Hello and Welcome. I am Bob, of Bob $ Larry's Exotic Adventure and Allow me to introduce Larry. Larry is my NEW Liver that I recieved on January 7, 2017. Prior to meeting Larry, I had FIVE "Fa;se Alarms". The first 5 were DCD Livers, And a detailed description/definition of the types of livers that can be donated will appear elsewhere on this site. My actual liver has a bit of a story to tell. That's why I named him. I know "Larry" is not all that creative or imaginative. But I'm getting ahead of myself so let me go back to the beginning. On April 21, 2015 I was admitted to Doyestown Hospital with acute Ascites and liver failure. Scary time to hear rhe word "Failure" in your diagnosis. The draining of the excess fluid (8 Litres of it) was the beginning. one week and I was discharged feeling so so, tired as can be and my journey began. In the early stages of treatment, Treatment was paid for by the Ann Silverman Clinic while I arranged coverage. I Subsequently signed up for something called M.A.W.D. short for Medical Assistance for Worker's who are Disabed, for $110/mo.  As a result I stayed with Mom for the first 3 years.

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So thus begins the journey. April 20, 2015 I went to the local Urgent Care and to my surprise he sent me to the ER, bloated 66 pounds with ascites, the build up of abdominal fluid, Pancytopenia, Type 2 Diabetes, And Liver failure. Then they found out I was bleeding internally and had Esophageal varices, which are abnormal, enlarged veins in the tube that connects the throat and stomach (esophagus). This condition occurs most often in people with serious liver diseases. The first procedure was a Paracentesis which drained 8.2 litres of fluid and relieved the immediate issue but it was also discovered I had internal bleeding along with Portal Hypertension. The internal bleeding went on through 2015 and led to a total of 12 Endoscopies designed to stop the bleeding but to no avail. We tried Iron Infusions to help the Pancytopeniia and transfusions to keep Hemoglobin above 8.0. Normal is 12.7 to 17.7 and mine dipped to 4.6 which is near death and can actually trigger a heart attack. Platelets are 60 and minimum is 150. White Blood count is well below normal but that's a function of Pro-Graf.

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In the beginning stages of treatment the doctors were waiting to see if the Liver recovered and of course that didn't happen even a little and the bleeding and attempts to stop it continued. By This time I was under the care of Dr, Victor Araya, a hepatologist and former Director of Albert Einstein's Live Transplant group. Victor is an excellent Doctor and Oddly enough now works for Thomas Jefferson - Abington. HE was instrumental in making the decision to start the Transplant Process,

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While in the early stages of the disease I had a little bout of Hepatic Encephalopathy(HE) which starts from a build up of primarily Ammonia in you blood which affects your brain. What happens next is mood changes and you can become belligerent and combative. As result upon Diagnosis your liver team will (If it's Serious enough) will order you to surrender your Drivers License. The treatment is a drug Lacttulose and if you have active symptoms another drug known as Xifaxan.​ Lactulose, is taken 3 times a day and is pretty gruesome as you have to take however much you require to have 3 to 4 Bowel Movements each day. With End Stage Liver Disese,(ESLD) the liver fails to remove the Ammonia and this causes HE to rear it's ugly head. It's not uncommon to be sent to the ER having no memory how you got there and boy is that scary! even though I never had a really bad bout I'm still affected post transplant a year later. It slowly is getting better.

 

​With the bleeding and subsequent attempts to stop it was decided to perform a TIP's Procedure. A transjugular intrahepatic portosystemic shunt (TIPS) is a percutaneously created connection within the liver between the portal and systemic circulations. A TIPS is placed to reduce portal pressure in patients with complications related to portal hypertension. This procedure has emerged as a less invasive alternative to surgery in patients with end-stage liver disease.This was the first of 2 TIP's Procedures as the second one was a "Revision" it happens often that once the initial is done, you need to have it adjusted. Prior to TIP's I had a total of 10 Endoscopes, and numerous other tests and procedures..  So I started to feel a bit better. Then the last thing to have happen is the non stop itching. Itching that even with a total of 3 drugs it still causes you to scratch until you draw blood. I had wounds that left scars and the itching didn't completely until a few month post transplant  and so after 8 Months it was decided to begin Pre-Transplant Assessment and off I went to Thomas Jefferson University Hospital with my 78 year old mother in tow.

Pre-Liver Transplant Assessment

Your pre-liver transplant assessment will last one week. You will need to bring a caregiver or support person with you to each appointment.

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Your liver transplant team will mail you a binder packet letting you know where your scheduled appointments and tests will take place. This packet will also provide you with details about the liver transplant evaluation process.

Along with your liver transplant coordinator, your liver transplant team includes:

• Transplant hepatologist will examine you, perform a medical history and physical, and will focus on the signs and symptoms of your liver disease. He or she may also review other options for managing your liver disease

• Liver transplant surgeons will assess your physical capability and risks for transplant. He or she will review your liver disease and the medical management of your diagnosis and address all treatment options available to see if liver transplant is the best option for you.

• Liver transplant nurse coordinator will introduce you to the transplant process and review your evaluation schedule. The visit will consist of preliminary health screening, medicine review, and an overview of the transplant process. Your transplant nurse coordinator is here to answer any questions you may have.

• Living donor transplant nurse coordinator will answer any questions you may have about living donation and the transplant waitlist process.

• Nutritionists will assess your nutritional status, dietary knowledge, and provide education and recommendations for your diet.

• Pharmacists will meet with you to get a complete list of all your medicines and supplements you take, both prescription and over the counter and ask you how you take your medicines.

• Social workers will discuss your support team at home, your prescription insurance coverage, and other social parts of the transplant process. You will also learn about fundraising options.

• Behavioral health nurses or psychiatrists will assist you and your family in coping with the stresses associated with chronic disease and the transplant process. He or she will also assess any current psychiatric/mental health symptoms that are being treated, or may need to be treated.

Pre-Liver Transplant Evaluation and Tests

The outpatient transplant evaluation can take up to a week to complete. You are required to bring a caregiver with you to each appointment. This person must meet with the transplant team and understand his or her role before, during, and after your liver transplant.

During your pre-liver transplant assessment, you might have these clinical tests:

• Imaging scans

• Blood Tests

• Radiology

• Diagnostic tests

• Consults and exams

After a week long period of tests and question the Liver Team voted and on 2/4/2016 I was formally placed on the Transplant list. Now comes the wait and it only seems forever. My wait was 11 months 3 days so not to bad. The thing is You place on the list is determined by something called a MELD Score taken and sent to UNOS Monthly. MELD Scores range from a low of 6 to a high of 40. Oh By The Way "MELD" is short for "Model for End Stage Liver Disease. By this time my MELD Score was fluctuating between 24 - 30, with the "Sweet Spot" being anything over 25

 which I was most of the time past about June of 2016. The really amusing thing is when you get the call, the coordinator will Say, "Mr Johnson I have a liver for you" then she begins to describe it like it's a 2004 Honda, One owner, driven locally only it's more like, "Let me tell you about the liver" No history of Hypertension, No diabetes, from a 70 year old healthy male who is brain dead" I had 5 false Alarms, they were all Donation By Cardiac Death (DCD) organs that have very specific criteria You go from  short time to be Harvested to transplant to begin and all 5 turned out to not be viable. You go from ecstasy to agony in a very short time frame. One minute there is nervous excitement to despair very quickly and your sent home. Those false alarms were for a very short time, end of August 2016 frame of about 10 days as my Meld Score was 30 and I was #1 on the list. I began to get discouraged as my Meld score dropped to 24 at one point. See Meld score doesn't mirror how you're feeling, it's a number that combines certain blood tests and I was a pretty deep shade of yellow and I began to circle the drain through Christmas. Then out of the blue and deep despair the Lord answered our Prayers and on January 7, 2017 I got the call, 70 year former Police Officer Brain Dead Donation (BDD) and the skilled hands of Dr. Catakdo Doria went to work and here I am, pretty Healthy and struggling to pay the bills that come from what seems like all directions. So much of the funding is geared towards making sure you get transplanted. It' when you get home and have after transplant complications  like my 80+ day battle with diarrhea , 25 days of which were spent in Hospital. The thing is when you really stop to think about the $90,000 invoice I have in my possession is not so bad given it amounts to 6.6% of the average total for a Liver Transplant. But for me that number might as well be 9 million in terms of repayment. So we struggle and pray each day for help.