Clean up surgery

I wrote to you yesterday while in a holding pattern... I saw one of my surgeons, Dr Franco, on Tuesday for my bi-weekly appointment and blood work and he decided it was time for the catheter to come out....Not that the collective *we* didn't want to take it out earlier.....say, while I was in the hospital for a week?????

Well, that was the week that I had the liver biopsy and my pretty appendage, i.e. hematoma appeared refocusing all the efforts of that stay on what to do about the hematoma, had the bleeding stopped? and what about that clogged bile duct??????

They couldn't have cared less that the catheter that I no longer needed was still coming out of my chest. Let alone keeping me from a full shower that I so greatly desire.....Not having had one since the morning of my transplant...(I do bathe, but it consists of hair washing in the sink followed by a hand shower or bath avoiding the upper torso... OR, dressing myself properly with a bra and all....forcing me to wear baggy, boob hiding tops....(you girls know what I mean).

The photo of the catheter I had Joe take after a bath one day so you could see what I had been talking about. It was always wrapped up and covered with clean bandages....because it is an open line directly to my arteries we had to be extremely careful to keep it clean, dry and covered at all times because of a chance of infection. An infection in my blood stream .....well, wouldn't have been any fun...

Anyway, on Tuesday we scheduled the catheter removal to be done under anesthesia.... I guess he thought I had gone through enough and didn't make me go through the removal under a local and some sleepy time anesthesia which doesn't work to well on me..and at the same time clean out the hematoma.

I got to the hospital at 9:30am.....courtesy of Mary, THANK YOU AGAIN, MARY....and I finally went into the OR at about 3pm for less than an hour while Dr Franco cleaned me up and I was home that evening...

I go back tomorrow for a recheck and some more blood work... I will share that with you tomorrow...hopefully my bilirubin is continuing to drop. it was 2.3 yesterday. My yellow is continuing to clear up...and I will have more energy as it clears up.

By the way, I had my 2 month liverversary on the 16th!

And I do promise to start posting with pics about the actual transplant experience...I was going through some photos tonight...

This visit is over....

Sorry that I didn't write yesterday...I was a little down in the dumps as they had told me that I might have to have surgery to clean out the hematoma and stop the bleeding that they thought was still happening. My hemoglobin had dropped so they gave me a couple of units of blood and wanted to wait one more night to see what happened. It looks better but is still very uncomfortable and somewhat painful.

Today they gave me my walking papers..so, I am in the process of getting out of here!

Oh, and we were 2 miles from the earthquake center last night of a 4.5 in San Bernardino.... That was fun!

I have been working a bit from here and am ready to get back to life.... On the 16th it will be 2 months! Oh, and between the heaviest I weighed in here with all the fluid and now I have lost 70# !!! Yes, that is right SEVENTY POUNDS IN 4 WEEKS..... It is quite an amazing diet plan..

And I should be able to drive soon!

Thanks for all your support and notes while I was in here.....They really made me smile and kept me going! We are going to have an 80* weekend here in So Cal so I am off to enjoy it....and the haagendaz bar my nurse, Carl, brought me last night!

Day 6, here I sit...

On Friday I thought I was coming in for a lab and Dr appt....Then maybe an overnight stay....6 days later I am still here. You can't say they aren't cautious with me and my new liver.... Which is a very good thing. I really am growing quite fond of it and would like to stay together for a long time to come!

Do I talk to my liver? Yes, I do. I have had conversations with it since the beginning....Asking it to please stick around for awhile. I promise it I will take good care of it and take it some lovely places.

I want it to grow old with me...I also pray for and thank the donor and the donor family each morning and night. More on this later....

On to today's update...

Yesterday they decided NOT to do the ERCP as I would have to lie on my abdomen for 30 min and they were afraid that there could be more bleeding in the hematoma area. So they did a MRCP.

Magnetic resonance cholangiopancreatography

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MRCP image of two stones in the distal common bile duct.

Magnetic resonance cholangiopancreatography (MRCP) is a medical imaging technique which uses magnetic resonance imaging to visualise the biliary and pancreatic ducts in a non-invasive manner. This procedure can be used to determine if gallstones are lodged in any of the ducts surrounding the gallbladder.

MRCP is a less invasive alternative to endoscopic retrograde cholangiopancreatography (ERCP) in the diagnosis of biliary and pancreatic duct disorders. However, while ERCP can be both diagnostic and therapeutic, MRCP is purely diagnostic; direct intervention is not possible with MRCP. An important advantage of MRCP is that cross-sectional images can be obtained, displaying not only the ductal system but also surrounding parenchyma; this allows direct visualisation of pancreatic neoplasms and other diseases.

So, they took me down to the MRI machine...Somehow in all my pretransplant stuff I missed this machine... 45 minutes in a hot tube....wow... I made it and today got the results that along with the biopsy it does look like my bilary duct has strictures causing the bile to not process well.

So I am off to the ERCP today so they can clear it up.

They originally wanted to do the ERCP so they could diagnose and treat it at one time...My bleeding and lovely hematoma made them rethink that.

So, at 3pm today I get to go lay on that ugly purple thing...

I debated over putting the photo on..I don't want to gross you out..What do you think????

Photo's or no photos? Remember I am getting ready to post about transplant? (no, I don't have any actual photo's of surgery! LOL....Send me some comments!

Talk to you tomorrow....

While I was sleeping...............

After they figured out I was having problems with my bile ducts draining and I prepared to have them do the lovely proceedure the next day this popped up while I was sleeping!

I rolled over on my right side for about an hour and woke up with the swelling to the left....felt like a big mango shoved under my skin....Then over the night it changed to the photo on the right. They did an ultrasound and it is only a hematoma. There had been bleeding of the vessels under the skin and this was the result.

It was so full and there was/is so much pressure that it has been extremely painful which hydromorphone (Dilaudid), took care of.....

I feel better today and will go get my ERCP today.... I have to spend 30 minutes on my stomach which should be interesting!

Have a great day everyone!

Ok, they have come to a conclusion

The conclusion they came to was that it isn't rejection but a bilarary duct stricture.

I don't have a gallbladder anymore as they take it with my liver and they don't transplant the new liver with a gallbladder and if you read below you will see all about the bile ducts and how they work....Mine appear to need a little help draining and so they are going to go in endoscopically (down my throat) and into my pancreas to have a look, and probably put in a stint so the bile can drain properly.

The biopsy showed this and also my rising bilirubin...up to 5.4 today...from 4.4 yesterday.

INTRODUCTION — An endoscopic retrograde cholangiopancreatography (ERCP) is an examination of the gallbladder, pancreas, liver, and the ducts (tubes) that drain these organs (show figure 1). Small ducts from the gallbladder and pancreas flow into a larger duct that drains bile from the liver (common bile duct). The common bile duct drains into the small intestine through an opening called an ampulla.

An endoscopist (a doctor who has special training in the use of endoscopes) will examine the gallbladder, pancreas, and these ducts, looking for blockages, irregularity in the tissue or disruptions in the flow of bile/pancreatic fluid, spasm of the ducts, stones, or tumors.

Some patients are admitted to the hospital afterward, depending upon the reason for ERCP or because a treatment was done during the procedure that requires overnight observation in the hospital.

THE PROCEDURE — ERCPs are performed in a room that contains x-ray equipment. The patient will lie on an x-ray table during the examination. The ERCP will be performed while the patient lies on their side or stomach.

Although patients worry about discomfort from the examination, most tolerate it well and feel fine afterwards. Medications will be administered through the intravenous line. A plastic mouth guard is placed between the teeth to prevent damage to the teeth and scope.

The ERCP scope is a flexible tube, approximately the size of a finger. It contains a lens and a light source that allows the endoscopist to view images on a monitor where it is magnified many times so the endoscopist can see small changes in the tissues. The ERCP scope also contains channels that allow the endoscopist to take biopsies and introduce or withdraw fluid, air and instruments.

The patient will be asked to swallow the tube; many patients do not remember this after the medications have taken effect. Many people sleep during the test; others are relaxed and generally not aware of the examination.

The scope in inserted through the mouth, and air is introduced to open up the esophagus, stomach, and intestine so the scope can be passed through those structures and to allow the endoscopist to see. When the scope reaches the duodenum, the first portion of the small intestine, the endoscopist will locate the ampulla, the opening into the ducts that drain the biliary system. A small cannula (tube) will be placed into the ampulla and, dye (a special contrast material that allows visualization of tissues by x-ray) will be injected through the cannula.

Patients may experience a mild discomfort as air distends the tissue. This is not harmful and belching may relieve the sensation. The endoscope does not interfere with breathing. Taking slow, deep breaths during the procedure may help a patient to relax.

The length of the examination varies, but it generally takes at least one hour.

For more information go here....

While this is not fun....it is better than rejection. As you may remember I PERSONALLY HATE THE ENDOSCOPY PART because the meds don't knock me out and I gag the whole time...BUT, I am peeing...and my creatinine is down and all this seems minor to what I have already been through.....so it will happen tomorrow.... Then watch my bilirubin #'s go down.....!!!!!

Liver Lab Tests

Here is a new link that I added to the *links* section

Here it is..... http://janis7hepc.com/labs1.htm

(Where is his mask?????) teehee

Just as I was going to start the story......

I started not feeling so well. Not sick, really.....Just not well... A little nauseous, itchy, head aches, fatigue like before, loss of appetite.... I was peeing alot but worried about my liver and what the blood work would show on Friday. When I came in for my appt.......Good news first? My creatine....(kidney function #'s) were MUCH better! from an all time high of 6 something to 2.7 last week to 1.6 last friday.... .8-1.2 is normal..... BUT,

my ALT and AST had tripled since last week. Not a good sign. The wonderful Dr's held a pow wow and decided that I needed to stay and run some tests to find out exactly what was going on.

So far I have had an ultrasound of my liver to look at the arteries, portal veins, etc. and they are clear.... They have run all kinds of blood cultures, urinalysis, and stool. Today they did a biopsy of my liver. We will know the results tomorrow and I am having some kind of MRI type scan to look at my bilinary duct.

These are what the Dr's are looking for:

1. rejection.....see below

2. an infection

3. bile duct constriction

So, I wait...... We will know more tomorrow......

Enough of silly holiday movies.......on with the medical drama

Back to the Urology report.....Bet you didn't think we would be talking about that here....but thank you for rooting for the kidneys here..........

Tues, I peed 700 mls even with dialysis...
Wed, I peed 800 mls....
and CHRISTMAS DAY I crossed the line and peed 1100 mls !!!!!!

All this while maintaining the same weight....and drinking a bit more....which means I am not storing it..... My body is processing it and my kidneys are on their way back.... Oh, and my creatinine is down from 3.1 last week to 2.7 today. Also, my Bilirubin was a bit further down today too.

So, I call LLU today....You have to LOVE unit 4100 who allows you to call them on the unit when something changes and get direction and help right away...They told me to come in and do some labs and when we got there and walked into the unit. My hepatologist was there, my surgeon was there, the nephroligist I saw in the hospital was there along with all the nurses, coordinators, and wonderful others.....

Now, they weren't there to see ME, they all just happened to be there rounding, etc and caring for the in house patients. But, they did all make time for me, cheer me on, change some appt's to earlier and decided that I should skip dialysis until they see me again....

So, until Tuesday I will keep monitoring my weight, fluid intake and out cross my fingers and thank Santa (and a few others)..... I personally think God just thought I needed to experience some of what the kidney patients go through.....and know that I certainly didn't want to live like that or head down another transplant path. I certainly have much more understanding and compassion for people living with kidney failure.

Funny how a few months ago I was complaining about having to find a potty off every exit while on Lasix to this..... :-)

I also want to point out.....not for myself but for other patients and caregivers.....The Dr's only took me off dialysis for now, etc....which I wanted them to do to force my kidneys to work because I kept good records of what was happening at home...measured everything, kept copies of my recent blood work, etc....Marched down there the day after Christmas for a 2 hour drive, etc.....You are your own best advocate....Do more than you have to....

Exit Day!

I just had a visit from my Surgeon, (on of them) Dr Franco.......And he gave the official word that I can go home today.....There was some concern this morning that they may want to have kept me over the weekend for various recent events.....but I wanted to let you know that I feel better each day....They are getting the fluid off with dialysis and fluid restriction, slowly but surely. My kidneys still aren't functioning... I will tell you more about that later....They have good blood supply and the hopes are still for a full recovery with them......My liver numbers are still a bit higher than they would like.....but things are well.

I should be home by tonight.......

Talk to you then!

My liver and I have been together 3 weeks tomorrow!

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

Update on my Heart - Ejection Fraction Rate

I went it for my 3 month appointment with Dr Mendler and we had a lot to talk about. I had a lot of testing done in the last couple of months.

One thing we talked about was my heart. I told you that I had a DSE or dobutamine stress echocardiogram. I won't go into the test here but the results.

GOOD NEWS!!! My Heart is better than a year ago! My heart function that they look at *the ejection fraction rate* is as I understand it a way to rate how strong your heart muscle is as SQUEEZING the blood out when it is supposed to. Last year it was at 60% Lower part of normal….now it is at 70% the high end of normal….So that is great news….and will help me get through surgery…..

"A normal ejection fraction is between 55-70%. A year ago you were at the low end of normal, and now you are at the high end of normal." Says coordinator Kara......

This is from NURSE EXTRODINARE and one of my very best friends, Michelle....

"Very good. It can be the difference that makes all the difference.

Your heart has to overcome a complete overhaul of the pipes in your vascular system. The new liver does not talk with your heart and brain like a normal liver and so your body cannot tell your new liver to loosen up and let more blood through. Sooooo your heart has to just be able to PUSH to get the blood through...

..and now, your heart has more ABILITY to PUSH.. It's a VERY GOOD THING."

And here is the technical stuff ::::

What Exactly Is EF, Anyway?

You really have to follow this to understand what's going on with your heart. Come on, it ain't rocket science! Your heart circulates blood through 2 separate systems. The two chambers on top (atriums) are receiving stations for blood. The two lower chambers (ventricles) are pumping stations.
Your left ventricle forces oxygen-rich blood into your arteries, which carry it throughout your body. The blood returns to the right atrium, which passes it down to the right ventricle. The right ventricle pumps this blood to the lungs, where it picks up oxygen. Oxygen-rich blood then returns to the left atrium, which dumps it into the left ventricle, and the cycle repeats. Valves between the chambers prevent "backwash."

When the left ventricle contracts, forcing blood out into the body, it's called "ejection" since it is "ejecting" the blood out into your arteries. Since the big pumper on the lower left is the one that pushes blood throughout your body, that is where they usually measure heart function - the left ventricle.
That's the "ejection" part. The "fraction" part is because that pumping chamber (the left ventricle) never quite manages to pump out all the blood inside it - there's always a little bit left behind that lies around waiting for the next contraction. The amount your left ventricle does pump out per beat is called the "ejection fraction". It's X% (the amount pumped out) of the total amount of blood in the ventricle per heart beat.

Gimme a Number!

If your heart pumps out 55% or more of the blood in your left ventricle on each beat, you have good heart function. When it falls below 55% on each beat, you're slipping. That means your heart muscle is too weak to force as much blood out on each contraction as it should.

The ejection fraction is the amount of blood pumped out with each heart beat and is a measure of the heart's overall capacity and function. A normal ejection fraction is between 55 and 70%. Damage to heart from heart attack, heart muscle disease, or heart valve problems can contribute to a below-normal ejection fraction.

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!

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.......

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!

My Big 2 month Dr Appointment, minus the Doctor!

Last Tuesday I had an appointment with Dr Mendler. My lead Dr and Hepatologist at the Transplant Center. I only see him every 2-3 months only this time I didn't even see him!

I went armed with my carefully written questions but feeling good and waited a long time to be called in which is unusual in this office.

I was greeted by his Nurse Practitioner who I thought was doing a thorough pre Dr check list. Come to find out they were so very busy that apparently that was the extent of my appointment. My appointment with her was very thorough and she was able to answer my questions. She did an exam and we spent about 30 minutes together. I have seen her before and like her. I guess I am doing well enough that Dr Mendler didn't feel he needed to see me unless I requested it. I had just seen him a few weeks ago when he did my endoscopy so I elected not to wait for him.

Anyway, all is good.....and they say.......................*anytime*.........

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.

Monday, Monday......

Had a great day today! I was up early to do some work and get ready to leave early for my trek to LLU to see Ben, the social worker. What wasn't to love. I had a lot of energy, felt good, weather was incredible.

My appt with Ben went well. He said that I don't need to see him again unless I need to talk to him about something.

He wants me to participate in the support groups more often. I have been wanting to do this. They are every week and very well attended by both pre and post Transplantee's. Very informative and supportive. I have planned on attending many but so far whenever I would have on one my agenda sandwiched between other Dr appt's on those days...Well, the Dr's appt's ending up taking more time or they need another test or something and the support group gets bumped.

Did a little window shopping at Victoria Gardens.

Came home and jumped on the computer to check on some client's upcoming cruises then made a yummy, quick dinner of Mahi-Mahi, broccoli, fresh pineapple and some left over potato's.

The mahi-mahi, you have GOT TO TRY... I got it at trader joes in the freezer section. 2 ample pieces were $5.00 and came marinated. I just defrosted them and put them in the oven for 10 minutes...DELISH!

Tomorrow I am back down the hill for the appt I have been waiting for since before Christmas. The Cardiologist. My hope is that he just says everything is a go and doesn't need anything else. We will see.

By the way.....Thank You to all of you who came looking for me when I disappeared a bit to long! I appreciate you all keeping an eye out for me!

I am off to bed.
Have a great day tomorrow and I will let you know what the good Dr says tomorrow night!

Understanding the MELD score

MELD score. Model for End Stage Liver Disease ..... it's all about the MELD

I got this off a support group I belong to in case you are interested. Basically the MELD score components are Bilirubin---Liver, Creatinine---Kidney function and INR, how well your blood is clotting.

The Meld score is a fair system. It is based on how long the person has to live without having a transplant done. They can tell this by the bilirubin level, creatinine level, and also the INR level.They have, in many places, added the sodium level to this.Bilirubin is converted by the liver into a soluble form and the liver also makes factors to keep the blood clotting which signify the INR level. So they are looking at the function that the liver does. The creatinine is a by product of using our muscles. The kidney normally removes this from the body. If the kidneys are having a problem, then this level will raise in the blood. The sodium is being watched more closely because of patients being put on a low sodium diet basically because of Ascites and edema forming. Sodium is one of the electrolytes of the body that keeps our hearts beating in rhythm. So it is very important.The Meld score starts at 6...these people are pretty well yet and have a long time before a transplant is needed...some even go off the list____the highest is 40...these people are very sick and may need a transplant in a few days otherwise they may go into a coma or become to sick to withstand the surgery. If your tests results show that you are getting better, you will go down the list...as you get sicker, you will go up the list.

People who are on the list, usually have a contact to be sure where they are located on the list.

Then until Now

After Christmas we all went back to our various corners and we spent a quiet New Years at home this year. The last several years we have made a point to do something special and really celebrate but this year we decided on a quiet one at home.

I have had more Dr's visits including one to the big guy at the transplant center, Dr Mendler. He is my lead Dr in all of this and I haven't seen him since my first appointment and the transplant center a couple of months ago. Basically he told me that I will be listed as soon as he gets clearance from the heart institute. I was under the impression that my case would have to go back before the committee but he said, no. I was ready to be listed as soon as next week if he gets the OK.

Well, Joe was with me for this appointment and we were both excited and apprehensive all at the same time...Let's just say the butterflies came out to say hello.

Dr Mendler is a very quiet Dr. He is very thoughtful, analytical and doesn't talk much. You can tell there is way to much going on in his brain. I have a lot of trust in him and like him you just need to be ready with your questions as he is very busy. Like a lot of specialists he speaks his own language and you need to know some of it to communicate and ask the right things.

He seems pleased with my health otherwise. The cardiac issue seems to be whether or not my heart can withstand the grueling surgery. Some previous stress tests that they put it under seem to still indicate some questions in that regard.

The other issues that are common for cirrhosis patients are:

Ascites: fluid in the abdomen which can get huge like a pregnant belly (seriously...belly button pops out and everything) and would have to be drained.

Encephalopathy: where the ammonia builds up inside and causes dementia of various degrees from mild confusion to convulsions and comma. Everytime I can't remember where I put my keys I freak a bit.

Varicies: enlarged veins in the throat area that can cause acute and deadly bleeding if ruptured

Kidney Failure: we won't even go there............

Loss of appetite, weight loss and mal nutrition. Doing OK there...in fact, note to self, start watching the ice cream intake!

Those are areas that we are watching for very closely and so far so good. I am on medications to help prevent them but it can get past the point of the meds not stopping what the non-functioning liver can do.

THE GOOD NEWS IS:

Dr Mendler said that once I am listed because of my blood type, body size and my high MELD score...(still 25) that he anticipates a new liver could come my way within 2-3 months. !!!!

Now, that is, if one presents itself and of course no one has control over that. But they are transplanting my blood type at Loma Linda in the mid 20's. (Each transplant center differs depending on how many are listed with different melds and blood type)

BUT, OMG!!!!! Hence the butterflies appearing.....scary and exciting. I didn't know whether to run or jump up and down!

I go see the social worker tomorrow and the cardiologist on Tuesday.

Side note:

People keep asking me when my transplant is *SCHEDULED* Have they NOT watched ER????? and seen the helicopter land and Dr Hotstuff jump out with the igloo with the organ in it??????? Another one that hits me funny everytime I hear it......