I was going to make eggs benedict for us this morning. I do make a
mean hollandaise! My restaurant days did teach me a thing or too......But
instead we skipped the sauce and had whole wheat english muffins, poached eggs
and fresh fruit.
But that isn't what I wanted to talk about. Joe and I have always
walked this line between eating decadant lovely food spurred on by my
professional chef days and love of cooking and our love of travel and fine
restaurants, cruise ships, etc. AND the flip side of eating extremely
healthy and well balanced foods which hit it's peak during my extreme fitness
and body building days...
FRESH FOODS have always been at the heart of both and our taste buds still
do dictate a lot of what we actually eat... Now of course we both have
some specific health issues that we need to pay attention to and in striving to
keep us both in the best health we can we have specific things to
watch....
I am on a low sodium diet re: my Dr's...and I decided that it wasn't a very
good idea to put any chemicals in there to process since my organs are all
trying to compensate for all the jobs my liver is supposed to do...The biggie
which of course is ridding your body of nasty stuff. So organic produce at
home for me.
Joe is on a diabetic diet....which is good for me also... anyway, we
juggle a lot of different nutritional stuff.
I have managed to eliminate the grocery store from my shopping
regimen. We do have a SUPER Target up here now with full, very nice
grocery's at great prices so I do go there. We go to the farmers market
for whole grain breads I can pre-order and they have it waiting for me.
They have an amazing whole grain, seeded sourdough bread............(and I can
pick up some fresh flowers for the week) Trader Joe's of course.
There isn't one here but there is one by the hospital. So I can go there
once a week. And we joined a local organic produce co-op that is
absolutely fabulous. We get a basket every 2 weeks of produce in season
and all organic. Extremely delicious stuff!
So, except for the occasional pizza..... (did I say that?) We do
pretty good.
I don't know why I felt like sharing that but I did......
:-)
Cruisin with the Real"s
Loma Linda Medical Center
Monday, May 26, 2008
Eating Healthier.......................
Hello, yes I'm still here just haven't written much.
As you probably know I'm starting work at a new hospital next week. Very excited about this, It's a great practice.
Must make plans for Nancy's birthday (June 8 th).
I really enjoy reading what Nancy writes in this blog. She is always after me to write something but she has always been more verbose and eloquent than I.
Must go now since Nancy is making Eggs Benedict for Memorial Day breakfast. Yum.
Sunday, May 25, 2008
The General Public's idea of Transplant
The general public thinks that if you need a transplant, you are
automatically placed on the list for one. They believe that if you sign a donor
cards, that that means they will take your organ for someone else as soon as you
die. They tend to think that you are placed completely at the bottom of the list
and you have to wait your turn to reach the top of the list before you get a
donor organ. There is alot of misunderstandings that people need to have
corrected and come to know.
Just because you need a liver, doesn't mean you will be placed on the list.
You have to go through much testing and an evaluation process and seeing doctors
because the doctors decide if you will be placed on this list.
If you just sign a donor card, your organ will not be taken for someone
else because your family, in the USA, has the last saying whether it is or not.(In California the Driver's license *pink dot* is not good enough. You need to go to www.donatelife.org to sign up for organ donation.)
Also, they have a say when the organ will be removed...when you are considered
to be brain dead and are hooked to machines or whether it will be after the
heart stops beating and the machines are removed temporarily.
When you are placed on the transplant list...you are placed on that list
according to the blood work you have done that tells the doctor how your liver
is functioning and how well your kidneys are doing. You are placed on that list
according to how much time they determine you have left to live without being
given a donor organ. You don't start at the bottom and wait as you eventually
get to the top. The very sickest patients that have only a few days or weeks to
live are placed at the top of the list. The healthier ones who might become well
enough that they don't even have to have a transplant are placed at the bottom
of the list because they have a long time to live without needing a transplant.
The doctor also takes into consideration what other medical problems you have
also.
Another misconception is that when you are called you will receive the
liver that day. This is also not true. You may go to the hospital and find out
that there was one other person before you and you are just there in case they
cannot have the transplant. In other words, you are really second on the list
and if they patient is too sick to go through the surgery or they cannot get in
touch with them or the doctors think that they won't be able to withstand the
long hours of the surgery...you might get the organ. You may be called and by
the time you get to the hospital, the transplant team will be examining the
liver and find out that it isn't good enough to transplant inside of you. It may
have something wrong with it or it has been out of the body too long to take a
chance in transplanting it. You could start to think that the doctors are just
testing you to see if you will be there when they do call you and you will
receive the transplant. Could be.They will know then that you are serious about
wanting to live and they will try to be sure you do then.
The transplant process is a very organized, complicated and long surgery.
From the starting on the transplant list and the evaluation process to the care
and discharge and all the clinic appointments afterwards...all of it has been
set up in advanced. They adjust the care accordingly for each patient. Some
patients may have a transplant and be leaving the hospital in just a couple
weeks, other are not that fortunate...yet, they adjust and be sure that every
step forward will be permanent as possible and not temporary.
a very COLD but get organized day.....
So today I spent the day with my friend, Christina, who has volunteered to help me take care of the above while I am layed up so we still have a house with lights and water to live in and cars to drive and food to eat when I get out of the hospital !!!! Of course Joe put's the $$$$ in.... Christina will just make sure it goes to the appropriate peeps by the time they want it....
She is also going to help me sort through and match up all the various Dr, lab, hospital bills and the like with the insurance co and help me make phone calls to fix all their mistakes....LOL As far as paying them....well, we will deal with them later.... :-)
Anyway, I have most of the stuff organized electronically. Thank God for that little technology! But someone still needs to keep an eye on the bottom line and I didn't want Joe or any family member worrying about it when I am sure they will be pre-occupied with with ME!
So, THANK YOU CHRISTINA!!!!!
It is still very cold here....Joe and I are making a nice dinner tonight though of BBQ filet mignon, California Artichokes and grilled corn on the cob.... Yum, yum.............
What can I say.....She isn't all about beauty but function....She will do EVERYTHING I have ever wanted my phone to do... Work with Outlook and not some *other* software. She had REAL PUSH e-mail that works effortlessly! The list is huge but those were important to me. So, now that it had been released...I was ready..........but Joe really needed a new phone...We went to the Sprint Store and low and behold they had one! ONE....not TWO!
So Joe got a new Curve.....LOL. I spent yesterday updating his programs on his computer. Creating some new things for him and we got everything hooked up so his computer and phone know each other intimately now....and he is ready to go!
He has a new e-mail and phone # which we will send to you...His yahoo address is still good though as well.
It is a great phone and I will enjoy mine as soon as it gets here.... I ordered it as you can't get one in So Cal....they are too new and everyone wants one so the stores are out...
The only thing I didn't get on mine is Global Access but I really don't need it now since I have this damn ankle bracelet on and it won't let me leave So Calif...... LOL
what happened last week.......
Saturday, May 17, 2008
I forgot to show you *my* bird
This is a story about *my* bird. We get lots of different birds at the feeders but this one is different.
I first say him last year. He was only around for a couple of days but he was so beautiful and I had never seen one like it. And then he was gone.
Well, he appeared again this year about a month ago and I got very excited! I was determined to find out what he was. I had tried the year before with no luck. He is fairly large. About 6-7 inches long. Very distinct coloring. Dark, coppery brown on his chest with bright yellow on the middle. Black and white wings. I tood the picture through the glass so it isn't that great but trust me. Very pretty. And this year he brought a few friends!!!
I knew he was a male because of his coloring and later I determined that there was a young male. They take 2 years to reach full color and a female and another male. Hard to tell because they didn't all show up at once.
This is what I finally identified him as:
A Black Headed GrosbeakClick on above if you want more info.
Apparently they migrate through the desert as they were only around for about 4 days.
Such are my exciting days! It's the little things..............................
What I am making....
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.
Since we are being *good* about blogging
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
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!
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...
This was waiting by the pool for us...............................................................................
It was a great weekend with friends...... :-)
Thursday, May 15, 2008
Ending April
phone call part 2
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
Exciting news for Joe and our family
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.
the birth of the Loma Linda online support group
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.
Rosarita.....
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
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.
Where I have been.....
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...