Whew, I had hoped for an easy session
for the first time. It was more a complicated mix of questions about
my diabetes and why I am on insulin. Also in the questions was
several about why I blog about diabetes and some of the other topics
I blog about. I had been warned ahead of time that there would be
questions like this although I was still surprised by the questions
asked.
The group of eight diabetes patients
that participated in the shared medical appointment were above
average patients, and I was talking to only six at a time while two
others met with the doctors. The range of ages was from 30 years of
age to one patient of 89 years young. Length of time for each having
diabetes varied from two months to almost 20 years. All had type 2
diabetes and were comparing notes. I was also pleased by the group
as all were regularly exercising and the eldest was doing the most
exercising and was managing his diabetes with exercise and diet. He
was the first to speak and thanked me for providing the websites to
their doctors and he was enjoying reading the blog by Tom Ross, as it
was easy for him to relate to his experiences.
The next question was about why I had
supplied so many sites as this person could not read them all. I
answered by saying, I did not expect them to want to read all of the
sites. The variety was to allow each person to find one or two that
they enjoyed reading and maybe a few for information that they would
bookmark and visit from time to time when looking for specific
information. I also stated that these were not required reading, but
that many would also have tidbits from time to time that they may
find worthwhile, or can adapt to their lifestyle. We covered a few
type 1 bloggers that two of the group had found and I answered that
each was a good site for the information presented. I then
summarized by saying that each blogger had her/his style of writing
and would appeal to different readers.
We moved on and the next question was
about my diabetes. Why was I on insulin and why did I not have a
recommendation for the best insulin to use. To begin with, I was
diagnosed late after diabetes already had a good hold on my life and
at the time I was already overweight and my doctor did not talk about
exercise. I explained that my purpose is not to recommend any
medication but I had blogged about them and given references (links)
to charts on the Internet to make people aware of the different
types. I then stated that it was up to them to become knowledgeable
and discuss them with their doctor to see if they had what was best
for them. I said this applied to any medication they may be taking.
I stated that the doctor would make the best selection based on the
tests done, what he learned from your history, and from the questions
he had asked before prescribing the medication.
I also emphasized that when they became
knowledgeable about the different medications, they would not be out
of line to revisit the topic with the doctor and discuss this in more
detail. I had seen one of the doctors enter the room as I started
talking about this, and she stated that is what they hoped would
happen and the reason for having the shared medical appointments and
for me answering questions as a peer mentor. It was for them to gain
confidence as patients and ask these questions. She continued that
sometimes doctors do prescribe what they believe the information
tells them, but that does not mean that another medication might not
be better suited for them. She rightfully stated that occasionally
they may find that another medication is better, and they will do
their diligence to investigate the possibility. She also warned them
that they (the doctors) will not be bullied into a medication change
just because a patient had heard about a medication and wanted it.
They would listen to the patients to find out what knowledge they had
on the medication and then start asking questions to determine if a
medication change should be made.
The next question was about statins. I
could see the doctor stop almost out the door. I said this was a
question that was open to discussion and would depend on the health
of the patient, the lab test results, family history, and other
factors that only the doctors would be qualified to discover. I went
on that there were two sides to the controversy and they should not
be afraid to ask questions of their doctor. I would provide URLs to
anyone needing them to help educate themselves about statins. The
doctor gave me a thumbs up and let the door close. I asked how many
were on statins and only two of those present were. Both were women
and I asked for their ages. I asked one more question (both nodded
yes), and asked if they had gotten my email address which they said
they would use. I said I would send a copy to the doctor and both
agreed.
We then moved onto testing and the
questions were mostly about obtaining sufficient numbers of test
strips. I said I knew of another doctor that was working on this
problem and I would email him asking about their progress and make
sure the doctors were aware of his progress. I would also give their
doctors his email address so they could communicate.
The next was about the actual pricking
of their finders and alternate sites. I demonstrated on my fingers
and watched as they flinched, and knew that I had their attention. I
showed them my lancet device and said there were others, but thought
that all had an adjustment area and they needed to learn to use it.
I showed that mine was set on 4 and that the number one would be the
lightest setting and a click past 5 would be the deepest setting. I
explained that they should try to see what it felt like after a few
more instructions.
I next took a ballpoint pen and drew
the best area on the sides of two fingers. I expected the next
question, which was about the fingertips themselves and the pads of
the fingertips. On two other fingers, I drew these areas and they
said yes that was where they were testing and it often caused pain.
I said that the first areas I had drawn contained less nerves and the
second areas were full of nerves so there would be more pain. I
could see one person getting out her lancet device so I stopped and
said go ahead. She did and said OMG he is right. She said she was
never exposed to the best places, so this was very surprising for
her. I held up my hand and carefully showed them the areas I had
outlined as I could see others going for their lancet devices. I
also suggested that they consider the same areas of their thumbs
unless for some it was too painful. I also described rotating the
sides of the fingers and emphasized not to repeat on the same site
for days on end.
I took time to show them the alternate
area on their arms and demonstrated on mine. Since I have mine set a
little deeper than some, it hurt, but I had a good supply of blood.
I explained that this site would be between 15 and 20 minutes later
than the fingertips and if they were experiencing a low blood glucose
episode, this delay could be deadly. One woman said that at home she
often did this on her legs and I reminded her that again the readings
would be about 20 minutes behind a reading on her fingers. I
explained that even though this was called lagging, the reading from
alternate test sites were actually about 20 minutes older that one
taken from the fingertips now. I asked her what her readings
typically were and she came prepared and started giving them to us.
I asked her the readings for her fasting blood glucose readings and
they were very consistent. I then asked why she was avoiding her
finders and got a logical response. She did a lot of needlepoint
design and embroidery work and did not want to desensitize her
fingertips. She stated she was on an oral medication and had never
had as reading below 70 mg/dl.
Others were now saying they had no pain
in the areas I had shown them and asked how I knew this. I referred
them to my blog series number four and the links to Alan Shanley's
blog. I also said I would find the other links I had with diagrams
that I would send to the doctors for them to forward out. I went
back to the woman that had been using areas on her legs and I
suggested that she was probably okay where she was testing. She
countered that she wanted to try the sides of her fingertips like I
had shown as she had tried the tips and pads and did not like the
pain. I then showed them that I could lance there and not have pain
also as long as I stayed away for the area closest to the nail. I
also stated that this would not work for most people. A couple
reminded me that was where they always tested and did not like the
pain.
We discussed when to test and how often
to test. I asked how many test strips their insurance would
reimburse and the answer was two per day. I suggested that they
analyze the day and when they were having the most trouble, the
highest readings, and adjust to them if they were satisfied with
their fasting blood glucose readings. We talked about not jumping
around on times but selecting times before or after a meal and doing
this for a month. I emphasized the importance of looking for trends
and if the readings were creeping up for the times selected, they
needed to discuss this with their doctor. If the readings were
consistent for a month then the following month select another time
to test. Also covered was what to do during an illness and this
encouraged more questions.
We then had two questions about medical
alert jewelry. Why was it important and is there a real need. I
answered yes to both questions and started to explain why it is
important. At this point both doctors returned and the eight
patients were all together. I repeated the two questions. Both said
continue and I explained that if for no other reason, in an emergency
situation, most emergency responders would look for a medical alert
bracelet, a necklace, or a tattoo in a conspicuous place. With
diabetes, if they need to start an IV of fluids, most would contain
dextrose and this would normally be continued in the emergency room.
This could raise your blood glucose to unacceptable levels. If one
of the responders found your medical ID, they would know then that
they would then need to monitor your blood glucose levels and
administered insulin once your blood glucose was above a certain
number. Or, if you had hypoglycemia, they would know that dextrose
would be needed in a more concentrated level.
At this point, the husband of the two
doctors, asked to have the floor. He stated that in some areas, first
responders now have glucose solutions to add to the IV in cases of
hypoglycemia. Without the medical alert jewelry, the first
responders do not have a clue that a person is diabetic and may need
special treatment. At that point the eldest patient held up is arm
to show his medical alert bracelet and stated that about six months
after diagnosis, this had saved his life when he passed out from over
extending his exercise and he had a low he was not aware of. A
passer by had discovered him and called 911 and reported that he was
wearing a medical ID bracelet that said he was a person with
diabetes. When the first responders arrived, they tested his blood
glucose and immediately attached a glucose bag to the IV and adjusted
the rate per the doctor's instructions. When he came to in the
hospital (he had been admitted), he asked what his blood glucose was
reading. He was told it was being held at 180 mg/dl. He asked to
have the level brought to 120 mg/dl and was refused.
He said he then asked to talk with his
doctor and was refused, but another doctor did come in and told him
hospital policy was to maintain at 180 mg/dl. Since he was not sure
what to do, he thought he would see of he could get up. Then he
found that he was strapped down by his feet. He said at that point
he was angry and insisted upon being released. That brought on the
wrist straps and now he knew he was in trouble.
He now asserted that he was dismissing
himself from the hospital against advice of doctor's orders, and
expected to be allowed to leave, but was ignored. When the staff had
left his room he was able to convince his roommate to dial 911 and
get the police there. He was dismissed and one of the police
officers did drive him home. He immediately tested this blood
glucose and found it at almost 300. To shorten his story, he said he
settled for no bill from the hospital, attorney costs, and an apology
for their treatment. I asked about the ambulance cost and he said
his insurance paid for that. The doctors asked how long it took him
to get his blood glucose level down and he said he had gone to his
doctor then and had it down within four hours with insulin and then a
glucose tablet.
The doctors asked to call a halt to
things for that day. I could hear a few groans. The doctors both
asked if I would be available for email questions and I said as long
as they did not expect an immediate answer, and I could copy them
with my answer. Everyone agreed and the computers were shut off.
I had fun even with some pretty direct
questions and the finger pricking discussion got the most interest.
This is one facet of telemedicine I had never expected to become part
of, but it was enjoyable. I have received several emails with thanks
for the areas that had interested them and quite a few questions
which now I will need to do some research to answer. From a few
questions, I see that I need to develop a paragraph that will explain
that it is not in my agreement or authority as a volunteer peer
mentor to provide recommendations about medications, that only the
doctors can do this. If there are several issues to a question like
I had on statins, I can present articles from both sides of the issue
for them to read, and a recommendation to make this a question for
discussion at the next appointment.