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

2008 was quite a year!

I am certainly looking forward to a New Year of my new liver and I getting to know each other settling in so we can have years of fun and a long, healthy life together.....


Thank you all for listening to my ramblings, fears, stressing, obsessing and triumphs as I struggled through one amazing year of my life.

Thank you for all the support, cheering me on and most of all listening to me.

I have learned so much, so very much. From my family, friends, (online and off), my cruise buddies, my support group, my Dr's and health care providers and other cirrhosis patients and caregivers.

I KNOW there is a reason that I was chosen, if you will, to have this disease, to live with it, to deal with it, to learn about it and to come out the other side with a successful transplant, to learn how to live with all the things that come with that.

I have learned a lot about myself, about compassion of others, whatever they are dealing with, about patience with people and life in general. I have learned to take responsibility and take charge of the things you can, learn as much as you can, ask lots of questions, sort out the answers, do what you can and then enjoy everything you can while you wait..... because in reality you don't know what could be just around the corner.

Enjoy the warmth of the sun, the way your dogs run through snow when they live in the desert, Enjoy watching people open up about things they aren't really proud of and leave them feeling that you care about them even more for sharing because we don't judge them for past mistakes. We all have them. Watching your son struggle to become a man and your husband take care of you in a way he never thought he would have to, and smiling the whole way..........

No matter what my health brings in the future......good or not so good, I will handle it as best I know how and continue to try and reach others about the facts about what liver disease can mean to their lives and how to avoid it if it involves making a choice. Particularly to women who drink.........How I wish I had listened earlier when I had a choice before cirrhosis set in. Although I accept the journey I have been on, it certainly isn't one I wish for anyone....... A few vodka tonics less or skipped that bottle of wine...............well, I might not be telling the story I have been telling you all year or will be sharing with you shortly...

I will always support and share with fellow liver patients who are living with cirrhosis and have all the questions that I had about what is next??????

and finally I will fight for a better way for this country to deal with organ donation and allocation so there are enough organs available for people that need them. Be it a Liver, a Kidney, Lungs, Heart, Tissues for Burn Victims and Corneas so people can have sight. There are several options that are good ideas and it will take a lot to change the current M.O. But there has to be a better way.....Until then PLEASE Don't take your organs with you, HEAVEN KNOWS WE NEED THEM HERE.... and make sure that after you sign up, you tell your loved ones of your wishes.


In Fact........This is part of a document that you should read.....I had read these facts before but it hit me harder how lucky I was to get ONE of these organs....The odds were totally against me and everyone else waiting.....

A national crisis exists because of the critical demand for organ donations that is currently needed for over 100,000 gravely ill individuals on the national waiting list. While that number grows daily, a person on that list, or one who was removed because he/she was too sick dies every hour. In addition, over 2.5 million Americans die annually, but only a total of 14,400 living and deceased persons donated organs last year. ( From UNOS Facts 2008 )

Then when it crossed my mind more than once that I could be waiting for a kidney soon as well. Let's just say I wasn't very excited at the prospect. Here is a link to the entire Assembly Bill, The Organ Donation Enhancement Act.

I expect, hope and pray that the years to come will be wonderful for all of us! There is a lot to do, a lot of fun to have, love to share and people to share it with....

Stay Healthy and Don't forget to LOVE YOUR LIVER !!!!!

All the reasons you might need a liver transplant

I thought you all might find this interesting...............................

Reasons for Liver Transplants

Liver Diagnosis Categories	Liver Diagnoses
NON-CHOLESTATIC CIRRHOSIS	Laennec's Cirrhosis (Alcoholic) Laennec's Cirrhosis and Postnecrotic Cirrhosis Cirrhosis: Postnecrotic--Type C Cirrhosis: Cryptogenic--Idiopathic Cirrhosis: Postnecrotic--Autoimmune-Lupoi Cirrhosis: Postnecrotic--Type B-Hbsag+ Cirrhosis: Postnecrotic--Type Non A Non B Cirrhosis: Postnecrotic--Type B and C Cirrhosis: Postnecrotic--Other Specify Cirrhosis: Drug/Indust Exposure Other Specify Cirrhosis: Postnecrotic--Type B and D Cirrhosis: Postnecrotic--Type A Cirrhosis: Postnecrotic--Type D PNC CAH
CHOLESTATIC LIVER DISEASE/CIRRHOSIS	Primary Biliary Cirrhosis (PBC) Sec Biliary Cirrhosis: Other Specify Sec Biliary Cirrhosis: Caroli's Disease Sec Biliary Cirrhosis: Choledochol Cyst Choles Liver Disease: Other Specify PSC: Other Specify PSC: Ulcerative Colitis PSC: No Bowel Disease PSC: Crohn's Disease
BILIARY ATRESIA	Biliary Atresia: Other Specify Biliary Atresia: Extrahepatic Biliary Atresia: Alagille's Syndrome Biliary Atresia: Hypoplasia
ACUTE HEPATIC NECROSIS	AHN: Etiology Unknown AHN: Type B- Hbsag+ AHN: Drug Other Specify AHN: Non-A Non-B AHN: Type C AHN: Type A AHN: Other Specify AHN: Type B and C AHN: Type B and D AHN: Type D Hepatatis C: Chronic or Acute Hepatitis B: Chronic or Acute
METABOLIC DISEASES	Metdis: Alpha-1-Antitrypsin Defic A-1-A Metdis: Wilson's Disease Metdis: Hemochromatosis-Hemosiderosis Metdis: Other Specify Metdis: Tyrosinemia Metdis: Primary Oxalosis/Oxaluria-Hyper Metdis: Glyc Stor Dis Type II (GSD-II) Metdis: Glyc Stor Dis Type I (GSD-I) Metdis: Hyperlipidemia-II-Homozygous Hy
MALIGNANT NEOPLASMS	PLM: Hepatoma--Hepatocellular Carcinoma PLM: Hepatoma (HCC) and Cirrhosis PLM: Cholangiocarcinoma (CH-CA) PLM: Hepatoblastoma (HBL) PLM: Hemangioendothelioma-Hemangiosarcoma PLM: Other Specify PLM: Fibrolamellar (FL-HC) Bile Duct Cancer (Cholangioma-Biliary Tr) Secondary Hepatic Malignancy Other Specify
OTHER	Other Specifiy Cystic Fibrosis Budd-Chiari Syndome TPN/Hyperalimentation Ind Liver Disease Neonatal Hepatitis Other Specify Congenital Hepatic Fibrosis Familial Cholestasis: Other Specify Familial Cholestatis: Byler's Disease Trauma Other Specify Graft vs. Host Dis Sec to Non-Li Tx Chronic or Acute Benign Tumor: Polycystic Liver Disease Benign Tumor: Other Specify Benign Tumor: Hepatic Adenoma

Policies | Members | About OPTN | Donation & Transplantation | Data | News | Resources | Text Based Version of this Site

Time to play Catch Up

Hello everyone....Ok, I am ready to play catch up....

It has actually been about 3 weeks since we talked. I think the thing that kind of stopped me in my tracks was that I had several friends who were in trouble medically. I just started getting to me a bit.

A few people in my support group have been going through some very rough times, including both the patients themselves and of course their spouses and families.

We had one person who had been in the hospital for about 5 months fighting for his life pass away. He got so close to being transplanted at one point they had found a liver for him, and as he was being wheeled into surgery his lung collapsed and they had to abort his transplant and put him on a ventilator which he was then on and off until he passed away. I saw him the day before he died. He was about my age.

There is David and his wife Sharon who I have posted about and you have the link to his blog in other posts that I worry about and pray for daily.

My friend Corina and her husband Frank. She had a stroke unexpectedly about 2 months ago and has been in and out of the ER and hospital as she tries to recover from that.

Sweet 6 year old Annika, who I only know from her blog, going in for her 3rd liver transplant last week.

Anyway, you get the idea...............It is of course them and not me who I am concerned about but I think I just felt I wanted to shut down and shut it all out for a bit.

Joe and I have been doing a bunch in the past few weeks though as well and I want to share those things with you too....

Let's start with the escape cruise to Cabo shall we???????

donorcycle: The Real 24

This afternoon I recieved an e-mail from a fellow blogger, a recent kidney recipient in Austrailia. How I LOVE getting mail from my readers. Makes my DAY! His blog is The Ballad of Bill the Kidney Funny, maybe Bill the Kidney is friends with BillyBob the Liver. tee hee... (see the blog list)... This is what John had to say about the Real Life...............

Nancy is an American cruise fan who is working towards a liver transplant. Her blog is very out-there and well worth reading.

Anyway, one thing leads to another on the web and next I found a Blog called Donor Cycle written by a Transplant Coordinator. Both very good reads.

I am going to add them to the blog list below and wanted to post a couple of articles written by TC.

The first is an article that tells a story of one day in the life of:.... as he goes through a process of the day of an organ donation. A liver...

donorcycle: The Real 24

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.

photos of fun symptoms of cirrhosis

I thought I would post some photos of things I found on the web to visually help you understand some of the MOST COMMON symptoms that we liver patients suffer. None of these are of me or anyone I personally know but they sure could be including the upside down pug peeing on the tree! LOL ( I really need to post some pictures of my pug and bulldog!) The photo of Salt is a description of what we CAN"T have or we end up looking like the people swollen with edema (legs) or ascites (abdomen).














The person with Jaundice really does look like the color I used to have and to some extent still do. People think I am *tan* although my eyes are still very yellow. At least I don't scare people now!











These are all very real. And common. And as a matter of fact some are mild, considering how bad it can really get. I have had variations of all these and have many friends who have varying degrees of them.

So, this is the deal. When we say we are tired.... we ARE. IT IS A SYMPTOM. It isn't like when YOU are tired...not a bit. We can't help it....It just is. Don't tell us to get up earlier, to go to bed earlier, to get some exercise, to eat better. Although those are all good things to do...Those are not our problems and they aren't going to fix the SYMPTOMS.... They are REAL symptoms of a very REAL disease. OUR LIVERS AREN'T WORKING CORRECTLY....

When we say that our feet are swollen....or we need to watch our salt. It doesn't mean we need to take off our shoes, and they will be better the next day... When we gain 5 # in a week......we are worried that our bellies will look like the one above soon and the Dr's will be sticking needles in us to drain liters of potentially dangerous fluid off. over and over again....

When we say we are cold...we don't need a sweater...(well, that could help!) But we are FREEZING not because it is cold (it could be 100* outside) but because our internal thermometers are broken...

When we are constipated...(sorry, no photo's of that one!) We are afraid if we can't go to the bathroom our toxins will build up to a point as to cause confusion, delirium, and even a coma because our ammonia levels get to high. This can also make us very, very sick...as in vomiting from to many toxins in our body. (Encephalopathy).. It doesn't mean we need to eat more fiber. it means we need to take our LACTALOSE!

When we need to PEE, get out of the damn way! WE DO AND NOW!

When we are having trouble swallowing we could be having our veins inside our esophagus be filling up with blood so much that they pop open which would be a life threatening emergency as in BLEEDING TO DEATH...It happens...ask any ER nurse.

When we say we can't eat or aren't hungry. It is literally very hard to even get a bite down...Give us *ensure* or some kind of high calorie, high fat food. ice cream, anything...just get some nutrients and calories in us...

CRAMPS, another of my favorites...... We get these very interesting, sudden, crippling cramps! The first time it happened to me I didn't know WHAT was going on because it seemed so unrelated. The mostly happen in our extremities, shins, calves, feet, hands, fingers and lower arms. They happen swiftly, without warning, very intense and in weird places. In muscles like your shin or on the top of your food. When stirring a pot or writing your hand suddenly becomes twisted and deformed and it HURTS LIKE HELL. They aren't like the cramps you have had so don't even try and relate....(take quinine tablets or drink tonic water. I keep a bottle around and chug it.. warm heat helps too)

The reason I thought I would post this is for a couple of reasons...

One is to let others suffering from these symptoms to know that they are common and YES, they are real. They happen to all of us.. It is helpful to know that they are related to your disease...(that is what a support group is for!)

The other is for friends, family and caregivers to know that they exist, are very real, and that you REALLY can't relate. As much as you think you do. You don't. You can't unless you too have had liver disease. (that is what a caregivers support group is for..)

We don't want to whine, complain, try to tell you how bad it is......We really don't want to.....But we do want you to know that they are real and just please be kind and gentle with us when we need a nap, need to put our feet up, need to take a hot bath, or need to get support and knowledge from online groups, face to face groups, read books, talk to other patients, etc. It helps us. Lord knows it has helped and continues to help me!

A Liver Transplant Patient Guide published by USC (University of Southern California)

This is a Patients Guide to Liver Transplant by USC available on their website. Here is the link.

Joe found this in looking for anatomy on what exactly happens surgically during a liver transplant. I had asked him to help me find out what exactly the surgery involves and this is the best information we have found so far. An amazing resource!

Speaking of alcohol. Here is some of my story I haven't talked much about.

Since we are on the subject of alcohol. I haven't really spoken much about how I got in this predicament of needing a new liver.

I was answering a letter today by a friend regarding alcohol in her life and the fact that she was having high liver enzymes show up in her blood work which resulted in some further testing, (an ultrasound and a biopsy) that showed she has fatty liver. She is my age and our drinking habits over our lives have been similar. She wrote and asked me a couple of questions and as I started answering here I actually wrote a *book*..... Well, it was a long answer to some brief questions.

When it comes to my drinking history, my disease, and my obvious regret to not heeding the warning signs that were there if there is anything I can give back or help give people an awareness of who are at risk I want to help them with the truth.

My Doctors never gave me *THE TRUTH* about what I was facing. It was all pretty sugar coated. *You should think about cutting down,,,,,,,blah, blah, blah,,,,,,,, and never really telling me what might happen to me if I didn't stop in time. I didn't know the difference between high liver enzymes and anything else. They never mentioned the word cirrhosis or what end stage liver disease is like.... nothing. I truly think if someone had taken the time to explain the consequences of NOT stopping I would have at least had a chance to make a different choice and my path could have been completely different.

Here is my response to her. I now have over 400 readers around the world, (check the map!) and if what I have to say helps one person........then the blog will all be worth it..... That and helping people realize the need to make the effort to go to donate life and become an organ donor.

I am glad that you took my e-mail as it was intended. One thing that I want you to know is that I am NOT at all judgmental of you or your drinking and that I will always be honest with you. I am worried that you believe that you have fatty liver because you are overweight or *obese*, which is an absurd word…. Some extra weight might not be helping but I don’t believe it is the cause of your fatty liver. I also don’t think the Dr’s are always straight shooters because they like to skirt around the alcohol issue or just say to you…*don’t drink*. Mine said… *go to a meeting if you have to*, like that was an answer to anything! I know that my cirrhosis was caused gradually by my drinking habits which started when I was around 16-17 and was part of my social life from then on. Neither I nor my friends or family considered myself *an alcoholic* or did I have trouble with shaking, vomiting, or any of the other nasty problems with the exception of the year or two prior to my hospitalization when it was to late. I am certain my liver was cirrhotic by then. My problem was I was a *daily* drinker. Not every day, but most days. Like you, in the evenings, weekends, vacations…..well, you can drink all day on vacation, right? Is it noon yet? Ever heard of a mimosa or a bloody mary? LOL….I could pretty much fit alcohol into any social situation appropriately. No one thinks twice when you have a tropical drink in your hand on vacation… right? and Vodka seems to go with everything and don't we all consider wine ok? It all seemed very normal to me. So, it was the ONGOING assault to my liver as the weeks, months and years past that was my livers demise. With all the research I have done since I found out I was sick I have determined that alcohol is harder on women, it is harder when we don’t give our livers breaks….so even if it is just a little but on a frequent basis……..that is a huge problem… *FOR YOUR LIVER*, it may not be a problem as in affecting your day to day life….but could be advancing your liver disease and you wouldn’t even know it. Liver disease, doesn’t hurt, doesn’t make you *sick*, (until it is too late and cirrhosis has kicked in). My Dr’s are telling me that I have a 50/50 chance of surviving 5 years if I don’t get a new liver soon. A 50/50 chance???? I am not very happy about those odds. So my advice to you, as hard as it is for me to give it to you is to NOT drink, AT ALL. You are not doing yourself or your family any good by quantifying it by saying * I only drink this or that…….* Your liver doesn’t know the difference. It is a toxic substance that is very, very hard on it and it is throwing up warning signs IF you will listen to it. I know the thought of not drinking at all is daunting. I couldn’t imagine my life without drinking. Joe and I will be celebrating our 25th wedding anniversary in a couple of weeks and I told him….Can you believe we won’t be drinking a great bottle of wine with our dinner celebration????? Doesn’t seem right. But it just is, now and from now on. Which is fine with me. I really like life without alcohol! Who knew???? If you have the opportunity to stop your liver problems now, and you do, you should take that opportunity and thank God he gave you the warning signs that many of us didn’t get. I so wish I had a biopsy when my liver was just a fatty liver and hadn't crossed that hard line in the sand of cirrhosis. I stopped with the help of SMART RECOVERY. And a drug called naltrexone. I believe that alcohol affects our body and brain is certain ways after years of use. Our body is USED to operating with it and it feels normal to us. What naltrexone does is basically put *coating* on some pleasure points in our brain that make us like alcohol. (That is the short version.) You can drink on naltrexone. It won’t make you sick like antibuse. You just do not enjoy it. It is very weird. I had heard that and tried it…While taking it I tried to drink a glass of wine that would normally have been gone within 45 min and 2 hours later there was still ½ in the glass. I just didn’t want it…. When I really decided to stop totally I drank the day I planned on stopping, took my first dose of Naltrexone that night before bed and didn’t want any alcohol at all the next day and haven’t had a drop since! I was ready to stop, it just helped my brain from wanting it…it is a physical addiction, like cigarettes, and also some of us are just pre disposed to not being *real social drinkers* which by the way drink a couple of times a year at a wedding or on a vacation, etc. NOT ON A REGULAR or DAILY BASIS. Woosies…lol. www.smartrecovery.org http://www.assistedrecovery.com/beta/cbt.htm . I know it was the help I needed to stop my addiction. Re read the article I sent you. Especially the part regarding women and the progression of the disease. Right now you are still in a position to reverse the effects of alcohol. As always if there is any way I can help or encourage you or you need an ear or shoulder you can count on me. Maybe you should come see me when I am in ICU recovering from transplant with dozens of tubes coming out of me and the stapled torso where they cut me open to put my new liver in, spend time with me for the months of recovery and live with a compromised immune system for the rest of my life because of all the drugs I will now have to take and then ask yourself if the evening cocktail or 2 is a good idea.

Very sincerely yours,

Nancy

Interesting website on Pre Transplant evaluation work up

Pre Liver Transplant Work up

Very good photo's and explanation of required tests and procedures required for qualification for listing with UNOS.

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!

New York looks for ways to increase organs available for transplant!

June 1, 2008

City to Explore a Way to Add Organ Donors
By CARA BUCKLEY

New York City is pioneering a potential solution to a supply-and-demand problem that has long vexed doctors the world over: how to meet a desperate need for donated organs without trampling on sensitivity surrounding the sanctity of death.
About a third of all donated organs are harvested from live donors. Nearly all the rest come from people who have been declared brain dead while undergoing treatment in hospitals. But thousands of people die at home or on the street, their organs almost never considered for transplantation even if they had filled out donor cards, because there is no system in place to handle it.
But with a $1.5 million grant over three years from the federal Health Resources and Services Administration, a team of medical experts and bioethicists is looking to expand the city’s donor pool by deploying a “rapid organ-recovery ambulance” to collect and preserve the organs of people who die of cardiac arrest. The plan — modeled on a successful program in Spain — is for the ambulance to trail regular ambulances that try to save people’s lives, then to swoop in if patients die and to maintain the bodies in stasis for several hours at a hospital, until family members can decide whether to donate the organs.
“I see this as a continuum for saving lives,” said Dr. Lewis R. Goldfrank, director of emergency medicine at Bellevue Hospital Center, who is leading the project. “To see people die every year who are waiting on organ-donor lists and people die who are potential donors, seems a mismatch between societal needs and societal values.”
Dr. Goldfrank aims to get the first organ-recovery ambulance in operation by year’s end in Lower Manhattan. If the project is a success and replicated in other cities, he estimated that the nation’s donor pool could grow by 22,000 people.
News of the federal grant was reported last month in The Washington Post and USA Today. Details are still being hammered out as Dr. Goldfrank and others meet with community and religious leaders to assuage public jitters.
“In our culture, doing things to a dead body without consent is highly controversial, even if it’s minor, even if doesn’t cause permanent marking,” said Dr. Arthur Caplan, a bioethicist at the University of Pennsylvania who is not involved in the program.
“There are a lot of Americans who have a hard time getting into a hospital because they don’t have insurance or they have poor insurance,” Dr. Caplan noted. “They will not necessarily find it a good thing when they find out that they can’t get into the hospital, but that a hospital will send a special ambulance to bring their body to the hospital when they’re dead.”
New York’s recovery ambulance is inspired by a donor-detection program started in 1989 in Spain, which now has the highest organ-donation rate in the world. In the past two decades, Spain has tripled organ donation to 35 donors per million people, significantly shrinking its waiting list. In the United States, there were 23 donors per million people in 2007, according to the organization Donate Life America, with roughly 99,000 people waiting.
But thousands of organs from would-be donors are never harvested because there is no system to quickly transplant organs from victims of cardiac arrest.
“There are times where a family member of the newly deceased wanted the opportunity to donate the organs, and in the current system they don’t have that opportunity,” said Dr. Bradley Kaufman, a medical director with the Fire Department. “The main goal of the project is to preserve the right for the family to make that decision.”
Dr. Kaufman said the new system would not affect resuscitation efforts, only what would happen if those measures failed.
A typical situation, according to several of the doctors involved, might unfold like this: Emergency services are notified that a person has gone into cardiac arrest. An ambulance is dispatched, and normal efforts are made to revive the victim. Unbeknownst to paramedics in the first ambulance, the dispatcher would also have alerted the organ-recovery ambulance, which would also head to the scene. The medics on the second ambulance would not get involved unless all resuscitation efforts were exhausted and the victim declared lifeless.
At that point, instead of transporting the body to a funeral home or the medical examiner’s office, the organ-recovery team would wait five minutes, then begin running fluids into the body to preserve organs and prevent blood clots. A medic would administer chest compressions to maintain minimal blood flow, and the body would be taken to hospital. Transplants would happen only if the next of kin agreed and organs were healthy.
A similar project, financed by the same federal agency, is under way at the University of Pittsburgh School of Medicine, though it will be limited to people who die in hospital emergency rooms.
“I applied for the grant out of my conviction that we can do better for dying patients,” said Dr. Michael DeVita, a professor of critical care medicine at the university. “I’m an I.C.U. doctor, and I want people at the end of their life to have the best care possible, for both the patient and the family. And that also involves enabling people to build a legacy that they can leave behind.”

Extreme Tiredness in Liver Disease

This was written by someone who was a caregiver for a cirrhosis patient prior to her transplant.

Tiredness is caused because the body is trying to heal. It is making adjustment (homeostatis) to try to do the functions the liver once did. The tiredness can be sudden and unforgiving. There is no choice but for the body to sleep.


There are poisons, or toxins, going into the blood now and building up causing changes in the way the body once functioned. Some of these poisons go pass the blood brain barrier and into the brain causing confusion. Medications and just the cirrhosis itself, can change the way food taste to the patient. Because of the build up of fluid in the body...especially in the abdominal area...this fluid puts pressure on the stomach and other organs; it also puts pressure on the diaphram making it difficult to breathe well.

The liver always made sure that the body had the nourishment it needed, that the special proteins where made, that the toxins were converted to non toxic substances, that certain vitamins were always available, that our food was broken down into simplier forms that the body could use and it even stored these for times when we did not eat. Add to this the emotional causes of this disease: wondering if there will be a tomorrow, wondering if those we love will be alright if we leave them, watching many of the dreams we had in life disappear, feeling guilty if we think we brought all this on ourselves, wishing things were different and hoping we don't become a burden to our families.

Now to the mental aspects. Because of the toxins going into the brain...we cannot think clearly and start to make wrong decisions. We don't see that in ourselves, it takes others to point this out. Suddenly, people may start to treat us like children and make all the decisions for us and start to tell us what to do, how to do it, and we wonder if they are joking or they are serious. AS you can see, this disease can take its toll on a person if they let it. Most liver patients with a disease like this one, are found to be mal nourished, not breathing well, depressed. They are watching all the things this disease can do to the body and they can look in the mirror and suddenly don't see themselves anymore. They look like a skeleton that is having twins. There normal color skin in now an orangish yellow. Their own body fluids are darker and their stools are so light. They may be taking on a feminine appearance. It is like living in a body that has come from another planet. Hello, Spock. I'm now a being from the planet Cirrhosis. Beam me aboard.


If a patient needs to sleep, it is good to do so. These sleep pattern changes are considered normal for someone with this disease. However, the caregiver should be sure that they obtain some sort of nourishment. Without nourishment...the body will not have energy to function or last. If they cannot eat, ask the doctor about supplements he recommends. Also ask about any vitamins they might need... however, these supplement drinks have enough for the patient. Always check with the doctor to be sure, as these supplement can contain things certain patients should not have...the doctor can tell this by blood work.

When the liver starts to deteriorate...the functions (of which there is over 500) go down also. Some organs try to make up for the load of work. The kidneys filter the blood so it is trying to adjust the sodium (salt) in the body also the potassium, it is trying to keep us from becoming dehydrated, it is filtering out the normal waste and is now adding onto that the toxins in the body that the liver no longer converts. It is becoming overwhelmed. If you notice, those who are placed on the transplant list...not only have their liver enzymes and liver functions being checked, but also their kidney functions. The liver goes into failure and the kidneys will shortly follow. Some patients may be placed on dialysis because of this...to try to help the kidneys.


When someone says cirrhosis, everyone thinks it is only a liver problem...that is not so...it effects many other organs also and it effects the body as a whole. Scar tissue does form in the liver causing the cells of the liver to die. The spleen can enlarge because of the back up of blood not being able to go through the liver and be rerouted into smaller vessels to try to return this blood to the heart. The stomach has pressure put on it from fluid build up. The heart has to adjust to slowed return of blood to it. The lungs cannot expand well with pressure up against the diaphragm and fluid can develop in them. The digestion of the food is altered since the bile may not be reaching the intestines. There is vitamin deficiency that develops and the homeostasis of the body become altered in many different ways. The mind (brain) becomes unclear because of poisons.


If you really look at Cirrhosis in the light of the entire body...even the skin is affected, you could say you have disease of the entire body. The hormones are changed, proteins are not made, the immune system starts to work overtime.


By the way, anyone who has cirrhosis should see about their teeth and also their eyes. We sometimes forget this. Those who have a transplant can have problems with these areas afterwards. I would like to suggest, that if you do vomit...try to wash your mouth out with water right away and brush your teeth. It isn't normal for the acid in your stomach to be in your mouth and can cause dental problems. Anyway you can neutralize the acid in the mouth is good...the doctor can tell you what to use. Another thing to think about is your bones. Ask your doctor about trying to protect your bones. He may start you on calcium, phosphorus, vitamin D and even do a Dexa scan to be sure you don't develop osteopenia. Many patients spend months in the house or in the hospital, with not eating properly... it can cause the bones to deteriorate also.


I hope this information is of some help to you.

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.

phone call part 2

Well, we spend the day actually doing different things. I am off all food and liquid after 8:30am which give me a chance to have some breakfast before fasting. Everyone is on edge so we decide that we each need to spend the day doing what we feel we need to. So, I take a shower and clean up. Pack a bag to take tonight if I go and one for Joe to bring later after I am out of ICU. I realize how many things I haven't done. I make an e-mail list which if you got an e-mail from me that day, you are on. If you didn't and want to be added. Just let me know. I make a current phone list of people that will need to be called if it is a go. I call immediate family and friends and tell them what is up. I update our bank account and make sure all the bills are covered and on auto pay for the next month. I take a nap. or try to....... I hug my guys and my dogs and wait. The longer the phone doesn't ring the more I think..."well, if one of the others was getting it she would have called and told me by now" Maybe I am going in.

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........................................................................................................

what the commitee has to say

They did meet today and did review my case. Apparently everything is good to go except for one LITTLE thing. They were concerned about my heart under the stress of the surgery.

They are still concerned about the low oxygenation of my heart. Called

Ischaemic Heart Disease (IHD), otherwise known as Coronary Artery Disease, is a condition that affects the supply of blood to the heart.

As the heart is the pump that supplies oxygenated blood to the various vital organs, any defect in the heart immediately affects the supply of oxygen to the vital organs like the brain, kidneys, liver etc.

Well, you get the idea. They want me to meet with the cardiac team at the heart institute so they can review my tests and records.

It sounds to me like they are just being cautious which I am grateful for. They don't want anything to go wrong when they open me up for the world to see and tear my guts out.... I guess they would like my heart to keep beating so they have time to play Dr with the rest of my insides. I think that is a good idea. So, check away!

From what Judith said that is all they are asking for so I guess I passed all the other requirements. Social, Psych, Alcohol, Financial, Dental, OB, My hairdresser, the guy at Starbucks said it was okay with him...........Pulmonary, etc. etc. etc.

I have found a couple of local transplant support groups and am looking forward to meeting them soon.

For those of you traveling this weekend, Be Safe, take your time and patience along with you and have a very Merry Christmas!

Oh, I accomplished something today I have been putting off....Shoveling and discinfecting Joey's room.....!!!!!!!!!!!!! You people with teens and above know what I mean!

From my new friends Dave and Aimee in a hospital in Texas right now.

I am going to post a comment from Dave. His wife luckily in just the nick of time got a new liver. I found their blog through a yahoo group I have been reading of other Transplant stories... It inspired me to start this one. I will ask his permission to post a link to his if you want to look at it. We have chatted a few times on Yahoo IM and got some wonderful feedback and hope from him...Gotta love the power of the internet!

Nancy,
Wow to see what we had to do just a month ago but now for you is wild. They had all the teams come visit us because of the truly dire situation we were in. We did it in about 36 hours after arriving in Texas. The entire week before the hospital in Hawai'i had done a great deal of pre-work so it could go so fast. Let me tell you from experience, your liver is VERY critical. From the completion of surgery it was only a matter of hours and everything in my wife started coming back (BTW my wifes surgery was 7ish hours). From about an inch from deaths door to the surgery to walking was just under 3 weeks. A good liver does wonders. Take care of yourself, review those notes OFTEN and trust your support team. If your husband and friends suggest you do something, just do it. They are on the outside of your body and can sometimes see better than you what's going on with you. Just some advice, do what you think is right. Take care and have faith.

Dave

What Happened at our evaluation with the Transplant Team. And I do mean TEAM!

WELCOME TO THE SCARIEST DAY OF MY LIFE! Monday was here...October 29th, 2007

I was told that when meeting with the Transplant Team... That it was best to bring the important people involved in your health care and support team with you. There are lots of things beyond your current health situation that eventually come into play when THEY decide who ends up as a good candidate for receiving a new organ or not. As you know organs are in very short supply and they want to make CERTAIN that you will be able to accept and take care of the generous new organ you are lucky enough to receive.

I will go over some of the things that includes later but I do have to tell you it is an exhaustive list.

I brought with me, Joe of course, My wonderful friend Michelle (who I mentioned earlier, my nurse friend and rock), and myself. Mary would have been included also but she was on her way to Florida to spend family time there. She will also be a big part of my support team. We, including all of the Medical Team will be forming one team.

They had requested all of my medical records several weeks ago and called me to say they wanted to see me. First we met with the Nurse Practitioner who took an intensive background interview as well as a physical. Then the Dr came in. Dr Mendler. he had visited me in the hospital at the end of my stay. I do believe he is actually the reason that they sprung me.

What he said to me is actually sort of a blur. Michelle was taking notes feverishly. (good nurse that she is!) Basically what he said is YOU NEED A NEW LIVER AND YOU NEED IT FAST. He also said that with my meld scores staying so high that I would be near the top of the list as soon as I got on it so it could happen fairly fast. Especially because I have a common blood type and am otherwise fairly healthy. They are worried about my lung and heart functions as those *could* knock me off the list. Some of that depends on whether the conditions with those is happening because of my liver failure or not.

Who new you needed your liver so much or that it was responsible for so much stuff in your body?????

I was told that the actual surgery regarding a liver transplant is one of if not the most complex and difficult surgeries they do including, brain surgery and heart transplants....it can take from 7-11 hours. Your liver is attached to EVERYTHING.

I was also told that if the surgery itself is successful and they can keep you from rejecting the new liver that it can be extremely successful and add many good years to your life.

Then we saw the Transplant Coordinator, Judith. She went over everything that we had to do next.....That was when my head really started spinning....

I have classes to attend. LOTS of specialists to see, plus, I have to get up to date on about 10 vaccinations, get a clearance from my dentist, gynecologist has to complete an entire work up including mammogram, the regular stuff and some more, heart dr, lung dr, nutritionist, financial counselor, social worker,classes, support groups.....are you tired yet? Thank God I feel well, I would hate to think I had to do all this if I was really feeling ill. Everything is about a 1 hour drive from our house with no traffic each way so I am trying to make several appt's at a time.

My little hospital stay was over $60,000. This is a $500,000. procedure not including aftercare.

Time for a pee break....have to go grab my container....LOL