Giving Back - The Next Phase

 

Growing up I had little involvement with anything medical. My only hospitalization was one night when I broke my collar bone while in Boy Scouts. I regularly fainted at even the sight of blood such as when going to the dentist. This has changed in recent years. I have documented many of these aspects of my involvement in this blog before, which I’ll give a synopsis of before addressing my latest activity.

 

Giving Blood: This was probably the hardest decision to make. When one of our grandsons was born in April 2013, he was premature – 9 weeks early. While there were few complications, one of the requirements before he could be released from the NICU was that he had to have a good feeding every 4 hours for a full day. But he kept falling asleep which restarted the clock on that 24-hour requirement. Eventually they decided that he was slightly anemic and so gave him a blood infusion (using a really tiny tube) and then he met the requirement and was released to come home. In his honor, I made the decision to donate blood – my first donation was in August of 2013. I kept that up every 8 weeks for over 10 years until I began having problems with my red blood cell count that excluded me from continuing. I tried again earlier this year, but the problem was still there, so I have removed myself from their reminder list. But it was also my first experience in giving back, and thus made me more aware of how I can support the medical profession.

 

C-diff Study: I have related before how in 2018 I was contacted after a bout of sepsis to participate in a clinical trial for a vaccine which might prevent C-Diff (see https://ramblinrussells.blogspot.com/2019/12/giving-back-medical-studies.html). In that blog I noted that it was going to end in 2020 and I was hoping to find out the study results and whether I had received the actual vaccine or a placebo. The results were that the vaccine was not useful and that I had received the placebo, so I did not even need to include it in my list of prior medications if ever asked. But again, it was a conscious decision to give back and help others.

 

Alzheimer’s Studies: In 2019, I was contacted by the Alzheimer’s Association to see if I was interested in a study related to this disease (see https://ramblinrussells.blogspot.com/2019/12/giving-back-medical-studies.html). Because my paternal grandmother had this and it was suspected that my father did as well, I consented to participate. The initial trials were at UPenn in Philadelphia and required me to drive down there several times a year. Over the next several years I added additional trials, some in Philadelphia and others online. I’ll not list all of them here, but you can read about them not only in the above blog entry but also https://ramblinrussells.blogspot.com/2021/11/alzheimer-studies.html, https://ramblinrussells.blogspot.com/2023/10/dementia-brain-killer.html, and https://ramblinrussells.blogspot.com/2024/10/medical-concerns.html. In one study, I had a PET scan and it was determined that I did not have any of the markers for Alzheimer’s, nor was I ever likely to. I have now stopped driving to Philadelphia, but continue to participate in a number of online studies.

 

Involvement with Others

All the above were done through interactions with medical professionals and did not require any personal involvement with other people. But that started to change when I had a partial foot amputation in early 2024 (see https://ramblinrussells.blogspot.com/2024/01/getting-amputation.html and https://ramblinrussells.blogspot.com/2024/03/back-to-emergency-room.html).

In March of 2025, after a stoppage in their volunteer process for over a year, Jefferson Health/Lehigh Valley Health Network, restarted their monthly Amputee Support Group (ASG). I began attending each month and interacting with other amputees. When they began looking at restarting their amputee volunteer program a few months later, I made the decision to get involved so that I could use my experiences to relate to others having or anticipating an amputation (see https://ramblinrussells.blogspot.com/2025/03/amputee-support.html). Unfortunately, the group in Washington, DC, had stopped doing the training due to budget cuts in the US Government, so I was not able to get to do their training and my volunteer status at LVHN became inactive.

However, in the meantime, another support group had started at the Good Shepherd Rehab Hospital in Center Valley and I started attending that one as well. The amputee coordinator there convinced their management to run a local volunteer training which I went through. I have since had the opportunity to spend a few hours with another recent amputee and help him with the mental aspects of adaptation.

 

The Next Phase

LVHN is now making progress at defining the necessary training for amputee support volunteers. But in the meantime, I am trying to reactivate my volunteer status. I recently got a note from the hospital who are looking for volunteers to work in the Emergency Department (ED). This would involve doing things that could help patients and “allow staff to focus on the patient care. Whether it’s offering a kind word to a patient, stocking supplies, or helping keep equipment where it’s needed most, every volunteer makes a difference.”

I have now progressed in my post-surgery amputation that I have not used my cane for over a month. So I believe that this is a logical next step toward giving back in a way which can help both the medical professionals as well as the patients. Unfortunately, I’ve had multiple trips to the ER during the past year. But this has also made me aware of all the ways that volunteering there can be useful. I’ve asked that my status be reactivated and that I get my official volunteer badge and any necessary training next week.

This will be a commitment of at least 3 4-hour shifts in the ED each month. But it will be one more way that I can give back and help others in a personal way. I know that getting out of my recliner and spending a 4-hour shift on my feet will have its own set of challenges. But I also believe that giving back to others by being able to relate to them is important. I’ve been focusing on encouraging others in our church for the past two years. Now I’ll be able to do the same for individuals who need hospital services – at least those who enter via the ER/ED.

As always, I hope to post future updates on my blog as a way of encouraging those who follow it to consider doing the same. Christ is recorded in the Bible (Matt. 7:12 and Luke 6:31) as saying “Do to others what you would have them do to you.” This giving back effort of mine is one way that I can follow that command of Christ. In what way will you consider doing the same?

Cousin Tribute – David Welles Pierpont

I was saddened this weekend to hear of the passing of my cousin Dave. While we were not real close in recent years, he was my best friend during our time of growing up in Wolcott, CT. As I sat with tears in my eyes due to his passing, I was also overwhelmed by all the things that came flooding back from my memories of him. I’d like to relate all these things for posterity and hopefully give you readers a sense of why and how were so close.

 

Setting the Stage

My father had a rough time growing up with his parents getting divorced, remarried, etc. When he was 16 and in 11^th grade his older sister got a job at Scovill in Waterbury and the two of them moved there to live with his grandfather, Louis Russell. His world then began to revolve around that part of Waterbury as well as with his classmates at Leavenworth (the vo-tech of its day) and with the local church, Mill Plain. One of his best friends was Clarence Pierpont (known as Zeke) who was a classmate as well as he attended that same church. The two of them became buddies. Zeke was 2 months older, having been born on 9/9/1920 and my father on 11/20/1920. They both began working after high school.

During the war, my father was one of the church members who served in the military and whom those not in the military corresponded with. This eventually turned into a relationship with Zeke’s younger sister, Sylvia. This relationship was cemented in April 1946 when my father had a short leave from the Navy and this turned into a marriage in September of that same year. My father had always wanted a large tract of land and so he used his separation pay to buy a 23-acre piece of property in the north of Wolcott. The roads were only dirt and there was only Witham Rd (named after the prior owner of that land) and Seery Rd (named after the developer of that part of Wolcott). There were only 3 homes in that development.

Meanwhile, Zeke had also finished his military service and was living back home with his parents in Waterbury. He was involved in the YTC (Youth Temperance Council) of their church and through that activity became acquainted with a member of the YTC from Meriden, Barbara (Babs) Bishop. He used that connection to attend YTC meetings with her and they were married in early 1948. My father participated in their wedding. Meanwhile, Mr. Witham, having sold his original house to my parents, had begun building another house in an offshoot of Seery Rd in 1947. But where for Zeke and Babs to begin their married life? What better than near his best friend, my father. They purchased that small house from Mr. Witham in 1948. The offshoot of Seery Rd had not yet been named, so when they went to the town hall to register their move, the town clerk gave them the option of naming it, so they chose Barclare – the combination of their two names.

This friendship and closeness of the two families was to last for the next 60 years.

 

The Next Generation

Both the Russell and Pierpont families did not waste a lot of time in starting their respective families. My mother became pregnant in the fall of 1947, Babs became pregnant about in early summer of 1948. Thus, it was only natural that their respective children would also become best friends. Both families eventually had five children – three boys and two girls. Two of them, Charles (Chuck) Russell and Robert (Rob) Pierpont, were born only 3 days apart in 1954 and with the then practice of a week of confinement, both Sylvia and Babs were in the hospital together. The final children, Sandy Pierpont and Edward Russell, were also born just a few weeks apart in Dec 1957 and Jan 1958.

Dave and I just naturally became best friends as well as relatives and neighbors. I could see the Pierpont house out my 2^nd floor window over the two intervening yards. Our parents also continued their close relationship over the decades. Two examples come to mind. One year our grandfather gifted the two men an extension ladder – but he gave one half of the ladder to my father and the other half to my Uncle Zeke. So, if either man needed the benefit of the longer ladder, he just borrowed the other portion. Secondly, when Uncle Zeke passed away in Mar 2006, my father’s words were, “I’ve lost my best friend!” That played into his own loss of will to live and he died just six months later.

 

Growing, Playing, and Working Together

With the close connection of our parents, and with both Dave and I being the oldest of 5 children, the opportunities to become close ourselves was natural. The earliest picture I have of the two of us was taken around June of 1949 when I was 10 months old and Dave was just 3 months old. Our respective mothers were standing together outside the back door of our home and showing off their first-borns. The other picture was taken in the summer of 1955 when Dave and I were 6 and 7 respectively. I’m the one in the back with the coonskin cap and Dave has his arm wrapped around his younger brother Rob.

[Dave pictures]

There was a well-worn path between our respective houses (but avoiding the intervening yards as they liked their privacy). But there were also paths in the woods behind our house that went past the pond, past the two pine trees, and through the blueberry glen, eventually coming out at the end of Barclare Lane. With the safety of the isolated neighborhood, we had lots of opportunities to play together. The only thing preventing even closer togetherness was that the grade cutoff in Wolcott at the time was the end of the calendar year. So, since I had been born in 1948 and Dave in 1949, we were in different grades in school. Instead, Dave became a classmate of my sister Beth, even though he was closer in age to me (7 months) than to her (9 months).

We also began working together. Some of that was volunteering. When my parents’ house needed to have a new roof, my father contracted with a neighbor. As they ripped off all the old cedar shakes, they tossed them down into the yard where Dave and I gathered them up. But some working together was for pay. Mr. Seery began clearing a section of the woods at the far end of Barclare and turning the trees into charcoal. He would load the branches into a structure of metal/cinder block, seal the entrance, and light it on fire. Over several days the wood would turn into charcoal. But then it needed to be bagged so it could be sold. That job was assigned to Dave and I. One would use a shovel scoop to gather a small pile of charcoal, the other would hold the bag open for the shovel to be emptied in, and then when full the bag would be sealed with a metal twist-tie. Mr. Seery paid us so much per bag. When we came home, we would be black with charcoal dust and be sent immediately to the bathroom to wash up.

This same working together would come into play in another way. For a while, Uncle Zeke was the head of the local forest fire crew. In those days the local volunteer fire company would handle structure fires and anything that they could reach with their hoses. But if the fire was back in the woods, there were state forest fire crews who had “Indian tanks,” fire rakes, and brooms to make breaks in the leaves and put out the burning stumps. Although we were not technically old enough, Dave and I were part of his dad’s crew. Most fires occurred during the summer when there was no school, but there were even rules about how we could be released from school in the spring/fall if needed. Dave and I worked alongside each other on many fires – either in Wolcott or in surrounding towns.

 

Heading Off to Later Life and Marriage

As I mentioned above, I was a year ahead of Dave in school. When I graduated in 1966, I went to college in Michigan where I spent the next 5 years. Toward the end of that time, I met and fell in love with the woman who became my wife, Donna. We got engaged on 9/5/1970 and married the following year. We lived in CT for the next 4 years, then moved to PA in 1975 where we still live.

Meanwhile, Dave chose a military route – enrolling in the US Air Force. After the war he was assigned to Langley AFB in Hampton, VA, where he met the woman of his dreams, Bev. They were engaged just two weeks after Donna and I. But they set the date of their marriage for 6/19/1971, a month before Donna and I got married on 7/17/1971. So, while I was born 7 months before Dave, and graduated from high school a year before him, he married a month before me!

Dave and Bev remained in VA until Dave’s passing this weekend. Donna and I remained in PA. Both couples had their 55^th anniversary earlier this summer. There were other parallels – both couples had two children: two girls to Dave and Bev, one boy and one girl to Donna and I.

 

Later Connections

Living in separate states, there were not too many opportunities for face-to-face meetings in the last half-century. Most of these were when both couples were visiting family back in CT – either during the summer or at Christmas. My children also remember meeting them when they stayed with their grandparents in Wolcott for a few weeks each summer.

But there was one time when we met in VA. I had taken my two children on an extended vacation to the south. We went down through DE and across the Chesapeake Bay Bridge to VA where we stayed on the beach. The following day we went to Dave and Bev’s house for a visit. We then continued west to Monticello, up through VA to Luray Caverns and then back to PA with a stop at Gettysburg.

We also have maintained touch through social media – being friends of each other in Facebook. While it’s not the same as meeting face-to-face, it does mean that we’ve been able to continue keeping touch with each other over the years.

 

Conclusion

As I’ve been writing the above, the tears are freely falling again. Dave was not just a cousin and a neighbor. He was my best friend for many years and we shared a lot of experiences together. Now at the age of 77 he has gone on before me to glory. I will miss him until we meet again in heaven.

Gall bladder issues

Well, after 5 days in the hospital with gallbladder issues, I got back home last night and got caught up on missing sleep. I still have a bunch of marks all over my arms from blood tests, but those will heal fairly quickly.

Thursday night I was getting ready for bed and started feeling pain under my breast bone in the center. I was afraid it was from my heart, so had my wife call 911 and get the ambulance to take me in. They fairly quickly determined that my heart was fine (whew) but weren't sure what was going on. The pain, which was pretty intense, eventually moved down and to the right and they determined it was from my gall bladder. Meanwhile I had xrays and a CT scan as well as a number of blood tests. They made the decision to admit me as the pain wasn't going away. They also put me on a liquids only diet.

Over the next few days, that liquids only diet gave me continual diarrhea and held me into bed while they tried to figure out the cause and best solution. I spent over 24 hours just waiting for a spot to open up for an MRI which could tell the doctors what they were dealing with. They then noted that while my bile ducts appeared fine, the gallbladder itself was "angry". Then began the negotiations between the GI team and the surgical team on what to do. Since there were no gallstones involved, the surgical team declined to actually remove my bladder, so the GI team decided that they would handle everything internally and put a stent between the gallbladder and my duodenam. So that is what they did. So I still have my gallbladder, but it can now drain internally - pain gone!

Another day or so in the hospital, on day 5 they finally agreed to take me off the liquids only diet and get me on something else which would eliminate the diarrhea. I had to actually refuse my last breakfast before they took me seriously and then sign a release form so they would turn off the bed alarm so I could go the bathroom when I wanted instead of calling the nurse. So late Tuesday I finally got released so I could sleep in my own bed without all the vital checks, finger sticks before every meal, and lack of meaningful sleep.

Since then I have already seen my endocrinologist (scheduled prior) and have new appointments for a followup with my PCP and a quick ultrasound of my thyroid (which was not included in my MRI), and a 6-week followup with the GI surgeon. I've also got 3 days of anti-biotic pills for ensuring I'm healing properly.

The good news out of this is not only a release of the pain, but because of the constant checking of my blood sugars, I am paused in taking Farxiga (daily pill), Metformin (2 pills in the morning, 2 more in the evening), Mounjaro (weekly injection) and my Lantus (insulin) dosage is down to just 15 units/day (mostly due to the 40 pounds I've taken off in the past year). Fewer pills is good!

While I wouldn't wish this type of thing on anyone else, it's good to now have it behind me. Thanks for all who were praying for me over the past week - your prayers are what kept me going when the pain was worst and the diarrhea was causing me to mess my bed and PJs all day long.

A New DNA Match

 I have a very extensive family tree which I maintain in Ancestry.com. I’ve also had my DNA examined and put there to help find relatives. I’ve tracked down most of my close relatives, so I know that there are no incidents of hidden relatives. But I had stopped looking at the distant matches because they are so extensive. My paternal grandmother’s father was an Ashkenazi Jew and because of the frequent inter-marriage between members of that group of individuals I have over 2500 people who share a small portion of my DNA.

            However, I recently got a text message from one of my 3^rd cousins, Pat, who also is active in using Ancestry.com. The first few lines of her text were “This is an Ancestry question for you. I had a new match today for Alexander _ @ 39 cM. He is showing 3^rd great grandparents as Benoni Slocum + Phebe Russell in Dutchess, NY.”

I checked, and as Pat indicated, found that Alexander was also in my list of distant matches. I have a 37 cM DNA match with him. Since Pat and I share 119 cM of DNA and the amount of match goes down by about 50% with each generation, that means that Alexander is about 2 generations farther up the tree, making him a 5^th cousin to both Pat and me.

 

The Russell family line

            Our Russell line in the US began with Robert Russell (1730-1811) who was a poor, illiterate Scottish farmer who came to the US around 1750 and settled in the Hudson River valley of NY. His son, John, was born in 1756 and served in the local militia during the Revolutionary War. John’s son, Caleb (1775-1830) was the oldest of what would eventually turn into 15 children of John. Caleb and his wife Parmea had 10 children, one of whom was Silas (1803-1888). Silas’s youngest child was Walter (1852-1895), who is the common ancestor of Pat and me. He is our great-great-grandfather. So, if Alexander is connected two generations farther up this tree, he would have been descended from Caleb.

            I had investigated all the children of Caleb and Parmea, but information is somewhat scarce as they lived in the far eastern corner of Dutchess County, NY, and they were illiterate farmers. The primary records available were the US census records of 1800, 1810, 1820, 1830. But these census records only listed the name of the head-of-household with tic marks for each individual in the family by gender and age ranges. In many cases, especially the men, I was later able to find them married and living nearby, but since there were no recorded marriage records for this family, it was more difficult. There was one female who was in the 0-10 range in the 1810 census and in the 15-40 range in the 1820 census, but absent thereafter. I had recorded her as Unk Russell, born about 1805-1810 in order to fit her into those ranges, but had no other information about her.

 

The Slocum Family

Alexander’s surname was of Italian origin, so he would not be connected to me via DNA through that side of the family. However, his mother’s maiden name was Slocum and that part of his family line also came from Dutchess County. He had recorded the name of his great*3 grandparents as Benoni Slocum and Phebe/Phibi Russell (note that names were often recorded phonetically). There was no information about Phebe’s parents. And there were many other references to Phebe/Phoebe/Phibi in other places, but there was no reference to her parents in any of those trees.

Later records such as census records and a death record all showed her as being born around 1807, 4 years before her husband, Benoni. So these were all consistent with the possibility of her being the same individual as the Unk Russell in my family tree who was born somewhere in the 1805-1810 timeframe. But could I either confirm my belief, or at least gather enough information to give an indication beyond a reasonable doubt?

 

Confirming my Suspicions

            Other than being of the proper age and being in the same county, what else could I find? I went back to the census records of 1810 and 1820 for Caleb Russell that I had used to get an age estimate for his Unk daughter. But rather than look at just the single line for the Russell family, I looked at the rest of that page. And there was my first bit of “proof”. Living only 9 houses away from Caleb was the line for David Slocum, the father of Benoni. That was true in both those census records – taken 10 years apart. So the children of Caleb and the children of David would have grown up knowing each other, going to the same small schoolhouse, etc. While Caleb’s daughter was four years older than Benoni (as confirmed by later census records), they would still have been friends for many years.

            I also discovered one other “coincidence”. Caleb had a younger sister, Phebe. This sister had gotten married around 1805 and thus changed her name from Phebe Russell to Phebe Wixson. So when Caleb had a daughter just a few years later, he could have easily named her in honor of his sister.

            Phebe and Benoni Slocum married around 1830 (the reason she was not found in the 1830 census). They had their first child in 1833. Thus, it’s quite possible that they were on their honeymoon in 1830 which is why neither of them appear in the census records for that year.

 

Conclusion

While I have no definitive “proof” that Benoni Slocum’s wife was Phebe Russell, I have more than enough evidence to make this conclusion. Not only was she born in the appropriate timeframe (4 years before Benoni), but she lived not just in the same county, but right down the street from her future husband. And her father would have just been honoring his younger sister who had the same name.

            I would not have had the impetus to do this investigation into the life of my great*4 aunt except for the DNA match from Ancestry.  I would have not had a reason to do the investigation of this DNA match as it was buried deep within the 2000 DNA matches from my Ashkenazi Jewish ancestors except that my cousin, Pat was no hindered by this and saw the new DNA match being posted.

            So, welcome to my new 5^th cousin, Alexander – the latest identified member of the extended Russell family!

Writing Poetry

 

You might surmise that someone whose education was in computer science and business and who spent his work career in those same fields would not have much writing or creative ability. But you’d be wrong. I’ve had the opportunity this week to write two different poems and would like to share them.

 

The first was due to a posting that was shared by a high school English teacher of several discarded first lines of potential poems that had never been written. This inspired me and I chose a first line that I thought would work well. You can see the result below. This took me only 20 minutes or so.

 

---------------------------------------------------

 

Like a Bowl

 

I am a bowl, chipped at the rim,

Still to be used, but without the fine trim.

Some look at me and turn up their nose

But I'm useful still, and better than those.

 

A lot of people are just like that,

They're worn down from use, but handy to have,

Battered and scraped, and looking quite poor.

So love that old bowl, and use it some more.

 

 

This next one was from an English assignment from one of my grandsons. He freely admits that writing is not one of his skills. But he had to write a sonnet. So he provided the topic, and I gave him possible rhyming words. He then put his ideas down and I did the necessary wordsmithing to put it all into iambic pentameter as required. The below joint effort took about a half-hour.

 

 

Ode to a Choo-choo

 

I see them on the road through nearby town

It’s riding on a track that’s made of steel

It has more cars when going up than down

I love the way it roars and how it feels

 

The wheels on all the cars are set in pairs

The sound they make is always clicky-clack

When going fast they move a lot of air

The engine’s on the front but not the back

 

The ones between might be a box or tank

There’s no caboose, they’re all now very dead

Most cars are written on, and never blank

The final car has lights, it’s called a FRED

 

To know these things I need to use my brain

The thing I love the most is called a train.

 

 

So what do you think? Have I lost touch with my creative side? I freely admit that I’m better at structured writing, i.e. poems with rhyme and meter, than with the blank verse that’s more common these days. But this kind of writing is still quite fun to me.

 

All in the Numbers

 

When getting bloodwork the result is most often expressed as some sort of numeric value. I’ve decided to pull many of these number over time to give a summary for my primary care physician whom I’ll be meeting with in a few weeks. For the most part, the final number in each of these areas is fairly recent, i.e. in February, if not, I’ll indicate in the commentary. There are many more such numbers in my test results, but they are all pretty consistent and not an issue in the various medical issues I’ve been dealing with.

 

Weight: 234 >> 213 >> 203

I’ve started a habit of checking my weight once a week and recording it. The first in this series dates back to last April, i.e. 10 months ago. It was then that I started taking Mounjaro to help reduce/manage my blood sugars (which it has done a good job of doing). But a side effect of the GLP1 is to reduce your desire for food and thus impact your weight. The second number is a resultant reduction of my weight of roughly 20 lbs. The last 10 lbs is the result of my wife managing my diet because of my liver problems. I’m pretty satisfied with my current results, but wouldn’t mind another few lbs (I’ve had one of my grandsons make two new holes in the belt I most commonly use).

A1C: 8.9 >> 5.3 >> ??

The medications (Metformin and Lantus) I was taking to try to manage my diabetes needed some additional help, so last April I was prescribed Mounjaro as well. The goal of the endocrinologist was to get me under 7.0 into the “managed” diabetes range. However, by the time of my first episode of HE in November, I was down to 5.3, the more typical non-diabetic area. With the permission of my endocrinologist, we reduced my Lantus dose from 38 to 33. I monitor my blood sugars on a daily basis, but I’m still waiting to get my A1C checked again next month when I will see her and get a new rating to see if further adjustments are needed.

Ferritin: 11 >> 15 >> 51 >> 114 >> 138

Separately, it was noted two years ago that my iron levels were too low and I no longer qualified to give blood. I had a total of 3 IV infusions with a goal of getting my level over 100 – which you can see were successful. I was a little surprised in February that my reading had continued to rise, but this is still in the “normal” range. I was able to once again donate blood.

Triglycerides: 481 >> 312 >> 296

My triglycerides have always been too high, peaking at around 900 several years ago. I had brought them down into the 300-400 range with medication, but when that medication was no longer available my level started back up again. I am now taking a fairly expensive fish oil supplement and trying to be very consistent and my rate is coming back down to even less than it had before. Since the goal is to get my level closer to the “normal” range of <150, I still have a ways to go. This will be one of the discussion items with my PCP next month.

Bilirubin: 2.8 >> 2.3 >> 1.6

When my liver started having issues a few years ago, one of the few signs was my bilirubin. I peaked at a reading of 2.8 at the beginning of 2026. Now with a reduced diet that my wife is keeping me on, I have successfully brought it back to normal levels. This is a major factor in my MELD score, which I’ll discuss next.

MELD: 17 >> 12

I only got my first reading of this back at the beginning of the year. This score can range from a low of 6 to a high of 40. 10 or less is considered as normal with increasing concern as it gets higher. The only way to “fix” a liver permanently is a transplant, but not only am I considered too old, but with the number of livers available being rather small compared to the demand, anyone with a score of <25 is not eligible (and a score above 30 is indicative of being in a coma). But since the only symptom I have is my 3 episodes of HE (i.e. no jaundice, no ascites, etc.) taking it back down so quickly just through the use of two medications is a good sign. I’ll see the gastrointestinal doctor again at the end of June and also get a new MELD score at that time and see what she says.

Ammonia: 191 >> 181 >> 164

One of the goals of the two HE medications I’m taking is to change the ammonia (NH3) in your blood to ammonium (NH4) so it is not absorbable by the liver and leaves the body via your intestines. This measure is one indication that the medication is working and I am VERY faithful at taking my daily medications. The “normal” range for ammonia is 72 or less.

 

In general, I’m pretty pleased with the results above. I’d still like to see improvements in my triglycerides and ammonia. But if I can stay on the path I’m on, through diligent following of my medications and with the oversight of my diet with the assistance of my wife, I hope to continue to have a reasonably long life to enjoy with her and all my family and friends.

 

Liver Cirrhosis

I’ve made a number of postings related to Hepatic Encephalopathy. Now I’d like to delve a little deeper into the cause of HE where the term Hepatic refers to the liver, in particular cirrhosis of the liver. I originally thought I could do some research and post my findings, but, as I have discovered, the pathology of the liver and its relationship to other organs is a very complex subject. Thus, instead, I’m going to list a few links to research that others have done and then a little about how this relates to my own case.

Here are three good links which have a lot of information (don’t try to follow all the details in them unless you have a good science background):

·        https://my.clevelandclinic.org/health/diseases/15572-cirrhosis-of-the-liver

·        https://www.youtube.com/watch?v=junNUlypCwU

·        https://www.youtube.com/watch?v=kHB5e-4q7l8

So, how am I doing at managing my liver issues? Back in early January when I was going through my last bout of HE, my bilirubin peaked out at 2.8 (normal range is .2-1.4). That’s when I started on the appropriate medications (which manage the issues but cannot reverse them). My primary care physician commented at the time that I had brought that level down to 2.3. I had some additional bloodwork in early February and my bilirubin was down to just 1.6, only slightly elevated from the upper end of “normal”. So that’s a really good sign.

The other factor that I was watching was my ammonia level, something that I had only recently been tested for after my HE began. At the end of December I peaked at 191, where the “normal” range is 18-72. I was down slightly in early January to 181, and then in mid-February by nearly 10% more to just 164. I still have a long way to go in this measure, but a drop of 15% cannot be ignored.

Thus, while my overall MELD score is still a 14, I’ve made quite a bit of progress in the right direction. I remain a long way from having a high enough MELD score to qualify for a liver transplant, but as long as I can arrest the symptoms like the above ones (and thanks to my loving wife who is focusing a lot of her time on getting me on the appropriate diet), I’ll have a reasonable chance of living for several more years. But this is not a fun journey and not something that I would wish on anyone.