I will be spending some time today updating and playing with my blog. It was an interesting week with lots to share.
Note the new SUBSCRIBE button on the left.
6 years ago
Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07
Loma Linda Medical Center
Where the magic happens........
Sunday, January 27, 2008
Friday, January 18, 2008
Oh, this was funny!
The day after I found out I was listed I was sleeping in.. and the phone rings about 9am. Normally I would let the machine pick it up but all of a sudden I was like, SHIT, I need to answer it now! I looked at the caller ID and dang if it didn't say Loma Linda! I thought..........there is nooooooooooooooooooooooooooo, WAY!................. Well, it was the billing dept wanting to talk to me about $$$. LOL.
Good for a laugh though!
Good for a laugh though!
Dang it has been soooooooo cold !!!! BRRRRRRRR
This has been a great week. I have been sleeping so well which is unusual. But it has been cold and the bed cozy and warm. My night sweats seemed to be taking a break and just the piece of mind that we made it past that hurdle.
Thanks so much for your comments. I love them and they add so much to the blog. You guys are great!
I wrote a couple of other posts and POOF. They disappeared into oblivion. I will make sure to copy before posting from now on in case blogger decides to eat them up.
With the help of some of my online support group folks I was able to find out how the livers are allocated from UNOS and also how many people with my blood type and MELD score are in our allocation area week by week. It was very interesting. I found out that currently, as of January 11th 2008, (there will be new data posted next Tues.) That in our local So Cal area there are only 5 people in *my group* and one of those is a child who will need a small or partial liver. So depending on if anyone got transplanted in the last week, their MELDS changed or others were added like myself we will see what kind of group I am in next week. I just think it is interesting. It may seem obsessive but I don't like to feel in the dark and with the idea that I could suddenly get a phone call and run to the hospital or it could be a year or more..
But one of 5 in So Cal ?????????? WOW, no wonder the Dr said it might not be long.
Now that is with a MELD score of 26. The group is 25 or higher. So if my meld drops to 24 or below I fall into a new group. I am being tested every Tuesday now so they are keeping very close tabs. This is required for the list. In case you are interested this is the Data site for current candidates and recent transplants by center, region or state.
Back to my week. I have been working on the house a bit, got my nails done, made a trip to the dentist and am going to San Diego tomorrow to have lunch with my Mom.
I am toying with the idea of heading up a fundraiser for the local *DONATE LIFE* Chapter. It is at the end of April in Fullerton, CA. I will let you know some details on that if I decide to do it.
Timing is sort of an issue and I would need some help organizing it. Any takers? If you are interested, e-mail me.
My long list of projects is suddenly feeling the need for urgency and prioritiztion. LOL
Do you all like my new trick of hiding the links?????? I am learning. I have some new blog stuff to try this weekend.
Even though it has been so cold, the weather has just been beautiful. I hope everyone is enjoying it and the beginning of your new year!
Thanks so much for your comments. I love them and they add so much to the blog. You guys are great!
I wrote a couple of other posts and POOF. They disappeared into oblivion. I will make sure to copy before posting from now on in case blogger decides to eat them up.
With the help of some of my online support group folks I was able to find out how the livers are allocated from UNOS and also how many people with my blood type and MELD score are in our allocation area week by week. It was very interesting. I found out that currently, as of January 11th 2008, (there will be new data posted next Tues.) That in our local So Cal area there are only 5 people in *my group* and one of those is a child who will need a small or partial liver. So depending on if anyone got transplanted in the last week, their MELDS changed or others were added like myself we will see what kind of group I am in next week. I just think it is interesting. It may seem obsessive but I don't like to feel in the dark and with the idea that I could suddenly get a phone call and run to the hospital or it could be a year or more..
But one of 5 in So Cal ?????????? WOW, no wonder the Dr said it might not be long.
Now that is with a MELD score of 26. The group is 25 or higher. So if my meld drops to 24 or below I fall into a new group. I am being tested every Tuesday now so they are keeping very close tabs. This is required for the list. In case you are interested this is the Data site for current candidates and recent transplants by center, region or state.
Back to my week. I have been working on the house a bit, got my nails done, made a trip to the dentist and am going to San Diego tomorrow to have lunch with my Mom.
I am toying with the idea of heading up a fundraiser for the local *DONATE LIFE* Chapter. It is at the end of April in Fullerton, CA. I will let you know some details on that if I decide to do it.
Timing is sort of an issue and I would need some help organizing it. Any takers? If you are interested, e-mail me.
My long list of projects is suddenly feeling the need for urgency and prioritiztion. LOL
Do you all like my new trick of hiding the links?????? I am learning. I have some new blog stuff to try this weekend.
Even though it has been so cold, the weather has just been beautiful. I hope everyone is enjoying it and the beginning of your new year!
Wednesday, January 16, 2008
Sleep Finally
One of the common symptoms is sever fatigue, insommnia and change of sleep patterns. A lot of patients with cirrhosis have trouble sleeping at night but sleep off and on or all day depending on how sick they are.
Before the hospital visit my head could hardly stay upright at around 4pm. Literally. Very weird and I there was nothing I could do about it but lay down.
Lately and for a long time I have had night sweats and they aren't hormone related except that your liver controls, like a lot of other things, your hormones. That and being on diaretics that keep me constantly peeing wake me up frequently at night.
Well, last night I slept like a baby, no sweats, not to many times on the potty and it was great! Not only that but I slept until 11AM... Oh, JOY! I just felt like my body finally relaxed and said PHEW! I had been running pretty hard the past couple of days...up at 6am, out of the house by 8 and not home until 6 or 7. Those are long days for me right now. So I enjoyed the catch up.
Is anyone else out there keeping a blog? I have some questions for you if you are.
Thank you guys for all the great comments and congratulations! Yes, you can congratulate me now.....LOL
Tuesday, January 15, 2008
I AM ON THE LIST, I AM ON THE LIST, I AM ON THE LIST!
I AM ON THE LIST!,I AM ON THE LIST!I AM ON THE LIST!I AM ON THE LIST!I AM ON THE LIST!I AM ON THE LIST! Okay, calm down already! I have been jumping up and down all day! I went this morning to the cardiologist, she said it is a go and said it normally takes about 3 days to type it up and get the confirmation to transplant but I am giving you a piece of paper to carry over yourself! Took a blood test and it is official!
More later. Joe just got home and I want to go jump around with him a bit!
More later. Joe just got home and I want to go jump around with him a bit!
Monday, January 14, 2008
Monday, Monday......
Had a great day today! I was up early to do some work and get ready to leave early for my trek to LLU to see Ben, the social worker. What wasn't to love. I had a lot of energy, felt good, weather was incredible.
My appt with Ben went well. He said that I don't need to see him again unless I need to talk to him about something.
He wants me to participate in the support groups more often. I have been wanting to do this. They are every week and very well attended by both pre and post Transplantee's. Very informative and supportive. I have planned on attending many but so far whenever I would have on one my agenda sandwiched between other Dr appt's on those days...Well, the Dr's appt's ending up taking more time or they need another test or something and the support group gets bumped.
Did a little window shopping at Victoria Gardens.
Came home and jumped on the computer to check on some client's upcoming cruises then made a yummy, quick dinner of Mahi-Mahi, broccoli, fresh pineapple and some left over potato's.
The mahi-mahi, you have GOT TO TRY... I got it at trader joes in the freezer section. 2 ample pieces were $5.00 and came marinated. I just defrosted them and put them in the oven for 10 minutes...DELISH!
Tomorrow I am back down the hill for the appt I have been waiting for since before Christmas. The Cardiologist. My hope is that he just says everything is a go and doesn't need anything else. We will see.
By the way.....Thank You to all of you who came looking for me when I disappeared a bit to long! I appreciate you all keeping an eye out for me!
I am off to bed.
Have a great day tomorrow and I will let you know what the good Dr says tomorrow night!
My appt with Ben went well. He said that I don't need to see him again unless I need to talk to him about something.
He wants me to participate in the support groups more often. I have been wanting to do this. They are every week and very well attended by both pre and post Transplantee's. Very informative and supportive. I have planned on attending many but so far whenever I would have on one my agenda sandwiched between other Dr appt's on those days...Well, the Dr's appt's ending up taking more time or they need another test or something and the support group gets bumped.
Did a little window shopping at Victoria Gardens.
Came home and jumped on the computer to check on some client's upcoming cruises then made a yummy, quick dinner of Mahi-Mahi, broccoli, fresh pineapple and some left over potato's.
The mahi-mahi, you have GOT TO TRY... I got it at trader joes in the freezer section. 2 ample pieces were $5.00 and came marinated. I just defrosted them and put them in the oven for 10 minutes...DELISH!
Tomorrow I am back down the hill for the appt I have been waiting for since before Christmas. The Cardiologist. My hope is that he just says everything is a go and doesn't need anything else. We will see.
By the way.....Thank You to all of you who came looking for me when I disappeared a bit to long! I appreciate you all keeping an eye out for me!
I am off to bed.
Have a great day tomorrow and I will let you know what the good Dr says tomorrow night!
Sunday, January 13, 2008
Understanding the MELD score
MELD score. Model for End Stage Liver Disease ..... it's all about the MELD
I got this off a support group I belong to in case you are interested. Basically the MELD score components are Bilirubin---Liver, Creatinine---Kidney function and INR, how well your blood is clotting.
The Meld score is a fair system. It is based on how long the person has to live without having a transplant done. They can tell this by the bilirubin level, creatinine level, and also the INR level.They have, in many places, added the sodium level to this.Bilirubin is converted by the liver into a soluble form and the liver also makes factors to keep the blood clotting which signify the INR level. So they are looking at the function that the liver does. The creatinine is a by product of using our muscles. The kidney normally removes this from the body. If the kidneys are having a problem, then this level will raise in the blood. The sodium is being watched more closely because of patients being put on a low sodium diet basically because of Ascites and edema forming. Sodium is one of the electrolytes of the body that keeps our hearts beating in rhythm. So it is very important.The Meld score starts at 6...these people are pretty well yet and have a long time before a transplant is needed...some even go off the list____the highest is 40...these people are very sick and may need a transplant in a few days otherwise they may go into a coma or become to sick to withstand the surgery. If your tests results show that you are getting better, you will go down the list...as you get sicker, you will go up the list.
People who are on the list, usually have a contact to be sure where they are located on the list.
I got this off a support group I belong to in case you are interested. Basically the MELD score components are Bilirubin---Liver, Creatinine---Kidney function and INR, how well your blood is clotting.
The Meld score is a fair system. It is based on how long the person has to live without having a transplant done. They can tell this by the bilirubin level, creatinine level, and also the INR level.They have, in many places, added the sodium level to this.Bilirubin is converted by the liver into a soluble form and the liver also makes factors to keep the blood clotting which signify the INR level. So they are looking at the function that the liver does. The creatinine is a by product of using our muscles. The kidney normally removes this from the body. If the kidneys are having a problem, then this level will raise in the blood. The sodium is being watched more closely because of patients being put on a low sodium diet basically because of Ascites and edema forming. Sodium is one of the electrolytes of the body that keeps our hearts beating in rhythm. So it is very important.The Meld score starts at 6...these people are pretty well yet and have a long time before a transplant is needed...some even go off the list____the highest is 40...these people are very sick and may need a transplant in a few days otherwise they may go into a coma or become to sick to withstand the surgery. If your tests results show that you are getting better, you will go down the list...as you get sicker, you will go up the list.
People who are on the list, usually have a contact to be sure where they are located on the list.
Lake Arrowhead Resort
I forgot I would give you a review of our brunch up there...
The remodel of the resort turned out very nice and the fine dining restaurant looks lovely.
Christmas Brunch no so much.... I will withhold any reviews of food because I would like to give it another chance during their *normal* dining service.
The food was so-so, but they served it buffet and the service more than sucked.... I also think it was way overpriced.
If you go and try it for dinner, let me know...Oh, they do have a very nice private dining room surrounded by a wine cellar...If you have a large group that would be a nice place for dinner.
The remodel of the resort turned out very nice and the fine dining restaurant looks lovely.
Christmas Brunch no so much.... I will withhold any reviews of food because I would like to give it another chance during their *normal* dining service.
The food was so-so, but they served it buffet and the service more than sucked.... I also think it was way overpriced.
If you go and try it for dinner, let me know...Oh, they do have a very nice private dining room surrounded by a wine cellar...If you have a large group that would be a nice place for dinner.
Then until Now
After Christmas we all went back to our various corners and we spent a quiet New Years at home this year. The last several years we have made a point to do something special and really celebrate but this year we decided on a quiet one at home.
I have had more Dr's visits including one to the big guy at the transplant center, Dr Mendler. He is my lead Dr in all of this and I haven't seen him since my first appointment and the transplant center a couple of months ago. Basically he told me that I will be listed as soon as he gets clearance from the heart institute. I was under the impression that my case would have to go back before the committee but he said, no. I was ready to be listed as soon as next week if he gets the OK.
Well, Joe was with me for this appointment and we were both excited and apprehensive all at the same time...Let's just say the butterflies came out to say hello.
Dr Mendler is a very quiet Dr. He is very thoughtful, analytical and doesn't talk much. You can tell there is way to much going on in his brain. I have a lot of trust in him and like him you just need to be ready with your questions as he is very busy. Like a lot of specialists he speaks his own language and you need to know some of it to communicate and ask the right things.
He seems pleased with my health otherwise. The cardiac issue seems to be whether or not my heart can withstand the grueling surgery. Some previous stress tests that they put it under seem to still indicate some questions in that regard.
The other issues that are common for cirrhosis patients are:
Ascites: fluid in the abdomen which can get huge like a pregnant belly (seriously...belly button pops out and everything) and would have to be drained.
Encephalopathy: where the ammonia builds up inside and causes dementia of various degrees from mild confusion to convulsions and comma. Everytime I can't remember where I put my keys I freak a bit.
Varicies: enlarged veins in the throat area that can cause acute and deadly bleeding if ruptured
Kidney Failure: we won't even go there............
Loss of appetite, weight loss and mal nutrition. Doing OK there...in fact, note to self, start watching the ice cream intake!
Those are areas that we are watching for very closely and so far so good. I am on medications to help prevent them but it can get past the point of the meds not stopping what the non-functioning liver can do.
THE GOOD NEWS IS:
Dr Mendler said that once I am listed because of my blood type, body size and my high MELD score...(still 25) that he anticipates a new liver could come my way within 2-3 months. !!!!
Now, that is, if one presents itself and of course no one has control over that. But they are transplanting my blood type at Loma Linda in the mid 20's. (Each transplant center differs depending on how many are listed with different melds and blood type)
BUT, OMG!!!!! Hence the butterflies appearing.....scary and exciting. I didn't know whether to run or jump up and down!
I go see the social worker tomorrow and the cardiologist on Tuesday.
Side note:
People keep asking me when my transplant is *SCHEDULED* Have they NOT watched ER????? and seen the helicopter land and Dr Hotstuff jump out with the igloo with the organ in it??????? Another one that hits me funny everytime I hear it......
I have had more Dr's visits including one to the big guy at the transplant center, Dr Mendler. He is my lead Dr in all of this and I haven't seen him since my first appointment and the transplant center a couple of months ago. Basically he told me that I will be listed as soon as he gets clearance from the heart institute. I was under the impression that my case would have to go back before the committee but he said, no. I was ready to be listed as soon as next week if he gets the OK.
Well, Joe was with me for this appointment and we were both excited and apprehensive all at the same time...Let's just say the butterflies came out to say hello.
Dr Mendler is a very quiet Dr. He is very thoughtful, analytical and doesn't talk much. You can tell there is way to much going on in his brain. I have a lot of trust in him and like him you just need to be ready with your questions as he is very busy. Like a lot of specialists he speaks his own language and you need to know some of it to communicate and ask the right things.
He seems pleased with my health otherwise. The cardiac issue seems to be whether or not my heart can withstand the grueling surgery. Some previous stress tests that they put it under seem to still indicate some questions in that regard.
The other issues that are common for cirrhosis patients are:
Ascites: fluid in the abdomen which can get huge like a pregnant belly (seriously...belly button pops out and everything) and would have to be drained.
Encephalopathy: where the ammonia builds up inside and causes dementia of various degrees from mild confusion to convulsions and comma. Everytime I can't remember where I put my keys I freak a bit.
Varicies: enlarged veins in the throat area that can cause acute and deadly bleeding if ruptured
Kidney Failure: we won't even go there............
Loss of appetite, weight loss and mal nutrition. Doing OK there...in fact, note to self, start watching the ice cream intake!
Those are areas that we are watching for very closely and so far so good. I am on medications to help prevent them but it can get past the point of the meds not stopping what the non-functioning liver can do.
THE GOOD NEWS IS:
Dr Mendler said that once I am listed because of my blood type, body size and my high MELD score...(still 25) that he anticipates a new liver could come my way within 2-3 months. !!!!
Now, that is, if one presents itself and of course no one has control over that. But they are transplanting my blood type at Loma Linda in the mid 20's. (Each transplant center differs depending on how many are listed with different melds and blood type)
BUT, OMG!!!!! Hence the butterflies appearing.....scary and exciting. I didn't know whether to run or jump up and down!
I go see the social worker tomorrow and the cardiologist on Tuesday.
Side note:
People keep asking me when my transplant is *SCHEDULED* Have they NOT watched ER????? and seen the helicopter land and Dr Hotstuff jump out with the igloo with the organ in it??????? Another one that hits me funny everytime I hear it......
Welcome Back!
Well, HAPPY NEW YEAR, everyone!!!
I hope you all enjoyed your Christmas, New Years and various other festivities! Our hope is that you were surrounded by people you love and that you had a wonderful time making good memories. (and that you didn't let the stress get the best of you!)
Thank you, Thank you for all the wonderful cards, photo's and letters! I don't think our mailbox was ever as full as it was this year! We enjoyed each and every one.
I left you on the 21st, right before Christmas and the day before the Fitzgerald Family arrived in their sleigh from the Bay Area. They brought the entire family, including Samantha, their trusty Rhodesion Ridgeback! We made room for everyone and fun was had by all, including the pups. They stayed with us 4 days and it was one of the best Christmas's ever! Everyone chipped in to see that I didn't get too tired. They made me promise to not go overboard and I was a good girl.
A couple of things that we did during thier visit was:
Kim and I finished some last minute shopping for stockings, food and goodies, etc. We had some nice big breakfasts and fussed with the house a bit. (and of course caught up on our girl talk!)
All the boys took a trip down to the big new BASS PRO SHOP down the hill to do guy stuff. It is an amazing store,,,,more of an event or must see, kind of place. Which inspired Johnathon and Joey to go out to an undisclosed location to shoot a few guns, including a newly accuired antique rifle from WW1 that belonged to a grandfather of John's. The young ones stuck to pellet guns out back. That and the ever popular WII................. LOL
Tom brought a cooler full of wonderful fresh, dungenous crab from the north coast down for our Christmas Eve Dinner! Yummmmmmmmmmmmy. It was lovely.
All of us went with our neighbors, the Gilliams, up to Lake Arrowhead for a Christmas brunch after Santa visited us all. We were hoping for a bit more snow. It was plenty cold but not much white stuff. The Gilliams had their entire family together as well, which is nice because daughter, Ellie, has been living in her native England this year.
It was wonderful having a house full of Christmas Spirit!
