) I'm just doing a low dose fentanyl patch and Motrin for the inflammation. The surgeon said that I would be in pain for a while, that they had to go deep and do a lot of repairs. He said each time I have to do this it is going to get worse and worse, as they have to go deeper into my lungs and the veins are being recruited from all over so that the other body parts will hurt too, like my arm. They saw veins growing from my diaphragm, something they've never seen before. And there are a lot in my shoulder area, upper chest, that they couldn't get too but they will in turn be a problem.
So, I'm home, feeling sore, but much better than bleeding. I'm hoping I will have my transplant before I need to do this again. So much bad news about my health in such a short time is so hard to hear. But it looks like transplant is the only way. Now if I can only make it. Deep sigh.
So that's it for me. I have to go figure out what to have for dinner. I'm not sure which is worse, having to cook and clean or having to sit at a restaurant. Hmmmm, sleep, I'm sure that will help. Think I"ll do that!
Bye
Just thought I'd write an update. I just got out of the hospital yesterday. I had been bleeding again, a lot. Not a lot in terms of blood, but a lot of times a day. For a week, 2, 3 or 4 times a day. I really wanted to have surgery again, but my doc's said no. They just put me on IV's which I knew wouldn't work. Then I had a week of no bleeding (nope not due to IV"s because I got mad and didn't start them till 5 days after I was supposed to) and then on the day I was to go to the doc's, I started out my morning by bleeding more than the other week. I bled again at the doctor's office, and they still didn't want to do anything. I was so frustrated. I knew it would just get worse. Well, I had 3 more that day for a total of 5.
By Friday, I had a large one that seemed to just go on forever. I actually got a stool so I could sit down with my head over the sink. It finally stopped, but 3 hours later it started again. My husband just walked in the door as I was getting the stool to sit. So I called the doc and this time talked to a different one. Told him I just couldn't do this, that the bleeds got much worse that day and I even took pictures so they wouldn't think I was faking about the amount just so I could have surgery. He called radiology and had me come in, to have surgery the next day. As I was trying to get ready and pack a bag, I had a large, long bleed. My husband was so afraid to drive me to the hospital, it's about an hour away. We were trying to figure out each hospital en route in case it got to be too bad. But I made it. Got in a room, long story, but moved to another room and promptly started bleeding. A LOT. The nurses were freaking out. My husband was out getting my stuff from the car so I was alone. I actually clogged up the sink because clots kept coming out and had to move to the trash. It was a long hard bleed. Finally it stopped. It was so weird then because they were trying to get me settled, trying to clean up the mess, and one of the nurses was putting another extension on the 02 tubing so I'd have more room to move. When she pulled it apart and the 02 stopped, I immediately started bleeding with only about 5 minutes rest from the last time. It was again bad and scary.
Well, finally it stopped. I was too afraid to go to sleep, but just read and stared at the wall. About 1 am, it started again and I had two more. Finally I made it to the morning and had surgery about 9am. The surgery went well in and of itself. But they had to block some significant arteries or veins and I'm in a lot of pain. My arm hurt so bad as one of the arteries also went to my arm. Plus as soon as I was able to sit up, I started throwing up. Miserable. That went on for 2 1/2 days. We tried all kinds of pain med's but nothing much helped . ( no not for the throwing up silly, I was on something for that too, can't remember the name, but each time they put it in my (IV, I threw up) I'm just doing a low dose fentanyl patch and Motrin for the inflammation. The surgeon said that I would be in pain for a while, that they had to go deep and do a lot of repairs. He said each time I have to do this it is going to get worse and worse, as they have to go deeper into my lungs and the veins are being recruited from all over so that the other body parts will hurt too, like my arm. They saw veins growing from my diaphragm, something they've never seen before. And there are a lot in my shoulder area, upper chest, that they couldn't get too but they will in turn be a problem.
So, I'm home, feeling sore, but much better than bleeding. I'm hoping I will have my transplant before I need to do this again. So much bad news about my health in such a short time is so hard to hear. But it looks like transplant is the only way. Now if I can only make it. Deep sigh.
So that's it for me. I have to go figure out what to have for dinner. I'm not sure which is worse, having to cook and clean or having to sit at a restaurant. Hmmmm, sleep, I'm sure that will help. Think I"ll do that!
Bye
Monday, February 19, 2007
Coming home today?
Carol was admitted to the hospital on Friday night. The frequency and volume of the bleeding kept increasing. Surgery was Saturday morning. After surgery, she was in a lot of pain. She has been throwing up anything she eats since the surgery. I'm taking the day off and doing things around the house and then go to the hospital. I just talked to her and she said she thinks she will come home today....
Please, no visitors other than family or very very close friends. Call me before you visit to make sure she is up to it.
Kel
Please, no visitors other than family or very very close friends. Call me before you visit to make sure she is up to it.
Kel
Friday, February 16, 2007
what to call this day
So another day that went awry ending tonite with me looking on my blog for comments and finding none new. That made me sad. No that's not a plea for comments! It just makes me smile when people let me know they've been here. I've had another day of brain numbing words coming from people that have changed their tunes and I don't understand why, plus my own physical problems set me up for depression once again. I must be related to my dad.
It started this morning at 6:30 am. Kelly had just finished doing my IV's and said good bye before leaving for work. Once awake I always realize I have to run down the hall, wonder why that is, you can sleep thru it but once awake there is no way to go back to sleep without answering the call. Anyway, I get back in bed and immediately start bleeding. Not huge amounts, but very annoying because I'm afraid to lay back down and make it worse. So I try to sit up for a while and then finally go to sleep.
I had to get up early anyway at 8 to get ready for a doctors appointment. So off I go to see the doc's, crossing my fingers I get one I like. Traffic was terrible, it was stopped from the minute I got on the 57 to almost Brea, then a bit of free flow, then stopping for the next umpteen miles due to the left overs from a 5 car pile up. But I made it only 5 minutes late and no more got settled in the waiting room than I start bleeding again. I run into the bathroom they have in the waiting room (usually avoid that room like the plague) and proceed to mess up their sink, get blood on my jacket and try to figure out what to do. Finally I go out and ask the receptionist for help. She says come on in...well, it's kinda hard to pick up all my stuff and try to hold something to my mouth so I don't bleed all over your carpet. So she helps me and puts me in a room and shuts the door. Ok. Wait, wait. Well the bleeding stops except for the oozing and they bring in 02. Finally the doc comes in and I'm so happy, it's the aggressive one. She takes my chart to catch up and then comes back. I tell her I want surgery. Long story short, she said no. She said I have to balance this all....having surgery too often isn't good, it is risky and hard on me. She said if I keep bleeding for weeks, yes weeks, then they'll see. She said to rest and stay quiet at home. I got mad and told her I wouldn't live like that. It went on. Out of antibiotics, go to ICU to be desensitized if these I'm on now don't work, rest, but do normal activity, exercise, but don't work out... Every thing was so contradictory and confusing. It was hard for me to understand her today. She has a heavy accent but usually I don't have a problem. I think I was just so stunned and mad I didn't listen well. Then she really hurt me. She told me to get ready for transplant. That it would come sooner than I want it to. That I need to prepare myself.... I don't even remember all that she said. This is the doctor that has always told me if we can control the bleeding, I didn't need a transplant yet. Why the big change? Is she giving up on me too? It sure feels like it. Why?
We talked about my CT angio. She actually showed it to me. It was cool to see, but hard to understand what I was seeing. She did show me the "black holes" or hollows. The look like black holes, that's why I call them that. There are several. I also saw where things that should have a very thin lining is very thickened (like the stems on a bunch of grapes being overly fat) and the areas of total white scar tissue. There is little that looked good I think. I wonder if that is what has made her change her mind about me. I wish I'd never had that CT scan. They say my veins in the scan looked fine, I don't need surgery. They say my lungs look bad, I need a transplant. If I had never had that scan, they would be helping me for the bleeds and helping me think there is hope for much more time before a transplant. Right now I feel like I'm doomed to this all. And while I am waiting, I feel like that balancing act she is talking about is impossible. Don't have surgery, die from bleeding. Have surgery, die from surgery. Hmmmm. Fun toss up. I never felt that way about surgery until my friend died from the same procedure. But this bleeding is making my life impossible.
So, whatever. I try not to cry at the office, thinking just get to my car. I drive home and decide to stop for lunch. Another thing she got really mad at me about, my weight. So I try to put my new 02 bottle together and I can't make it work. No matter how tight I turn it, it leaks. I put it on so tight I can't even get it off, but it leaks. So I throw it on the floor, and just let it leak. I can do fast food without 02, I always do, but am worried because of the bleeding. So while sitting in my car, literally taking the keys out of the ignition, of course I start bleeding. I use up all my tissues and have to throw my water out of my cup so I can spit into that. How disgusting. I wait and wait. Finally I'm back to ooz but decide to go home instead of trying to eat. I'll just cry.
So home it is. I call Kelly and talk to him a little (at his insistence, I didn't want to talk while he was at work. I just wanted to know what time he got off today) and he came home early to help me. Help meaning just sit by me, listen to me vent, ask what ever he wanted to know that of course I had no answers for and then we took a nap. I would be such a basket case without him. But I don't want to mess up his new job too. When we were trying to nap, of course I had another bleed. And just a while ago, yet another. That makes 5 today. I'm supposed to do that for how long before they think it is enough? Shouldn't I decide whether or not I want to risk surgery? If I keep bleeding like this, there is no way I can go to school or shopping by myself...
I truly can't do this. Why have they given up on me?
As I was leaving the doctors, she is all smiles and tells me I'm one of their special patients and if she can do anything for me... I just shook my head.
I will keep trying to go on. I don't mean that in any kind of a suicide way, so no one panic! But I mean doing the things I need to do, and want to do. I'll try to figure out how to handle bleeding in public without panicking me or them. Know what's sad? I hadn't had a bleed in a week. Then I went to cousin lunch on Wednesday and school that night. Then today, bam. Is something as simple as sitting and talking, walking to class and sitting, that bad for me? Or is it just a coincidence? Who knows.
Oh, on an earlier post Carrie said I had been slacking and she wanted more posting, to make it up if I had to! Oh how I wish I was making this up. Sorry Carrie, no rose bush attacking me stories for a while, but maybe I'll check out the kitties and see what they are up to! Thanks so much for the Christmas pictures, that'll help my little book out a lot!
It started this morning at 6:30 am. Kelly had just finished doing my IV's and said good bye before leaving for work. Once awake I always realize I have to run down the hall, wonder why that is, you can sleep thru it but once awake there is no way to go back to sleep without answering the call. Anyway, I get back in bed and immediately start bleeding. Not huge amounts, but very annoying because I'm afraid to lay back down and make it worse. So I try to sit up for a while and then finally go to sleep.
I had to get up early anyway at 8 to get ready for a doctors appointment. So off I go to see the doc's, crossing my fingers I get one I like. Traffic was terrible, it was stopped from the minute I got on the 57 to almost Brea, then a bit of free flow, then stopping for the next umpteen miles due to the left overs from a 5 car pile up. But I made it only 5 minutes late and no more got settled in the waiting room than I start bleeding again. I run into the bathroom they have in the waiting room (usually avoid that room like the plague) and proceed to mess up their sink, get blood on my jacket and try to figure out what to do. Finally I go out and ask the receptionist for help. She says come on in...well, it's kinda hard to pick up all my stuff and try to hold something to my mouth so I don't bleed all over your carpet. So she helps me and puts me in a room and shuts the door. Ok. Wait, wait. Well the bleeding stops except for the oozing and they bring in 02. Finally the doc comes in and I'm so happy, it's the aggressive one. She takes my chart to catch up and then comes back. I tell her I want surgery. Long story short, she said no. She said I have to balance this all....having surgery too often isn't good, it is risky and hard on me. She said if I keep bleeding for weeks, yes weeks, then they'll see. She said to rest and stay quiet at home. I got mad and told her I wouldn't live like that. It went on. Out of antibiotics, go to ICU to be desensitized if these I'm on now don't work, rest, but do normal activity, exercise, but don't work out... Every thing was so contradictory and confusing. It was hard for me to understand her today. She has a heavy accent but usually I don't have a problem. I think I was just so stunned and mad I didn't listen well. Then she really hurt me. She told me to get ready for transplant. That it would come sooner than I want it to. That I need to prepare myself.... I don't even remember all that she said. This is the doctor that has always told me if we can control the bleeding, I didn't need a transplant yet. Why the big change? Is she giving up on me too? It sure feels like it. Why?
We talked about my CT angio. She actually showed it to me. It was cool to see, but hard to understand what I was seeing. She did show me the "black holes" or hollows. The look like black holes, that's why I call them that. There are several. I also saw where things that should have a very thin lining is very thickened (like the stems on a bunch of grapes being overly fat) and the areas of total white scar tissue. There is little that looked good I think. I wonder if that is what has made her change her mind about me. I wish I'd never had that CT scan. They say my veins in the scan looked fine, I don't need surgery. They say my lungs look bad, I need a transplant. If I had never had that scan, they would be helping me for the bleeds and helping me think there is hope for much more time before a transplant. Right now I feel like I'm doomed to this all. And while I am waiting, I feel like that balancing act she is talking about is impossible. Don't have surgery, die from bleeding. Have surgery, die from surgery. Hmmmm. Fun toss up. I never felt that way about surgery until my friend died from the same procedure. But this bleeding is making my life impossible.
So, whatever. I try not to cry at the office, thinking just get to my car. I drive home and decide to stop for lunch. Another thing she got really mad at me about, my weight. So I try to put my new 02 bottle together and I can't make it work. No matter how tight I turn it, it leaks. I put it on so tight I can't even get it off, but it leaks. So I throw it on the floor, and just let it leak. I can do fast food without 02, I always do, but am worried because of the bleeding. So while sitting in my car, literally taking the keys out of the ignition, of course I start bleeding. I use up all my tissues and have to throw my water out of my cup so I can spit into that. How disgusting. I wait and wait. Finally I'm back to ooz but decide to go home instead of trying to eat. I'll just cry.
So home it is. I call Kelly and talk to him a little (at his insistence, I didn't want to talk while he was at work. I just wanted to know what time he got off today) and he came home early to help me. Help meaning just sit by me, listen to me vent, ask what ever he wanted to know that of course I had no answers for and then we took a nap. I would be such a basket case without him. But I don't want to mess up his new job too. When we were trying to nap, of course I had another bleed. And just a while ago, yet another. That makes 5 today. I'm supposed to do that for how long before they think it is enough? Shouldn't I decide whether or not I want to risk surgery? If I keep bleeding like this, there is no way I can go to school or shopping by myself...
I truly can't do this. Why have they given up on me?
As I was leaving the doctors, she is all smiles and tells me I'm one of their special patients and if she can do anything for me... I just shook my head.
I will keep trying to go on. I don't mean that in any kind of a suicide way, so no one panic! But I mean doing the things I need to do, and want to do. I'll try to figure out how to handle bleeding in public without panicking me or them. Know what's sad? I hadn't had a bleed in a week. Then I went to cousin lunch on Wednesday and school that night. Then today, bam. Is something as simple as sitting and talking, walking to class and sitting, that bad for me? Or is it just a coincidence? Who knows.
Oh, on an earlier post Carrie said I had been slacking and she wanted more posting, to make it up if I had to! Oh how I wish I was making this up. Sorry Carrie, no rose bush attacking me stories for a while, but maybe I'll check out the kitties and see what they are up to! Thanks so much for the Christmas pictures, that'll help my little book out a lot!
Monday, February 12, 2007
trying to stay awake
So, not so many people are looking at my blog it seems, so I guess it is ok if I write just random thoughts!
I have to do IV's at 11 to 12:30 or so and I'm really tired now so I thought writing would help keep me awake. I have been feeling so poorly since starting IV's. I am itching terribly, my head is pounding and I think it might explode, my muscles ache like the flu, I can't keep any food in me, and I feel like I'm going to pass out every time I walk around. By walk around I mean down the hall way. So I'm hating life right now.
My friend Cheryl went to the grocery store for me today. I was originally going to ask her to go with me but today I didn't think I could make it walking around the store. So she went for me. It helped so much. I ate a bowl of chicken noodle soup and felt ok enough to stand up to take a shower. I'm sure the kitties and Kelly are glad about that!
So, people who read my blog a lot might remember a post I wrote about Kelly's job and his uber stupid mean bosses....and then that blog was gone? Well, I was politely asked to remove it as someone at his work read it and then took it to the bosses. Fine. I didn't care as Kelly was looking for a new job any way and everything I said was true, but I did as requested. Well, Kelly has been at his new job since December. He likes it so very much. He likes the people, he likes how they are direct with what they want and even trust Kelly to do his job. He isn't micro managed, back stabbed and harassed. And then, like someone coming to you out of the grave, he gets a review from his old boss. It wasn't asked for, it isn't needed (they have another system where he works now) and it is a moot point. But his boss sent a review and said they had to have it back right away. It is so full of what I call slander it is ridiculous. Every statement about Kelly ends with a dig such as he can do such and such, but he shouldn't be taken by surprise. What does that mean? He can't handle surprises? He let's the job go until he's surprises with the mess? Either way, it is just stupid. It said he shouldn't make commitments as he can't honor them. Excuse me, are we back to me almost dying and him taking time off of work? It went on and on with things that are just lies. It even says he was given one person to do something and that person quit....implying that it was all Kelly's fault for someone finding a better job? Then he was dinged on not finishing a project and writing all the procedures when in fact he was "given" the new job and no training what so ever only a few weeks before he left. With all the crap he was given did they think he would just work from or after his new job (the real new one where he's at now) to finish something they never taught him to do any how? I know I'm rambling but it is just stupid. So he wrote a comment back that he didn't think this review was accurate, that no one is available 24/7 (oh, that was one of the criticisms, they said he should have been available 24/7 and no one could reach him...what, they had his pager, his cell, his home #. How come when I called I could always reach him at his desk?) and that was true when he was out of the office due to the illness of his wife, that it wasn't his fault if someone quit and he was without support of management when he was there, so how could he perform his job to any standard let alone get improvements made? These are my words but that is the gist of it.
He let his current boss read the full evaluation and his boss said he also received something else, but hasn't told Kelly what it is or what it says. It's like they can't stand that he has moved on and is doing well. The current bosses don't care at all what it says. They have told Kelly that sometimes you just end up working with someone who is intimidated by your skills or is just a jerk and they treat you badly. All they have seen from Kelly is good work and they are thrilled to have him. They said that he has done even more than they hoped for when they hired him.
So there :D old bosses. You are out, you can't hurt Kelly any more. In fact we are finding out that there is a work benefit for time off for medical or family medical, that can be figured out before any emergency comes up, and then you have, I forget how many days you can take off a year, but there are no repercussions from it. Funny how the other job never told him about this. He has also been told how they demoted him without any warnings or being written up, is totally not allowed. That the HR person should have stepped in. Kelly let them know that there is no HR where he came from. And the things his first boss said to him when he got the promotion...could have been reason for that person to be written up... I don't know but it was not ok and would never happen at a true facility where there were people to monitor these people and their behavior.
So we're happy, Kelly is happy and he just keeps on doing is job and helping everyone he can!
Next...I got turned into collections again. Are you ready for this, it is for the huge amount of ...da da da da....$35.00 I am so sick of this. I called and again, they didn't bill medicare. And the letter says that CHOC has a new system and may never have even billed you for this....
So they don't bill you they just turn you in to collections? Is that legal? I'm not paying though, I'm making them do their job and bill medicare. It would be easy to pay and make it go away, but it's the principle. I hate these people. And I continue to get a letter a day, even thought I've talked to them. I talked to my other insurance about another matter because they have not been paying bills. I was told it is all taken care of...but today all the statements came again and nope, they still aren't paid. They are not going to be happy when I call tomorrow, because I feel like crap, and if I have to use my limited energy on them they are going to hear it!
So that's it at the Sweeten household. I didn't go to school tonite and we watched Lost and 24 (tivo'ed). Kelly is sleeping and I'm itching. You should see me in between sentences! itch itch itch.
Well, guess that took a little time, now I'll go watch General Hospital. There's a hostage situation you know? Robin has been shot, Sonny beaten up and Elizabeth is in labor...what's next?
I have to do IV's at 11 to 12:30 or so and I'm really tired now so I thought writing would help keep me awake. I have been feeling so poorly since starting IV's. I am itching terribly, my head is pounding and I think it might explode, my muscles ache like the flu, I can't keep any food in me, and I feel like I'm going to pass out every time I walk around. By walk around I mean down the hall way. So I'm hating life right now.
My friend Cheryl went to the grocery store for me today. I was originally going to ask her to go with me but today I didn't think I could make it walking around the store. So she went for me. It helped so much. I ate a bowl of chicken noodle soup and felt ok enough to stand up to take a shower. I'm sure the kitties and Kelly are glad about that!
So, people who read my blog a lot might remember a post I wrote about Kelly's job and his uber stupid mean bosses....and then that blog was gone? Well, I was politely asked to remove it as someone at his work read it and then took it to the bosses. Fine. I didn't care as Kelly was looking for a new job any way and everything I said was true, but I did as requested. Well, Kelly has been at his new job since December. He likes it so very much. He likes the people, he likes how they are direct with what they want and even trust Kelly to do his job. He isn't micro managed, back stabbed and harassed. And then, like someone coming to you out of the grave, he gets a review from his old boss. It wasn't asked for, it isn't needed (they have another system where he works now) and it is a moot point. But his boss sent a review and said they had to have it back right away. It is so full of what I call slander it is ridiculous. Every statement about Kelly ends with a dig such as he can do such and such, but he shouldn't be taken by surprise. What does that mean? He can't handle surprises? He let's the job go until he's surprises with the mess? Either way, it is just stupid. It said he shouldn't make commitments as he can't honor them. Excuse me, are we back to me almost dying and him taking time off of work? It went on and on with things that are just lies. It even says he was given one person to do something and that person quit....implying that it was all Kelly's fault for someone finding a better job? Then he was dinged on not finishing a project and writing all the procedures when in fact he was "given" the new job and no training what so ever only a few weeks before he left. With all the crap he was given did they think he would just work from or after his new job (the real new one where he's at now) to finish something they never taught him to do any how? I know I'm rambling but it is just stupid. So he wrote a comment back that he didn't think this review was accurate, that no one is available 24/7 (oh, that was one of the criticisms, they said he should have been available 24/7 and no one could reach him...what, they had his pager, his cell, his home #. How come when I called I could always reach him at his desk?) and that was true when he was out of the office due to the illness of his wife, that it wasn't his fault if someone quit and he was without support of management when he was there, so how could he perform his job to any standard let alone get improvements made? These are my words but that is the gist of it.
He let his current boss read the full evaluation and his boss said he also received something else, but hasn't told Kelly what it is or what it says. It's like they can't stand that he has moved on and is doing well. The current bosses don't care at all what it says. They have told Kelly that sometimes you just end up working with someone who is intimidated by your skills or is just a jerk and they treat you badly. All they have seen from Kelly is good work and they are thrilled to have him. They said that he has done even more than they hoped for when they hired him.
So there :D old bosses. You are out, you can't hurt Kelly any more. In fact we are finding out that there is a work benefit for time off for medical or family medical, that can be figured out before any emergency comes up, and then you have, I forget how many days you can take off a year, but there are no repercussions from it. Funny how the other job never told him about this. He has also been told how they demoted him without any warnings or being written up, is totally not allowed. That the HR person should have stepped in. Kelly let them know that there is no HR where he came from. And the things his first boss said to him when he got the promotion...could have been reason for that person to be written up... I don't know but it was not ok and would never happen at a true facility where there were people to monitor these people and their behavior.
So we're happy, Kelly is happy and he just keeps on doing is job and helping everyone he can!
Next...I got turned into collections again. Are you ready for this, it is for the huge amount of ...da da da da....$35.00 I am so sick of this. I called and again, they didn't bill medicare. And the letter says that CHOC has a new system and may never have even billed you for this....
So they don't bill you they just turn you in to collections? Is that legal? I'm not paying though, I'm making them do their job and bill medicare. It would be easy to pay and make it go away, but it's the principle. I hate these people. And I continue to get a letter a day, even thought I've talked to them. I talked to my other insurance about another matter because they have not been paying bills. I was told it is all taken care of...but today all the statements came again and nope, they still aren't paid. They are not going to be happy when I call tomorrow, because I feel like crap, and if I have to use my limited energy on them they are going to hear it!
So that's it at the Sweeten household. I didn't go to school tonite and we watched Lost and 24 (tivo'ed). Kelly is sleeping and I'm itching. You should see me in between sentences! itch itch itch.
Well, guess that took a little time, now I'll go watch General Hospital. There's a hostage situation you know? Robin has been shot, Sonny beaten up and Elizabeth is in labor...what's next?
Saturday, February 10, 2007
Ok...USC visit
So, as a few days have gone by and my brain has rested I guess the USC visit wasn't too bad. I met with the director of surgery. I think that was his title. Anyway, he went over how they do the surgery, where they cut, how long it takes, where they attach the new lungs. All things I already know. But then he started telling me that with all my extra veins and arteries that keep growing, the surgery would be harder (for the surgeon) as they would have to take a lot of time either cauterizing those veins or doing something so that they wouldn't bleed. It sounded like it will make things harder. He also talked about having to put me on a heart lung bypass for 3 or 4 hours of the surgery. I think that is so that they can get all the veins taken care of. I thought he implied that it would be something they needed to do in my case, that they didn't do that for every one's surgery, but since I've been thinking about it after talking to my aunt, I think maybe they do do that with everyone. I'm going to have to find out about that. But it still freaks me out. He talked about time in the hospital, like 3 weeks. And we talked about my score. He said that he felt I would be placed in the low to mid 20's range. He didn't know my calculated score. Now remember the scoring is 0-100 and the higher the number, the higher on the list you are. So low 20's sounded good to me. But also remember that people get transplanted in the 30's and 40's, it just depends on the situation. He let me know that the average wait at USC is 96 days. That almost made me faint. 96 days? I don't think I'll be ready in 96 days. I thought maybe next year or so. But he did let me know that one person was called in 12 days and another has been waiting something like 272 days. He doesn't know that I know Mr. 272 days. He is anxiously waiting and I hope his lungs come in time.
Anyhow, further adding to the having no idea when it can happen is the fact of my blood type. I'm 0+ and can only accept blood or organs from other 0 people. But if I were an A or B...I could accept an organ from the type I was (A or B) and from the 0 people and I think there's other combinations. So my availability of donors is smaller and when an 0 does come up, everyone can use that organ, not just other 0's. So that can make it take longer. I told him I was ok with that!
So I came home with my head reeling...thinking of 96 days. And of course I had to have a couple bleeds that day to make sure I was even more confused. After I got home I wrote to the transplant coordinator to ask a couple of questions. He let me know that my score had been calculated and that I was actually higher than average. Higher??? What is the average? I forgot to ask. He also said my bleeding played no part in my score, that it was based on all the tests I took, not anything else. I thought that the bleeding was what put me higher. How can I feel so ok and be told that I really truly do need a transplant and that if I had no bleeds (which are our major concern) that I would still be scored higher than average and be told I need a transplant?So they tested my heart pressure which is a little high as shown by my right heart catheter, my ability to walk as far as I could in 6 minutes ( I thought I did so good), my PFT's, did anecho and ekg...what else did I do? My kidney test, at least they are fine... my psyc eval should have knocked me out of the running I'm such a mess :) I can't remember what else.
So to make a long story even longer, I have absolutely no idea what is going to happen or when. I'm going to start making my lists. Lists of who to call for what, who can do what when, who will just want to know, my advanced directive, my will, my power of attorney, my phone list....
So that is that. This weekend I'm not doing anything. I talked to my Aunt Sharyn for about 2 hours Thursday night. She really helped me by just letting me talk. I think I repeated myself over and over and she's heard it all before when she was here. But she also gave me a lot to think about helped me to just absorb it all. She also talked to me about a friend in her life that just died, and as morbid as it is, it helped me to just think about someone else for a change. It was a really sad thing that happened, but it was an elderly gentleman and I guess it was his time. I wish my aunt lived closer, but she's always available if I need her.
So that's it for me, transplant and panic. Hopefully it will get easier over time and I'll feel comfortable with whatever decision I make. Oh, my bleeding has finally seemed to stop. I bled about 2 or 3 times a day until Thursday. Nothing Friday or today so keep your fingers crossed. I'm feeling pretty congested though and I don't know if it's infection or just left over crud from bleeding but I started IV's even though I swore I wasn't going to do them this year!
Stay tuned to hear about other events that are annoying in the next blog!
Anyhow, further adding to the having no idea when it can happen is the fact of my blood type. I'm 0+ and can only accept blood or organs from other 0 people. But if I were an A or B...I could accept an organ from the type I was (A or B) and from the 0 people and I think there's other combinations. So my availability of donors is smaller and when an 0 does come up, everyone can use that organ, not just other 0's. So that can make it take longer. I told him I was ok with that!
So I came home with my head reeling...thinking of 96 days. And of course I had to have a couple bleeds that day to make sure I was even more confused. After I got home I wrote to the transplant coordinator to ask a couple of questions. He let me know that my score had been calculated and that I was actually higher than average. Higher??? What is the average? I forgot to ask. He also said my bleeding played no part in my score, that it was based on all the tests I took, not anything else. I thought that the bleeding was what put me higher. How can I feel so ok and be told that I really truly do need a transplant and that if I had no bleeds (which are our major concern) that I would still be scored higher than average and be told I need a transplant?So they tested my heart pressure which is a little high as shown by my right heart catheter, my ability to walk as far as I could in 6 minutes ( I thought I did so good), my PFT's, did anecho and ekg...what else did I do? My kidney test, at least they are fine... my psyc eval should have knocked me out of the running I'm such a mess :) I can't remember what else.
So to make a long story even longer, I have absolutely no idea what is going to happen or when. I'm going to start making my lists. Lists of who to call for what, who can do what when, who will just want to know, my advanced directive, my will, my power of attorney, my phone list....
So that is that. This weekend I'm not doing anything. I talked to my Aunt Sharyn for about 2 hours Thursday night. She really helped me by just letting me talk. I think I repeated myself over and over and she's heard it all before when she was here. But she also gave me a lot to think about helped me to just absorb it all. She also talked to me about a friend in her life that just died, and as morbid as it is, it helped me to just think about someone else for a change. It was a really sad thing that happened, but it was an elderly gentleman and I guess it was his time. I wish my aunt lived closer, but she's always available if I need her.
So that's it for me, transplant and panic. Hopefully it will get easier over time and I'll feel comfortable with whatever decision I make. Oh, my bleeding has finally seemed to stop. I bled about 2 or 3 times a day until Thursday. Nothing Friday or today so keep your fingers crossed. I'm feeling pretty congested though and I don't know if it's infection or just left over crud from bleeding but I started IV's even though I swore I wasn't going to do them this year!
Stay tuned to hear about other events that are annoying in the next blog!
Wednesday, February 07, 2007
It's time to blog
So, what about the mean lady at the grocery store, you ask? Well, I had finished my shopping and was putting my stuff in the trunk. I parked in handicapped. There was a trashy red car next to me with this huge, huge, huge lady trying to get out. In the time I put my groceries in the back, walked my cart back to the holding area, and was on my way back to my car, she still hadn't been able to get out of her car. As I passed behind her, she yells, "and what's so handicapped about you?" in this really rude voice. I turned around and just looked at her, my 02 in my nose. I glared the glare of the killer eyeballs. She should have whithered and gone away, but she didn't. She goes, "oh, well, then I guess it's ok" I just stared at her and said "you have no right to be so rude." She starts mumbling to herself that she just doesn't know these days, about people. I felt like saying, just cuz I'm not fat and trashy like you doesn't mean I don't have my own problems. The only reason I could see for her being in handicapped was the fact that she weighed 500 lbs and couldn't get out of her car. I would never accuse her of not needing to be there. It just really pissed me off. I always get dirty looks, especially if I'm only going in somewhere for one thing and don't wear my 02. Why does everyone think they know,or have the right to know, what is going on with people they don't have a clue about?
Ok, so writing it down doesn't make it sound as bad as it felt that day. But I was mad!!!
And next subject...hemoptysis..or bleeding from the lungs. I am so MAD, ANNOYED, SICK OF IT, and scared. I went to have a CT angiogram on Thursday the 1st. This was supposed to show a good view of my veins and arteries to see if there were any that were enlarged, overly infected or that looked as if they were going to break. They didn't keep me there or call back that day, so we assumed there were no immediate problems. Two months ago I bled about 8 times in 28 days. Small amounts, not such a big deal. In the last 30 days, I had no bleeding at all. Very good.
In the days after this CT...I bled Saturday night, a good size amount, Sunday morning, Sunday evening, Monday afternoon (at the movies, I'm sure Merle loved it) Monday evening right on the way to school, Tuesday just after midnight, and then Wednesday about 4am.
On Monday I talked to the CF doctor. He tells me the CT angio showed nothing, everything is fine. I tell him I'm bleeding daily and it isn't all fine. I wanted to know if the flushing of 200cc's of contrast dye could have been causing this? If my already weak veins were pushed too hard and are now bleeding? He says if it was going to happen, it would have happened on the table. I still have my doubts and think the dye caused this. Anyway, all he wants to do is put me on IV's. Well IV's have never helped me with bleeds before. I haven't started them yet. Maybe tonite. If I keep bleeding though, I will insist on having another surgery as obviously something is wrong. I really like this doctor, but he is so the laid back of the three I see, he always just wants to wait and see. Well, I don't feel like I have time to wait any more. I DO NOT want to have a repeat of last year. I don't just mean in July. I mean the entire year of being on pins and needles, of having 5 surgeries. I want to be proactive and take care of it now. I'm so very frustrated.
Oh, and while I'm talking to him he lets me know that the CT did show a "hollow spot" in my left lung. I can't remember if he said the upper or lower, but it's left back. I didn't know what a hollow was. Basically it's where my lung has rotted away and there is no lung tissue left. Yep, my lung is gone. Not the whole thing, maybe 1/4th of it or more. I just felt sad. He said that it can be completely gone or just a slimy lump of rotted tissue. Like decomposing. How disgusting. If it causes problems in terms of holding puss or infection, it may have to be removed. At this time we don't think that's what any of my problems are. They wouldn't know if there is any infection unless they went in I guess. But for now, nothing will be done.
It is just so hard to keep hearing more and more bad stuff about myself. I feel good. I don't feel sick. I have put myself on prednisone this week because I was having such a hard time breathing, so now I feel really good! I wish I could be on it all the time, but that's not an option. But when your brain says "I feel good" and your doctor says, "Your lungs are rotting away", it's hard to make it all make sense. Wanting to have surgery to take care of one problem and having the doc that says...let's just wait...very frustrating. If I had spoken to the more aggressive doctor, she would have had me in that day probably. Maybe not. I just don't know any more. It hasn't been large amounts, meaning a cup or more, but I'm sick of not feeling like I can go anywhere because I might bleed. Monday when I put my hand on the doorknob to leave for class and started bleeding, I waited for it to be fairly done, then grabbed a bunch of tissues and left for school. I figured if I was still oozing by the time I got there, I wouldn't go. ( I always ooze for a while after the original bleeding is done ) But it had stopped enough that I went to class, walked very quietly and slowly and prayed "Please don't bleed, please don't bleed." I don't want to stop doing what I do, but I'm afraid. Kelly is even more afraid. I wish he could be given the same drug I was given in July so that he would forget too. He has nightmares about me bleeding to death, and I have nightmares about watching myself bleed in the mirror. We're both tired.
Anyway, yesterday was a visit with the transplant surgeon. That is too much for my fingers to type now. Or rather, too much for my brain to assemble. More bad news, more scary stuff, more cognitive dissonance. So till I blog again....I think I'll go eat sweets.
Ok, so writing it down doesn't make it sound as bad as it felt that day. But I was mad!!!
And next subject...hemoptysis..or bleeding from the lungs. I am so MAD, ANNOYED, SICK OF IT, and scared. I went to have a CT angiogram on Thursday the 1st. This was supposed to show a good view of my veins and arteries to see if there were any that were enlarged, overly infected or that looked as if they were going to break. They didn't keep me there or call back that day, so we assumed there were no immediate problems. Two months ago I bled about 8 times in 28 days. Small amounts, not such a big deal. In the last 30 days, I had no bleeding at all. Very good.
In the days after this CT...I bled Saturday night, a good size amount, Sunday morning, Sunday evening, Monday afternoon (at the movies, I'm sure Merle loved it) Monday evening right on the way to school, Tuesday just after midnight, and then Wednesday about 4am.
On Monday I talked to the CF doctor. He tells me the CT angio showed nothing, everything is fine. I tell him I'm bleeding daily and it isn't all fine. I wanted to know if the flushing of 200cc's of contrast dye could have been causing this? If my already weak veins were pushed too hard and are now bleeding? He says if it was going to happen, it would have happened on the table. I still have my doubts and think the dye caused this. Anyway, all he wants to do is put me on IV's. Well IV's have never helped me with bleeds before. I haven't started them yet. Maybe tonite. If I keep bleeding though, I will insist on having another surgery as obviously something is wrong. I really like this doctor, but he is so the laid back of the three I see, he always just wants to wait and see. Well, I don't feel like I have time to wait any more. I DO NOT want to have a repeat of last year. I don't just mean in July. I mean the entire year of being on pins and needles, of having 5 surgeries. I want to be proactive and take care of it now. I'm so very frustrated.
Oh, and while I'm talking to him he lets me know that the CT did show a "hollow spot" in my left lung. I can't remember if he said the upper or lower, but it's left back. I didn't know what a hollow was. Basically it's where my lung has rotted away and there is no lung tissue left. Yep, my lung is gone. Not the whole thing, maybe 1/4th of it or more. I just felt sad. He said that it can be completely gone or just a slimy lump of rotted tissue. Like decomposing. How disgusting. If it causes problems in terms of holding puss or infection, it may have to be removed. At this time we don't think that's what any of my problems are. They wouldn't know if there is any infection unless they went in I guess. But for now, nothing will be done.
It is just so hard to keep hearing more and more bad stuff about myself. I feel good. I don't feel sick. I have put myself on prednisone this week because I was having such a hard time breathing, so now I feel really good! I wish I could be on it all the time, but that's not an option. But when your brain says "I feel good" and your doctor says, "Your lungs are rotting away", it's hard to make it all make sense. Wanting to have surgery to take care of one problem and having the doc that says...let's just wait...very frustrating. If I had spoken to the more aggressive doctor, she would have had me in that day probably. Maybe not. I just don't know any more. It hasn't been large amounts, meaning a cup or more, but I'm sick of not feeling like I can go anywhere because I might bleed. Monday when I put my hand on the doorknob to leave for class and started bleeding, I waited for it to be fairly done, then grabbed a bunch of tissues and left for school. I figured if I was still oozing by the time I got there, I wouldn't go. ( I always ooze for a while after the original bleeding is done ) But it had stopped enough that I went to class, walked very quietly and slowly and prayed "Please don't bleed, please don't bleed." I don't want to stop doing what I do, but I'm afraid. Kelly is even more afraid. I wish he could be given the same drug I was given in July so that he would forget too. He has nightmares about me bleeding to death, and I have nightmares about watching myself bleed in the mirror. We're both tired.
Anyway, yesterday was a visit with the transplant surgeon. That is too much for my fingers to type now. Or rather, too much for my brain to assemble. More bad news, more scary stuff, more cognitive dissonance. So till I blog again....I think I'll go eat sweets.
Subscribe to:
Posts (Atom)
