Appt with my hepatologist

WAIT, MAYBE I AM !!!!

I think it is time I update you on my physical condition. Thank all of you who have been checking on me. It really makes me feel good when you ask how I am...


It is such a hard question to answer actually. You might wonder *what in the world can be hard about such a simple question*?

So, someone asks me, "How are you?" They say, "Nancy, you are looking SO GOOD!".

I say, "Thank you, I feel really good!" And that is the truth. I do feel really good relative to how bad I HAVE felt and how good I feel compared to others suffering from Cirrhosis AND compared to how bad I SHOULD be feeling with my MELD scores still so high.

I am experiencing some of the symptoms of Liver Disease although I would consider mine to be mild. And some things happen to my body that I have no idea what the hell is happening to me at the time...

I am experiencing edema, fluid retention in my legs, ankles and feet. So far I have been controlling it with upping my diuretics when needed, really cutting the sodium down (1200-1500mg daily) when it happens, feet up, etc.

Also, I have started to get more signs of encephalopathy. I lose my train of thought, LOTS, find it hard to concentrate and finish tasks..a little more emotional and sensitive, stuff like that.

There is other stuff but I hate to bore you all with it.

That is the truth. I feel good. I feel lucky. I feel happy. I feel loved. I feel content. I feel peaceful. I feel relaxed. I feel blessed.

I FEEL GREAT !!!! ........................considering............................

Considering the fact that my liver is in REALLY BAD SHAPE, according to Dr M. and that looking at all the facts and statistic scares the hell out of me. REALLY, scares the hell out of me.

We had a long talk yesterday at my appt. and I had a lot of questions. Now, I know he is not God and he doesn't have all the answers. But my questions were mostly about "How can my MELD scores still be so high and yet I FEEL so good?????

His answer to me was a bit disheartening.

He said..." I am GLAD you FEEL so good." Enjoy it. But the fact is your MELD is so high because you need a new liver and sooner would be better than later.

He also said my spleen is enlarged and my pancreas has suffered as well.

My meld score has been slowly creeping down...To give you a recap....
When I was in the hospital last Sept it was 37.
It came down to 28 or so about a month later.
It has been creeping down 1 blip at a time sine then to 22 which is where it is now.

That sound good, right????? Well, yes and no...............again ..........confusing........

It may be GOOD in that I may have recovered a couple of cells in my liver but BAD in that if I do need a transplant sooner than later.....numbers like that could keep me from being *sick enough* to get available livers.

See why I feel like I am spinning on a wheel?

It's one thing to say to myself....It isn't up to me anyway so just relax and enjoy the fact that you feel good.

But that may mean that I end up waiting until my kidneys start failing, I fill up with fluids from Ascites, (think edema gone crazy...) I start bleeding internally in spots I shouldn't...etc. etc. It can get very ugly. AND that can happen very fast.

The other thing I say to myself is, Well, Nancy, you DO have some options. I can dual list at other transplant centers. San Diego Scripps is one that doesn't have such a long list of people waiting...

I don't want to get into all the reasons why or why not to dual list but when my Dr suggests off the record that I might want to look into the Mayo Clinic in Jacksonville, Fl...
Well, I get the hint.

I would love to go to Jacksonville....but my insurance is only good in CA....Unless anyone reading would like to sponsor a liver transplant I guess I am staying on the west coast.

We are lucky to have many wonderful transplant centers in CA and I am starting to schedule interviews.

Maybe it is just me but I feel as though my brain is being bombarded with so many different signals and messages that I am on a crazy roller coaster.

Now try and go about normal day to day life....looking on the outside like there is nothing physically wrong with you at all !!!! It is confusing as hell.

I know some of you with *invisible* illnesses know what I am talking about.

I really am NOT trying to throw a pitty party here...But, I need to write and I know you, my friends and family do what to know..

I guess that is enough for tonight. I need to turn in..

Hugs to you all,
Enjoy the summer,
Enjoy each other,
Enjoy the health you have,
Enjoy life!

BBQ Area

Since I am showing you garden pics....This is the BBQ Area. My Brother, Doug built that beautiful BBQ for us out of tiles we had made in Rosarita. We shopped for them with my Dad when he lived down there. It is a great memory. He picked out the mural above the BBQ.

Courtyard/Fountain project

This is another current project. This is an area outside of our master bedroom that is a lovely area but we had been neglecting a bit and decided it was time to do something about it.

First step was to get the patio overhang painted and Joe installed Sun Shade Screens over portions of the top. We ripped out the old fountain that some workers in the yard had broken a couple of years ago and searched and ordered the new one you see pictured online. they are staining it to order and shipping it FREE from Ill. Can't beat that! You can find Henri Studios here. Then Joe resealed the fountain basin getting it ready to hold water better than it was and prepare it for new tile.

Next we cleaned out the rock in the mid section where an old tree was and a new tree needs to go...Well, we didn't actually do that but Jose did.....We are currently researching what kind of tree we want in there...It is more difficult than you would think! Oh, our pug, Aldo who is blind did have to learn about the new hole the hard way! Luckily he is tough and shook it off and jumped out!

Next was to figure out our theme for the mosaic in the fountain and I laid that out as you can see and we are still in the process of finishing that.

Joe is going to redo the walkway between the guest room and ours with flagstone and I am going to redo the cactus/succulent garden...

A few bird feeders, wind chimes and a nice place to sit and enjoy and we will be done!

Watch for pics to follow..............................

Cruz Biz

Another thing keeping me busy is my Cruise Business. I am happy to say that since I decided to up my marketing campaign and take on new business and it is working!

For quite awhile both before and after my hospital stay and diagnosis I had really slowed way down on promoting my business and therefore my bookings were way down which is what I needed and wanted. I was only booking for friends, family and past clients as I didn't need to keep up on to much.

A couple of months ago I talked with Joe about it and decided that it was a good time to start building clientele again and I have been working quite a bit and booking a fair amount of business!

Soooooooooooo, send your vacationing friends my way please! I will take very good care of them.

Our Support Group at Loma Linda

I wanted to share with you all about my discovery of and delight in participating in our hospital Liver Transplant Support Group.

I am SOOOOOOOOO glad that I found this wonderful group of people to share our journeys of cirrhosis and the road to and after transplant with.

I have found it so interesting, heartwarming and helpful to be able to share what each other is going through. Amazing how EVERYONE has a different story of how they got to where they are now and how they are emotionally and physically facing the challenges of cirrhosis.

I guess I always thought that cirrhosis was mainly caused by alcohol and thought drug use probably figured in there but come to find out alcohol is NOT the biggest cause of cirrhosis at all ! Look up Cirrhosis here......

I think that we are very lucky to have such an active group of pre and post transplant patients. We certainly have some interesting discussions!

I would tell you that if you are suffering from something, whether it is a disease, a loved one with a disease or anything that has got you down and you need someone to talk to who understands there is nothing better than talking to people going through the same thing you are.

We have certainly have learned more about symptoms, what to expect and different ways of handling things that we learned from our quick Dr appt's. They just don't have that much time...

don't forget

You can click on the photo's and hyperlinks in the text for larger photo views and links to websites or articles.

Our Day in LA playing tourist

We have decided that besides working on our garden projects...(more to follow) that we would spend our summer time exploring new things locally. There are so many things to do local to you/us that we never take time to do and especially being in So Cal there are a multitude of places to go and new things to experience within driving distance....(of the transplant center) for a day trip or a weekend.

On this day which started as two.....We had a very full day. I was a bit worried that I would get awfully tired trying to fit this all in but we took it easy and I did fine. We had a great day!

We saw something on the local news about The Getty Villa. Not the museum but the villa which in actuality is a museum unto itself. Here is a another link for details on free admission, etc.

It was designed and built by J Paul Getty to house his collection of ancient Greek and Roman Sculptures and art. It was designed after a villa in Rome that had been partially dug out. It is very beautiful in structure, art and location which is in Santa Monica with views of the ocean. Not to mention the gardens.

They also have a really nice outdoor Mediterranean cafe to enjoy lunch on the patio.

Next we went to a historical, famous Hollywood hot dog landmark. PINKS

It has been in Hollywood since 1939 serving hot dogs to the stars and star struck.... We stood in line for 1.5 hours for a dog...it was great fun visiting with everyone in line and the dogs were great. Their menu was even better..You have never seen so many different options.

Then it was off to the Greek Theatre, an amphitheatre in the hills and pines of Griffith Park under the stars. This is a park where they house the LA ZOO, Gene Autry Museum, A great planetarium and observatory, travel town for the kiddies and The Greek Theatre. We saw Crosby, Stills and Nash and it was a wonderful night. They sounded so good. I was surprised how good actually.

As most of you may remember David Crosby is a liver transplant recipient who received his new liver in 1995 and I couldn't help but think how lucky he was to be standing up there singing. He has had so many years that he would not have had without the selflessness of a donor and their family. I also wondered how many other people he had given hope to that he was unaware of, like me. I sat in the audience wondering if we were the only 2 who new what it was like to face the fact your liver is failing and you need someone else's to keep living and I thought not...There are many of us who are waiting or have had successful transplants...But it was somehow comforting to just watch and hear him sing those beautiful songs he wrote with his friends in perfect harmony.

Test 2 garden collage

How do you like all this? .... It'll have to do for now.

This is one thing that has been keeping me/us busy. I had tried a veggie garden in this spot years ago and just when things started to grow and I had everything on a timed water system we went on a trip somewhere....(as we USED to do...LOL) and when we came back....Guess what? No water/No plants....

So this year when my lovely next door neighbor offered to rototill my very hard dirt into nice soil to plant in I jumped with joy, started making plans and ran off to the garden center for *stuff*.

My friend Michelle suggested I try a seed catalog she has been using www.territorialseed.com It has been a wonderful resource and I was able to order some seeds for things like peas and spinach that are heat resistant. Joe put up a trellis on the stucco wall for the peas. Right now we have tomatoes, a watermelon, cantaloupe, cucumber, yellow and green zucchini, strawberries, 7 kinds of herbs and baby pea plants. I have just added some chard, carrots, spinach and beets and lettuce will follow soon.

I have also been getting advice from a site called www.davesgarden.com

The pictures of the bugs were something I obsessed over for awhile until I finally identified them on www.whatsthatbug.com Turned out to be harmless.

I also know that after transplant it is a BIG NO NO to do any gardening. It's on the top of the DON'T DO THIS list. So I figure... What better way to get a call for a new liver than to start something like a garden that I can't touch if my turn comes up!

So this is summer project #1

hmmmmmmmmmm

Help with Picassa, anyone?????

Test

What Time Is It ?????

TIME TO BLOG !!!!!!

Ok, Ok, Ok..... I know.... I have been very bad and I feel really, really guilty.... Please forgive me for being absent.

It is SO HARD to start up after not posting for awhile as I don't know where to start or what to say, which is interesting because I think about you all and often want to share what is going on in my life or more likely my head. It is always spinning with stuff and I think..........I need to put that on the blog.......THAT is an interesting thought !!!!

And then, POOF, it is on with my day and my moves on to the next thing and I never get to share it with you.

And that is happening more and more as I am tending to really need to take my lactalose to keep my ammonia levels down as I am finding myself a little more loopy and forgetful than usual.

I have been taking lots of photos of things we have been doing so I will share some of those with you as we go along and catch up the past couple of busy summer months. I am going to try and find a way to include little slide shows...

One thing that is so cool.....HAVE YOU SEEN THE CLUSTER MAP ???????? That shows you where my readers are?? Is that not the coolest thing????? I love the Internet !!! (It's in the upper left corner. Click on it and you get a better view).

If I don't know you and you stop by or hang out awhile with me please drop a note in a comment attached to each blog and say *hi*....I would love to see/meet who is interested in my little journey.

I try to keep it light but add informative stuff regarding cirrhosis, liver problems, transplant, donation issues, etc. as I move through this experience.

Ok, gang.... On with the show!

Lost in Space

This is just to let all you readers and people that worry about me and send out the missing posting police that I am fine and have lots to update you on but am temporarily very, very busy...I will try and slip in a few updates and be back to blog world shortly....

This is just a temporary interruption! Please be patient and check back....!!!!!!!!!!!!!!!!!!!!!

Oh, in the mean time there are some fun blogs I read on the left in my list and some new things to play with on the left side like signing up for my RSS feed!