July 24, 2012
Volunteering As a Peer Mentor
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.