Cruisin with the Real"s

Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07

Loma Linda Medical Center

Loma Linda Medical Center
Where the magic happens........

Monday, September 21, 2009

Missing you all

I have been thinking about the blog a lot lately.  Why I stopped posting.  Why I haven't written.  What direction should the blog take now that I have had my transplant.

I feel totally guilty to my readers that I didn't take you through the transplant experience with me when it was happening.  I mean, after all, isn't that what we were ALL waiting for?????  Then I go and leave you hanging.  In reality of course I was fighting for my life and hanging on by a thread and for quite a while that was all I could concentrate on...  But then of course I *should have* picked it up and filled in the blanks and I think that is where I got stumped...  Being a bit of a perfectionist I couldn't figure out if I should go back to the day of transplant or if I should just pick it up in real time or a combo of both and HOW to do that?

So, I did nothing.  As you can plainly see.

I have been encouraged by many people who are still coming and thanking me for my blog, you know who you are and THANK YOU, also people I help face to face here in So Cal.  Some that have passed away.  Their spouses have told me that if their loved one who was now gone could say anything to me it would be to keep on sharing and here I am.

I don't know where I am going to take the blog but I promise you this.  I am going to keep it going.  It will stay Liver, Transplant, Cirrhosis, Organ Donation related. 

It will have bits and pieces of Nancy thrown in and also other people going through some of the same challenges that we all do who go through this scary, terrifying, painful, confusing, soul searching, often magical journey  of living with a life threatening, decompensating liver disease and the miracle of transplant.

So there you go!

Monday, June 22, 2009

7 months and Life is GREAT!

I just wanted to pop on here quickly.. Let you know everything is fantastic and I will be back shortly to get back to the blog... I feel terrible for not keeping all my loyal followers updated but I guess you can see that it is pretty obvious that I needed a break and was focusing on getting back on my feet and starting to breathe deep and explore my newly found life again..

Hugs and Love,,,
Don't miss a minute of the life you have,

Thursday, January 22, 2009

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...

Wednesday, January 21, 2009

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

Saturday, January 10, 2009

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 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 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...

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

Friday, January 9, 2009

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, 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!

Wednesday, January 7, 2009

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

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,

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 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....

Tuesday, January 6, 2009

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!

Monday, January 5, 2009

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.

Sunday, January 4, 2009

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 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 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.....

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