A must attend So Cal seminar !!!!!!

Fighting for Health in the 21st Century


A golden opportunity to hear experts and ask questions regarding..

· Managing diabetes and kidney disease

· Cardiovascular disease, tips for senior health

· Cancer—promising new research and treatments

· How to obtain health insurance from an expert

· Social security benefit claims—the “how to” from an attorney

· Updates on Liver & Kidney Transplant Surgery

· Fatty liver, get the skinny on fatty liver disease



Presenters:



Rodolfo R. Batarse, MD, Nephrologist, Palm Springs, CA: Managing diabetes & kidney disease

Charlie W. Shaeffer, Jr. MD, Cardiologist, Rancho Mirage, CA: Tips for insuring Seniors’ healthy hearts

David Young, MD, Oncologist, Rancho Mirage, CA: Promising new Cancer Research & Treatments

Tom Perkin: Need help getting medical insurance? Tom is the expert to assist you

Bill La Tour, JD, Social Security expert and attorney: The “how to” on SSDI & SSI benefit claims

Okechukwa Ojogho, MD, TX Surgeon, LLUMC: Update on Liver & Kidney Transplant Surgery

Donald Hillebrand, MD, Hepatologist, Scripps Hospital: “Get the Skinny on Fatty Liver Disease”

Where

Desert Regional Medical Center, 1150 North Indian Canyon, Palm Springs

Martin Anthony Sinatra Education Seminar Auditorium



When

Sunday, November 23, 2008 1 – 5 P.M.


No charge for Admission
Refreshments & Fellowship


For Further Information Phone 760-200-2766


A Presentation by the FAIR Foundation Liver Disease & Transplant Support Group


Sponsored by Roche and Astellas

on theTransplant list at Scripps in San Diego

I was finally listed at Scripps at the beginning of last week.... YEAH !! and when I was listed I was listed at a MELD score of 21 which at the time in my blood type "B" I was "tied" with one other person in the San Diego area at a meld of 21.

My mom, Mary accompanied me to my listing appointment with coordinator Kara where she went over all the details of what to do while waiting, instructions on when follow up testing and appointments would be, where to go when I was called and what would most likely happen, etc. etc. I was also given a beeper.....Funny, it has been so long since I have seen or used a beeper I had to remember a bit on how to use it! It would only be used if they couldn't reach us by all phones.

I came home and had a cold hit me on Thursday and wasn't feeling to hot....had a bit of bleeding....like when I blew my nose, my lips cracked, a hang nail, and a couple of other things...I notice that since I don't clot well anymore that happens and when it is more frequent and harder to stop I know it is getting worse....It also makes my meld score go up....So I went and had some blood drawn and it went up to 24 !!!

I found out on Friday before halloween weekend....(can you say parties??) so I scurried around to find the coordinators at Scripps and LLU. Most of the Dr's offices close early on Fridays....my folks are hard to get ahold of after about 1pm... But I wanted my new numbers reported to UNOS BEFORE the holiday weekend......It put me in the #1 spot in San Diego and up quite a few notches in LA....

Joe and I were headed to San Diego anyway for a Vet conference so I did throw a few extra things in my suitcase and we were on pins and needles much of the weekend.

BUT, I am still in one piece....as of today....

I will stay on the UNOS list at 24 for the next month. So, stay tuned! You will know as soon as I do.....

And now with the news!

After much running around and having various poking, prodding, testing, phone calls, faxes, e-mails interspersed with waiting and some extreme bodily functions while preparing for said testing... or recovering from......................................

On Thursday afternoon I was OFFICIALLY LISTED with Scripps at a MELD score of 21.

AND, I am their highest B (blood type)

Which means....all things staying the same..(which they don't) If a B liver becomes available today and it FITS....extremely important...It's MINE!!!

Now, as I have explained before THE LIST is a constantly changing thing....They don't check you off in a 1,2,3, fashion. But it does mean that hopefully soon they will be calling me to tell me it is my turn...........

I am also still listed at Loma Linda but they have many more folks who need their livers first in the LA, One Legacy area than in San Diego.

I have to thank my coordinators and Dr's ......all of them in helping me make this process very easy and quick. They all are great, wonderful and efficiant in thier jobs and in making this happen.

So, that is some of what I have been up to these last 3 weeks......

The Listing Committee - Scripps

The Organ Transplant Waiting List

In the United States, more than 84,000 men, women and children are waiting for organ transplants. Their struggle to live depends on a complex and technologically-advanced organ allocation system that links patients with organs donated by strangers.

Subjected to intense scrutiny by the federal government, the public, and the medical profession, no other aspect of modern medicine is more analyzed and debated. Such scrutiny is essential. Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

In 1984, the National Organ Transplant Act established the Organ Procurement and Transplant Network (OPTN), a national organ sharing system to guarantee, among other things, fairness in the allocation of organs for transplant. Since 1984, the nonprofit United Network for Organ Sharing (UNOS) located in Richmond, Virginia, has operated the OPTN, under a contract with the Division of Transplantation in the Department of Health and Human Services. UNOS maintains a central computer network containing the names of all patients waiting for kidney, heart, liver, lung, intestine, pancreas and multiple-organ transplants; the UNOS "Organ Center" is staffed 24 hours a day to respond to requests to list patients, change status of patients, and help coordinate the placement of organs.

Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

Transplant Journey

Transplant Journey Website - stories of donation and transplant

Above I posted some photo's and interesting links for you. The first phot is of the Call Center at UNOS. I have found some interesting things to share with you this weekend as we head into fall but first let me share with you about my status for being listed at Scripps.

They did present *me* before the transplant committee last Monday and they came back with a YES, we will list you at Scripps....(YIPEE!) conditional upon completing and clearing a couple more tests...

They would like a colonoscopy... I am excited about THAT one.... but at this point you might as well look there as well. LOL

They also would like to check the status of my heart again with a 2D Echo.... no big deal as long as I pass. That test last year lead to a stress test and an angiogram to which I had to spend the night in the hospital in order to have a transfusion of platelets and plasma before undergoing the heart catheterization.

My Dr's at Loma Linda are also going to be ordering at least a stress test in November so we are working on trying to co-ordinate what everyone needs so I only have to do it once.

Sounds easy until you get the insurance company involved and then it comes down to who needs to place the order for which tests so they know who to pay, etc, etc.

So, I spent much of the last week on the phone, sending e-mails, faxes and heading to the hospital for (which is why I haven't posted yet).

I want to say to fellow patients and caregivers...MAKE SURE THAT YOU ARE PROACTIVE in making sure that the tests you need done get done in a timely manner. What I mean by this is ask if there are other options for completing the tests or lab work that might get them done sooner.

At Scripps, for example, they are the transplant center ordering the procedures but they aren't the closest to me geographically and they were also backed up to December on the colonoscopy. Now, this is something that doesn't HAVE to be done THERE... I am the one who wants it sooner so I have to be the one to MAKE it happen sooner. It isn't' a problem to find out what you need to do, you just need to take control of the things YOU CAN in your health care. Think about what needs to be done and why, Ask questions, Make phone calls.... In this case for example I have an order from Scripps scheduling both procedures, an order and referrals from my primary care doctor so I can have it done other places and My Dr's at Loma Linda are also looking at it and working on their schedules as well as calls to my insurance company for prior approval for the various places.... That way I can choose what is the faster, better choice for me so I don't have to wait 3 months for one test....

What I am saying here.....is open your mind, look at the options and make something happen.. Don't just wait around...It is your health. Your primary concern is YOU...They have lots of patients... All my health care providers have been very appreciative that I help in the process. Don't worry that you are being a pain...you are not...and even if you ARE.....so what! Just remember to thank everyone that helps you and ask nicely...you will be surprised at the help you can get with a pretty please, a smile and a thank you!

So, this is GREAT NEWS! I am NOT on the list officially yet...as in my name is not in the hat yet but it is ready to be thrown in as soon as I jump through the proper hoops.... Kind of reminding me of the kids board game *CHUTES AND LADDERS*. I will let you know when it is official and we are packing bags.

Regarding packing bags.......There isn't too much that the patient needs to bring to the hospital for the first couple of days as they will be in surgery, recovery and ICU etc for awhile. The people who REALLY need to pack are the people that will be waiting for you and the further away from home you are the more you should think about this.

Immediate Family and Friends who are most likely to be in the waiting room a lot will need a few things. Comfortable clothing, a few changes, a blanket, medications, toiletries, laptop, cell phone, chargers, magazines, crosswords, etc... Lists of phone #'s. any folders of things that have been prepared, places to stay, copies of advance directives....

Ok, well I am off to have a late Sunday breakfast with Joe and Joey....more to share about our get away cruise next....today, I promise!

INSTEAD.....I went a picked up my last year in book form and we are .........

Hand carrying it to the Transplant Coordinators tomorrow morning...Tom and Kara..... before we have a day full of meetings....
























Now don't get me wrong...we are very grateful to them for making this happen all so fast and in such an expedient manner...Joe had ONE day off in the next 6 weeks that he could accompany me to San Diego and they arranged 4 appointments for us in that one day.....

The Surgeon, the social worker, the financial coordinator and the transplant coordinators....

We are all hoping to get all the I's dotted and T's crossed so that they can take my case before the committee to get me on the list here officially.... It should be a big day and I will have a full report for you...

We came down to San Diego this afternoon and looked at a few extended stay hotels to try and figure out post transplant places for me to stay...

They want you OUT of the hospital ASAP which at first I wasn't to keen on until I realized the reason was because they don't want you to get ANY infections and with your immune system basically non existent .....well....you get the drift.

CAN YOU BELIEVE THE BOOK THAT IS MY MED RECORDS FOR THE YEAR! Size of a very large phone book with yellow pages and all......

That is enough story telling for tonight.... I have to get up early.....

nite, nite........................................................

Scripps San Diego Transplant Class

On Wednesday I drove down to San Diego..... I left home at 10:30am for a 2 hour class and got home at 8pm...I only stopped for gas/potty break twice and a 30 minute shopping break at the pottery barn outlet. It was a very long day...It's a 5 hour round trip.

I enjoy the time alone....I always have liked to drive and when I am alone I have lots of time to think, sing to the radio, talk a bit on the phone.......etc.

The class was very good....very different than the class I took at LLU. I find the differences interesting and an opportunity to learn more from different people who are very knowledgeable.

There were 2 classrooms being used at the same time next to each other. One for Kidney Transplants and one for Liver Transplants. During that time the transplant coordinators spoke to us about what transplant entails regarding the organ that you need replacing...The why's, what, when, how, etc ....etc. Very informative.

Some differences between LLU and Scripps. I am not sharing opinions here just facts...

LLU only does whole liver transplants from deceased donors as do the majority of transplant centers.

Scripps does whole liver transplant, and also will split livers from deceased donors. I.E. If a liver were to become available that could be used by a child and and adult....(same blood type, etc) They can use, say, 20% for the child and 80% in the adult. Both grow to full functioning organ within a year and save 2 lives. It can be a longer and more difficult time of recovery for both as the liver has been severed and also has to heal... They do this rarely as the opportunity doesn't always present itself but that is sometimes an option.

They also do a small percentage of living donor transplants.. In kidneys this is common but in liver, not so much.....I am not going to go into detail as I am not very educated about this... I do know that it is a very serious surgery and recovery for BOTH the donor and the recipient. It can be even harder for the donor during recovery. Both need full time caregivers and it goes on and on....Not something I am interested in doing to a loved one even if I did qualify.....

Another thing that is different is that the anti rejection drugs used post transplant and forever...
Scripps tries to use a steroid free approach which helps avoid a lot of the complications that can arise just from the steroids...(I will talk about that later when we get to a *medication talk*)

After our individual classes they opened the dividers between the rooms and a couple of other speakers talked to all of us as these things would effect all of us.

The Social Worker on the support we would need, housing issues, follow up appointments, support group, compliance to appointments, medication, etc. Insurance....

The Pharmacist talked about all the different types of drugs, what they were, how they were used and combined, side effects....THE SIDE EFFECTS!!!!! If anything scares me that is the biggie. It is one thing to think that your organ that controls so much of how your body operates is not functioning well......another to face the traumatic surgery......another to deal emotionally with having your body cut wide open and have another persons organ placed inside your body,.....another to deal with the months of physical recovery and the fact that you will most likely never have the health you once had......BUT...for me the thought of being place on these drugs which YOU HAVE TO TAKE FOREVER......AS LONG AS YOU WOULD LIKE TO KEEP YOUR NEW PRECIOUS ORGAN..... which is a good idea.....but all the things that these drugs that will save your new liver will also CAUSE to happen to you..... (again...when we have the drug talk....) But....of course it is manageable BUT that doesn't mean it doesn't scare me or I have to like it.................................................................................

All in all it was a very informative and well taught class! Kudo's to Scripps and the Transplant Team there.....They did a great job.

Some Photo's of Del Mar,Scripps & Joe

As we begin Year #2 in this Journey..........our new beginning at Scripps

I want to write a bit and tell you about our visit to Scripps Green Transplant Center and my feelings about going there.

First of all I want you to know that I was hesitant for a long time to pursue health care outside of Loma Linda with whom I have entrusted all my beliefs, hope, support and extraordinary medical care to.

On some level I felt a sort of waywardness about this. Like I was being unfaithful or something. Like a child venturing into an unknown world. I didn't want the people I trust to feel betrayed. This includes my Doctors, my transplant team, my wonderful friends in my support group and even you, my readers. Odd isn't it? I have spent the last year of my life following their lead and I have learned so very much.

Most of you know that I am also very pro-active in most everything and especially my own health right now. I want to know what ALL my options are. Get different opinions from EXPERIENCED, KNOWLEDGEABLE PEOPLE. Leaders in their field. I need to get a feeling that the general consensus among the experts is that I am doing the best thing for the condition that *I* am in. My body and my situation may be similar to lots of others that are suffering from End Stage Liver Disease but it is uniquely different that anyone elses also.

I have continually had/have an internal battle with Do I keep my God given liver as long as possible and be thankful for the health I do have and wait patiently OR do I do as my mother taught me and that is pursue the thought that *God helps those who help themselves?* and explore ALL my options.

As you can tell I finally chose the later. (Always listen to your mother!) And after discussions with my LLU Dr's, my transplant team, friends, family and extended family the consensus is that we/I should do whatever is necessary to do the best thing to keep me alive! That means getting a new liver, a GOOD liver at a great transplant center with a high level of long term success. And following my instincts.

Joe took the day off from his patients and came with me to meet Dr Hillebrand and some of his staff.

We were more than impressed with our visit. His staff is friendly, helpful, knowledable and respectful. So was he. We really liked Dr H. We spent about an hour together. He went over my medical history with me carefully and we spoke about all the steps that would be needed to be dual listed, how the transplant centers coordinated efforts to reduce duplication of tests and visits along with what would happen when the time for transplant came and follow up.

The next step after meeting him is to meet with the rest of the Transplant Team. The Surgeons, the social worker, and the coordinators which I can do with one more visit which we arranged to do on 9/15. After that my case will go before *the commitee* just like before to decide if I should be placed on thier list. There are more details on all of this early in my blog.

So, we are off to the races!

After my meeting on the 15th I will continue my regular care, Dr appointments, Labs and other testing at Loma Linda and we go back to waiting for the call.

Right now, I was informed that I may be the *highest B blood type* they have on the list. If not I am close. So, in reality by dual listing I will most likely have my transplant in San Diego as that is the way the #'s are in my favor.

One thing that I want to share with those of you who are suffering from any kind of disease or are the caretaker of someone who is....

#1. Find a really good or great Doctor that has experience, is well respected in his/her field, that will answer your questions and lay out all your options for you. YOU CAN FIND ONE.... They are out there.

I did spend 2-3 years running around in circles trying to get help from Dr's who didn't know what to do with me except pass me around. 2 weeks before I ended up in the hospital with a MELD of 37 and my Doctors saying I might not make it, I was in my *regular* Dr's office BEGGING for him to send me SOMEWHERE, ANYWHERE that I could get help! I looked like death warmed over, bright yellow, my body totally swollen all over, legs as big as tree trunks, feverish, I had been vomiting, was terribly constipated, lost 30# because I couldn't eat, crying for help, all kinds of nasty things, and he told me once again to get blood drawn, and come back in 3 weeks... I was almost dead in 3 weeks. I might not be waiting for a liver transplant if I had found a good Doctor earlier. (the only reason I ended up in Loma Linda was I told Joe I needed to go to the emergency room and to take me directly to LLU....)

SO FIND A GOOD DOCTOR....then listen to and trust them.

#2 Educate yourself. Learn. Find GOOD information about what your body is doing and what you can do to help yourself. Your Doctor can be good but they are also VERY BUSY. There is no way you will get all your information just from your Dr.

It is your responsibility to learn about your disease, your symptoms, what is *normal*, what to watch out for, and what the future holds. You can learn a lot from people who have the same thing. You can find them online and in support groups. I have learned invaluable information and gained alot of hope from my support groups.

#3 Write things down. Keep a health journal. If you can't, have a loved one keep track of things. Your weight, your drugs, your diet, blood pressure, appointments, attitude. Anything that is relative. Show it to your Dr. Write down your questions. Go to your Dr appt's prepared.

#4 Let your Dr's and medical staff know when something isn't right. Now that doesn't mean they need to know you stubbed your toe but if something is really a problem, DON'T WAIT UNTIL YOUR NEXT APPOINTMENT to let them know. Make a phone call and tell them. Let them decide if it is important.

#5. Be proactive. It's your life. You have people who love you and care about you. You need to care about you. Share with them, spend time with them and yourself. Enjoy life, especially the little things. You may not be able to do all the things you once did so enjoy OTHER things...
go outside, people watch, pet your dog or kitty, hug your kids, take up a new hobby, be nice to the people around you....

Those are my thoughts tonight as we start year 2 in this adventure...Gosh, I am ready to go through the next step of this but I am faithful that I am doing what I can and I do have patience even though it may not sound like it.

Good Night !!!! God Bless.......

My First Appointment with Scripps and Dr Hillebrand Tomorrow

As you can all tell by my recent posts, I have really been focusing more and getting my Transplant sooner than later if possible. In all the things I have read, patients both pre and post transplant, My medical team at Loma Linda and the wonderful transplant coordinators, Judith at LLU and Thomas at Scripps along with Dr Darling and Joe of course, we are ready to start our next step of my journey by having our first of many appointments at Scripps Green as I attempt to be listed to be transplanted there in addition to Loma Linda.

I want to talk to you about what I am doing here..... You have the RIGHT to be what they call *DUAL LISTED*. Actually, you could be listed in as many *AREAS* as you like and are willing to go through the process to be listed at.

Your Transplant Team will advise you of this right. In fact you sign a piece of paper acknowledging that they have advised you of this right. (You sign LOTS of papers...!)

But it is important to know how the system works.

UNOS, who is the United Network of Organ Sharing Organization, ( I highly suggest your visit their site), is the organization in charge of Organ Allocation. Here is a brief description of what they do.

*The UNOS Organ Center is available 24 hours a day, every day of the year, to facilitate organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S. The primary functions of the Organ Center are to:

• assist in placing donated organs for transplantation
• assist in gathering donor information and running the donor/recipient computer matching process
• assist with transportation of organs and tissues for the purposes of transplantation
• act as a resource to the transplant community regarding organ-sharing policies*

Basically, it works like this.

The country is divided into regions. We are in region 5. Region 5 consists of Arizona, California, Nevada, New Mexico and Utah. Now within region 5 there are smaller more localized groupings. We at Loma Linda are in a group with other major transplant centers. Cedar Sinai, USC and UCLA are the big 4 in this area. San Diego has it's own area with 2 major centers and Northern Ca has 2 as well including, Stanford, UC San Francisco, UC Davis and California Pacific in San Francisco.

In order to better allocate and distribute viable organs the organs are best placed locally (they don't have a long shelf life...... :-) (I am still SO SURPRISED when people ask me when my transplant is SCHEDULED????? Which they often do!)

So, if your insurance allows it...which is a HUGE thing, or if you can afford the transplant yourself and if the Transplant Center agrees to have you as a patient and list with their facility, You have the right to be listed in any area you feel you would like to be transplanted at.

Now, not all transplant centers are created equally and I am not going to get into that here but do your homework as you should with any major health issue you may be facing.

I have and these are the best choices for ME..... I will leave it at that.

So, tomorrow, Joe and I head down to meet with my new hepatologist, Dr Hillebrand. He has been highly recommended to me by some of his former patients including Don, who just had his 10 year anniversary with his new liver, he is the head of our LLU support group along with his wife, Betty, who runs the caregiver support group. He was/is also Dr Darlings Doctor who is a 3 time liver transplant patient, who I wrote about in a previous post.

As you may imagine I am very excited and a bit nervous about tomorrow. I feel very safe and comfortable at my hospital home of LLU and it is a bit out of my comfort zone to venture out to another. The other reason for my feelings is that I am of course doing this in the hopes of getting my transplant sooner as they don't have as many people waiting with my MELD score and blood type. SO, that could mean that I am on my way........

I haven't mentioned to you all that it has been exactly ONE YEAR since I entered the Emergency Room Doors at LLU and was diagnosed and began this journey. It has been quite a year...I have learned a lot....more on that later.

So, I have my list of questions for Dr H and away we go!

Organ and Cell Transplantation FAQ's from Scripps Green Hospital

Here is an excerpt from a web page on the Scripps Green Transplant Web Site. I have included a link to the full article HERE and will post one under the LINKS section.

Scripps Center for Organ and Cell Transplantation

When will I be placed on the waitlist?

You will be placed on the waitlist after you have completed all of the necessary tests and received insurance approval, and the transplant selection committee at Scripps has had an opportunity to review the results and make sure it is safe for you to undergo a transplant. The committee may decide that you must fulfill certain additional requirements prior to listing.

Why are there so many tests and how long will it take me to complete them?

The tests that are part of the evaluation process are required to make sure it is safe for you to receive a transplant. For example, if you were found to have heart disease during your evaluation, there may be some change in your medication or a procedure that you would require before it would be safe for your heart to undergo the transplant surgery. The entire evaluation process may take from one month to several months depending on your medical problems and how quickly you can complete the necessary tests.

How long will I have to wait for a transplant?

How long you will have to wait for your transplant depends on a number of factors including:

• The type of transplant you require (liver, kidney, pancreas, or some combination).
• How quickly you complete the evaluation testing
• Whether you have other medical problems that require a waiting period. For example, you may receive a transplant after having certain types of cancer if you have received treatment and have demonstrated a long enough period without the cancer returning
• In the case of a liver transplant, how sick you are
• Your blood type (certain blood types must wait longer than others)
• In the case of a kidney or pancreas transplant, how your immune system reacts to cells or organs from other individuals
• In the case of a kidney transplant, how long you have had kidney failure

In general, patients can wait months to years for a transplant from a cadaveric donor. For patients with a living donor, the wait can be significantly shortened since they need to wait only as long as it takes to complete both their evaluation and that of their donor (usually a few months). In addition, patients with kidney failure who agree to accept a kidney from an extended criteria donor currently wait less than a year at Scripps for their transplant.

How long will the transplanted organ last?

How long the transplanted organ will last depends on a number of factors. In most cases, the new organ should last for the rest of your life. In some cases, a transplant does not last that long. Reasons for a transplant not lasting as long include:

• Recurrence of the disease process that damaged your original organ
• Rejection of the organ by your immune system
• Infection
• Drug reaction

Fortunately, in most cases these problems can be treated.

Will I have to take special medications for the rest of my life?

You will have to take special medications for the rest of your life. When you first go home after your transplant, you will be on roughly 10-12 new medications. With time, that number will be reduced by your transplant physician.

How long will it be until I can get back to my normal life after my transplant?

Most patients can get back to a relatively normal life in about 3 months. You will be in the hospital for about a week. When you go home, you will need help taking care of yourself. For the first 4-6 weeks, you will be instructed not to lift anything heavier than a phone book. It will probably be 2-3 months before you are ready to drive and probably 3-6 months before you are ready to go back to work. For some patients the rate of recovery is faster, for some slower. It will depend on how ill you are before your transplant and whether you have any complications.

And Nancy's Big Question is ........ WHEN CAN I TRAVEL/CRUISE AGAIN ?????????

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!