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...

A *little* surgery today

Funny how after you go through a transplant.... Any other medical procedure seems like a cake walk. A quick update from the surgery waiting room.

Every thing has been going very well. All my lab values are returning to normal, which I haven't seen for years!

I am going under today so my surgeon can remove the catheter placed in my chest for dialysis.... They have to cut part of it out.... And while I am under they are going to open the incision along the transplant incision and clean out the rest of the hematoma that is still there.

I should be home tonight.

TaTa for now!
Sent from my BlackBerry® smartphone with SprintSpeed

Time to take your Pills ?????

Here is a funny concept...Before Transplant, protect your liver at all costs by not taking ANY drugs including, caffeine, cold medicines, anything over the counter, any herbs, etc. The only thing I took was my diaretics and a multi-vitamin.

NOW, I have a brand new healthy liver and I take 14 different kinds of meds, 22 pills a day. Some before meals, some after, some on an empty stomach some, etc. etc. The trickiest one is one of my antirejection drugs. Prograf. Which I can't eat 2 hours before or one hour after. It makes it tricky if you forget and eat something...

Oh, and I have to take them with me everywhere I go because you never know when you might get stuck somewhere because of weather, an accident, a change of plans, anything unexpected.... YOU HAVE TO HAVE YOUR ANTIREJECTION DRUGS..... or you can loose your liver.....Not a good thing....So, have a back up plan...

But this is the reason for this post. I will talk more about the drugs later but I discovered a couple of great websites for tracking and reminding you to take your pills....and they are FREE..

This one...MyMedShchedule.com is from the Transplant Experience. You enter your meds into a data base and it will create different schedules for you...even a weekly one where you can track all your daily vital signs if you are tracking those and one for your wallet to put next to your emergency info. It will send you text messages or e-mail reminders also....great for those mid day meds. Another thing I like about this is that particularly with transplant they adjust your meds according to your labs once or twice a week in the first few months of transplant and it is really easy to go online and adjust your doses, add and subtract drugs as they change and also just print out a recent copy to take to all your appt's so when they ask what you are taking...Which they do every time!.... You can just hand them a piece of paper....!!

Another one is packmups.com which are little zip lock pouches to fill like your pill containers without the bulk. I think they would be good if you organize pills for others also. I am going to try them.

This one isn't free but I am impressed with the options for reminders. Great for palm pilot, blackberry, internet users who would like reminders... ontimerx.com

These of course would work for any kinds of meds...not just transplant. If you try them give me some feedback!

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!

Please partcipate in the Poll on the left.

I would like your opinion on the photo's I post... If you already made one under comments...Thank You... and could you vote again in the polls?

Erin, I want to talk to you about your cool new Blog Layout! If you want to see it go to http://thedunkles.blogspot.com

Also, I did have the ERCP this afternoon and awoke with no idea what had happened! YEAH! They did insert a stint which will have to be changed every 3 months until they decide I no longer need it but now my bile can pass through easily which should only help my other organs.

I will talk to the Dr's in the morning to get a full report.

Nite, nite,
Nancy

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.....!!!!!

Liver Lab Tests

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

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

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

What is Rejection?

Liver Transplant Complications: Rejection

The most serious complication that may occur after transplant is rejection of the liver. The body's immune system fights against all foreign matter, such as bacteria. This defence system may recognize tissue transplanted from someone else as 'foreign' and act to combat this 'foreign invader.' In most cases, rejection can be controlled if treated promptly. That's why it's important to contact your transplant team or doctor immediately if you experience any rejection symptoms.

I found this on a really good site from Cincinnati University Hospital.... What Are The Symptoms Of Rejection? While you are in the hospital, the transplant team will be monitoring your liver function tests daily to watch for infection. If you reject your liver during this time, you may not have any noticeable symptoms because rejection was diagnosed early through your blood test results. After you leave the hospital, your blood tests will be monitored less frequently. If rejection occurs, you may experience some mild symptoms, although some patients may not notice any problems. Here is a list of signs and symptoms that may indicate liver rejection: - Fever greater than 101° - Fatigue or excess sleepiness - "Crankiness" - Headache - Abdominal swelling, tenderness, or pain - Decreased appetite - Jaundice (yellow skin or eyes) - Dark (brown) urine - Itching None of these symptoms are specific for rejection; but they are important enough that when they occur, you should call the liver transplant coordinator at 513-584-9999. How is Rejection Treated? Rejection does not mean you will lose your liver, but it is very important to begin treatment as soon as possible to avoid further complications. Rejections can usually be treated successfully with medication. Rejection is usually treated by increasing the doses of your anti-rejection medications or by adding or combining different anti-rejection medications. Your transplant team may want to perform a liver biopsy to confirm that your symptoms are caused by rejection before they make any changes to your medications. You may be prescribed an increased dose of prednisone/ prednisolone daily or given solumedrol, the IV form, or prednisone. Sometimes another anti-rejection medicine, such as mycophenolate mofetil, sirolimus, or azathioprine may be added. When your liver recovers, your doses of these additional anti-rejection medications may be decreased or discontinued. The level of your primary anti-rejection medication, usually tacrolimus or cyclosporine, may be reduced. Your transplant team's goal is to have the lowest amount of immunosupression possible so that you do not reject your liver, have good liver function, and have minimal risk of infection and other side effects. Will I Always Have To Be Concerned About Rejecting My Liver? The risk of rejection decreases over time, but can occur at any time. Taking good care of yourself, taking your medications as prescribed and having your blood tests done regularly will help decrease your risk of rejection. Good communication with your transplant team and following your care routine are key factors for a successful outcome after transplant. Rejection can be successfully treated due to advances in immunosuppression and combinations of anti-rejection medications.

How Do I Know I'm Rejecting My Liver? Any injury to the liver can cause the release of normal liver proteins, or enzymes, into the bloodstream. An injury could be caused by rejecting, infection, or drug toxicities. Measuring these enzymes, called the liver function tests (LFT's), regularly and watching the pattern of the results can help your doctor decide what is happening to your liver. What is a Liver Biopsy? Although liver function tests and your symptoms help diagnos rejection, a liver biopsy confirms that the liver is being rejected. A small piece of liver tissue is examined under a microscope for signs of rejection. Biopsies are usually done as outpatient procedures at the hospital. The actual biopsy only takes a few seconds. The piece of liver tissue looks like a small piece of string. It is placed into a special solution, and then taken to the pathology lab to be processed and viewed under the microscope. Your biopsy results may be ready later that day, or you may be asked to return to the clinic to discuss your biopsy results or any treatment that may be necessary. Following a liver biopsy, you will need to lay on your right side for at least one hour, and you must rest in bed for four to six hours. Your nurse will take your vital signs every 15-30 minutes during this time to watch for high heart rate or respatory rate and a low blood pressure.

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......

Back in loma linda

Nancy went in for blood work today and found that her kidney values are almost normal but that her liver values are elevated again. The Dr.s are worried about rejection again. They did an ultrasound which appeared normal but kept her overnight to do a biopsy in the morning. She, and all of us are very worried about this. Hopefully she will only need an adjustment of her meds. We will know more after the pathologist looks at the tissue,

2008 was quite a year!

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


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

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

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

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

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

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

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

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

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


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

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

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

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

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

Ohhhhhhhhhhhhhh, it's a DRUG !!!!!

www.baltimoresun.com/news/health/bal-to.hs.expert29dec29,0,4276099.story

baltimoresun.com

Understanding what alcohol does to your body

Expert advice

By Holly Selby

December 29, 2008

The holiday season brings plenty of reasons to celebrate and with them the temptation to eat and, perhaps, drink a little more than is wise. As we all know but sometimes forget, drinking too much inevitably leads to headaches, loss of energy and generally feeling rotten. But there's only one sure way to avoid a hangover, says Tyler Cymet, a doctor of osteopathic medicine and an emergency room physician at Northwest Hospital. And we know what it is, don't we?

Is alcohol something that people should avoid?

Alcohol is a drug that has specific effects and side effects that are dose-dependent. Any time you take a drug, you should know why you are taking it, what the desired effect is, and weigh that against the side effects of the drug.

But some people can drink alcohol and not have any effects at all. That is because the dose was low and not sufficient to cause noticeable effects.

What are some of the first noticeable effects?

Certain people are more sensitive to alcohol, and to certain types of alcohol. If you drink and you feel sweaty or feel warm and flush right away, then your body is not getting rid of the alcohol in as efficient a manner as you might like, and the alcohol that does this to you is more likely to have a more serious side effect, specifically hangovers or intoxication.

We also know that alcohols - such as brandies, fortified wines, grain alcohol - that are over 15 percent will have greater effects on the stomach, like swelling and will lead to a quicker and more serious effect.

What kinds of effects does alcohol have?

Alcohol will have effects on your muscles, your stomach and on the brain. After taking a therapeutic dose of alcohol (usually considered the equivalent of one shot of hard alcohol an hour) a person's temperature drops, his heart speeds up a bit and he becomes less coordinated because of the brain fog and the changes in the muscles. People may feel warmer on the outside and colder on the inside as blood flow gets shunted to the superficial arteries and veins.

Why do people who drink typically get so clumsy?

Alcohol blocks the ability of the body to absorb calcium, magnesium and other minerals that muscles need to function. So muscle coordination already is off and, simultaneously, the brain is using alcohol instead of sugar as a fuel, which doesn't let the body run as smoothly as it does when it is running on the right type of fuel (sugars).

Are hangovers a common side effect of drinking?

Hangover is the name given to the collection of symptoms people may see after overdosing on alcohol. The muscles and brain either did not have enough of a reserve to overcome the assault of alcohol on the brain and muscles, or the dose of alcohol was too high for the body to tolerate.

What is the hangover syndrome?

A hangover usually occurs from eight to 24 hours after drinking alcohol. It starts when the alcohol level hits zero (although it can happen sooner). And generally lasts from 24 to 36 hours.

Its symptoms typically are sore, achy muscles, a change in the pattern of a person's bowel habits, lack of energy, headache, sensitivity to light and discomfort with food.

The alcohol lets you know when you are heading to a hangover: Alcohol makes you urinate more often leading to a loss of necessary nutrients coupled with a decreased ability to process and take in more minerals and other nutrients. If you are urinating a lot you are developing an electrolyte imbalance and that is when the muscles start to ache, you have no energy, headaches, sensitivity to light. And you are going to start getting light-headed or dizzy.

Once you've made the mistake of drinking too much alcohol, is there anything that can be done to alleviate a hangover?

We hear about drinking milk beforehand or caffeine afterward; we hear about IVs; we hear about taking Motrin before going out to prevent a hangover, but there is nothing [other than not drinking alcohol] that we really know about preventing or curing hangovers - it is all guesswork. And the treatments usually address one of the symptoms of a hangover and not the whole hangover syndrome. We know how alcohol works on the body and since you already know the root cause of a hangover, you know how to prevent a hangover.

Holly Selby is a former reporter for The Baltimore Sun.

The Kidneys join the Team !!!!

After my visit to the Doctors last Friday and the Dr's said let's try it with no dialysis I have been peeing up a storm. When they said it will start as a little bit, gain momentum, then they will just open up....Well, gotta trust the Dr's experience with things... They were right. (Thank God)

Here are a couple of pics on my first few days of dialysis while in the hospital. They would come to my bedside which makes it convenient and comfy for me.....Just make sure you do everything you need to do in the bathroom and get good and comfy for awhile because there were times I couldn't sit up or get out of bed for 6 hours. This has gone on 3 times a week for about a month even though we graduated to going to the dialysis center and sit in a room full of people, machines, and dialysis nurses.

At this point the catheter for the dialysis is in my neck and yes, the tubes of blood (my blood.....yikes) is warm, very weird concept and feeling.......but you get very cold during dialysis.......

So, long story short....No dialysis for now...I will get the final word on Friday after I get some blood work done and see the surgeon.....

I haven't felt very well all day today...nauseous, tired, just not right over all...but tomorrow is a new day.

My wonderful friend Kim is here keeping me company and cooking some wonderful things for us this week.......THANK YOU, KIM.....she flew down from the Bay Area the day after Christmas and will spend New Years with us as well.....

Next week I plan on going back and posting on the transplant....my views, feelings, some pics, (yikes) from what I remember.....

Good Night for now...

And the Parade Goes By.............

I don't know how many of you grew up watching the Rose Parade on New Years Day but I did every year......and in LA we get to watch it all day long on a loop !!! So Cal people are CRAZY about the Rose Parade in Pasadena ! They work on the floats all year and start decorating them the day after Christmas....Today!

I have always wanted to see the parade live but secretly love watching it on TV with a fire going and in my Jammies. We have gone down several years to see the floats on display the couple of days following the parade and I hope I can talk Joe into taking me this year.

One other thing that I have wanted to do is to help decorate the floats. It takes thousands of volunteers a week of 24/7 shifts in very cold hangars (think, KEEP THE FLOWERS COLD!) snipping, seeding, flowering each flower on all the floats.

When I found our local OPO (organ procurement agency) One Legacy, teams with Donate Life and does a float every year.....well, sounded like something I should do!

Last year I was just about on the list....but had a cold and wasn't feeling well, so 8 hours in a cold hangar didn't sound to smart and well, pretty much out of the question this year.....So, tune in NEXT year.....I will be there for certain!

In the mean time....check out the website, buy a rose for the float or some merchandise, donate some $$$$ and don't forget to register for organ donation if that is your wish while you are there!

http://www.donatelifefloat.org/
http://www.tournamentofroses.com/roseparade/

PS....The actual photo of a float is the one from 2004 one of my favorites and then there is the artist rendering of this years float. You will have to watch or come to Pasadena to see it....

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

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

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

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

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

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

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

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

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

and for you Christmas Vacation fans...

Sorry about the profanity.....ya gotta be a fan to appreciate these.
Or watch the movie a couple of times and become one!


Here are 3 of my favorite quotes..... Don't forget to watch the scene in the grocery store with Clark and Eddie.... Is Eddie just *happy* ??????? hehe

Eddie: You surprised to see us, Clark?
Clark: Oh, Eddie... If I woke up tomorrow with my head sewn to the carpet, I wouldn't be more surprised than I am now.

..........................................................................................
Clark: So, when did you get the tenament on wheels?
Eddie: Oh, that uh, that there's an RV. Yeah, yeah, I borrowed it off a buddy of mine. He took my house, I took the RV. It's a good looking vehicle, ain't it?
Clark: Yeah, it looks so nice parked in the driveway.
[Raises class to his mouth]
Eddie: Yeah, it sure does. But, don't you go falling in love with it now, because, we're taking it with us when we leave here next month.
[Clark nearly chokes on his drink]
...............................................................................................
Clark: Hey. If any of you are looking for any last-minute gift ideas for me, I have one. I'd like Frank Shirley, my boss, right here tonight. I want him brought from his happy holiday slumber over there on Melody Lane with all the other rich people and I want him brought right here, with a big ribbon on his head, and I want to look him straight in the eye and I want to tell him what a cheap, lying, no-good, rotten, fore-fleshing, low-life, snake-licking, dirt-eating, inbred, overstuffed, ignorant, blood-sucking, dog-kissing, brainless, dickless, hopeless, heartless, fat-ass, bug-eyed, stiff-legged, spotty-lipped, worm-headed sack of monkey shit he is. Hallelujah. Holy shit. Where's the Tylenol?

When the police show up at the house at the end when the boss is there....watch where Ellens hands go.......

for the rest go to http://www.imdb.com/title/tt0097958/quotes

IF YOU ARE A CHRISTMAS VACATION FAN....TELL ME OR SEND ME YOUR E-MAIL ADDRESS AND I will send you something special.......

The annual 24 hour Christmas Marathon

Come on, you know you will flip by it at least once....Did you know it was a National Lampoon Movie? Anyone like Christmas Vacation??????

20 Holiday Trivia Questions About “A Christmas Story”

By scottie325

To entertain my family when they come over to visit on Christmas day, I decided to put together a holiday trivia game for them. I’ve mentioned several holiday trivia sites I was checking out before in earlier posts, but I finally settled on doing a quiz on “A Christmas Story” due to the epic 24-hour marathon. Here are a selection of questions I put together for the game. Feel free to share them with your friends (and then brag that you researched these all by yourself!).

1. What is the complete, official name of the gift Ralphie wants for Christmas in “A Christmas Story”?
A Red Ryder carbine action 200 shot range model air rifle

2. In what year did the movie “A Christmas Story” take place?
1940

3. What city was used for most of the filming of “A Christmas Story”?
Cleveland, OH

4. True or False: The Red Ryder BB gun that was used in “A Christmas Story” had to be specially created because no such toy ever existed.
True

5. What year was “A Christmas Story” released in theaters?
1983

6. Which character doesn’t actually appear in the book that “A Christmas Story” is based on, “In God We Trust, All Others Pay Cash”: Flick, Scut Farkas, or Ralphie’s brother Randy?
Scut Farkas

7. Yano Anaya, who played Scut Farkas’ evil toadie Grover Dill, is also known for his movie role of playing a sinister paperboy who yells “I want my two dollars!” in what 80s teen movie?
“Better Off Dead”

8. True or False: The original book that “A Christmas Story” is based on was a collection of short semi-autobiographical stories that were written for Reader’s Digest.
False–They were a set of short semi-autobiographical stories that were written for, of all places, “Playboy” magazine.

9. What Academy Award-winning actor was originally considered for the role of Ralphie’s “old man” before concerns about his high salary led to the studio casting Darren McGavin for the role?
Jack Nicholson

10. What does Santa Claus suggest as a gift when Ralphie gets tongue-tied trying to tell him he wants a Red Ryder BB gun?
A football

11. During the movie, Ralphie imagined himself as a cowboy taking on a set of robbers with his Red Ryder BB Gun. What was the name of the leader of the robbers?
Black Bart

12. What contest did the old man win in order to get the leg lamp as a prize?
A crossword puzzle contest in the newspaper

13. When it came to tasting soap, which brand was Ralphie’s personal preference?
Lux

14. When Ralphie tried to recover after his mom initially dismissed his request for a Red Ryder BB gun, what toy did he suggest?
Tinker Toys

15. What gift was dropped into the Old Man’s lap on Christmas Day?
A bowling ball

16. What relative gave Ralphie the pink bunny pajamas?
His aunt

17. According to Ralphie, how many years has it been since his mom had a hot meal: 10, 12 or 15?
15 years

18. What was the last name of Ralphie’s family?
The Parkers

19. What was the name of the Chinese restaurant the Parkers ate at after their dinner was ruined?
Chop Suey Palace

20. Within 100 dogs, how many dogs did Ralphie estimate his neighbor had?
785 (”Our neighbors the Bumpuses had at least 785 smelly hound dogs that ignored every other human being on this earth except my old man.”)

BONUS QUESTION: The house that was used for “A Christmas Story” still exists today in Cleveland. What is the web site address for the house’s official site?
http://www.achristmasstoryhouse.com

Have fun !!!!