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...

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!

New stuff

I'm at the hospital with Nancy awaiting an ultrasound before the endoscopic procedure. Why another ultrasound, you ask, well during the night Nancy developed a strange, painful swelling on the right side of her incision. It's black and blue and very, very painful. In Nancy's words " it hurts like hell". Morphine didn't touch it and Dalaudin only made a dent. Nobody knows for sure what it is or how it came about. Some suggestions have included a hematoma ( the best guess), infection or dehiscence. All this is complicated by the fact that she will have to lay on this lump during the ercp procedure.

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.....!!!!!

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......

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

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!

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.

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

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

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

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

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

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

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

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

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

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

So, we are off to the races!

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

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

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

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

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

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

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

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

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

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

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

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

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

My First Appointment with Scripps and Dr Hillebrand Tomorrow

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

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

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

But it is important to know how the system works.

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

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

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

Basically, it works like this.

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

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

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

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

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

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

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

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

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

Organ and Cell Transplantation FAQ's from Scripps Green Hospital

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

Scripps Center for Organ and Cell Transplantation

When will I be placed on the waitlist?

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

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

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

How long will I have to wait for a transplant?

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

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

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

How long will the transplanted organ last?

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

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

Fortunately, in most cases these problems can be treated.

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

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

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

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

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

Let me clarify this...

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

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

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

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

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

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

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

Nancy

Appt with my hepatologist

WAIT, MAYBE I AM !!!!

I think it is time I update you on my physical condition. Thank all of you who have been checking on me. It really makes me feel good when you ask how I am...


It is such a hard question to answer actually. You might wonder *what in the world can be hard about such a simple question*?

So, someone asks me, "How are you?" They say, "Nancy, you are looking SO GOOD!".

I say, "Thank you, I feel really good!" And that is the truth. I do feel really good relative to how bad I HAVE felt and how good I feel compared to others suffering from Cirrhosis AND compared to how bad I SHOULD be feeling with my MELD scores still so high.

I am experiencing some of the symptoms of Liver Disease although I would consider mine to be mild. And some things happen to my body that I have no idea what the hell is happening to me at the time...

I am experiencing edema, fluid retention in my legs, ankles and feet. So far I have been controlling it with upping my diuretics when needed, really cutting the sodium down (1200-1500mg daily) when it happens, feet up, etc.

Also, I have started to get more signs of encephalopathy. I lose my train of thought, LOTS, find it hard to concentrate and finish tasks..a little more emotional and sensitive, stuff like that.

There is other stuff but I hate to bore you all with it.

That is the truth. I feel good. I feel lucky. I feel happy. I feel loved. I feel content. I feel peaceful. I feel relaxed. I feel blessed.

I FEEL GREAT !!!! ........................considering............................

Considering the fact that my liver is in REALLY BAD SHAPE, according to Dr M. and that looking at all the facts and statistic scares the hell out of me. REALLY, scares the hell out of me.

We had a long talk yesterday at my appt. and I had a lot of questions. Now, I know he is not God and he doesn't have all the answers. But my questions were mostly about "How can my MELD scores still be so high and yet I FEEL so good?????

His answer to me was a bit disheartening.

He said..." I am GLAD you FEEL so good." Enjoy it. But the fact is your MELD is so high because you need a new liver and sooner would be better than later.

He also said my spleen is enlarged and my pancreas has suffered as well.

My meld score has been slowly creeping down...To give you a recap....
When I was in the hospital last Sept it was 37.
It came down to 28 or so about a month later.
It has been creeping down 1 blip at a time sine then to 22 which is where it is now.

That sound good, right????? Well, yes and no...............again ..........confusing........

It may be GOOD in that I may have recovered a couple of cells in my liver but BAD in that if I do need a transplant sooner than later.....numbers like that could keep me from being *sick enough* to get available livers.

See why I feel like I am spinning on a wheel?

It's one thing to say to myself....It isn't up to me anyway so just relax and enjoy the fact that you feel good.

But that may mean that I end up waiting until my kidneys start failing, I fill up with fluids from Ascites, (think edema gone crazy...) I start bleeding internally in spots I shouldn't...etc. etc. It can get very ugly. AND that can happen very fast.

The other thing I say to myself is, Well, Nancy, you DO have some options. I can dual list at other transplant centers. San Diego Scripps is one that doesn't have such a long list of people waiting...

I don't want to get into all the reasons why or why not to dual list but when my Dr suggests off the record that I might want to look into the Mayo Clinic in Jacksonville, Fl...
Well, I get the hint.

I would love to go to Jacksonville....but my insurance is only good in CA....Unless anyone reading would like to sponsor a liver transplant I guess I am staying on the west coast.

We are lucky to have many wonderful transplant centers in CA and I am starting to schedule interviews.

Maybe it is just me but I feel as though my brain is being bombarded with so many different signals and messages that I am on a crazy roller coaster.

Now try and go about normal day to day life....looking on the outside like there is nothing physically wrong with you at all !!!! It is confusing as hell.

I know some of you with *invisible* illnesses know what I am talking about.

I really am NOT trying to throw a pitty party here...But, I need to write and I know you, my friends and family do what to know..

I guess that is enough for tonight. I need to turn in..

Hugs to you all,
Enjoy the summer,
Enjoy each other,
Enjoy the health you have,
Enjoy life!

Glimpses into med stuff

By the way, in case you all wondered....................... I do actually know much more about the procedures and my condition, etc than I describe in the blog postings... I figure if you really want all the gory details you will either ask or do some research yourself. For my fellow transplant friends......well, they probably have first hand experience...

I try to keep the blog light. I don't always look like the *good* pics of me either.......LOL
Let's save the gory ones for later.

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.

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......

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!

this is HUGE!!!!!

Okay gang, I received a call from Marielena, my *personal assistant* at the center... the one who keeps me busy with appt's. and we are almost there!

I have one more CT scan with contrast and a reg Dr appt. BUT,,,,,I also have my appt's set up with the SURGEON AND ANESTHESIOLOGIST next week! Those are the 2 big ones. They only do those after everything else is done, all the boxes are checked off, the I's are dotted, T's crossed.....etc. etc..... THEN they all take my case to committee which meets on THURSDAY the 13th! They will decide right then and there if I they put me on the list or not.

Sooooooooooooooooooo, I should know by the end of next week! PHEW! After that things will slow down at regarding all the appointments and I can focus on getting some exercise, and getting things in order here at home to run without me for awhile. AND I can spend a bit of time enjoying life, (not that I don't now)

I would love to know before Christmas.

Well, I have lots of things to catch up with here at home today. I just was so happy and wanted to let you all know!

Have a great day!

my hospital stay Friday - Sat.

I was thinking something on Friday morning at 5:30am in the shower...(way to early for me!) Before when people said they were going for some kind of medical test, something with a name I had heard of over and over and over....like an endoscopy, or a CT scan, an MRI, a heart cath or angiogram. You know how it is...we hear the terms on TV, on the News, from friends and family, at the water-cooler...ya know???? For myself, I would hear the term and think I had an idea what it was and it was sort of in one ear and out the other, (unless it was someone close to me then I asked a few more questions, of course) BUT, we kind of take them for granted that they are standard, regular, test that happen all the time. And they ARE. Your Dr's and nurses think so, your friends and family think so and so do you.......Except when they are going to do one on YOU !!!!!

THEN IT IS MORE LIKE.................CAN WE SLOW DOWN HERE A MINUTE PLEASE AND MAKE PRETEND I DON'T HAVE A CLUE EXACTLY WHAT YOU ARE GOING TO DO TO ME, WHAT YOU ARE LOOKING AT AND FOR AND WHAT HAPPENS IF YOU FIND/DON'T FIND IT????? I KNOW YOU KNOW YOU DO THIS ALL DAY LONG BUT,,,,,,,,,I AM NEW HERE......WOULD YOU MIND STARTING AT THE BEGINNING FOR ME?.....LOL

So, one thing I have learned is that when people tell me they are going to the Dr for this or that...I am not going to pretend I have any idea what they mean....and ask them, What is that, how do you feel? Because a quick, I hope it goes well may not be what they need. They very well may be scared!.......

Maybe all this that I am going through is to teach me some things like this........................

Just a thought..............................................

Okay, now onto my sleep over.

Mary and I arrive at the hospital to check in and head to unit 4100 per instructions. We have no idea what unit 4100 does and like most of the units...they don't have a name by the number so you still don't know....I knew it was across the hall from the cardiac unit I went to last Monday so I assumed it was a overnight cardiac unit so they could give me blood and monitor me before sending me home. Hopefully that night but possibly the next morning. I feel great. A little nervous but happier that they were going to give me blood *products* (new term for me) so I wasn't worried about having my femoral artery punctured any longer and I trust the procedure and Dr's....very good success rate and I was hoping they would find my heart and lungs in good enough shape for surgery. If they did look at my heart and see what they thought could be the problem, well, that would be very bad as it is irreversible and would keep me off the list permanently.

I get shown to my bed, given my gown for the stay, new slipper socks, they get me in bed and do vitals, they ask all the same questions they ask every damn time you meet someone new. I think it is a test to see if you are still giving them the same answers. Hook me up to all vital machines. The vampires come in to draw blood and put a catheter in. etc. etc.

Then something odd happens. A Dr pops in to say hi and see how I am am doing. We recognize each other. We met a couple of times during my stay the 1st of Sept. (unit 6200). :-)
His lab coat says something about being on the transplant team. Hmmmmmmmmmm, Did he just come in to check on me? I haven't seen him down at the transplant offices.....hmmmmmm.

Well, I asked the nice nurse, Sara, what unit this is...she tells me it is the transplant until and looks at me funny like I should know...... (I am NEW here.....remember?) That hit me as, hm, this is where I will be for a few weeks post transplant. These are the Dr's and nurses who will be taking care of me after I get out of ICU. It was sort of a weird revelation. As I stayed there it almost felt like home and I felt safe and understood as THESE Dr's and nurses only take care of transplant patients and know so much about the symptoms, how the bodies are acting and reacting. The drugs we are on and why...why we look and act the way we do. My room mate was there for a liver transplant. She was pre-transplant and going through dialysis waiting for a liver as her kidneys had failed and she was in pretty bad shape.

I was very impressed with the unit and the people that work there.......a preview of sorts.
I guess anytime I need to go into the hospital from now on, no matter what the reason that is where I will go.

I will speed things up.
I ended up getting 1 unit of platelets and 3 units of plasma but the timing had to be perfectly timed with when they would be ready for me in the cardiac unit. So I waited until late afternoon to get the blood *products* I just pretended they were my girlfriend Michelle's as she gave platelets in my name at the blood bank the day before.....

THANK YOU MICHELLE......(HUGS, HUGS, HUGS!)

They wheeled me down the hall into a large room like on ER with *HAVE A HOLLY, JOLLY CHRISTMAS* playing....and Frosty, Rudolph and so forth to follow. How very festive. LOL

Scrub me, drape me, tie me down.....having fun so far...Then they tell me I am going to get some happy juice! Oh boy, sounds like a party to me...Then when I asked WHEN do I get my happy juice, as you are awake during this thing, they tell me, OH, we are so sorry, no happy juice for YOU...Your liver doesn't want any today. Shit, ok, it's white knuckles for me.

The surgeons and techs were all very nice, explained everything and went about their business.

If you want to know what they do...an angiogram or heart cath...same thing...they did a left and a right heart cath on me. They numb up your groin area where they go in. They put in 2 catheters into my femoral artery and proceed to take this small tube with a hook at the end...(flexible, about 5 feet long) and thread it up your artery and into your heart for a look see.

It really was painless but if feels like a plumber doing rotor rooter on you. You know those snake things? They thread this thing up into your heart, shoot contrast through it and take pictures on the 4 TV monitors that you can watch...it is amazing actually, watching your own heart beat and when they shoot the dye in it illuminates all through your very own vessels... I guess the most uncomfortable thing was that I could feel it in my heart. The catheter. I could feel it. A bit uncomfortable and they didn't tell me that so I wasn't ready for it.

Then, POOF, they took it out and it was over! They plugged the artery with a self absorbing plug that seals it and told me not to move for 2 hours. They also said...

YOUR HEART LOOKS REALLY, REALLY GOOD!!! The pressures are good, etc. I asked..good enough to get me through the surgery? and the answer was a preliminary YES!!!!!!!!!!

We were sooooooooooooooooooooooo, happy.....finally some good news. I was starting to think that I hadn't gotten any *good* news since I entered the hospital 3 months ago. Which was true.

I got a good nights sleep and went home Sat afternoon. Rested most of the weekend..and was up and running this morning.

BTW, Mary stayed with me all week bless her heart and left Sunday morning to go home for a bit and get ready for Christmas.

Wow, that was a long story for a one night stay............................. I may miss a few days here and again but I make up for it...

Goodnight all !!! We are closer to the committee review/decision.