Cruisin with the Real"s

Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07

Loma Linda Medical Center

Loma Linda Medical Center
Where the magic happens........

Saturday, May 17, 2008

What I am making....


A couple of these: Lemon Curd, Fresh Berrie Trifle
Everyone loves these and they are my favorite.
I am also making a black bean and corn type salad to go with the taco's....
Want the recipe? Here it is. You can make the lemon curd ahead and I use orange juice concentrate instead of the Grand Marnier of course. But I used to make it that way and if there are no kids or it isn't an issue.... use it!
Make sure to use a great glass bowl if you don't have a trifle bowl and layer CAREFULLY, using all the colors. I also use a lemon and regular pound cake and you can double the recipe. Joe bought a trifle bowl for me at Crate and Barrel a few years ago and it's worth it if you like layered anything.

Lemon Curd Trifle with Fresh Berries

6 large egg yolks 1 cup sugar 4 lemons, zested and juiced 1/2 cup (1 stick) unsalted butter, cut in chunks 1 pint fresh strawberries, stemmed and halved lengthwise 1 pint fresh blueberries 1 pint fresh blackberries 2 cups sweetened whipped cream 1 prepared lemon pound cake, sliced 1/4 cup Lemoncello or Grand Marnier liqueur (optional) Fresh mint leaves, for garnish

To make the lemon curd: Bring a pot of water to a simmer over medium-low heat. Combine the egg yolks, sugar, lemon juice, and zest in a metal or glass heat-resistant bowl and whisk until smooth. Set the bowl over the simmering water, without letting the bottom touch, and continue to whisk. Keep working-out that arm and whisk it vigorously for a good 10 minutes, until the curd has doubled in volume and is very thick and yellow. Don't let it boil. Remove the bowl from heat and whisk in the butter, a couple of chunks at a time, until melted. Refrigerate until the custard is cold and firm.

To build the trifle: put the berries in a mixing bowl and toss them together so they are evenly distributed. Fold the whipped cream into the chilled lemon curd to lighten it up into a mousse. Line a glass trifle bowl with pieces of pound cake to fit. Drizzle or brush the cake with the Lemoncello, spoon a layer of the lemon curd over the cake, and then a layer of mixed berries. Repeat the layers until the ingredients are used up, the last layer looks best if it's the berries. Chill before serving. Garnish with fresh mint.

Recipe Summary Difficulty: Medium Prep Time: 30 minutes Inactive Prep Time: 1 hours Cook Time: 10 minutes Yield: 10 servings.
This is the perfect time of year to make it with the berries in season.


Since we are being *good* about blogging

This was our day. I was just telling my friend, Karen, that while I was really busy and had lots to say, I didn't have time. Now that I have time. I am not going anywhere or doing anything exciting...Oh, well.

We all had a very nice day today. Joe, Joey and myself. It was 100* here and we tried out our new cooling systems. We managed to keep the house a nice 78* by just adjusting the blinds, etc and using the whole house exhaust fan and ceiling fans up until late this afternoon when we had to flip on the new AC unit. I tell you what........We debated and debated about replacing the duct work and the air conditioning unit when we fixed the heater this winter and spent a fortune BUT IT WORKS AWESOME AND EFFICIENT AND QUIET. We are really happy that we went the extra mile and redid the ducts. I know we wouldn't be getting the air flow that we are now.

So, what else did we do? I had a fairly good and energetic day. Managed to finally be happy in shorts and a tank top. I did put on my flannel shirt off and on...I know.................

I did some laundry, cleaned the kitchen floor which if the health dept had seen it would have put yellow tape across my kitchen and closed it...

We are also having a picnic tomorrow that I mentioned so I made some dishes for that.

Joey bbq'd for us for dinner and now I am back under my blankie watching tv and writing to you!

Glimpses into med stuff

By the way, in case you all wondered....................... I do actually know much more about the procedures and my condition, etc than I describe in the blog postings... I figure if you really want all the gory details you will either ask or do some research yourself. For my fellow transplant friends......well, they probably have first hand experience...

I try to keep the blog light. I don't always look like the *good* pics of me either.......LOL
Let's save the gory ones for later.

Friday, May 16, 2008

I am so very proud and thankful to have Joe as my husband!


Joe has been amazing through all of this. Who could have known that as we were rolling along enjoying life for the past couple of decades that we would be facing something like this! I talk about how I am feeling all the time and he is going through as much or more than I am. In different ways but still we are going down this path and dealing with all the fears and reality that comes with it.

He has absolutely been by my side and with me without missing a beat. He helps me more than you can imagine and doesn't complain at all.

I know he and Joey are both afraid and probably very tired of hearing me whine.....but they don't show it and keep helping me selflessly and I will never be able to repay them. Especially, Joe.

ALSO, Joe has really taken control of his health. Is going for all of his wellness checks, passing with flying colors and taking his diabetes seriously and finally has his blood sugar under control.

So please drop him a note to support him as well. aecrealdoc@yahoo.com

Ok, back to medical stuff



During the past couple of months I have had to realize that my energy level is not what it used to be. I pace myself. Sleep when I can. Tell people no when they ask me to do things I think would not be in my best interest. I rarely schedule anything ahead of time except for medical appt's and my weekly support group.



I also have notice a huge change in my internal temp and am ALWAYS cold. It will be 90* and I am under a blankie with a sweater on.



Both things are common to cirrhosis patients. I am grateful that is all I am dealing with as I watch and hear what my friends and fellow transplant patients are going through and there are some very, very rough things that happen to us.



I did have an Endoscopy over a week ago.

One problem that we can get with cirrhosis is that we build up a lot of pressure internally that needs to go somewhere and the weakest place is where it wants to escape which happens to be the veins that surround your Esophagus. They can turn into things called Varicies which is where the blood in the veins is weakening the veins and they are in jeopardy of bursting when you lift or least expect it. Leading to a lot of blood and a very fast trip to the ER to stop it. SOOOO, they like to check every so often by sedating you and sticking a very long thing all the way down into your abdomen to look at everything and take a few photos for prosperity. If while perusing your insides they find some, they *band* them by literally tying them with rubber bands that later dissolve.

MY personal problem with this procedure is that I have had it done twice and both times I was told by the nurses, Dr's and people who had undergone this same procedure that they would give me the nite-nite juice and next thing I knew I would be waking up and it would be over.

WEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEELLLLLLLLLLLLLLLLLL, NOT ME !!!!! I have to be different. I feel and remember everything. Try and gag the damn tube up the entire time and have a completely NOT FUN experience. This also happens to me at the dentist.

So, the Dr performing the procedure this time is my Liver Dr., Dr Mendler, who I like and I think listens to me. I explain my previous experiences and tell him if there is anyway possible I would rather not repeat it.

Well, low and behold, HE LISTENS TO ME! I am out for the next 2 days.....LOL But, I still was awake and gagging during the procedure which leads me to my first question for him when I have my appt in 2 weeks. "Do you think that we need to talk to the anesthesiologist about my resistance ?????" Oh, the results....good news is that they are a little bigger than before but not large enough to be put on blood pressure medication or have any banding......

OK, that and I have an annoying bronchial thing that has been hanging around off and on.

I realize that I don't want under any circumstances to have any cooties if they find my liver. I need to be healthy enough to go under the knife and wake up to a body with no immune system, a beautiful new liver and another chance at a long life filled with the people I love.

I need to start being much more careful (read obsessive) about what I touch, keeping my hands and my environment super germ free. So, if you come to visit me and there seems to be extra hand washing and shoes off in the house kind of thing. please understand... I can't see you if you think you might be sick at all or have been around anyone who is...Please help me ....I don't like being like this.

Okay, enough of the yucky stuff.

Oh and we did manage to sneak this in...




A suprise, one last trip on MOS for those that are in the know.....

This was waiting by the pool for us...............................................................................

It was a great weekend with friends...... :-)

Thursday, May 15, 2008

Ending April

Okay, we are at the end of April and I am signing off and going to bed now... More tomorrow. I promise!

phone call part 2

Well, we spend the day actually doing different things. I am off all food and liquid after 8:30am which give me a chance to have some breakfast before fasting. Everyone is on edge so we decide that we each need to spend the day doing what we feel we need to. So, I take a shower and clean up. Pack a bag to take tonight if I go and one for Joe to bring later after I am out of ICU. I realize how many things I haven't done. I make an e-mail list which if you got an e-mail from me that day, you are on. If you didn't and want to be added. Just let me know. I make a current phone list of people that will need to be called if it is a go. I call immediate family and friends and tell them what is up. I update our bank account and make sure all the bills are covered and on auto pay for the next month. I take a nap. or try to....... I hug my guys and my dogs and wait. The longer the phone doesn't ring the more I think..."well, if one of the others was getting it she would have called and told me by now" Maybe I am going in.

There are lots and lots of stories of people being called and even brought in and prepped for surgery then sent home because the organ wasn't good enough in the end or some other reason. hence the reason I didn't want to get my hopes up as I didn't FEEL it was my time. Being 3rd was a long shot.

Joe spent the day doing chores around the house and keeping busy. I don't even remember what Joey did.

Okay, to finish the story exactly at 4:30 the phone rang again and I was informed that the liver went to one of the other patients. And that was that!

The next day I kept thinking that I could have been getting a new liver that day and how my life would change. How happy I was for the person that received it and prayed that it had been successful and that God would find MY liver when he wanted me to have it.

So we wait some more........................................................................................................

The Phone Call ....#1


Joe and I were supposed to be attending a Corporate Travel Agent meeting in LA for the weekend which I cancelled on Friday due to a cold I couldn't shake.
Then Saturday morning at 7:30AM my cell phone rings with a 909 Loma Linda number.............................. for some reason I was already awake....unusual for me these days. I looked at it and knew. I answer the phone. A voice on the other end says "Hi, this is Lynn, Judith's assistant from Loma Linda Transplant." and my heart skipped a beat. I took a deep breath and sat down at my desk. Joe was at his across from me and was watching my face intently. Later he told me he couldn't figure out what the call was about.
I talked to her for about 10 minutes, hung up and took a very deep breath and told Joe it was the transplant center and there was a liver match available and I was 3rd on the list for it. There were 2 other people who matched at another transplant center in the LA area that would have first option for it but they wanted me to be on alert......they called it *on hold*. Pack, take care of loose ends and be ready to come to the hospital to be prepped for surgery if either one of the 1st 2 wasn't a good match or their Surgeons didn't want it for their patients for a variety of reasons.
I just looked at him and couldn't move. Neither one of us could. We just looked at each other. I asked him how he felt, he said he didn't know how to feel and neither did I....It was the weirdest feeling. I wasn't excited, wasn't scared.... I was nervous, and anxious. and my first thought was....NOT TODAY!!! I AM NOT READY..... the next thought was SHIT, THEY REALLY WANT TO DO THIS !!!! it just all seemed like a dream. Joey was sleeping in the next room, we woke him up. (how do you tell you son....this could be the day they cut your Mom wide open and see what happens?). He also said he didn't know how to feel....so there we were...early on a Saturday morning wondering what tomorrow would be like.
Lynn had told me that she probably wouldn't know anything until 4:30 that afternoon and to expect to hear from her by then.
So the wait begins.....................................................................................................

Exciting news for Joe and our family

As we near the end of April we make some major decisions for a career move for Joe. He has for many years been working at a wonderful hospital in Palmdale with some great people. One downside to it was there was a hour + drive each way which put him pretty far away and add that to a 10 hour day and it makes for very long days.

We were looking around a few months ago and fell into an opportunity that looked very appealing in many ways. #1 is the hospital is local. VERY local. 2 miles away from our driveway. #2 is that this is a very well, known, established, forward looking in medicine, and what we consider to be the best hospital in all of the Victor Valley. We refer all our friends there. #3 We loved the Dr/Owner and his wife, their principals, practice, vision and personalities. #4 They have a great staff. We could go on and on.

We started talking months ago and went back and forth regarding details but one thing we all seemed to agree on was that we wanted to make this happen it was just a matter of how and what would be good for everyone involved.

At the end of April we finally were able to come up with a plan to make it happen and Joe starts on June 2nd! If you would like the name and website just e-mail me...my blog is public so I would rather not post it.

We are very excited about the move! So for those friends that are local you can finally see Dr Joe with out driving to Palmdale! YEAH !!! and he will be close to me when I need him.

Also the bird flu hit Florida Hard!


the birth of the Loma Linda online support group


During this time I also decided that our wonderful weekly liver transplant support group at the hospital could benefit from another way to stay connected outside of our weekly face to face meetings.

You all know how I love how the Internet can keep people connected so I of course saw a way that it could fill a gap.

I have become VERY involved in our weekly support group. From the beginning I fell in love with the people. We have a wide variety of pre-transplant and post-transplant patients. People have gotten cirrhosis and to the point of needing a transplant in so many different ways I can't even count. We all come from different backgrounds, are different ages, have different health challenges and are at different stages in the process. But in the end we all are facing this illness called cirrhosis, headed towards transplant or a success story of a liver transplant sharing with us that there is life after transplant with us very scared.....pre transplant people. We share all kinds of things in the time we are together.

But, here is the gap. Some people live to far to come often, some people move post transplant, (Dana) or just get on with their lives and don't feel the need to come. We have new people with LOTS of questions, Some people we don't see for weeks because they are to sick to come, some people are awake all night and want to talk. Some caregivers need to share that our friends are in the hospital and need prayers.

So, hence the creation of the yahoo group for us. I started it, promote it and moderate it. It is going well and hopefully it will continue to grow and thrive.
We are having the annual picnic this Sunday so I will post some photo's next week.

Rosarita.....

This photo is of Joe, Mom/Mary, Me in Ensenada a couple of weeks prior but it is one of my favorite recent photo's and I wanted a place to put it.



The reason we were in Rosarita with her on THIS weekend wasn't so cheery. We were all there to support her on a very trying day. She had lost a man to cancer, the same cancer that had taken my dad and Kim's mom. Lung Cancer. They had become very dear to each other and they had spent the last year together making each other very happy and they had recently married.

Mary is an amazing woman and a the strongest woman I know. You have all my love, sweetie.

Quick trip to the Bay Area


My best friend, Kimberly lost her mother to cancer. It was very fast and tragic. I made a trip up to the Bay Area to spend a few days with her and then she came back home with me for some R & R. While we were there I had been invited to a Travel Agent tour and luncheon aboard the Celebrity Ship, Mercury. It also included and invite to bring a guest so she and I went to San Francisco on a gorgeous day to tour the ship. This is a ship I have been wanting to sail and we actually have reservations on for our yearly Cruises Inc conference to go to Alaska in the fall. I would get to spend time with associates and friends, get in touch with all that is new and coming with the various cruise lines, sail in a sky suite with Joe, see Alaska AND write it all off. I am cancelling that trip with sadness because even if I get my liver tomorrow, I won't be able to travel that far or in a confined ship with so many people. But it was so fun to get to see all the beautiful amenities and the 5 course lunch they served us was just to yummy to describe. If you get a chance to cruise Celebrity or the new Azamara line GO! When I get photo's from Kim I will post some.

Also on that day, after the several hour tour I wanted to go down to fisherman's wharf and walk around but soon discovered I didn't have the energy. I am NOT enjoying this trend. From someone who was so healthy a few years ago and ran in the San Diego Marathon....well, makes me feel pretty weak.

Kim did come back with me and we made a trip to Glen Ivy Hot Springs f(see photo) for the day before heading down to Rosarita for the night with the family for another memorial service.

During this time we also learned that a friend who had been very close to us in the past had suddenly and tragically just, well, died, while working on his car in his garage. Jeezzzzzzzzzzzzz,
We pay our respects and head to Rosarita to be with my Mom.

Some things we did do.









We did an overnight at pet friendly, totally hip Kimpton Property in San Diego called the Hotel Solamar and discovered the secret cafe of San Diego Cafe Chloe. If you are ever in San Diego or live in the area. GO THERE. We went in the afternoon for *small bites* and had lovely things to eat. "They make everything there. Even brine their own olives and make a lovely gourmet mac and cheese to die for. They also introcuded me to Rose Syrup in sparkling water. It is my new summer drink. The conceirge wouldn't even tell us about it. We found it by asking the locals. These are both in the gaslamp district. We walked down and saw a few ships in port. We had dinner at a mediterranian restaurant called Dussini's. We liked the Cafe the best! Watch your internet for deals! I do.
I just got an e-mail for a new kimpton property opening in LA. hmmmmmm.
I forgot to mention that as we went for a walk to see the ships this was the first time that I was to tired to walk back to the hotel and asked Joe if we could take a cab back......

Where I have been.....

Medical stuff. I had to go back to my calendar to see what happened in April. We will start there.

My infamous lump in my armpit totally went away and hasn't resurfaced... And after having another routine CT Scan to check my liver for cancer (which it is very prone to while it is sick) came back all clear. I talked to my Dr. Told him I was feeling good and asked if I was fairly *stable* and got permission to make some short local trips....which means I can get back to the Transplant Center within a few hours if I get the call. SO, well, that sent me to my calendar and my mind started spinning as to what I could do and where I could go.......

Also, at exactly the same time some very tragic things started happening to people. The people around me that I care deeply about started loosing loved ones quickly and unexpectedly. It was terrible. So instead of running around *vacationing* I was running to my friends and families side. Unfortunatly for some strange reason this has been continuing. Not to people as close to me but everytime I turn around it seems someone is saying *have you heard?* And to people that are young and you wouldn't expect.

I have spent more time in hospitals other than mine than I care to.....In case you are wondering these aren't liver patients.

Joe and I did manage some time away for the 2 of us. I think I will start a new post for that...

I'M BACKKKKKKKKKKKKKK. to catch up the BLOG.








I am so sorry for not posting and keeping you all up to date! I have had a very busy couple of months and that is when I SHOULD be posting and when I have something semi-interesting to share! But I get to busy and before you know it, it seems like a daunting task. Stupid, I know. Okay, enough with the apology and on with the story.........................

Thursday, April 10, 2008

DAFFODIL DAYS


Some one sent this to me today. I thought I would pass it along to you who might not have seen it. This can apply to ANYTHING we want to do.Enjoy--


The Daffodil Principle
(this is also donate life month)





Several times my daughter had telephoned to say, "Mother, you must come to see the daffodils before they are over."I wanted to go, but it was a two-hour drive from Laguna to Lake Arrowhead "I will come next Tuesday", I promised a little reluctantly on her third call.

Next Tuesday dawned cold and rainy. Still, I had promised, and reluctantly I drove there. When I finally walked into Carolyn's house I was welcomed by the joyful sounds of happy children. I delightedly hugged and greeted my grandchildren."Forget the daffodils, Carolyn! The road is invisible in these clouds and fog, and there is nothing in the world except you and these children that I want to see badly enough to drive another inch!"My daughter smiled calmly and said, "We drive in this all the time, Mother.""Well, you won't get me back on the road until it clears, and then I'm heading for home!" I assured her."But first we're going to see the daffodils. It's just a few blocks," Carolyn said. "I'll drive. I'm used to this.""Carolyn," I said sternly, "Please turn around.""It's all right, Mother, I promise. You will never forgive yourself if you miss this experience."

After about twenty minutes, we turned onto a small gravel road. and I saw a small building. On the far side of the building, I saw a hand lettered sign with an arrow that read, " Daffodil Garden ."

We got out of the car, each took a child's hand, and I followed Carolyn down the path. Then, as we turned a corner, I looked up and gasped. Before me lay the most glorious sight.It looked as though someone had taken a great vat of gold and poured it over the mountain and its surrounding slopes. The flowers were planted in majestic, swirling patterns, great ribbons and swaths of deep orange, creamy white, lemon yellow, salmon pink, and saffron and butter yellow. Each different colored variety was planted in large groups so that it swirled and flowed like its own river with its own unique hue. There were five acres of flowers."Who did this?" I asked Carolyn. "Just one woman," Carolyn answered."She lives on the property. That's her home."

Carolyn pointed to a well-kept A-frame house, small and modestly sitting in the midst of all that glory. We walked up to the house. On the patio, we saw a poster. "Answers to the Questions I Know You Are Asking", was the headline. The first answer was a simple one. "50,000 bulbs," it read. The second answer was, "One at a time, by one woman. Two hands, two feet, and one brain." The third answer was, "Began in 1958."

For me, that moment was a life-changing experience. I thought of this woman whom I had never met, who, more than forty years before, had begun, one bulb at a time, to bring her vision of beauty and joy to an obscure mountaintop. Planting one bulb at a time, year after year, this unknown woman had forever changed the world in which she lived. One day at a time, she had created something of extraordinary magnificence, beauty, and inspiration.

The principle her daffodil garden taught is one of the greatest principles of celebration.That is, learning to move toward our goals and desires one step at a time--often just one baby-step at time--and learning to love the doing, learning to use the accumulation of time. When we multiply tiny pieces of time with small increments of daily effort, we too will find we can accomplish magnificent things.

We can change the world .

"It makes me sad in a way," I admitted to Carolyn. "What might I have accomplished if I had thought of a wonderful goal thirty-five or forty years ago and had worked away at it 'one bulb at a time' through all those years? Just think what I might have been able to achieve!"

My daughter summed up the message of the day in her usual direct way. "Start tomorrow," she said.She was right. It's so pointless to think of the lost hours of yesterdays. The way to make learning a lesson of celebration instead of a cause for regret is to only ask, "How can I put this to use today?"

Use the Daffodil Principle.

Stop waiting....
Until your car or home is paid off
Until you get a new car or home
Until your kids leave the house
Until you go back to school
Until you finish school
Until you clean the house
Until you organize the garage
Until you clean off your desk
Until you lose 10 lbs.
Until you gain 10 lbs.
Until you get married
Until you get a divorce
Until you have kids
Until the kids go to school
Until you retire
Until summer
Until spring
Until winter
Until fall
Until you get a new liver (I had to add that)
Until you die...
There is no better time than right now to be happy.
Happiness is a journey, not a destination.
So work like you don't need money.
Love like you've never been hurt, and, Dance like no one's watching.
Wishing you a beautiful, daffodil day!

Don't be afraid that your life will end, be afraid that it will never begin!!!!!

Lots to catch up on...

There has been LOTS going on ...nothing medical per say but life stuff. I will tell you all later...for now enjoy the daffodil story!

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

or coming in to change for dinner and finding a surprise in your cabin


On the other hand we can visualize the Monarch of the Seas at night


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.

Thursday, March 13, 2008

Or we could just move....


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...

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...

remember

You can click on a photo to make it bigger...

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.