6 years ago
Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07
Loma Linda Medical Center
Where the magic happens........
Friday, March 21, 2008
Set your DVR's!
I am pleased to announce that ABC7 morning anchor and living kidney donor Phillip Palmer has produced a 30-minute special, "Giving Life: The Story of Organ Donation", that will air on ABC7 this Sat Mar 22 at 6:30pm. The show will focus on both living and deceased donation and the ongoing need that makes donation such a critical public health issue.
Monday, March 17, 2008
If the below inspires you and you don't want to be left out of the fun..
Check the sticky to the left..................................
This is tomorrow....and every Tuesday
!!!!!!!!!!! OUCH !!!!! DON'T POKE ME ANYMORE !!!!!
This is my once a week drill.
Hospital visit... Oh, wait this was last week....
We will find out what the lovely machine showed after they injected me with contrasting solutions next week. This is the CT scan machine that will show 6 month progression slices of my liver.
This is a healthy, smooth liver........................
This one not so healthy.......
Thank you Bobby !!!
Bobby is one of my blogger friends and fellow cirrhosis patient who is very supportive and helps me with cool blog stuff. He made the Ship Header for me...!!! Thanks Bobby. If you haven't visited his blog...it is THE BEST...Very Cool and very informative. It is listed under my favorite blogs. BillyBob's wild ride is the title. Make sure and check it out. He was elected for blog awards recently and rightfully so!
Saturday, March 15, 2008
Something to chew on.....
I am having a wonderful productive day but in taking a break this came through one of my support groups...for those that want to know more about the symptoms and progression of cirrhosis.............................................................
This woman is extremely knowledgeable and explains things well. The group is encouraging her to write a book...
The following are also things I have to look forward to if my liver comes later than sooner..................................
When someone is in the end stages of this disease: their mind will not be clear as it normally would. This is because of the liver not being able to handle toxins like it once did. The liver usually converts the by product of proteins that are used in the body,which is ammonia, to a substance known as urea. In which case the kidney picks up this urea and disposes of it in the urine.However, because of liver cell damage...it doesn't get converted to urea and stay in the blood and goes pass the blood brain barrier and into the brain. This is what causes the mental confusion and unclear thinking. This condition has a name, known as encephalopathy. The doctor may prescribe a drug known as lactalose to help bind this ammonia in the intestines and remove it so it won't build up in the blood.
When the liver is damaged, the blood doesn't flow through it as it once did. The blood has to go back to the heart someway.This blood from the abdominal area usually goes through the liver through the Portal Vein. However, it cannot do this well anymore and will back up into vessels that normally doesn't handle this blood. This causes pressure to build up in the Portal vein known as Portal Hypertension. The vessels, now, that the blood is backed up into can have weak areas in them cause they are small and can balloon outward and break open. The areas these weak spots are usually found is mostly in the esophagus but can also be found in the rectum or belly button area. That means that if a patient every coughs up blood in anyway...it is considered an emergency situation cause they could very easily be bleeding internally. This can look like coffee grounds or like purple or red color blood depending on how much oxygen is in it.
Another thing that can occur with patients...is the development of fluid in the legs and feet and also the abdomen. The fluid that develops in the legs and feet is different than what is in the abdomen. This fluid is known as edema. This is caused because cirrhosis patient have a high level of sodium retained in their body. Sodium tends to hold fluid in the body. Many patients are placed on a "lower sodium diet" and may be given a diuretic also. The diuretic isn't given so much to remove the fluid as it is to lower the sodium. The doctor will look at the patients individual blood work and then inform the patient how much sodium they are allowed to have through their diet. However, this has to be watched closes as the sodium is one of the elements that helps the heart beat in rhythm. Also, the patient should be told how much fluid would be acceptable to take in. The doctor has to balance this with his directions, as a patient...even though they are retaining fluids in the body...can become dehydrated.It is very difficult to explain but it is true. The other type of fluid build up is usually in the abdominal area....this is known as "Ascites". The liver makes a protein, known as albumin,that not only transport substances in the blood...it also is what holds fluid in our vessels. The liver is no longer able to make a sufficient amount of this protein now, so the fluid seeps out and collects in the abdomen and can keep building up.If the patient becomes uncomfortable because of this, since the fluid tends to put pressure on abdominal organs like the stomach and up against the diaphragm..making it difficult to breath...they can do a simple procedure to remove this fluid by inserting a needle in the abdomen and then sliding a tube over it that is connected to a vacuumed bag or bottle that will gently (because of the vacuum) pull the fluid slowly out of the abdomen. They will test this for infections and other things. This fluid will tend to build up again because the albumin is still not being made enough and will have to be removed again.
I mentioned that because of this fluid, the patient may not feel like eating. It is very important for the patient to have nourishment to help their body keep its strength. Sometimes it is best to feed little meals all day long than one large one.Something like a bowl of fresh fruit, pudding, soup, a sandwich.This helps keep their digestive system working well and doesn't cause them alot of discomfort. If they don't want to eat anything at all...it is best to ask the doctor about supplement like Ensure or other products that may be used that they can drink. The doctor should recommend which ones will be okay as they sometimes contain items the patient may not have. For example...some people are not allowed alot of potassium and these products tend to be very high in them.
The patient will becomes more tired as time goes on. Their sleep patterns may change. They should be allowed to sleep whenever they need to. They may get to the point where they may sleep 10 minute sand be up a half an hour or more. Any sleep they get is beneficial.
I forgot to mention something about the fluid in the legs and feet.They may need a larger size slipper and shoe. It is good to elevate the legs just slightly higher than the chest, on a pillow,when they are lying down. Do not massage the legs. When they are swelled like that, it is easy for a blood clot to develop.Massaging the legs can release a blood clot there and move it into an area, like the heart and lung, and become fatal. The patient will develop little spider like veins on the neck,chest and shoulder areas. These are not harmful to the patient.If they are scratched, they may bleed....just apply pressure to the area for about a minute to see if the bleeding will stop.
The liver will not be able now to make the factors needed to help the blood to clot. The patient may bruise easily and develop blood bruises under their skin. If they are cut, it may take awhile for the blood to clot. It is best to remove items that they might trip on or stumble around. Area rugs are one of the main things...a nightlight or low light in the room can also help.
The palms of the hands and feet can turn a red/pink color.Usually, patients should use a cream like eucerin...that doesn't have scent to it. I
t is also best, for now, to keep people who may be sick away from the patient. This would include very young children.The reason for this is that the patient is very weak and having something else, like a cold, flu, or childhood illnesses, can weaken them more or cause them to use medications that can be harmful to them at this time. The liver processes most medications and since it is now not able to do this...the medications have to be adjusted according to how far the patient is in this disease. Any medications, whether over the counter,herbs, herbal teas, vitamins, minerals, or those prescribed by other doctors should be told to the Liver specialist. Also,it would be could to give him the list of call doctors and their addresses and phone numbers that the patient has contact with...this includes dentists and eye doctors.
Here are a few of cirrhosis sites that may be of help to you.
http://www.emedicinehealth.com/cirrhosis/article_em.htm
http://www.mayoclinic.com/health/cirrhosis/DS00373
http://digestive.niddk.nih.gov/ddiseases/pubs/cirrhosis/
I want to give you an idea of words you might see on this site and what they mean.
Hepatitis is inflammation of the liver cells.Cirrhosis is scarring of the liver which leads to death of the liver cells.
If a work starts with Hepata or Hepato...this means the liver
Jaundice is the yellowing of the whites of the eyes, mucus membranes and the skin caused by bilirubin.
This woman is extremely knowledgeable and explains things well. The group is encouraging her to write a book...
The following are also things I have to look forward to if my liver comes later than sooner..................................
When someone is in the end stages of this disease: their mind will not be clear as it normally would. This is because of the liver not being able to handle toxins like it once did. The liver usually converts the by product of proteins that are used in the body,which is ammonia, to a substance known as urea. In which case the kidney picks up this urea and disposes of it in the urine.However, because of liver cell damage...it doesn't get converted to urea and stay in the blood and goes pass the blood brain barrier and into the brain. This is what causes the mental confusion and unclear thinking. This condition has a name, known as encephalopathy. The doctor may prescribe a drug known as lactalose to help bind this ammonia in the intestines and remove it so it won't build up in the blood.
When the liver is damaged, the blood doesn't flow through it as it once did. The blood has to go back to the heart someway.This blood from the abdominal area usually goes through the liver through the Portal Vein. However, it cannot do this well anymore and will back up into vessels that normally doesn't handle this blood. This causes pressure to build up in the Portal vein known as Portal Hypertension. The vessels, now, that the blood is backed up into can have weak areas in them cause they are small and can balloon outward and break open. The areas these weak spots are usually found is mostly in the esophagus but can also be found in the rectum or belly button area. That means that if a patient every coughs up blood in anyway...it is considered an emergency situation cause they could very easily be bleeding internally. This can look like coffee grounds or like purple or red color blood depending on how much oxygen is in it.
Another thing that can occur with patients...is the development of fluid in the legs and feet and also the abdomen. The fluid that develops in the legs and feet is different than what is in the abdomen. This fluid is known as edema. This is caused because cirrhosis patient have a high level of sodium retained in their body. Sodium tends to hold fluid in the body. Many patients are placed on a "lower sodium diet" and may be given a diuretic also. The diuretic isn't given so much to remove the fluid as it is to lower the sodium. The doctor will look at the patients individual blood work and then inform the patient how much sodium they are allowed to have through their diet. However, this has to be watched closes as the sodium is one of the elements that helps the heart beat in rhythm. Also, the patient should be told how much fluid would be acceptable to take in. The doctor has to balance this with his directions, as a patient...even though they are retaining fluids in the body...can become dehydrated.It is very difficult to explain but it is true. The other type of fluid build up is usually in the abdominal area....this is known as "Ascites". The liver makes a protein, known as albumin,that not only transport substances in the blood...it also is what holds fluid in our vessels. The liver is no longer able to make a sufficient amount of this protein now, so the fluid seeps out and collects in the abdomen and can keep building up.If the patient becomes uncomfortable because of this, since the fluid tends to put pressure on abdominal organs like the stomach and up against the diaphragm..making it difficult to breath...they can do a simple procedure to remove this fluid by inserting a needle in the abdomen and then sliding a tube over it that is connected to a vacuumed bag or bottle that will gently (because of the vacuum) pull the fluid slowly out of the abdomen. They will test this for infections and other things. This fluid will tend to build up again because the albumin is still not being made enough and will have to be removed again.
I mentioned that because of this fluid, the patient may not feel like eating. It is very important for the patient to have nourishment to help their body keep its strength. Sometimes it is best to feed little meals all day long than one large one.Something like a bowl of fresh fruit, pudding, soup, a sandwich.This helps keep their digestive system working well and doesn't cause them alot of discomfort. If they don't want to eat anything at all...it is best to ask the doctor about supplement like Ensure or other products that may be used that they can drink. The doctor should recommend which ones will be okay as they sometimes contain items the patient may not have. For example...some people are not allowed alot of potassium and these products tend to be very high in them.
The patient will becomes more tired as time goes on. Their sleep patterns may change. They should be allowed to sleep whenever they need to. They may get to the point where they may sleep 10 minute sand be up a half an hour or more. Any sleep they get is beneficial.
I forgot to mention something about the fluid in the legs and feet.They may need a larger size slipper and shoe. It is good to elevate the legs just slightly higher than the chest, on a pillow,when they are lying down. Do not massage the legs. When they are swelled like that, it is easy for a blood clot to develop.Massaging the legs can release a blood clot there and move it into an area, like the heart and lung, and become fatal. The patient will develop little spider like veins on the neck,chest and shoulder areas. These are not harmful to the patient.If they are scratched, they may bleed....just apply pressure to the area for about a minute to see if the bleeding will stop.
The liver will not be able now to make the factors needed to help the blood to clot. The patient may bruise easily and develop blood bruises under their skin. If they are cut, it may take awhile for the blood to clot. It is best to remove items that they might trip on or stumble around. Area rugs are one of the main things...a nightlight or low light in the room can also help.
The palms of the hands and feet can turn a red/pink color.Usually, patients should use a cream like eucerin...that doesn't have scent to it. I
t is also best, for now, to keep people who may be sick away from the patient. This would include very young children.The reason for this is that the patient is very weak and having something else, like a cold, flu, or childhood illnesses, can weaken them more or cause them to use medications that can be harmful to them at this time. The liver processes most medications and since it is now not able to do this...the medications have to be adjusted according to how far the patient is in this disease. Any medications, whether over the counter,herbs, herbal teas, vitamins, minerals, or those prescribed by other doctors should be told to the Liver specialist. Also,it would be could to give him the list of call doctors and their addresses and phone numbers that the patient has contact with...this includes dentists and eye doctors.
Here are a few of cirrhosis sites that may be of help to you.
http://www.emedicinehealth.com/cirrhosis/article_em.htm
http://www.mayoclinic.com/health/cirrhosis/DS00373
http://digestive.niddk.nih.gov/ddiseases/pubs/cirrhosis/
I want to give you an idea of words you might see on this site and what they mean.
Hepatitis is inflammation of the liver cells.Cirrhosis is scarring of the liver which leads to death of the liver cells.
If a work starts with Hepata or Hepato...this means the liver
Jaundice is the yellowing of the whites of the eyes, mucus membranes and the skin caused by bilirubin.
Thursday, March 13, 2008
Oh, health stuff....
Tues was a busy day...My liver had it's 6 month pictures taken.... ahhhhhhhhhhhhh, what I mean by that is it has been 6 months since my hospitalization and my livers first CT scan. They now are going to do 6 month shots to see what it is up to. Should be interesting to find out the results. I see my Transplant Dr...Dr Mendler in a couple of weeks to get those.
I say Dr Lyko, my GP, who I REALLY like who after getting the booby results told me there was a smaller than a pea type thingy under my armpit that he wants biopsied. So they are going to stick a needle in there during another ultrasound and pull out a sample to see what it is. Then I go to the breast clinic to have them tell me what they would like to do about whatever they find. In the mean time...my Dr's had a pow wow and decided that they want to keep me inactive on the list until they figure it all out.
I am fine with all that as I feel really great and I do believe that there are a couple of people in *my group* on the list that have waited longer and are next up for a liver although I would hate to have *mine* go to someone else while I fool around with this.
I do know that someone at LLU was transplanted in the last 2 weeks... I understand that they came into the ER and was immediately transplanted...From what I understand that happens a lot. Makes me wonder why they weren't talking transplant to me 6 months ago when my meld was 37 and they were telling me I might not make it out of the hospital.....hmmmmmmm interesting.
My attitude is good.... I can't wait to get the house projects back so I can put my house back in order as I currently have shit spread all over the place...
I am starting to pick up my cruise business again so most of you should be getting new cruise directories in the mail from me in the next couple of weeks... If you would like to get one just let me know and I will make sure you are on my mailing list...If you get one and don't need it please pass it on to a friend. Thanks... If I can't travel at least I can cruise vicariously...
I say Dr Lyko, my GP, who I REALLY like who after getting the booby results told me there was a smaller than a pea type thingy under my armpit that he wants biopsied. So they are going to stick a needle in there during another ultrasound and pull out a sample to see what it is. Then I go to the breast clinic to have them tell me what they would like to do about whatever they find. In the mean time...my Dr's had a pow wow and decided that they want to keep me inactive on the list until they figure it all out.
I am fine with all that as I feel really great and I do believe that there are a couple of people in *my group* on the list that have waited longer and are next up for a liver although I would hate to have *mine* go to someone else while I fool around with this.
I do know that someone at LLU was transplanted in the last 2 weeks... I understand that they came into the ER and was immediately transplanted...From what I understand that happens a lot. Makes me wonder why they weren't talking transplant to me 6 months ago when my meld was 37 and they were telling me I might not make it out of the hospital.....hmmmmmmm interesting.
My attitude is good.... I can't wait to get the house projects back so I can put my house back in order as I currently have shit spread all over the place...
I am starting to pick up my cruise business again so most of you should be getting new cruise directories in the mail from me in the next couple of weeks... If you would like to get one just let me know and I will make sure you are on my mailing list...If you get one and don't need it please pass it on to a friend. Thanks... If I can't travel at least I can cruise vicariously...
Wednesday, March 12, 2008
couldn't do just ONE project at a time...
What is this you ask??????
Joe decided that we should have our air-conditioner looked at and serviced before it got hot. It hasn't been performing to well the past couple of years and is who knows how old. Well, it was pretty much shot. Then our heater stopped working properly even though we put in a new heater about 5 years ago. We also have been concerned about what kind of germies might be living in our 40 year old ducts.
In light of you know what and having to stay comfortable, and live fairly germ free we decided to update the system. As you can see from the photo...the coils were almost completely clogged with yuck except for that small round area in the corner..This is where the heat and air *flow* through...our duct system was hopeless, leaky, etc. One other thing we discovered was that when they put in the new heater which is a 4-5 ton unit they didn't replace the coils which only handle a 2-3 ton unit and therefore froze up the air-conditioner and was causing the heater to work to hard and turn itself off from overheating...
To make a long story short...all last week and this week the guys have been up in the attic tearing stuff out and putting in all new, clean, energy efficient systems...
During the last couple of years we have spent a lot of effort and $$$ in upgrading our energy sucking units. We took out 2 electric water heaters and use a tankless, gas system....no more water sitting in tanks heating up waiting for us to use it...a new room, a whole house fan, revamped electrical to gas, energy and water efficient washer and dryer, dishwasher and fridge...stuff like that...our electric bills went from over $400-500 a month to $100-150...etc...
Anyway, the heater is working wonderfully, quiet and efficient and the air conditioner will be hooked up next week....
I have some other personal projects but I need to go to bed and I am sure you are tired of reading all this stuff anyway....
Nite, nite....Hugs, Nancy
A couple more
This is a picture of the linens I am using from the catalog and a photo of the lighting that I chose to back light the wall behing the flat screen for the sitting room...(that is an actual room photo..installed)
More construction mess and the walls get finished
During the course of all this the most stressful thing to me was I hired this one fellow recommended to me by a very good friend and while I appreciated the referral and thought everything was going to go well we ran into a few, well, issues. #1 was that very early in the project as he was getting ready to wall up Joey's door I walked down the hallway and smelled something familiar and sort of sour..... I looked into the room and on the floor this is what I saw.... Well, first I identified the odor. It was mildew,,,,, mold........ and what I SAW was this....big sheets of VERY MOLDY, BLACK MOLDY SHEET ROCK.... AND HE WAS GETTING READY TO PUT IT INTO MY HOUSE !!!!! Now, you must know about the problems with mold in homes and how if they find ANY,,, you have to move out for months as they tear your house apart and try and kill it all which is very difficult as it grows and spreads like crazy... It also causes all kinds of health problems... and here I am getting ready to have a surgery where afterwards in order to keep my new precious liver they are going to SHUT OFF my immune system and I have been working VERY hard to stay healthy....
Well, I was just in shock. He said he was trying to do me a FAVOR and save me a couple of bucks...The sheet rock had been outside his house for I don't know how long...
I scratched my head.....did I ASK him to save me a couple of bucks???? I certainly didn't ask for this....
Okay, well we got through this and I told him to get that shit out of my house and go buy a piece of new sheet rock thank you very much...... LOL
Through the rest of the project we had various problems and I finally decide it was time to switch gears and STOP and hire someone else...
I hate confrontation but did what I had to do...and the new guys came in and took out the popcorn ceiling, finished the drywall an a special texture that I like...painted... everything I asked. The electricians came and rewired a bunch of stuff for lighting, dimmers and relocated switches. and so on and so forth....
I am going to stop this story right now....floors have been cleaned and carpet went in today...the new window is installed...things are coming together...We should be moving furniture in this weekend...Mom is coming next week so I think she will have a place to sleep...
What was the original guest room...sort of.
I wish I had taken some photo's before we started moving things around...not that it was all that pretty....As you can see the one wall was sponge painted... a lovely orange color.... amazing what we think looks good at the time! LOL.....the floor has mexican tile, which has stayed in that room. Here are some photo's......The last one is various paint, carpet, wallpaper, linen and lighting samples...Which helps me wrap my head around the idea's that I have for these rooms... I want the bedroom area...(Joey's room) to be very light, peaceful, tranquil and serene.... a nice place to rest and retreat to....The sitting room will be the x-guest room with the tile...(hot tub is out the door as is a very nice view...) with more color, comfy places to sit an watch tv, read or just escape the rest of the house...It will have a 1.5 chair in it that folds out to a twin bed as well. We also decided to wall up the area where Joey's door was to the hallway as it gave that room more options and room and the two rooms really wouldn't need 2 doors.
Poor Joey said that all his friends parents remodeled their rooms when they moved out but as far as he knows he is the only one whose parents actually walled up the entrance to his room so that he couldn't get back in !!!!! :-) :-) did we do that??????????
What was Joey's room..
These are some photo's of what Joey's room looked like as we started to knock down walls and switch his room and the guest room into one room.His room was done it grey's, blue's and black. Old popcorn ceiling and aluminum window, etc. etc. I tried to post photo's many times and my computer kept getting stuck or I didn't like what order they showed up as, etc. etc.... So I stopped many times... I am determined to do this tonight so bear with me..... The black thing is his closet and what is next to it...(the opening) was the closet in the guest room. The photo was taken after we ripped that out...
Friday, March 7, 2008
My horoscope today
I usually don't read these but it popped up on My Yahoo and I thought I would share it. It brought a smile to my face and it can apply to anyone who needs a little less stress in their life!
Gemini (5/21-6/21)
It's one of those days when you just won't be able to nail things down. Your memory is not working so great right now and you could well come off as scattered. But you can get through this period just fine if you cut yourself some slack. So what if you can't find your keys? And who really cares if you can't quite remember the name of your friend's new sweetie? Just let things go, or try your best to live with whatever frustration a lapse might cause.
Gemini (5/21-6/21)
It's one of those days when you just won't be able to nail things down. Your memory is not working so great right now and you could well come off as scattered. But you can get through this period just fine if you cut yourself some slack. So what if you can't find your keys? And who really cares if you can't quite remember the name of your friend's new sweetie? Just let things go, or try your best to live with whatever frustration a lapse might cause.
