Clean up surgery

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

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

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

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

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

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

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

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

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

This visit is over....

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

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

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

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

And I should be able to drive soon!

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

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

Fighting for Health in the 21st Century


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

· Managing diabetes and kidney disease

· Cardiovascular disease, tips for senior health

· Cancer—promising new research and treatments

· How to obtain health insurance from an expert

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

· Updates on Liver & Kidney Transplant Surgery

· Fatty liver, get the skinny on fatty liver disease



Presenters:



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

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

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

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

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

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

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

Where

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

Martin Anthony Sinatra Education Seminar Auditorium



When

Sunday, November 23, 2008 1 – 5 P.M.


No charge for Admission
Refreshments & Fellowship


For Further Information Phone 760-200-2766


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


Sponsored by Roche and Astellas

on theTransplant list at Scripps in San Diego

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

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

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

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

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

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

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

And now with the news!

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

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

AND, I am their highest B (blood type)

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

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

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

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

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

My friend David...from Loma Linda...

David is a friend of mine. Part of our support group at LLU.. He and his family need prayers sent.... Here is what is going on with him right now...

October 7

Once again, this is a hard one to write. David is VERY ill. He has a fungal infection in his abdomen. The doctors have gone into surgery five times to try to rinse away the infection. After the fifth attempt this afternoon, we were told that there has been little change since last week's attempt. David is now on a ventilator to improve his attempts to breathe. There is an infection in the area surrounding his lungs, and his breathing has become labored. He is also still dealing with the infection in his bowel.

We are still praying that David's body will respond and begin a turn around. Three days ago, one of the doctors said that they have treated patients like David and been successful. Your support and hope are greatly appreciated. Thank you, again, to all of you who have continued to give blood. He has had regular transfusions over the last two weeks. I have every card sent to him so that David may enjoy all of your positive thoughts.

Thank you for caring. Sharon

http://feelbetterdavid.blogspot.com/
www.feelbetterdavid.blogspot.com

The wonderful people who are waiting for a liver at Loma Linda

Today was *support group Tuesday*.

Loma Linda University Medical Center has a wonderful and very active Transplant Center with many patients. Not only liver but kidney, kidney-pancreas, heart, bone marrow and stem cell research and transplant.

In our support group we meet strictly with liver or liver/kidney patients and there are quite a lot of us undergoing treatment in various stages, all very serious if not life threatening.

Today was a difficult day. Almost EVERYONE that was there today is dealing with very difficult symptoms of liver disease.

Encephalopathy, confusion,
Edema,
Acsites,
Very Bloody Noses...(wake up with blood all over pillow)
Esophageal Varices
passing out,
collapsing,
insomnia, no sleep in 3 days,
total fatigue, can't stay awake
change in sleep patterns, sleep all day, awake all night,
Leg cramps, hand cramps with no relief,
severe itching,
stroke,
heart problems,
pulmonary problems,
diabetes,
beginning kidney failure
dialysis,
bruises,
wounds,
weight gain,
weight loss,
pain,
relationship problems,
depression,
fear,
and liver cancer

I am serious! Every one of these was a problem someone was having today!

Lucky for us we also have some incredibly generous people who have been through all the symptoms,and fought through them to transplant, recover and a renewed life.................

THANK GOD FOR THEM! They give the rest of us so much hope. If we didn't have them to look at, watch them breathe, walk, share and live normal lives......Well we owe them a lot.

Today our post transplant volunteers who were in the meeting were post transplant 4, 9, 10 and 13 years..... They give up their day to show up for US. All this time past their transplants when I am sure they have better things to do and they come and give freely of their time.

They don't need us....

They do it because we need THEM! We need to look at the living hope and know that one day that could be us.

So, I want you to know that we appreciate you spending your time with us!!!!

We also appreciate the caregivers out there who are dealing with our issues and didn't sign up for it.....We don't say thank you enough...sooooooooooooo THANK YOU.

There are 2 others I would like to bring to attention for prayers...

Tim, who has been in the hospital for 4 months waiting for a liver. He is VERY ill and needs a liver yesterday.

David who received his new liver 2 weeks ago and is struggling. His liver is functioning well but his body is having a difficult time recovering. His new blog his family started is here.

I am not trying to be depressing just letting you know that across the country there are 19,000 people waiting for a liver. Most won't get one in time to save them and it is not a comfortable way to live or ...........

Please, if you so desire and haven't yet done it please go to donate life and register as an organ donor and encourage your circle of friends.. Then talk to your family to make sure they know what your wishes are. Right now they have final say. Donate Life America YOU NEED TO GO THERE EVEN IF YOU HAVE A PINK DOT ON YOUR LICENSE!

Read this below from their website:

Right now nearly 20,000 Californians wait for an organ transplant. That's 21 percent of the 94,000 people waiting across our country. Tragically, one third of them will die - waiting.

Until now, no Registry has existed for those of you who wished to give consent to be an organ and/or tissue donor. Historically, while signing a donor card and placing the pink dot on your license served as an important symbol of your intent, it did not place you on any list or Registry.

Now, Donate Life California allows you to express your commitment to becoming an organ, eye and tissue donor. The Registry guarantees your plans will be carried out when you die.

Since July 1st of 2006, individuals who renew or apply for a driver's license or ID with the DMV, now have the opportunity to also register their decision to be a donor in the Donate Life California Registry, and the pink "DONOR" dot symbol is pre-printed on the applicant's driver license or ID card.

You have the power to donate life - sign up today to become an organ and tissue donor. Your generosity can save up to eight lives through organ donation and enhance another 50 through tissue donation.


Tomorrow I am off to San Diego to the mandatory transplant class at Scripps in my effort to get a new liver sooner than later....

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!

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!

Our Support Group at Loma Linda

I wanted to share with you all about my discovery of and delight in participating in our hospital Liver Transplant Support Group.

I am SOOOOOOOOO glad that I found this wonderful group of people to share our journeys of cirrhosis and the road to and after transplant with.

I have found it so interesting, heartwarming and helpful to be able to share what each other is going through. Amazing how EVERYONE has a different story of how they got to where they are now and how they are emotionally and physically facing the challenges of cirrhosis.

I guess I always thought that cirrhosis was mainly caused by alcohol and thought drug use probably figured in there but come to find out alcohol is NOT the biggest cause of cirrhosis at all ! Look up Cirrhosis here......

I think that we are very lucky to have such an active group of pre and post transplant patients. We certainly have some interesting discussions!

I would tell you that if you are suffering from something, whether it is a disease, a loved one with a disease or anything that has got you down and you need someone to talk to who understands there is nothing better than talking to people going through the same thing you are.

We have certainly have learned more about symptoms, what to expect and different ways of handling things that we learned from our quick Dr appt's. They just don't have that much time...

Hello, yes I'm still here just haven't written much.

Really enjoyed the LLU transplant centers picnic. Great to meet you and finally put faces to the names that I hear so much about.
As you probably know I'm starting work at a new hospital next week. Very excited about this, It's a great practice.
Must make plans for Nancy's birthday (June 8 th).
I really enjoy reading what Nancy writes in this blog. She is always after me to write something but she has always been more verbose and eloquent than I.
Must go now since Nancy is making Eggs Benedict for Memorial Day breakfast. Yum.

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

The Phone Call ....#1

Joe and I were supposed to be attending a Corporate Travel Agent meeting in LA for the weekend which I cancelled on Friday due to a cold I couldn't shake.

Then Saturday morning at 7:30AM my cell phone rings with a 909 Loma Linda number.............................. for some reason I was already awake....unusual for me these days. I looked at it and knew. I answer the phone. A voice on the other end says "Hi, this is Lynn, Judith's assistant from Loma Linda Transplant." and my heart skipped a beat. I took a deep breath and sat down at my desk. Joe was at his across from me and was watching my face intently. Later he told me he couldn't figure out what the call was about.

I talked to her for about 10 minutes, hung up and took a very deep breath and told Joe it was the transplant center and there was a liver match available and I was 3rd on the list for it. There were 2 other people who matched at another transplant center in the LA area that would have first option for it but they wanted me to be on alert......they called it *on hold*. Pack, take care of loose ends and be ready to come to the hospital to be prepped for surgery if either one of the 1st 2 wasn't a good match or their Surgeons didn't want it for their patients for a variety of reasons.

I just looked at him and couldn't move. Neither one of us could. We just looked at each other. I asked him how he felt, he said he didn't know how to feel and neither did I....It was the weirdest feeling. I wasn't excited, wasn't scared.... I was nervous, and anxious. and my first thought was....NOT TODAY!!! I AM NOT READY..... the next thought was SHIT, THEY REALLY WANT TO DO THIS !!!! it just all seemed like a dream. Joey was sleeping in the next room, we woke him up. (how do you tell you son....this could be the day they cut your Mom wide open and see what happens?). He also said he didn't know how to feel....so there we were...early on a Saturday morning wondering what tomorrow would be like.

Lynn had told me that she probably wouldn't know anything until 4:30 that afternoon and to expect to hear from her by then.

So the wait begins.....................................................................................................

Monday, Monday......

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

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

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

Did a little window shopping at Victoria Gardens.

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

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

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

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

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

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!

meeting with the surgeon..................

Yesterday, Joe and I were on the road to the hospital by 7am and got home about 6pm. Long day of appt's and we had some company last night. They went well but I am catching a cold and the day made me tired. Anyway, over all it was a good and interesting day.

We had an appt with Dr Franco, one of 4 surgeons that make up the liver transplant surgery team at Loma Linda. We barely caught him as he was being called to another transplant. 3rd one in 2 days. Joe and I had already had a discussion wondering, since it is such a long and complicated surgery, how much of it the surgeon actually does. Do they switch off mid stream. Does he make the initial incisions and remove the patients original liver along with attaching the new one (makes me think of installing as a good word... :-)

I know that sometimes when the liver arrives and the Dr's assess it, if something isn't right the surgery is off. We asked how often this happens and he said not often as they actually go evaluate the organ of the donor first and do the harvesting themselves. When UNOS calls and makes an offer of a liver to our Dr's. If it matches one of their patients the surgeons actually fly out to harvest the donor's organ and bring it back to Loma Linda and the surgery proceeds from there. 2 of the 4 Dr's are usually involved, sometimes 3. Who actually would be performing my surgery could be any of the 4 depending on who is on duty when *MY* organ offer becomes available. With a 8-12 hour surgery that makes for a very long day...He said sometimes 36 hours. Plus he sees new patients and after surgery follows all his patients post surgery. Who ever performs my surgery will by my *new* Dr post surgery before being returned to Dr Mendler. An entire NEW team will take care of me post surgery.

Other things come into play that I hadn't heard of or considered regarding matching the organ to the patient. I knew about the blood type and size of the organ. The size of the liver can't be to big or to small for the person receiving it which makes sense. The other things they consider are the age and general health of the patient. He said for someone like myself who is fairly young, in fairly good health, (at this point the rest of the things that will eventually start to happen to me, I won't list them but they are nasty and I would rather avoid them if I can) and has a smallish body, they will look for a smaller, younger liver in good health that can sustain me many years. Well, I like that!!!!

In other patients that may be very ill and in the very end stages of liver failure they might use an organ that isn't so *perfect* as they need to get one in fast or the patient will surely die.

He said he thinks I am a good candidate for the transplant. We like him, he answered all the questions we had at the time before he ran out to catch his helicopter...

Oh, we asked how far the organs come from to Loma Linda. He said mainly the Los Angeles Basin and that Loma Linda, Cedar Sinai and UCLA get their offers first then the organs are offered to more outlying area's.

Then onto the anesthesiologist. We didn't really meet with *the man/woman* just the dept as they were gathering data from Cardiology and Pulmonary to get clearance for me to go under.

I passed. Barely. My heart is getting better apparently. My lung function is still a bit compromised.

We made a stop at the transplant unit. I do that every time I am down there since staying there. I stop by to see how my ex-room mate is doing. She is still waiting for a liver and has been in the hospital quite awhile.



I lost my voice yesterday. Got up this morning and took some cough med that my nurse said was okay...well, it immediately wiped me out and I went back to bed and slept until 2.

Joe goes back to work tomorrow and we just found out that our friends Kim, Tom and family will be coming down Christmas. :-)

meeting with the Surgeon - NOT TODAY

Joe and I went down to meet with the surgeon today, arrived early and waited about 1.5 hours as he was running late. I am not complaining because out of all the appt's that I have had and LLMC I haven't waited much at all. They all run a pretty tight ship regarding the appt's and I have been impressed. But then, well his asst came out and said "Mrs Real, we need to reschedule your appt. The Dr needs to go do a transplant". So, what do you say, but OK, good luck and when should I come back.

So, we had lunch and are home...We are going to try and fit him in tomorrow between 2 other Dr's.

Thursdays Transplant Committee is cancelled so no list this week. I think now that the holidays are in full swing things will slow down as the various Dr's and necessary decision people take time off.

I feel good so all is well.

Welcome to Kelly and Doug on the blog...That was a very nice introduction. Sounds like you are enjoying the snow and the holidays. It is so nice that all your family is so close by!

Hugs, Have a cup of Christmas Cocoa for me!

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.