My name is Tony Villiotti. I am a 71 year old male from Pittsburgh, Pennsylvania who was diagnosed with liver issues in his late sixties. The purpose of this journal is twofold. First, it was intended to be a release for me as it allows me to retrace the various issues I dealt with in the course of finding out I had a crummy liver and replacing it. Second, I thought it might be helpful to someone with liver issues, or someone who has a loved one with issues, to anticipate what life may have in store for them. If anyone reads this and has a question please feel free to email me at anthonyvilliotti@hotmail.com.
Some Background
I come from an Italian family of big eaters. As my three brothers are fond of saying, we come from a long line of hogs. Our standard fare was spaghetti and meatballs three times a week. Not even the days of the week changed. Tuesday, Thursday and Sunday were our pasta days. Plus, my mom usually made homemade bread on Saturdays. My brothers and I would sit at the kitchen table waiting for the bread to come out of the oven. Slop some butter on it and it was a delicacy. Just the thought of it makes me drool. Lunch was almost always bologna sandwiches (usually plural). We were big consumers of bread. My mother would typically buy 20 loaves of bread every week for our family of six. Fortunately, my mother had four boys. A girl just would not have fit in.
My mother often bought “husky” clothes for us and sometimes even had to go to adult sizes for our pants and cut the legs down so they would fit us. I don’t think they even have the husky size any more as it would not be politically correct.
My father was the leader of the hogs. His lunches while working on the railroad were legendary. His peak was bringing 16 sandwiches (yes 16), with some bananas and small pies for lunch. He got his uncle, who he worked with, to carry part of his lunch so he would not be embarrassed. After working on the railroad, where his father was a foreman, my dad enlisted in the Army. He went to barber school on the GI bill after discharge and married my mom.
My dad was diagnosed with diabetes late in his life and cut way back on his diet. My dad passed away at age 72 due to a heart problem, probably inherited from his mother. On the other hand, my mother died at age 96 as her organs began to shut down. She was the only thin one in the family and had good genes as her mother also lived into her mid-90s.
When I graduated from Taylor Allderdice High School in Pittsburgh in 1964 I weighed 235 pounds and was about 5-11. I was fairly athletic so I carried the weight relatively well and was in reasonably good shape. From there I attended Penn State and majored in Accounting. I actually lost weight in college and did not weigh much more than 200 pounds when I graduated, which was skinny for me. Why did I lose weight? I didn’t have the money to buy extra food and I played lots of racquetball.
I started gaining weight again after I graduated college in September 1968. With money in my pocket for the first time in my life, I would buy two pizzas, one for me and one for the rest of the family. Arby’s had a special offer of five roast beef sandwiches for $5? Sign me up. I would eat all five at one sitting.
At that eating pace and with less exercise than I got in college, the weight started to increase. More on that later.
I have always had a positive outlook on life. Over the years I have always expected things to go well for me and, not to brag, it has usually worked out that way. I have a great marriage, two children who are doing well and four grandchildren who are the light of my life. I’m relatively secure financially and have a pension (my wife does too) so we can pretty much do what we want within reason. We’re not extravagant by any means (we’ve lived in the same house for 35 years) but we live like we did before we retired.
High Blood Pressure
I got married in 1978 to an Irish girl (Betsy) who had never cooked an Italian meal. Back in those days you had to take a physical before you married. The doctor said I had high blood pressure. Nothing serious but something to keep an eye on. I paid a little more attention to what I ate and things seemed to be under control. Betsy did not make Italian dinners so that helped.
Packing on the Pounds
I worked a lot of hours in my Accounting and Finance jobs, all of which was spent behind a desk. My eating habits were terrible. I typically stopped for a milkshake and a breakfast sandwich on the way to work. If I didn’t do that, I would get a calorie-filled cinnamon roll from the stand in the building where I worked. With the hours I worked and with the addition of two kids to the family (Gina born in 1981 and David in 1984), I got zero exercise. A Saturday morning stop for at least two Egg McMuffins plus an order or two of pancakes was a standard. My weight creeped up little by little until it crossed the 290 pound mark.
Diabetes
In mid-1988 , I started feeling very tired and was urinating frequently. Betsy talked me into going to the doctor to see what the problem was. I’ll never forget the day (October 31, 1988) when I was diagnosed with diabetes and started taking Metformin. Being Halloween day, I was looking forward to inhaling many candy bars from my kid’s haul but this kind of ruined it for me. I vowed to start watching my diet the next day, but did somewhat restrict my candy consumption that night.
I followed through with a much lower level of food consumption and brought my weight into the 260-270 pound range relatively quickly. My readings were still high but were not terrible. The diabetes really did not have much of an effect on my life, at least that I could see, and I felt good and life moved on.
In August 2016 I started seeing a diabetes specialist because I was starting to feel overmedicated (I took three pills). Before that, I had relied on my PCP to monitor the diabetes. The specialist eliminated two pills (can’t remember the names) and added Victoza to my meds. Victoza had the side effect of suppressing my appetite which led to weight loss. So I was taking Metformin and Victoza at this point.
My glucose numbers did decrease.That doctor left AGH and I visited another specialist at AGH in October 2017. Based on my readings she reduced my Victoza dosage. She visited me when I was in the hospital in December (more on that later) and completely took me off diabetes meds. So far, so good on controlling the diabetes by diet, at least up to the transplant.
A Heart Attack (or was it?)
I sailed along taking my diabetes meds and retired in 2003. I never imagined retiring early but the company I worked for was sold and I ended up getting a nice severance package and retiring at age 57. Easy street, right? All the job-related stress was gone from my life and I spent my time focusing on my life-long interests in baseball and football. I also walked a lot and, given my weight, was probably in the best shape of my recent life.
I was out walking in early 2004 while Betsy was at work and broke out in a sweat and my heart was racing. I walked home, took a shower and did some heart research online, hemmed and hawed and then decided to call my doctor. I went to his office and I ended up being shipped straight to the hospital in an ambulance.
In the hospital, a cardiologist did a catherization. He said I had atrial fibrillation and a heart attack but didn’t have much blockage, so no stent or bypass surgery was required. I spent one night in the hospital and was back out walking the next day. I was prescribed Atenolol, a beta blocker used to treat blood pressure and prevent chest pain.
Interestingly enough, I switched cardiologists 13 years later and he doubted whether I even had a heart attack, just the a-fib.
In 2008 I actually got my weight down to about 230 pounds with a Nutrisystems diet, supplemented by a more intense exercise program (using Bowflex). This did not last long, though, as I got tired of the food, stopped eating it and moved back up to the 260 pound range.
Beginning in 2017, every time I went to the hospital I was asked about the necessity of the Atenolol as my blood pressure was low. I talked to my PCP in late 2017 and he took me off Atenolol.
Fatty Liver and Liver Cirrhosis
In 2005, my primary care physician told me that my liver enzymes were elevated and I had a fatty liver. What the hell is that? I didn’t bother to ask any questions or research it online. Lose weight the doctor said. My weight went down and up (mostly up) for several year. In 2014 the fatty liver continued to worsen. Finally, I got a call after bloodwork in the summer of 2014 in which the doctor said he was very concerned about the possibility of Cirrhosis and that he wanted me to get an MRI.
Liver Cirrhosis? If there was one disease I never expected to have, it was this one. Wasn’t that a disease that drinkers got? I seldom drank and when I did it was always in moderation. How did I get this? The doctor told me that Nonalcoholic Steatohepatitis (or NASH) was becoming more and more prevalent as a cause of Cirrhosis. Apparently, my diabetes, weight and sedentary lifestyle had caught up to me.
I asked the doctor whether Fatty Liver always progressed to Liver Cirrhosis. He said Fatty Liver did not always lead to Cirrhosis and that there was no apparent rhyme or reason why it happened to me. Just luck of the draw. I can’t win at Power Ball, but I won the lottery with Cirrhosis. Lucky me. I know guys even tubbier than me that are living just fine with a fatty liver. Still, my mental outlook was positive. Nothing I could not handle and all would be fine.
After the MRI, the doctor was concerned enough that he recommended I see specialists at Allegheny General Hospital’s (AGH) Center for Digestive Health to get a diagnosis from them. My first appointment with a hepatologist was in December 2014 and after another MRI she confirmed the diagnosis of Liver Cirrhosis. Her view was that eventually I would need a liver transplant, a procedure of which I was very leery.
Up to this point I had never heard of MELD. MELD stands for “Model for End-Stage Liver Disease”. Based on bloodwork results (INR, Total Billirubin. Sodium and Creatinine), MELD is a measure of the severity and extent of liver disease. MELD scores are based on a formula and range from 6 (healthy) to 40 (very ill) and are used to prioritize patients for receiving a liver transplant. My life, although I didn’t know it at the time, would soon revolve around my MELD score. My December 2014 bloodwork indicated that my MELD score was 11, nowhere near the point where I would get a transplant. The MELD score stayed pretty low, reaching 13 in April 2016 and a transplant was not on my mind.
When I was diagnosed with Cirrhosis I had a good outlook about things, some or maybe most of it probably borne out of ignorance. I expected things to “work out” and that I would survive it without a major lifestyle change.
Liver Cancer
I continued to get regular MRIs, usually every six months. Once they spotted a tumor that looked like it might be cancer, but the tumor did not reappear, or maybe it just could not be seen, on subsequent MRIs.
After my March 2017 MRI my hepatologist’s office called to move up my next appointment. I knew something was up. The nurse who called would not spill the beans but sounded awfully serious. On March 17 I was told that I had liver cancer. The cancer diagnosis did hit me a little hard because it was unexpected. March 17 is St Patrick’s Day. Betsy is Irish and her family always celebrates the occasion. That wasn’t quite the case with me. My father died on St Patrick’s Day back in 1989 and now I got my cancer diagnosis on the same day. I told my brothers and they proceeded to curse out St Patrick. I didn’t have a “why me” moment. Things had almost always had a positive outcome for me and I thought this would be the same. I would beat the cancer.’
Meanwhile my hepatologist along with Betsy hammered home the point that a transplant was the best course of action. On a side note, my MELD score at that time was 15, higher than the 11 it was when I started but not much of a progression over 2+ years.
At that March 17 appointment I also met with an oncologist. If the cancer metastasized and moved beyond the liver I would not be eligible for a transplant. The oncologist had developed a new procedure called Stereotactic Body Therapy (SBRT) whereby very focused radiation treatments would stop the growth of the tumor and reduce the likelihood of the cancer metastasizing. The success rate was over 90%. This required only five doses of radiation done over a two- week period. I started the process in mid-April and it did the job.
The oncologist, though, said that my liver issues were likely to get worse and possibly quickly. I grudgingly agreed that I should get on the transplant list. AGH’s transplant committee had to approve putting me on the list. Before the approval I had to go through a battery of tests that indicated whether I could tolerate a transplant and then meet with various members of the transplant team. I was still upbeat when we decided that a transplant was probably the best course of action.
Getting on the Transplant list
On April 26, 2017 I reported to the hospital to go through the full day of pre-transplant testing. Every test under the sun was done. A meeting was scheduled with the transplant team for May 31. Apparently, all the testing showed good results and my meeting with the transplant team did not scare them off. A few days later the transplant committee approved me for the transplant list and sent in all the information to UNOS (United Network for Organ Sharing). On June 13 I was notified that I had been approved by UNOS for the transplant list.
UNOS was formed in 1984 and plays a central role in allocating organs to hospitals and patients. They essentially manage a list of transplant eligible patients and receive notification of newly available organs that can be transplanted. They assign the liver to the person with the highest meld score on their list that matches the blood type and other factors.
This is all done by region. There are 11 regions and Pennsylvania is grouped with Delaware, District of Columbia, Maryland, New Jersey, West Virginia and Northern Virginia. Unfortunately, my region has one of the longest waiting times of all the regions. AGH and UPMC (the other large transplant facility in Pittsburgh), along with other transplant centers in the region would be competing for the same livers. This is all done by MELD score.
If there is a match between an available organ and a patient (with the MELD score used to prioritize potential recipients) they notify the hospital where the transplant would be performed. The hospital can either accept or reject the organ and, if accepted, notifies the patient. By June my MELD score had increased to 18.
Hepatic Encephalopathy (HE)
I felt pretty good all summer. I was watching my diet but it was reasonable and I thought, hey, this wait won’t be too bad. In October, Betsy and I along with my brother and his wife decided to take an overnight trip to Erie (about a 2 hour drive from Pittsburgh) to do a little gambling (I love to gamble and had converted Betsy into a gambler as well). I made some money at the tables for a change. At dinner I had a cheeseburger and fries. We stopped to eat on the way home and I had a Shepherd’s pie. Even more red meat. Then at home on Saturday I watched the Penn State game on October 21 and ordered a cheesesteak hoagie with double meat. I felt fine when I went to bed on Saturday.
Betsy went to church the next morning, Sunday, October 22, and when she returned home she found me leaning against a wall and acting “goofy”. I didn’t know her name or much else. Betsy tried to get me to drink water but I kept pushing her hand away. I had past issues with dehydration so her first thought was that I was dehydrated.
She called 911 and asked the paramedics to give me an IV but they could not due to the shortage of saline solution, a result of Hurricane Maris’s impact on Puerto Rico. It turns out that Puerto Rico is the major supplier of saline solutions. There were saline producers in the USA but demand was exceeding supply.
So they took me to AGH’s emergency room. Thank God for Betsy being home.
I woke up in the hospital Sunday evening and had no idea where I was. I had no recollection (and still don’t) of the day’s events. A doctor quizzed me on such basic questions as the year, grandkids names, etc. The only one I got right was that Donald Trump was president.
Like many things that began to affect me, I had no idea what HE was. Here is what I learned. A healthy liver takes ingested protein and turns it into harmless toxins. A diseased liver cannot turn the protein into a harmless toxin. Instead, the toxins in the form of Ammonia enter one’s blood stream and can go to the brain. My weekend activities had overloaded the liver with protein. The Ammonia affected my brain and led to my problem.
The worst case from my episode is that I could have entered a coma, so it is nothing to mess with. If Betsy had not been home that day who knows what would have happened. The principal remedies for HE are Laculose and Xiafan. The Laculose had the worst taste of anything that had ever passed my lips, but it seems to do the job. I had to take it until I got my transplant. The Laculose facilitates waste attaching onto bowel movements and takes the Ammonia with it. I entered the hospital on October 22 and was discharged on October 25. My MELD score was now 21.
One of the residual effects, at least for me, was having “foggy brain”. I didn’t realize it at the time but the foggy brain would stay with me until my transplant. The fog was less on some days than on others, but its presence was a constant in my life. I only drove locally. Betsy did all the other driving.
I had a second HE episode in December. This wasn’t nearly as bad as the first one, but Betsy said I was acting goofy. I hadn’t been eating red meat but was still taking in too much protein. On my late October visit to the hospital I was supposed to talk with a dietician, but it never happened. We had only been watching protein from red meat not all protein. Big mistake. We did meet with a dietician this time and she told us to watch all protein. This was on December 18 and they kept me only one night in the hospital.
A Trip to the Emergency Room
I wake up the morning of November 4 and go to the bathroom to urinate. My urine is bright red. Am I seeing things? I go again and the urine is still red. So it’s off to the AGH emergency room. They run a bunch of tests. They won’t let me drink or eat (even ice chips) the whole 10 hours I am in this godforsaken room. Betsy insists that they give me an IV so I don’t dehydrate. She can be very convincing.
I see a resident who barely knows what a transplant is. No knowledge plus poor bedside manner equals a bad doctor. This doctor was the exception to the rule. All my other interactions with AGH doctors and nurses were great.
He consults by phone with a urologist and seems almost giddy to tell me that I probably have bladder cancer and that would take me off the transplant list. But not to worry they have other ways of treating cancer. No shit!! He recommends that I see a urologist within the next week. I am finally released from captivity and it’s off to a restaurant I go.
After a stressful weekend (my emergency room visit was on a Saturday) I make an appointment with a urologist for November 8. He is highly dubious that I have bladder cancer. He performs a cystoscopy (places a tube into my penis and views the bladder), the thought of which even now gives me goose bumps. He says he doesn’t think I have bladder cancer but the bloody urine is obscuring his vision somewhat. He wants to redo the torture in a month when the blood has cleared up. I work up my courage and go back for a redo and he says that, without qualification, I do not have bladder cancer.
It is highly likely that the blood was a result of my October hospital stay where I had trauma with a catheter in the groin area.
Paracentesis
My education continued. In November 2017, Betsy noticed that my stomach was getting bigger and harder even though I wasn’t eating much. Plus, I had shortness of breath and my weight was increasing. I was up to about 250 pounds. We contacted my hepatologist and she said I should get a paracentesis (or have my stomach drained in my terminology). This was another procedure I had never heard of. Fluid was apparently building up, a somewhat normal occurrence with cirrhosis. The build up of fluid beyond a normal amount is called ascites.
On November 29, I reported to AGH to have an ultrasound where they pinpoint the area of fluid buildup. Then I proceeded to a different area of the hospital where they commenced draining fluid from my abdomen. The process took several hours and resulted in about 20 pounds of fluid being removed. That took me down to 230 pounds. I felt better afterward and my stomach was smaller and softer. In addition, my appetite was better.
This situation reoccurred to a lesser degree in January. On January 16, 2018 I repeated the procedure. Only about 8 pounds of fluid was removed this time.
Thoracentesis
In January 2018, I am again experiencing shortness of breath. My hepatologist said I had some fluid in my lungs. She was hoping the January Paracentesis might have helped with but it didn’t. She says I should have a thoracentesis done, which drains fluid from the lungs. This is a little trickier than the Paracentesis as more things could go wrong.
On March 7, my new friends in Ultrasound do their thing and perform the Thoracentesis themselves. They drain about one liter of fluid from my lungs. This helps somewhat with the shortness of breath.
Moving Up the Transplant List
My MELD score in November 2017 reached a high of 24. As a special prize for having cancer and having spent 6 months on the transplant list, in mid-December my MELD score was automatically increased to 28. This is standard for cases such as mine. Every three months I would automatically get another point added on, so in March my MELD score would increase to 29 and so on.
A MELD score of 28 puts me in the range where I could get the transplant at any time. This lifted my spirits considerably. Eventually, though, that wears off and I have lots of ups and downs. At first, I’m expecting a transplant by Christmas. I pack my bag in case I am called. This continues through January. Once I hit February it seems I will never get the transplant. The waiting is wearing on me. My wonderful wife tries to lift my spirits. We’re both having ups and downs though. It seems like when I’m down, she is up and vice versa.
The transplant coordinator tells us that I should get the call sooner rather than later but the damn phone is not ringing. It’s like waiting to have a baby but with no due date. I spend a lot of time staring at the phone.
On March 16, 2018 I am notified that by finishing another three months on the transplant list I get two more points, taking me up to a MELD of 30. I was expecting the MELD score to only increase to 29, so this is good news. This puts me in great position to get THE CALL.
The CALL!!!!!!!!!
We’re sitting home watching TV on St. Patrick’s Day (March 17, 2018) and the phone rings around 8 pm with a call from a number we don’t recognize. Betsy answers the phone and tells me the transplant coordinator wants to talk to me. The coordinator tells me they have a liver and proceeds to provide some background information on its condition. I don’t hear anything after she says they have a liver. It turns out it’s a somewhat high risk liver due to the donor’s living partner, but I say I will take it. She tells me she will talk to the surgeon and give him the liver’s condition and so forth, but to sit tight and she’ll call me back as soon as she gets the sign-off from him that the liver is acceptable. After texting our kids and our siblings to let them know that I may be going, I get dressed and sit back and wait.
My daughter drives over with her kids to give me a last chance to say goodbye to the grandkids before the surgery. I probably won’t be able to see them until a few weeks after the surgery due to the danger of infection. As she is pulling into our driveway, the transplant coordinator calls back and tells me the surgeon says it looks like a go and I should get to the hospital ASAP.
After a quick hug for the grandkids, we jump in the car and head to Allegheny General for the preliminary testing. We arrive in about a half hour, still relatively calm. We enter the hospital through the Emergency Department. They call up to the transplant floor and tell me to go to that floor to get checked in and all. Now it’s around 10 pm. They complete the blood tests, chest x-ray and various other tests by around 11 pm. The nurse tells me to relax and get some sleep (yeah right) and that I’m scheduled for the Operating Room at 8 am on Sunday, March 18.
The “harvesting” of the donor’s organs is to take place at another hospital in Pittsburgh at 6 am. I’m also told that we won’t know for sure whether I get the transplant until the liver is physically examined by one of the surgeons. My wife stays all night in my room and Gina and David join us by around 6:30 am.
After this is all over, and several months later, I finally ask what constitutes a high risk liver. I am told that if a potential donor meets any one of the following criteria, the liver is considered high risk.
• Men who have sex with men
• IV drug users
• Persons with hemophilia
• Commercial sex worker
• Sex with a partner in one of the above criteria
• Recent incarceration
Putting two and two together, I believe my donor had sex with a drug user.
Transplant Day
Around 7:30 am on Sunday, March 18 a resident comes in and tells us that I am still scheduled for the Operating Room at 8 am, but it’s likely to be later in the day. As he’s telling me that, the nurse comes in and tells me they want me in the Operating Room right now. One of the transplant surgeons and another resident went to the donor’s hospital and examined the liver and said everything is a go. It’s SHOWTIME. (Later on, I talk to the resident who looked at the liver and she said it’s just like on television. They put the liver in a cooler and transported it to Allegheny General.) Meanwhile, I’m taken down to the Operating Room area and talk with the Anesthesiologists and listen to others telling me about the surgical risk. I remember being wheeled into the OR but my consciousness ends shortly thereafter. Betsy tells me the operation lasted until about 2 pm, or about six hours.
Betsy talks to one of the surgeons after the operation and he tells her that the transplant went very well and the liver I received was a “Ford or Chevy, but not a Cadillac”. I’ll take it.
Intensive Care Unit
My first remembrance of waking up is the breathing tubes in my mouth and throat. It is uncomfortable and I can’t talk. But like a dream someone removes the tubes and I feel okay.
I spend three nights in intensive care. I can’t say enough good things about the nurses in that unit. They took great care of me. Physical and Occupational therapists stop in Sunday evening, just a few hours after the operation concluded, and they get me out of bed and have me walk a little bit.
Respiratory staff also visits and tells me to begin working on my breathing and lung capacity. It is a little hard at first but I’m going to have to deal with it because they want me to do the exercises multiple times every day.
I have a hard time sleeping and every morning at around 3:30 am hospital personnel start coming in to take blood, give me chest x-rays and check other vitals. This is the daily routine. The transplant team doctors visit at least once a day and tell me everything is looking great.
Out of Intensive Care
On Tuesday, March 20 I am actually ready to go down to the transplant floor but they don’t have any beds available, so I stay in intensive care until Wednesday. No complaints from me. I like all the nurses and they attend to my every need. The only thing I didn’t like, though I understand the reason for it, is that they strictly enforce the visiting hours and limit you to two visitors at a time. So my two kids and my wife can’t all be in my room at the same time. My wife goes home at night to sleep while I’m in intensive care since she can’t stay in the room all night.
Finally, a room becomes available on the transplant floor and I’m moved there Wednesday afternoon. There are no formal visiting hours and with an extra bed in the room, my wife can stay all night. And there is no limit on the number of visitors.
The nurses on the transplant floor are all very nice but they have more patients per nurse to care for than the ICU nurses. Betsy become my primary care giver as she is with me 24/7. I am still all hooked up to intravenous lines and bags and various ports so movement is still difficult. Invariably, Betsy or a nurse must untangle me as I try unsuccessfully to sleep or go to the bathroom. So frustrating.
The good news is that I’m feeling pretty good with little pain and have moved to a regular diet. The doctors couldn’t be more pleased with the results of the transplant. I get a shock on Friday when the surgeons tell me I will probably be going home on Monday, March 26, just eight days after the surgery. I look forward to this but Betsy is a little panicked at the thought of just the two of us in our house and being in charge of my health.
Physical and occupational therapy personnel work with me on walking down the halls and even going up and down some stairs. They say I’m doing great and can’t believe I just had the surgery.
Mentally I feel just fine except for being a little drowsy from the lack of sleep. The lack of sleep is probably due to a combination of two things. First is that a side effect of the anti-rejection meds is insomnia. The second is that I’m trying to avoid laying on my staples (there are 46 staples in my stomach) which leaves me to sleep on my back. I’ve never been a back sleeper and I can only doze off for short periods.
Physically, I have very little pain and I try to stay away from the painkillers like oxycontin. I’ve never liked taking drugs that I don’t need and I’m leery of taking painkillers when I can just “tough it out”.
Getting Ready to Go Home
Late Friday afternoon, March 23, my transplant coordinator, who has been wonderful through the entire process, meets with me and Betsy to go over what to expect when we go home.
Some of the highlights are:
• I need to go the transplant clinic every Wednesday so they can keep tabs on my condition.
• We need to record my weight, temperature, blood pressure, glucose levels and fluid intakes and outputs every day.
• A visiting nurse will come to our home to draw blood for testing every Monday and Thursday.
• Physical and occupational therapists will visit 2-3 times per week to get me on an exercise program.
• I need to wash my hands frequently and any visitors will need to do the same. I also have to take precautions regarding me and my visitors wearing a mask to protect me from germs.
• I cannot eat grapefruit or drink grapefruit juice because they interfere with some drugs.
• I cannot eat raw or undercooked fish (hate sushi anyway).
• No alcohol (not a big deal for me).
• I can’t eat at a buffet (too many people spreading their germs).
• No ice unless it’s ice we make ourselves from bottled water (watching out for bacteria).
• Be careful with visitors, especially little kids. Lots of hand washing and wear a mask if anyone has even a mild cold. This is important as I have four grandchildren, all of them six or younger.
• Be careful in the sun because the anti-rejection drugs make me more susceptible to skin cancer (this one is an issue because I love going to the beach).
Back Home
I’m released from the hospital on Monday afternoon, March 26, so I stayed in the hospital for eight days after the transplant. I was expecting a three-week stay, so I think this very good and the doctors agree. One of the doctors said it was better to get out of the hospital to limit my chances of picking up an infection.
We arrive home at about 5:30 pm and I screw up immediately. To get from our garage to the first floor of our house requires me to climb up 13 steps. I’m at the bottom of the steps and Betsy tells me not to move until she opens the door to the kitchen at the top of the stairs and comes back down to help me. Of course, I ignore what she told me and start up the stairs without her. This step climbing is harder than I was expecting. I get to the top and stumble a bit but don’t fall down. I’ll be hearing about this from Betsy for at least a week or maybe forever.
A nurse will come twice a week (Monday and Thursday) to draw blood for the doctors so they can monitor my progress. The tricky part with the blood draw is that it must be done by 8 am every time as I can’t take my ProGraf pills until the blood work is done and I can’t eat until after I take my ProGraf. The other complicating factor is that my veins are terrible and tend to float. Sometimes the nurse can get the blood draw with no problem and other times they need to poke around to find a usable vein, usually with a few unsuccessful probes.
I’m somewhat surprised by the lack of strength in my legs but hopefully the therapists will get me on the right track for strengthening my legs and building endurance. The Occupational therapist recommends that I buy an adjustable shower chair for when I take a shower. Good advice. I also buy a cane but I don’t use it because I’m not comfortable with it. I have some tremors (not unusual after the transplant) in both of my hands and I don’t feel good about putting my weight at the mercy of my arms. Plus, I have never used a cane before and I don’t show a natural instinct for coordinating the cane and my legs.
I can eat pretty much anything I want. My appetite is improving but not back to normal. They recommend only drinking bottled water. I have a lot of fluids in my body and my legs and feet are particularly swollen. I am told that will go away over the course of the next month and I do see progress every day. My feet got the worst of the swelling. I could barely get shoes on when I left the hospital.
It does feel good to be home. It’s certainly more of a burden on Betsy, though, as initially she must help me go up and down stairs, help me walk to the bathroom and just generally be next to me every time I take a step. Eventually I start doing most of this stuff myself.
My Weight
I have a lot of fluids in me when I return home , with swelling in my legs, feet and stomach the most notable. This makes me very anxious to keep an eye on my weight. I do lose weight as the fluids get out of my system. My transplant coordinator tells me that this is normal. My weight progression can be summarized as follows:
• My weight when I come home is 238 pounds.
• After one week I’m down to 220 pounds.
• After the second week I’m down to 210 pounds.
• Thereafter (through six weeks) my weight stabilizes in the 207 to 212 pound range.
• In the eighth week I start to gain some weight and I’m in the 212-214 pound range.
• After four months I’m back up to the 215-220 pound range and then start creeping up to 225.
First Trip to the Transplant Clinic
On April 4, I go to the Transplant Clinic for the first time post-transplant. I meet with my transplant coordinator and one of the Transplant surgeons. They take my vitals and generally talk about whether I am experiencing any pain or other discomfort. Everyone remains highly pleased with the results of the bloodwork and my appearance.
Two big surprises in the visit. First, the surgeon looks at the staples in my stomach and said he was taking them out. This should help me sleep better as I have been trying not to sleep on the staples which leaves me to sleep on my back, not my favorite sleep position.
Second, he tells me I don’t need to come to the clinic every week and not to come back until April 18. Great news and a sign of progress. I thought I would be making weekly trips to the Clinic for several months.
My glucose readings continue to be elevated (low 200s) and I ask whether I should contact my diabetes doctor. The surgeon said that I should contact her. This is somewhat typical as ProGraf tends to elevate glucose levels.
Back Home After the Clinic Visit
I still have occupational and physical therapists coming to the house. The occupational therapist’s final visit with me is on April 9. Physical therapy will continue until April 20. Both leave me with daily exercises. I can do more on my own, making it somewhat easier on Betsy. This is especially true overnight as I no longer have to wake her every time I have to go to the bathroom. I can urinate into the portable urinal on my own and Betsy only has to record the volume, which she can do in the morning.
Sleeping remains an issue. I constantly feel a little drowsy, like I could fall asleep at any time. I do take an Ambien on April 14 and I get my best night of sleep in awhile. I still feel drowsy, though. I don’t like taking sleeping pills, though, and I stop taking them after a few days.
A significant portion of each day is spent on physical exercise, respiratory exercises and taking walks around my house.
We go out to eat twice and it feels good to get out of the house. My grandkids stop over to visit and that is always a fun and spirit-raising time. A good friend of mine also stops to visit and it is fun to talk about the Pirates and Penguins and other normal small talk.
I send an email to my diabetes doctor and she asks me to record glucose readings for a few days (before breakfast, lunch and dinner). After seeing the readings, she says I should go back on Victoza. I think about this and conclude that this may not be such a good idea. I have been on Victoza before and it suppressed my appetite and I lost weight, a good thing at the time. Now, though, I am trying to increase my appetite and gain a little weight. I contact the diabetes doctor again and she suggests trying Lantus, which contains insulin, instead. I run all this by the Transplant team and they have no problem with my taking Lantus.
Tacrolimus Level
This has replaced my MELD score as the blood test result I am most interested in. This apparently is the most important number in terms of watching for the possibility of rejection. A concentration that is higher than the established therapeutic range may increase the risk of associated toxicity, including damage to the kidneys and nerves. A concentration that is too low may lead to rejection of the transplanted organ.
The doctors use this as the basis for adjusting medications, which is more art than science. The level, at least for me, bounces around a bit.
My transplant coordinator tells me that want it in the range of 6 to 8, which is ng/ml.
Mine has been as high as 11.5 and as low as 5.7, but for the most part I have been in 6-8 range. My score on May 14 was 8.1 compared to 6.1 on May 10.
Second Trip to the Transplant Clinic
My second visit to the clinic took place on April 18. The surgeon tells me I look great and he can’t believe it has only been a month since my transplant surgery.
We have some questions. At the top of the list is that on April 15 I woke up with a pain in my groin area, felt like a muscle pull. The nurses were concerned, though, that it might be a hernia, which is pretty common after abdominal surgery. The doctor tells me there is no sign of a hernia, which is certainly good news.
The surgeon tells me I am doing so well that I don’t need to return for another month. This is great and well ahead of the curve.
Diabetes Revisited
As mentioned earlier, one of the side effects of the medicines I am taking is that it raises the glucose level. I am a diabetic who was controlling the disease through diet. Post-transplant my glucose numbers soared, reaching as high as the 300s. My diabetes doctor prescribed Lantus (a form of injectable insulin) and my pre-breakfast numbers did come down, as low as the 120s but usually in the 140s. At my May 8th appointment, the doctor still expressed concern over the fluctuation in readings during the day. Lantus apparently is a long acting drug that does not do a great job of managing intraday fluctuations. As a remedy, she added Humalog onto my regimen. Humalog is also injectable (I’m running out of places to do injections) and is a rapid acting form of insulin.
On the good news front, the doctor told us about a patch and reader that could be used to replace the need to prick your fingers to draw blood and measure the glucose. Both me and my sore fingers are highly enthusiastic about this new development.
Brain Fog
I’ve been experiencing “brain fog” since late October due to Ammonia in my system. The fog continues after the transplant but this time it appears to be due to adjusting to medications with lack of sleep also a potential factor. The lack of sleep is due somewhat to my medications as one of the side effects is insomnia. After I reach the eight week after the surgery, the brain fog starts to lessen and I’m pretty clear-headed. I am told, and Betsy reads online, that this is normal so that’s one less thing to worry about.
Third Trip to the Transplant Clinic and Aftermath
I take my third trip to the Clinic on May 23 and it is pretty uneventful. They tell me I can stop taking Valcyte on June 18 (three months after my surgery), cut my required bloodwork down to once a week and tell me I don’t need to come back for two months. They also say if bloodwork results remain stable the next two weeks, I can start doing it every two weeks. In response to our question, they also tell me I can go to casinos again (yeah!!!) as long as I wipe my hands periodically. That was my personal highlight.
On the same day I also visit the Dermatologist. This was recommended by the transplant team as the rejection drugs increase the possibility of skin cancer from sun exposure. This visit is only intended to establish a baseline for future annual visits. The dermatologist doesn’t find anything but typical old man stuff and she says I’m in good shape, skin cancer-wise.
I return home determined to continue to build my endurance. When I started going to the mall (South Hills Village for Pittsburghers reading this) a few weeks ago, I could only make it halfway around the inside of the mall. This morning (May 29) I made it around five times, so that’s progress. I’m feeling better every day and my appetite is definitely back.
Maybe most importantly, in terms of recovery, my head is clear and I start driving on May 24. This frees Betsy from her chauffeur duties and gives me some independence. I felt very comfortable driving. I guess it’s riding a bike (although I have never ridden a bike).
Fourth Trip to the Transplant Clinic and Other Updates
On July 18 I return to the Clinic for another session. Thumbs up all around. Bloodwork is good, I can stop taking Protonix and I can start getting fountain drinks (non-alcoholic of course) in restaurants. This has a minor irritant as I always have to carry a bottle of water with me when we dine out and I feel like a goof. Those days are over so that’s good. The other good news is that I don’t have to return for another appointment for three monthd and I can go to once a month on my bloodwork.
In other matters, I am now walking six laps around the mall at increasing speeds. I walk for an hour about five times per week, covering about 3.5 miles. I still can’t due much with my upper body as there is still a hernia concern due to the size of my incision. My appetite is back to normal and I am now weighing around 220 pounds (my low was 207). We are heading to the beach on July 21 and I’ll have to be very careful in the sun due to taking the anti-rejection drugs. So I’ll be wearing a long sleeve shirt, a stupid-looking hat with UPF protection and lathering on the lotion. I tell Betsy that I’m going to be dressing like a fair-skinned Irishman (she’s Irish). I’ve never had to worry about that before.
The Importance of Support
This is not a journey you want to take alone. I really don’t think I would have to handle this process without great support from others.
The first line of support is the medical team. If you don’t have confidence in your medical team you should consider changing doctors and/or hospitals. I was fortunate that we had an extremely high degree of confidence in our medical team. Having said that, you or someone in your family (or friends) should learn enough about the surgery to allow good questions to be formulated. There are no dumb questions. While the medical team was great, you are not their only patient so they may not think of everything. In our case, we asked a lot of questions and the medical team was quite good about answering them.
The most irreplaceable source of support, though, was my wife Betsy. When she took the “in sickness and in health” vow 40 years ago, she had no idea what she was in for. While I was pretty healthy for our first 35 years of marriage, the past few years have been a tough time. I can never repay the love, devotion and concern she showed during the journey. I call her my “angel on earth”. I hope she never has to face a serious health issue. I will be hard-pressed to handle any illness she has the way that she did with mine, but I will try my best. This illness made me realize how lucky I am to have her by my side.
Betsy made all my doctors’ appointments, dealt with all nurses and doctors and spent lots of time online learning all she could about my disease, my medicines and the transplant and post-transplant process. From October 2017 through today she has been my driver, diet organizer and everything else you can imagine. Her actions were the definition of love and compassion.
I really can’t say enough about her, but I will stop now before I start to cry.
Others in my family also played key support roles. David and Gina, our two children, were there to lend support whenever needed. Gina was the worrier-in-chief. It was important that I saw the grandkids in this period as they always raised my spirits and made me laugh.
I have three brothers (Ron in Colorado, Ralph in Pittsburgh and Dave in New Hampshire) and they were important in offering encouragement, especially from December through the transplant. I received almost daily encouragement from one or all three brothers. They helped keep my spirits up and Ralph visited me in the hospital and at home after the surgery.
I would be remiss if I didn’t mention my friends, the extended family and even friends of my kids. They offered encouragement and prayers and I appreciated all of it. Do prayers work? I think they have in my case. In any event, they sure don’t hurt.
It’s important to have a support system in place. You will need it.
NASH EDUCATION 