A weekend in San Diego

Mary Janes Coffee Shop San Diego

Mary Jane's Coffee Shop

Is a MUST dine at stop for breakfast

San Diego's anti-elitist, democratic ways cater to all turn-ons. So does the Hard Rock Hotel San Diego's coffee shop. Featuring a classic American style with a contemporary twist, Maryjane's Coffee Shop showcases iconic furniture and textures alongside the latest in high-tech elements. When night falls, Maryjane's shows its modern flair, with a focus on the circular bar and outdoor patio. Signature menu items include LA sticky buns, burgers, chopped Cobb salad and chicken pot pies to enjoy while dining at the restaurant or to order from the convenient grab-n-go counter. Open for breakfast, lunch and dinner weekdays and non-stop on weekends, Maryjane's features a fun style and fresh attitude.

No reservations required. But if you have questions, drop us a line at (619) 764-6950.

Hotel Solamar

Is Pet Friendly....all Kimpton Properties are...the are one of our favorite hotels to stay at. If you can find one where you are going....We highly recommend it. Sign up for the e-mail notices for good deals.

Hotel Solamar, a pet friendly San Diego hotel right in the heart of the Gaslamp District, wants to make sure you don't have to leave your favorite friend at home. Complimentary to all our four-legged guests:

• Restful accommodations in our spacious guestrooms and suites
• Welcome treats for your pet
• Food and water bowls place in your room for use throughout your stay
• Pet sitting, grooming, walking and massage services available through our concierge

There are great deals out there now....

We also went to dinner with a colleague at a great restaurant called Confidential on 4th Ave. Very trendy place, great service, small plates. We ordered lots of *small plates* to share and including drinks, (non-alcoholic), coffee, desserts...We spent 2 hours there and spent less than $18 per person.... Before 7pm EVERYTHING was 50% off. The hotel room was also on special and we received $100 in credit to spend on room service, by the pool or in their restaurants....It helps to keep your eyes open for these...!!!

Anchors Aweigh..........!!!!!

Okay, this is the secret............We are off this morning and be back on Monday......The day they are taking *me* before the committee in San Diego...Then the ankle bracelet goes back on....

I will take lots of pics.... BON VOYAGE !!!!!!

Today began with ................................

WAFFLES,WAFFLES,WAFFLES

Joe found a great place in La Jolla this morning for us to have our breakfast....Can you guess what we had???? :-) It was a great coffee shop called Harry's.

What happened was this... I was woke up and ran my records over this morning first thing only to find out we were going to have to wait for our appt with the surgeon as he was a bit busy performing a liver transplant and would be tied up for awhile.....

So we re-adjusted our day and went to this great place for breakfast. This is an old fashioned coffee house that has been in La Jolla since 1960. My excitement came when I saw the Naugahyde booths and milkshake machines.... next was the fact that they served REAL WAFFLES !!! Not those belgian puffy kind....(those are NOT waffles...I don't know what they are but they are not waffles....) I like regular old fashioned waffles a little crispy so the real butter (room temp, not cold) melts perfectly in all the little crevices while you drizzle real, warm maple syrup on them...

Served with a couple of eggs over medium, a couple of pieces of yummy bacon and a big glass of cold milk......

YUMMO!!!! Not exactly on my low sodium diet, or any other diet for that matter....but it isn't often you find real waffles in a coffee shop like that by the beach.....

They were worth it!

Then we spent some time exploring La Jolla a bit and went back to the hospital and they were ready for us with an afternoon full of appointments and a surgeon who was wonderful and spent lots of time explaining things to us even if he did yawn a couple of times.....

All in all we are very impressed with everyone on the transplant team at Scripps and they will be taking my file to the transplant board for approval for listing soon...

We are back home tonight to happy puppies and a full week, although we are both pretty tired.

Some Photo's of Del Mar,Scripps & Joe

Let me clarify this...

Our friends Karen and Bob posted this under comments and I realized I may not have been clear about something...This is what Karen wrote:

Our spirits are lifted that you are feeling well, but we are saddened that you need to begin to look elsewhere for your liver. Of course if you do get a liver in San Diego our home is your home and Joe is always welcome to stay with us as long as he would like.

The reason I am going to San Diego is to get evaluated and listed with them as a DUAL LISTING to Loma Linda. I will continue to receive my main care at LLU but have to go through the steps to be listed in the San Diego area as well. I may also go up to the Bay Area and get listed there also but for right now I want to get situated with Scripps in San Diego.

I will have to meet with all the various Dr's and Depts that I did before but they will share medical info and test results etc with LLU.

San Diego has a smaller pool of people on the list so I may have a better chance of getting my liver there.

Either way, if either one calls I can go to that facility. My insurance approves this as well as my Dr's.

and THANK YOU for the offer of opening your home to us.... You may see me for an overnight soon while I get the appt's done! That would give us time to catch up and I could meet your puppies!

Nancy

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!