The human body is amazingly complex. One of those complexities is blood. Not only is this blood composed of a number of types of cells, but these cells are responsible for carrying elements throughout the body and back again. In their final stage some of these waste elements are transferred to other items such as urine, so when I say “blood” in the below paragraphs, be mindful that I am also using these other items. After some discussion of bloodwork and diagnoses, I will also mention some other related topics that are currently impacting me in this same area.
Bloodwork
Hospitals
are busy places. There are some activities that impact their patients that I’d
like to discuss. First, in order to monitor their patients there is a constant
stream of testing. Our primary hospital here has a tech who goes around and “checks
the vitals” at least once a shift. Even overnight, this same activity takes
place at every shift change, i.e. including at 3am. In addition, anyone who is
classified as diabetic gets a finger stick and their blood sugar checked before
and after each meal. And all this of course is in addition to any testing for
the reason the patient is there (MRI, CT scan, EEG, ECG, etc.), and these go on
24 hours a day. So not only does one feel like a pin cushion, but you don’t get
much sleep either.
And things don’t stop when you
finally check out and go home. There is required bloodwork that may be
scheduled so the doctors can continue to see if you’re recovering properly, and
other bloodwork that is needed for a later follow-up meeting – perhaps 6 months
or a year later.
We’re fortunate here in the Lehigh
Valley that not only is our primary care physician (PCP) a member of a group
that is “owned” by the local hospital, but that the local testing service is
also a subsidiary of the hospital. And not only do they all share the same
computer system, but that system, containing all the test results, is
accessible to the patient online whenever needed. The below charts all come
from that computer system.
Diagnoses
All doctors go through increasingly
complex and focused education so they can be experts in their specialty. But
education does not mean that the doctor is also experienced. And in less metropolitan
settings where doctors may have to be the local expert in several areas, that
may make the job even more complicated. Thus, experts who work at large
research hospitals or university settings often put together relatively easy to
understand/use diagnosis tools that can substitute for this lack of experience.
In this section I’d like to show one such diagnostic tool that I’ve recently
been exposed to because of my liver (hepatic) problems.
This tool is called the “Child-Pugh”,
not because it has anything to do with children, but because it’s named after
the two researchers who developed it, one of whom has the last name of “Child”
(see https://www.mdcalc.com/calc/340/child-pugh-score-cirrhosis-mortality#evidence).
This tool looks at five of the many
items from this bloodwork, rates each item on a 1-3 scale, and asks that you
add them. The resulting total score gives an estimate of the severity of liver
cirrhosis without requiring the doctor to do a liver biopsy with its
accompanying risks. Here are the five items measured for this tool, the scale
of each, and my own personal results:
Bilirubin (<2, 2-3, >3)
[Bilirubin,
bilirubin-2]
As you can
see, my bilirubin was higher during my recent incidents of hospitalization, with
my latest reading being 2.3. Looking back over the past 10 years, except for a
few times of hospitalization, my readings have been in line, i.e. <2. I’ll
have more to say about this below under the section on diet.
Albumin (>3.5, 2.8-3.5, <2.8)
[Albumin]
Aways
firmly in range, i.e. 4-5
Prothrombin (<1.7, 1.7-2.3, >2.3)
[Prothrombin]
Although
there is a recent spike to 1.4, this is still within the desired limit.
Ascites (absent, slight, moderate)
[Ascites]
Not a
numeric value, but testing in this area indicates none found.
Encephalopathy (none, grade 1 (restless,
sleep-disturbed, irritable/agitated, tremor, impaired handwriting)-2
(lethargic, time-disoriented, inappropriate), grade 3 (somnolent, stuporous,
place-disoriented, hyperactive reflexes)-4 (unrousable coma, no
personality/behavior))
I have no
chart to go with this, but the reason I was taken to the ER and hospitalized
was due to my exhibiting all the issues in grade 1. I’ll have more to say about
this in the next paragraph.
Adding the
results in these areas (2,1,1,1,2) give me a composite score of 7. 5-6 is
considered “normal”, 7-9 is considered “moderate”, and 10-15 is considered
"severe”. Thus, of the five areas, only the first and last are anything
but “normal”. But Encephalopathy is not a measured item that can change based
on any subsequent bloodwork, it is observational and will never disappear from
my record. I could go several years without any other occurrences of this, but
having it once in my record would seem to mean that I can never get back to
grade 0 in this measure and thus the lowest score for me in the future would be
a 6 instead of a 5. Something about this seems a little unfair.
Diagnosis
and Diet
Many articles on the subject of
disease use language such as “diet and exercise” as at least a partial solution
to various diseases. While I had eliminated non-sugar soda several years ago, I
had replaced it with diet Mt. Dew which tasted about the same. I also often had
a box of snacks in my room. I tended to have only one bowel movement every few
days and was often “stuffed up”. But the nutritionist who met with us on my
last ER visit who made a few comments and provided me with the hospital
furnished meds indicated that “poops are your friend” and they would ideally
like me at 3-4 per day. She also recommended the “Mediterranean diet” (https://my.clevelandclinic.org/health/articles/16037-mediterranean-diet)
which emphasizes plant-based foods and healthy fats, saying that you eat
mostly veggies, fruits and whole grains. My wife has taken charge of this area.
She is also trying to create a sodium-limited diet.
Not known for any conservative
leanings, Prevention magazine published an article a few years ago (3/1/2023)
entitled “31 Foods that boost liver function, according to research and
dietitians.” As they address what they term as NAFLD (Non-alcoholic Fatty Liver
Disease) about 2/3 of their list of 31 foods are exotic seeds/grains from other
parts of the world. But of those remaining, nearly all of them are now a part
of my diet. It remains to be seen what their ultimate impact will be, but if
all I do is drop my bilirubin from the 2.3 on my last bloodwork down to below 2
like it was until recently, I’ll be happy. [Note that I put little trust in
this source. For example, one of the food suggestions was based on a sample of
only 25 people, no control group, no peer reviews, and only noting that 52%,
i.e. 13 of the 25 people had a positive reaction. Not a very scientific
review!]
I’ve also been working on the
exercise aspect. I had planned to start doing some limited walking (with the
assistance of my cane) – just daily trips to the mailbox or down the street. With
my lowered weight this year I thought I could handle that. But the cold single-digits
are upon us and there is a lot of snow and ice outside so that’s not wise.
Instead until the spring season begins I have purchased a low-cost exercise machine
that I can use on a regular basis (it folds up so takes minimal room). Just got
it yesterday and I’m slowly getting adapted to using it, despite my half-foot
amputation.
Cost
Implications
The cost of medications is a moving
target. It used to be that pharmacy companies (generally based in the US),
spent a lot of money on drug development, clinical trials, and getting FDA
approval. These companies would recover
this cost through the cost of the drug, and the federal government was
forbidden from negotiating prices. This began changing in 2022 as part of the
Inflation Recovery Act under then President Biden when they announced that they
would be choosing just 10 drugs where price negotiation would begin. They were cognizant
of the fact that many families had to make tough choice – like do I get the
drugs I need or do I put food on the table. It took a while for this to get
worked out, but the number of drugs or drug families is now 15/year. Here is an
announcement from a few months ago on just one drug family (https://www.whitehouse.gov/fact-sheets/2025/11/fact-sheet-president-donald-j-trump-announces-major-developments-in-bringing-most-favored-nation-pricing-to-american-patients/).
(Note – Mounjaro, which I use to
treat my diabetes also has a side effect of weight reduction. One of its
ingredients is a GLP-1 (glucagon-like peptide) much like Wegovy which you may
have seen advertised by some Hollywood A-listers. But it also contains a GIP
(glucose-dependent insulinotropic polypeptide) that encourages fat reduction by
reducing how much fat is stored and stops the amount of fat in the body from
increasing.)
By putting these drugs on the plan and
requiring that the drug companies sell them in the US for the same MFN (Most
Favored Nation) price as they offer to other countries, this will reduce the
pricing, in the case of Mounjaro, from over $1000/month to only $350.
For their part, as a representative
of the many older retired folks such as myself, AARP had eliminated the
complicated “donut hole” coverage scheme and gone to a concept called OOP (out
of pocket) maximums. For 2026, OOP is $2100, after which all your drugs are paid
for by your Part D insurance of Medicare (assuming that you enrolled in that
Part D plan).
One of the other 15 drugs for 2027
is called Zifaxan (also sometimes known as Rifaximin), which helps treat
hepatic encephalopathy. This is being offered through the hospital pharmacy at
about $1200/month (for just 60 pills) or $14,400/year – pretty pricy! The GI
coordinator has also passed me information on getting the drug through a Canadian
pharmacy for much less, or getting me connected with a company who will sell me
income-limited credit cards to reduce the cost.
Two weeks ago, AARP took the next
step in the process and added Xifaxan to their official formulary list. But
with me already using enough other medications to take me past the OOP, the net
additional cost will be zero, even before the MFN pricing is determined and put
in place for 2017. This is one more instance where it appears I made the right
choice in enrolling in the AARP Part D plan back when I turned 65.
Diagnoses
and Follow-ups
I’d like to
finish this long blog by detailing all the various medical areas I have dealt
with over the last 25 years, and where they fit in the above picture.
PCP – The job of the PCP is to monitor
what’s going on in your life and make medical recommendations. They schedule an
“annual wellness check” for all Medicare patients and use several of the
comprehensive bloodwork tests to look for trends that they can pass along to
you. They also monitor your vaccinations (preventing a disease is a lot cheaper
than having to deal with you getting it. I’ve had to delay this meeting twice
in the past few months because of dealing with my current liver issues. But I’ve
taken the necessary bloodwork tests and will be meeting with her in a few
weeks.
Urology – in 2001 I had my [only]
encounter with a kidney stone. It was very painful. During the treatment and
removal process, the urologist noted it was a uric acid stone. This is the same
material that can cause gout if it settles in the ankles. After about 5 years
of follow-up, he indicated that we did not need to meet again. The job of
refilling the low-cost medicine (Allopurinol) used to keep the urine from
getting too acidic was turned over to my PCP at the time.
Dermatology – on two occasions I noticed some
small bumps forming on the skin of my forearms. Fearing it might be caused by
skin cancer, I scheduled an appointment with a dermatologist. Both times he cut
off the growthe and sent it for biopsy, and both times it came back negative. He
gave me a prescription (betamethasone) to be used in the future. I recently
started using it again on a new round of these bumps, but I now operate
independently of the doctor.
Neurology – Since my current set of issues
had a mental component, neurology got involved. As the testing needed is quite
involved, they operate under the principle of “Diagnosis by Exclusion” i.e.
finding all the things it's not. Getting no positive responses from the other
medical areas, they needed to do their own testing and see if the remaining
cause (mini-stoke or TIA) was indicated. After 24 hours of testing, I received
the following message from them: “Your EEG did not show seizures or findings
that indicate you are at an increased risk of seizure. We will discuss this
further at your next visit.” So I’ll simply look for a follow-up visit perhaps
a year from now.
Hematology – about a year ago, I found I was
constantly being rejected when going to give blood because my iron level was
too low. The hematologist said that it was like my body had a slow leak in it
and recommended getting IV iron transfusions periodically. At that point my
bloodwork showed a level of only 10. His recommendation was to shoot for a
level of over 100. My readings since then have been 11, 15 [feeling like it
wasn’t working well yet], then 51, 114, and recently 138. I have one more test
and then a follow-up visit with him later this spring, so we’ll see what his
recommendation is then.
Cardiology – the most significant medical event of my life, a “widow maker” heart attack happened in early 2005 (21 years ago). Because of my quick response, I am a survivor. I have no long-term issues, but I continue to have twice-yearly follow-up meetings to ensure it remains that way.
Endocrinology – diabetes is a messy and
wide-spread disease. In type 2 diabetes the body doesn’t make enough insulin or
doesn’t use it properly. This chronic condition is managed with lifestyle
changes like diet and exercise, and sometimes medication. So medication has
been my fallback position. I currently take pills (twice daily), an injection
of insulin (twice daily), and another injection (once a week). This last
injection seems to have done the trick with my body weight down nearly 30
pounds over 9 months. When I began having my current problems, there was a
concern by the medical team that I may have overdone my routine and with the
endocrinologist’s permission, we reduced my daily Lantus dosage. But now with
my weight even further down and my wife’s focus on my diet, we’ll have to look
at that again. I have two follow-up bloodwork tests and a scheduled meeting
with my endocrinologist in two months to make those decisions.
Foot
Surgery – in January
2024 I went to the ER feeling pretty lousy. While the staff was looking for the
cause, one of the blood tests that they ran was on kidney function. The bottom
line, i.e. the diagnostic, in this test is called an eGFR (estimated glomerular
filtration rate). My eGFR was pretty horrible with a score of 10, indicating that
my kidneys were close to failure. However, that was actually not the case. What
I had was an infection around the area on my right foot where I had been
working on correcting for several years. But now I had developed sepsis. One
definition I have found for sepsis is “a life-threatening medical emergency
where the body’s overwhelming response to an infection triggers a chain
reaction …” In this case, the infection in my foot was being picked up by my
blood which carried it to my kidneys to help clean that “dirty” blood. This automated
diagnosis of my eGFR is like blaming your vacuum cleaner for the dirt on the
floor, when all the vacuum cleaner is trying to do its job.
[eGFR]
Over the
next several days while the surgeon was doing his job of giving me a TMA
(trans-metatarsal amputation), the rest of staff were doing daily checking of
my kidney function, watching it climb a few points each day. By the time I
transferred to a rehab facility, my eGFR was back up to over 50 – not quite
normal. As I write this, my last kidney function test shows that my score is
61, i.e. on the low end of normal. But alas, computers do not forget. So while
my kidney function is now normal and there are not any ongoing issues with
them, my medical record will continue to show that I have CKD (chronic kidney
disease)! Our automated systems do have their limitations. I no longer need any
follow-ups with my surgeon, but will continue to need to adapt to my amputation.
Gastro-Internist – this is the topic I started with
in this blog. We’ve looked at all my bloodwork and a number of related items. But
there are still areas that need to be addressed such as: how badly has my liver
been damaged; how has my life expectancy been reduced; am I a candidate for a
liver transplant (and does that answer change if I have a relative who is
willing to be a donor)? I’ve gotten my meeting with the head of the GI team
scheduled for next Wednesday where I’ll bring up all these issues, then we’ll
see where it goes from there.
Conclusion
This has been an intense few days of
research and recounting my various medical issues. What does your story look
like?
