This Christmas weekend was the best! I haven't had such great time around the holidays in years. I was surrounded by family and friends, great food and good times.
I got to start my weekend by having dinner with my cousin Kris from Oregon, her sweet husband David, their kids Trevor and Griffen and Kris's dad, who calls me his other daughter, Gale and his lovely wife Cheryl. Kris and the family were able to come to Calif for Christmas to take the kids to Knott's Berry Farm, Disneyland for a few days and Universal studios. So we met for dinner at the chicken place at Knott's. It was so great to see Kris. I always think of her as about 18 and when I see her she still looks 18, but is a great and loving mom. I had so much fun talking to her and getting to know Griffen. He is the cutest boy ever. I wanted to scoop him up and take him home! Trevor was at the far end of the table so I didn't get to talk to much to him, except in line. He has become shy, except when it is time to talk about Sneaky Pete. I think that's the name. It's a guy in jail at Knott's and Trevor wanted to break him out of jail but just couldn't do it. But he did win numerous stuffed animals which mom and grandpa and grandma loved carrying around!! I sure wish they all lived closer. I miss that part of my family.
But, on to the next day which was Christmas Eve. I got to start the day by having lunch with Michelle and Allen. They came down to spend some time with Pat and Cheryl for Christmas. We just went to lunch at Applebee's and exchanged gifts. It was very fun. Michelle's friends Chacho and Elaine were there too. Again with the eating! But I was glad to see her for Christmas this year. Since she's moved we haven't been able to be together at the holidays.
The annual Forester Christmas Eve party was at Lynn's. The hose looked beautiful and the food was great. Everyone came and I know Lynn was so happy. There was enough dessert to put someone diabetic in a coma! (Not me, I kept taking shots!)
She was surprised when people started showing up, as somehow she thought the party was at 7, and it was at 6. Good thing she was ready! I had so much fun talking to everyone and eating till I about popped. Patty, if you're reading this, Noel is waiting to become Leon!
I took my friend Becky with me to the party, since she had nothing to do. She was not amazed at the amount of people since she is one of a set of 9 siblings. I can just imagine how many are at their Christmas.
On Christmas day Kelly and I opened gifts here before going back to Lynn's and Denny's. Kelly got me the most beautiful earrings...diamond (Hearts on Fire) studs from our favorite store. They are so perfect, and white..they make my other diamond earrings and necklace look grey. I told Kelly he started it and now we have to start upgrading! I think he choked! He also got me a couple other things and I got him gift certificates since I'm computer illiterate and would have no idea what to get him. I did pick up Kelly Pickler's CD because he thinks she should have won American Idol. Who knew she sang country? He hasn't listened to it yet!
At Lynn's we had ham and I actually fixed all the sides. I even made yams, that's a first for me! I don't eat them so I've never tried to make them. All my clean boxes that my med's come in when they are delivered to my house were perfect to pack all the food containers. One for cold and one for hot. Guess it's a good thing I was on IV's last week! We did gifts there and I scored. I won't brag but I got the best gifts ever!!
Today we went to Frye's because Kelly can't let a certificate sit in his pocket for too long. The parking lot was a zoo. I don't think anyone went to work, they were all at Frye's!!!
The only sad note was that Kelly got me the most beautiful Christmas card. I just started crying my little eyes out. I so much hope we have 40 more years together because Kelly is the love of my life, my strength and my best friend. He said no more nice cards, from now on it's cartoon characters for me!
Now it's time to see if I can get to sleep early for a change. I think pruning roses should round out this perfect weekend. Hard work, it's good to do after all I ate! I wish Christmas was every other month. What fun would that be?
I hope everyone had a wonderful Christmas or whatever holiday you celebrate. I hope friends and family were near, hope was abundant, and peace was with you for this weekend.
Tuesday, December 26, 2006
Monday, December 18, 2006
More transplant stuff
So I said I would get the results on Wednesday of last week as to whether or not they accepted me as a person for transplant and listed me. Well, I still haven't heard about that. I was told to go forward, meaning have more tests. So this past Friday, I had to go back to USC and have an EKG and Echo and a right heart cathater.
The same as last time, there were many problems, from where I was supposed to go, to what time, to when the procedures were and in what order, to even what procedures I was having.
It was all very frustrating and I almost walked out. I was there at 7, ended up having the procedure at 11:30, and then the echo and EKG after that. It was a mere 15 1/2 hours with no food and water. Not good for a diabetic or for someone with CF. We had to force them to put me on glucose so I didn't crash.
They also put me in a room with other people. Bad for germs and me. But they insisted the people were only there for out patient surgery and weren't sick. The second guy they put in my room was throwing up mucus....now tell me he isn't sick. I'm still waiting to see if I get something!
This whole process has been so bad with the right hand not knowing what the left hand is doing that it terrifies me to have actual surgery there. If we are accepted on the list and then meet with the surgeon, I guess we'll talk to him and see what he says. I do have the right to go elsewhere, even to be listed at two places, but the insurance won't pay for another round of evaluations and that is a huge cost. I don't know if I'll stay at USC or not. They are supposed to be a top notch hospital, but from what we've seen it is awful. Clear down to they've got rid of the cleaning staff. You should see how dirty it was.
Outside of this, I've been not feeling well at all. I've been on IV's for about 10 days now and not feeling any better. Today I had a small bleed. The med's I'm on make you have fatigue, muscle pain, diarrhea, cramps, headache and no appetite. I've lost 3 or 4 pounds so far. I'm trying to keep up but not making it. Liz helped me with the housework and that helped a lot. But between doctors and dentist appts., guests at the house a few times, wanting to decorate, getting up early for USC, having hair and nail appointments (can't not go to those!), going to an xmas program.....it seems endless. I started my Christmas shopping tonite. I got one person done, yipee. Only 5 more and grab bag to go!
Man, I hate feeling this way. Today I was very sad and tearful. I feel like crud, but the possible fix seems worse. I bled and worry that it will continue. It seems to never just come once. I just hope I'm off IV's before Christmas so I can get the med's out of my system and feel better, or at least have more energy before the holiday. I'm looking forward to Christmas, I love it!
So that's it for now. Think I'll try to get some sleep. If I don't get back to the blog before, have a Happy Christmas everyone!!!
The same as last time, there were many problems, from where I was supposed to go, to what time, to when the procedures were and in what order, to even what procedures I was having.
It was all very frustrating and I almost walked out. I was there at 7, ended up having the procedure at 11:30, and then the echo and EKG after that. It was a mere 15 1/2 hours with no food and water. Not good for a diabetic or for someone with CF. We had to force them to put me on glucose so I didn't crash.
They also put me in a room with other people. Bad for germs and me. But they insisted the people were only there for out patient surgery and weren't sick. The second guy they put in my room was throwing up mucus....now tell me he isn't sick. I'm still waiting to see if I get something!
This whole process has been so bad with the right hand not knowing what the left hand is doing that it terrifies me to have actual surgery there. If we are accepted on the list and then meet with the surgeon, I guess we'll talk to him and see what he says. I do have the right to go elsewhere, even to be listed at two places, but the insurance won't pay for another round of evaluations and that is a huge cost. I don't know if I'll stay at USC or not. They are supposed to be a top notch hospital, but from what we've seen it is awful. Clear down to they've got rid of the cleaning staff. You should see how dirty it was.
Outside of this, I've been not feeling well at all. I've been on IV's for about 10 days now and not feeling any better. Today I had a small bleed. The med's I'm on make you have fatigue, muscle pain, diarrhea, cramps, headache and no appetite. I've lost 3 or 4 pounds so far. I'm trying to keep up but not making it. Liz helped me with the housework and that helped a lot. But between doctors and dentist appts., guests at the house a few times, wanting to decorate, getting up early for USC, having hair and nail appointments (can't not go to those!), going to an xmas program.....it seems endless. I started my Christmas shopping tonite. I got one person done, yipee. Only 5 more and grab bag to go!
Man, I hate feeling this way. Today I was very sad and tearful. I feel like crud, but the possible fix seems worse. I bled and worry that it will continue. It seems to never just come once. I just hope I'm off IV's before Christmas so I can get the med's out of my system and feel better, or at least have more energy before the holiday. I'm looking forward to Christmas, I love it!
So that's it for now. Think I'll try to get some sleep. If I don't get back to the blog before, have a Happy Christmas everyone!!!
Friday, December 01, 2006
Transplant evaluation
Yesterday was a really long day. I tried to go to sleep early to be ready, but since I usually go to bed around 3, I couldn't just fall asleep at 9, or 10, or 11. I finally went to bed at 1, but took what seemed like a long time to fall asleep. I got up at 4. My little eyeballs didn't like it, not one bit!
So first thing in the morning was flippen cold!!! 34* according to PFF on Euclid and Foothill. I was shivering! When we got to USC at 6:45, the appointed time, it was still freezing. The parking lot was in the shade, duh a parking building, and so was the walk to the hospital. I couldn't breathe it was so cold. I was longing to get inside, just to find out when we did that they had the huge entrance doors not working well, and it was 40 something inside the building also.
We finally got thru admitting and went upstairs for the first test and we were so happy that it was warm! First thing they did was a blood gas test. For any of you that haven't had this, it can be extremely painful if you get someone not good at it. They need to take blood from the artery in your wrist, not from a surface vein like usual. But my guy did a great job and I only felt the first stick. Then I did a full set of pulmonary functions tests. Took two hours. I was beat. After that a 6 minute walk study. The point is to see how far you can get in 6 minutes. Without my 02 I might add. Well I took off like a bunny, but slowed down after I was sucking air. I was surprised that a place as advanced as USC had me walk up and down a hall way instead of using a treadmill. I ran over a few people, oops. But I went 1580 feet. A mile is 5280 feet. So I went about 3.4 miles per hour. I actually think I went way faster for a while, and then way, way slower! The guy kept saying don't push yourself so hard. Well isn't the point to see what I can and can't do? By the time 6 minutes were up my legs were burning so bad I wanted to sit and never get up! I was surprised the difference between walking 30 minutes or more at a much slower pace and walking 6 minutes really fast. Well, fast for me. I guess my walking around the mall isn't the work out I thought it was!
Next, blood work, then xrays and CT scan. After that met with the transplant coordinator, then the doctor. The doctor is the pulmonologist, not the surgeon. I've met the pulmo guy before and really like him. We bantered back and forth and argued about my weight again. He wants me to get to at least 110. I said, mmmhmm. That was my total response, with a smile of course! He asked what had changed from when he saw me two years ago when I was checking out USC for their CF clinic. Told him about how hard everything is getting, about being short of breath all the time with any effort extended. Told him about the bleeds and about the "event" in July.
After that was...oh, financial coordinator. I hate insurance. They gave her the wrong information. I wish what they told her was true, but I've been paying long enough that I know it's not. Too long of a story. They were very impressed that I know each of the three parts of the insurance, how they work and have a name of who I talk to at each. Also fax numbers that they needed to send info over. Well after all, isn't that my second job?
Lastly was the social worker. I don't know if I impressed him or if I made him think I'm so not right for this procedure! But he remembered us after we talked about the last support group we went to and Kelly raised a little stink because there were no masks for patients to wear. He said he was really mad, not at Kelly, but at the people who put him in the position to not know about this. They now have masks at the support group meetings. He kept looking at his watch though and I didn't know if he was bored, running late or what. We were there only for our scheduled hour so I'm not sure what was wrong.
So that was it. When I was listed in 2000, it took about 4 months to get the results. This time it should take a much shorter time. They, a team of about 20 people...actually not sure how many, but everyone I met, plus the surgeon and some others...meet next Wednesday to talk about me. I wish I could be a fly on the wall. They will reach a decision and then and let me know if I'm accepted or not. If I am, they will not tell me my score (the people on the list are scored from 0-100. The higher the score the closer to the top you are. Meaning the higher the score, the more in need you are of a transplant. But often people in the 30's and 40's get their tx) but they will tell me " your score is too low to be called soon" or "with your score you can expect a very short wait"...or something like that.
So now it's a waiting game. Oh, if anyone is interested in being part of my support group, they want names. It would be people who come to visit me in the hospital, people who can bring food or help when I get home, people who can drive me to doctors appts once I'm out as I have to go twice a week for quite a while. And as a long shot, they are also asking for names of anyone who wants to be a potential lobe donor. This is for the back up plan. You need to be type O and in fairly good shape. The 50 year old rule no longer applies, so you can be over 50. Also you need to be 5 or 6 inches taller than me, I'm 5'3". You can contact me personally for more information.
I told them I have lots of cousins and friends who will help me, because you can actually be denied a transplant if you don't have a support group. I know of one girl this has happened too. How very sad that someone is so alone.
It is a darn good thing Kelly was with me. I had him running back and forth all day, carrying my stuff...the air in that place was so dry, I thought my blood sugar must be skyhigh I was so thirsty and my mouth was so dry, so I had him go to the car and get my testing kit. Blood sugar was normal, so I had him go get me a soda. It didn't last too long. Then I needed another, then we went to the car to get lunch (I had packed us good food, remember the diet!) and took it to the cafeteria to eat. Kelly brought it back to the car because my walking legs were done. He waited, he comforted, he talked to me and for me, and kept me fed and watered! What a guy. It must have been so boring but not a complaint came from him. Maybe it took his mind off the stress of the first day of his new job, MONDAY!
So, I guess that's all. I've been so tired since then. Thursday night I slept for 12 hours. Friday night for 13. I didn't get up until 3 pm today. I couldn't believe how late it was. The kitties loved it. They were both curled up and asleep beside me. One leaning on my legs and one on my head. They're so cute!!! I am going shoe shopping tomorrow with my sister so I have to get up at a reasonable hour, wish me luck!
So first thing in the morning was flippen cold!!! 34* according to PFF on Euclid and Foothill. I was shivering! When we got to USC at 6:45, the appointed time, it was still freezing. The parking lot was in the shade, duh a parking building, and so was the walk to the hospital. I couldn't breathe it was so cold. I was longing to get inside, just to find out when we did that they had the huge entrance doors not working well, and it was 40 something inside the building also.
We finally got thru admitting and went upstairs for the first test and we were so happy that it was warm! First thing they did was a blood gas test. For any of you that haven't had this, it can be extremely painful if you get someone not good at it. They need to take blood from the artery in your wrist, not from a surface vein like usual. But my guy did a great job and I only felt the first stick. Then I did a full set of pulmonary functions tests. Took two hours. I was beat. After that a 6 minute walk study. The point is to see how far you can get in 6 minutes. Without my 02 I might add. Well I took off like a bunny, but slowed down after I was sucking air. I was surprised that a place as advanced as USC had me walk up and down a hall way instead of using a treadmill. I ran over a few people, oops. But I went 1580 feet. A mile is 5280 feet. So I went about 3.4 miles per hour. I actually think I went way faster for a while, and then way, way slower! The guy kept saying don't push yourself so hard. Well isn't the point to see what I can and can't do? By the time 6 minutes were up my legs were burning so bad I wanted to sit and never get up! I was surprised the difference between walking 30 minutes or more at a much slower pace and walking 6 minutes really fast. Well, fast for me. I guess my walking around the mall isn't the work out I thought it was!
Next, blood work, then xrays and CT scan. After that met with the transplant coordinator, then the doctor. The doctor is the pulmonologist, not the surgeon. I've met the pulmo guy before and really like him. We bantered back and forth and argued about my weight again. He wants me to get to at least 110. I said, mmmhmm. That was my total response, with a smile of course! He asked what had changed from when he saw me two years ago when I was checking out USC for their CF clinic. Told him about how hard everything is getting, about being short of breath all the time with any effort extended. Told him about the bleeds and about the "event" in July.
After that was...oh, financial coordinator. I hate insurance. They gave her the wrong information. I wish what they told her was true, but I've been paying long enough that I know it's not. Too long of a story. They were very impressed that I know each of the three parts of the insurance, how they work and have a name of who I talk to at each. Also fax numbers that they needed to send info over. Well after all, isn't that my second job?
Lastly was the social worker. I don't know if I impressed him or if I made him think I'm so not right for this procedure! But he remembered us after we talked about the last support group we went to and Kelly raised a little stink because there were no masks for patients to wear. He said he was really mad, not at Kelly, but at the people who put him in the position to not know about this. They now have masks at the support group meetings. He kept looking at his watch though and I didn't know if he was bored, running late or what. We were there only for our scheduled hour so I'm not sure what was wrong.
So that was it. When I was listed in 2000, it took about 4 months to get the results. This time it should take a much shorter time. They, a team of about 20 people...actually not sure how many, but everyone I met, plus the surgeon and some others...meet next Wednesday to talk about me. I wish I could be a fly on the wall. They will reach a decision and then and let me know if I'm accepted or not. If I am, they will not tell me my score (the people on the list are scored from 0-100. The higher the score the closer to the top you are. Meaning the higher the score, the more in need you are of a transplant. But often people in the 30's and 40's get their tx) but they will tell me " your score is too low to be called soon" or "with your score you can expect a very short wait"...or something like that.
So now it's a waiting game. Oh, if anyone is interested in being part of my support group, they want names. It would be people who come to visit me in the hospital, people who can bring food or help when I get home, people who can drive me to doctors appts once I'm out as I have to go twice a week for quite a while. And as a long shot, they are also asking for names of anyone who wants to be a potential lobe donor. This is for the back up plan. You need to be type O and in fairly good shape. The 50 year old rule no longer applies, so you can be over 50. Also you need to be 5 or 6 inches taller than me, I'm 5'3". You can contact me personally for more information.
I told them I have lots of cousins and friends who will help me, because you can actually be denied a transplant if you don't have a support group. I know of one girl this has happened too. How very sad that someone is so alone.
It is a darn good thing Kelly was with me. I had him running back and forth all day, carrying my stuff...the air in that place was so dry, I thought my blood sugar must be skyhigh I was so thirsty and my mouth was so dry, so I had him go to the car and get my testing kit. Blood sugar was normal, so I had him go get me a soda. It didn't last too long. Then I needed another, then we went to the car to get lunch (I had packed us good food, remember the diet!) and took it to the cafeteria to eat. Kelly brought it back to the car because my walking legs were done. He waited, he comforted, he talked to me and for me, and kept me fed and watered! What a guy. It must have been so boring but not a complaint came from him. Maybe it took his mind off the stress of the first day of his new job, MONDAY!
So, I guess that's all. I've been so tired since then. Thursday night I slept for 12 hours. Friday night for 13. I didn't get up until 3 pm today. I couldn't believe how late it was. The kitties loved it. They were both curled up and asleep beside me. One leaning on my legs and one on my head. They're so cute!!! I am going shoe shopping tomorrow with my sister so I have to get up at a reasonable hour, wish me luck!
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