May 18, 2013
Part 1 of 2 parts
Warning – are you aware of problems you could have with diabetes? Many people think they know, but from the information presented in many articles and on different places on the internet, many people with diabetes seem to think that they are not vulnerable to these things happening to them. This is one thing our informal group does do for us and this is a great help. The group does keep us humble and we always have someone asking the right questions when we need reminding of problems we could develop.
This article in WebMD was a topic of discussion recently and there were quite a few valid questions raised. I will list the symptoms to never ignore and then cover some of our discussion points. Please read the article for your own comparison and information. Because Barry felt this topic was important, he asked anyone that had a portable computer to bring his or hers to the meeting. Elaine had hers setup and her husband had his desktop available.
Frequent Urination, Extreme Thirst or Hunger, or Blurry Vision. A.J. started us off and commented how important he found them to be for him. He said if I had not rattled them off when he thought he did not have diabetes, he would have trusted his doctor and probably gotten into more trouble. He thanked Barry for requesting this topic be discussed and this was good to have this type of article handy when discussing diabetes with people like him that did not think they had diabetes. Ben commented that the statement about how uncontrolled type 2 diabetes can lead to "dehydration and altered consciousness ... which could be fatal if untreated.” Ben said in the research he was doing, this might have been part of what started his depression. He continued that if Tim had not insisted on taking him to the emergency room, he does not want to think about what might have happened.
Acting Drunk. Ben said this was another reason he was happy that his brother had agreed to move back and live with him. One of his recent, but very few, lows (hypoglycemic episodes) happened and Barry checked his blood glucose and had him drink about 6 ounces of juice. Ben said he was acting (according to Barry) as if he had had too much to drink, yet he knew there was no alcohol in the house.
Brenda said this was good, and asked how many had medical alert jewelry that they wore. Only six of us did and she suggested that we talk about my blogs here and here. Allen asked us to include this blog of mine. Brenda said this is why she reads my blogs. I know she does not like every blog, but to hear her on this really is a support for me. I told her so and A.J. said that he needed to do more reading as he had not read these. He also asked why we were so concerned with a piece of jewelry.
Brenda took up the challenge and explained what could happen during a hypoglycemic episode. She said if we were driving a car during a low and happened to be stopped by a law officer, we could be arrested for drunk driving even though we had not been drinking. She explained that not getting treatment for the low soon, we could pass out, and then the officer could just think we needed to sleep it off when we could be near a coma. She explained that with a medic alert bracelet, necklace, or other piece of jewelry, it might be seen and then with diabetes on it, they might act to save our lives. Allen said she was right and hypoglycemia was not to be ignored. We needed to test before we started the car and develop this habit when we are on insulin.
A.J. said that now it made sense and John asked if this applied to those on oral medications. Tim said that for the two he was on, yes. Sulfonylureas could cause a low and while metformin by itself would not, the two together could increase the chances of a low. Tim stated that the new medication just approved could not be evaluated yet, but that all other oral medications could cause a low. Insulin was known for this, but oral medications could cause lows. If the person did not take the medication because they did not feel like eating, then a low could be avoided. Also taking too large a dose for the food consumed could also cause a low. He stated that this was something everyone should be aware of and alert for this happening. Tim concluded by saying that if we were unsure, to talk to their doctor.
Barry had bookmarked several sources of medical jewelry and said he would send this out to everyone. Jessie asked if this was what we did at every meeting. Sue said we are getting better now that everyone that has an interest suggests topics for the meetings. She then stated that the help is the emails that are generated, normally by Tim and others now to summarize parts of the meetings and provide URLs that might be of interest for all. She said that these are also sent to those not attending which she said has helped her. Elaine then asked why when she was not on medications she would be interested in the meetings.
Sue laughed and said because she has type 2 diabetes. She explained that because of the support she received from the group, she was able to get off all medications and hopes to stay off for quite a while. She said because of the new members, she would repeat what a pain she had been for a few of us before she was diagnosed. Brenda said if they had not heard of the diabetes police, this is what Sue was talking about and she was one of the worst at getting under our skin. Sue said that she expected to be paid back, but she was accepted into the group and has not had this thrown in her face once.
Sue's husband, Bob, then said that he was the one that outed her to the group and had tried to have them give her some payback, but that none of us had. He said we had just accepted both of us and given Sue encouragement to get off medication and continued to support her. Then he said that when her brother Ben needed help they were there for him and have been very supportive of both he and Barry. He then said this on one reason we want to stay with the group and learn about diabetes as they felt there was more to learn and he felt this as well.
Then he dropped a bomb on us. He stated that he had been to the doctor the week before and that he now had prediabetes. He was on metformin and now both he and his wife were doing more exercise together. He said because metformin is so inexpensive now that he feels that the group has been a help for him and asked if he could be considered a member. The vote was unanimous in favor.
Apparently, this was the day informing the group of diabetes news. Jessie's husband, Glen, was next and he said his diagnosis was type 2 diabetes as well. He admitted that he was not over his anger yet, but that because of his wife and the group, he felt he had a home with support without looking for it. Glen said to me that he was reading some of my blogs now and this was helping him. He was happy that I had encouraged his wife to join, how much my cousin had helped them get off on the right path for nutrition, and he said that my encouraging his wife to use spices was what brought back pleasure in the meals. He was asked to be a member.
Next, we turned to Elaine's husband. He said he hoped not, but admitted that he was using his wife's meter for fasting blood glucose readings and that he had a few fasting readings above 100 mg/dl, but that after meal readings were generally under 100. We told him to keep checking and get to the doctor if there was a trend upward. He said he would and asked to keep coming to the meetings.
Jason said his wife was not having any problems and was normally under 90 mg/dl and I said my wife was normally under 85 mg/dl but was having some problems of readings in the upper 50's and feeling very shaky. With this report, our membership has grown to 16 with about 17 attending.
Tim said we are now limited to four houses and that so far he had not found another meeting place. Both Elaine and Jessie said that their houses were available. Bob and Sue said their house was also available. Jason said he would have to talk to his wife now and Max said his house would not have room. We were then ready to continue, but this will need a second blog.
May 17, 2013
At last, a certified diabetes educator that is willing to talk about depression. Although I am not sure I completely agree with everything she says, at least she has opened a dialog. Where it will go from here remains to be seen. Will the American Association of Diabetes Educators (AADE) make it a topic of interest? This could be interesting if they would.
I am admittedly tired of explaining to other people with diabetes why CDEs seem to close out sessions with diabetes patients when the word depression is mentioned or when CDEs are asked for help. The instance, what I talked about in a previous blog seems to hold true time after time. It is like most CDEs are afraid to talk about depression and don't want to be around people with any level of depression.
Talking about depression and obtaining help for people with depression is becoming more difficult as many programs are being cut by lack of funding and qualified people to handle depression. In my state, mental health facilities are less than one quarter of what they were 15 years ago and finding doctors willing to refer you to professionals capable of assisting people with depression is almost non-existent. Those that do have a practice are so busy they do not have time for new patients.
Most medical providers today just attempt to help by prescribing antidepressants for a period of time. Even with all the discussion about mental health care because of school shootings and obtaining guns has not been looked on with favor because there just is not provisions to handle this potential influx of patients. Most of the governors in the surrounding states have stated that this would be ideal, but with the lack of facilities and professionals to handle this, it is unrealistic to support mental health care for persons needing this.
That is the main reason for my surprise that a CDE would even blog about depression since her colleagues seem to walk – no, run away from people even mentioning the word depression. Clearly they lack the training to deal with depression. What stops them from talking to the patient's doctor about this still has me puzzled as this seems the least they should to do to assist the patient.
This behavior by CDEs says they don't know how to assess diabetes patients for depression and are not interested in helping people with depression. I can only hope that the dialog opened by one CDE does not die for fear of having to deal with diabetes patients and depression.
May 16, 2013
In today's medical practice, one would think that patients should have access to their medical health records (EHRs). On the contrary say the doctors. 65% of doctors would agree to very limited access and 4% don't think patients should see any of their records, electronic or otherwise. Is this the reason for two sets of records kept by many medical practices and hospitals? What are they trying to hide?
Trust should be the hallmark of a doctor/patient relationship, but I say the trust is not there. It certainly is not on the doctor's part and the more I learn about errors committed by doctors, the less trust I have in doctors. Apparently I am in the minority on the patient side, as I don't think the EHR has improved my health care. 78% of patients do believe their healthcare has improved. I still need to rely on them, but this does not mean that I like it or feel that I am receiving better care. I have one doctor that I do not like seeing, but I have little choice, as he is the only doctor several other doctors will refer me to. Yet I feel very threatened being in the same room with him. He acts like a dictator and talks only at me.
A 2012 study found that doctors failed to read many test results after patients were discharged from the hospitals. Experts claimed that electronic records could help prevent important information from falling through the cracks. If they are right, why does the EHR not have this as part of the programming now? Apparently this is a feature that was not part of the original purchase price. So these errors will continue and information will continue to fall through the cracks. And this is just another reason for not wanting the patient, their caregiver, or their advocate from discovering this information and reminding them that something needs to be done.
Many of the EHRs are so poorly done and not interactive for the aid of the patient, that it may be years before patients begin to see even a part of their records. I have a difficult time believing that the attitudes of doctors will change and we as patients will be worse off for it. More fragmented records, more compromised records, and outright theft of supposedly secure records by electronic thieves. When this will end, I can only guess. Will the government get involved? Probably when it is too late.
May 15, 2013
Dr. Leana Wen has some excellent points, but on a few of them, I have some severe reservations. Some of them are exactly what she states and after being in the hospital recently, I know I will be remembered and I created a bit of a stir by advocating for myself. I will know when the bills arrive just how much I was lied to, and I suspect I was carefully fed what they wanted me to believe especially when it came to a few things.
One thing I will mention before I forget it is this. The new beds they now have in the hospital are very high tech and they do their job in preventing you from getting out of bed if that is what they want. The air part of the bed is set to prevent you from getting out when you need to use the bathroom. I found out the hard way on this one. The first time I had to use the call button and get assistance. Then I figured out how to fool the sensors and get it to help me, as it could not adjust fast enough to prevent my getting out. This is because they do not want patients to fall and the air escapes to prevent you from getting over the edge. I did get past this and was able to use the bathroom on my own after the first time.
The following 12 points are Dr. Wen's advice to take seriously. They are good if you know you are going into the hospital for some purpose, but be careful if going in on an emergency. Many of these may not be possible and this is when you need to be extra careful. I know for me that I had people coming and going and each tried to divert my attention away from others. No, they were being rude to each other, they were out to keep me off balance and prevent me from establishing some rules. Eventually, I discovered their game and started diverting them and asking to speak to certain individuals. This then ended their tactics and got me the people I should have been seeing all along.
I recommend you read Dr. Wen's blog and I urge you to remember much of it. It could come in handy someday.
#1. Never go alone. Try to have a family member or advocate with you.
#2. Determine, in advance, the goals of the hospitalization. Not always possible in emergencies.
#3. Prepare. Bring records and at least a list of medications and when you take them.
#4. Meet your care team. Good idea as they do try to add people not needed.
#5. Know who to call for help and how. Important in emergency situations.
#6. Ask about every test done. You would be surprised what they try not to tell you.
#7. Ask about every treatment offered. Always a good idea and one that they may try to sneak past you.
#8. Keep a record of your hospital stay. This should be a must for family and/or advocates.
#9. Attend bedside rounds. Don't let them ignore you and make sure that a family member or advocate attends when they see you.
#10. Know your daily plan. Then if possible keep a diary to compare to this.
#11. Keep your eye on infection control. A lot of this can be eye wash and not actually performed.
#12. If something isn’t right, speak up immediately. Please do and record this in a diary to show that you did or that your advocate did speak up.
I will tell you that #11 is the big time problem area. There is almost no procedures in place in most doctor's offices or hospitals to prevent the spread of infections. Anyone handling a stethoscope can spread the infection as they seldom sterilize them (and probably never) and go from one person to another. Most of the time a person will have their clothes as a weak barrier, but when you are in the hospital, they often put them directly on your skin. Hello, infection.
I never saw one person wash their hands, but as they left the room, they religiously used the lotion dispensers in the wall dispensers in each room. The problem is that the lotion is not a sanitizer or hand cleaner. Its purpose is hand protection for them and supposedly to prevent chapped hands for them. Yes, they are supposed to wash their hands, but do not. I decided as I was being discharged to check the dispensers and got a surprise, the one in my room and the room next to me were empty. Big farce and I suspect they were empty the whole time.
You can be assured I will be asking for a detailed listing of all charges and disputing any that I feel are in error.
May 14, 2013
Allen asked to address the group before handing it over to our speakers. Allen wanted to thank Tim and others for setting the wheels in action to have this meeting as he was very ignorant about hospice and if we had not forced the issue with him for his friend, he does not think things would have gone very well. He stated that his friend is in very poor health; but that his wife and children are happy that he is in hospice care now and that they are able to be with him. Then Allen made a statement Tim and I had hoped he would. Allen said that his friend had originally wanted to be in his own bed and die there. Now that he had made life very difficult for his wife and family, he regretted his statement as he was receiving better care from hospice and realizes what a burden he had put on his family.
With that said, Allen introduced the speaker from hospice. She was the one that had gone with us and assisted Allen's friend being admitted to hospice. She asked Tim and me to stand so that everyone would know who had helped make it happen. Then she thanked Jessie for opening her home to everyone to have this meeting. She thanked everyone for coming, as it was not often enough that they were able to educate a group like this. Most of the time it was even smaller groups and often it was one person at a time. She admitted that the topic was often one that many people wanted to ignore.
She then went into what hospice is and could mean for people. She thanked me for my one reference which had helped Allen and felt that understanding hospice was important for everyone. She stated that hospice is truly for those near the end of life, but that not everyone dies within six months and that occasionally people are on hospice more than once. They are carefully reviewed by a doctor before being put in hospice. That once in hospice if they live longer than six months that does not mean they are removed from hospice the first day over six months.
As she started more information on hospice, her cell phone went off. Almost at the same time, the county health nurse had her cell phone ring. Both took the calls, and said they were sorry, but that duty called. We knew this was a possibility as we had been warned that there were several patients in conditions that could call them away.
As we found out from them a few days later, both had different patients and both had taken a turn for the worse. The hospice patient had died the next day and the county nurse said her patient had been rushed to the hospital and airlifted to another hospital. She was still recovering and would be in the hospital for several more days. Tim has received two more dates for them to talk to us and we will need to decide when.
May 13, 2013
Starting on April 11, 2013, I have been hearing several radio messages daily promoting my pyramid dot gov. To see if I was hearing right, I tuned into several of the radio stations serving our area. Most of the stations were playing the advertisement. As of May 9, 2013, I finally decided that the USDA was promoting this for a reason and I had to wonder if the my plate dot gov was being abandoned. Yes, and No. The USDA has not abandoned choose my plate, but is increasing their advertising for mypyramid. However, there are some catches as the site does not load and in doing some research, I found that most of what is being used is material in the form of PDF files and came or still exist from the original mypyramid dot com days.
Not only have they increased the advertising, but they have changed the pyramid and the meaning of it to increase the confusion. There are several different uses of the pyramid now all done to increase food promotion. I finally called one of the stations and asked about the advertisement I had just heard. They confirmed that they were being paid to run the advertisement. I asked if they had the website for this promotion and they looked to see what they might have on file. The answer came back that they had no website and no references to anything with the advertisement. This left me puzzled and I told the station that the website they were advertising did not load and several of the other related sites would not work. No one had any answers.
My Pyramid does still exist on you tubedot com and still plays. In my research, I came across this sitethat helps explain why the “Mypyramid” is used to explain what foods go on “ChooseMyPlate dot gov. Type “mypyramid.gov” into your favorite search engine and there are many sources to explore. The following is one of the more interesting examples and the easiest to follow in what they are recommending to help fill your plate. This represents the food groups and the proportion of each. For many of us with diabetes, we cannot follow this plan.
May 12, 2013
In discussing end of life issues (not a popular topic for most people), we do need to be aware of what is available. This became a topic in our group recently because one of Allen's friends is near the end and creating a burden on his family. The wife can no longer assist her husband and the children cannot be present 24/7, although they are doing their best.
In a small meeting of three of our group a few days earlier, I mentioned hospice, and was told that was out of the question and his friend would not hear of this. He wanted to be in his own home until the end. I asked how much everyone knew about hospice. The question went nowhere. I asked if anyone wanted to learn about hospice. Allen admitted that he wanted to know more, not only for them, but for himself as well.
I asked Tim to open his computer and told him to go to this blog site. After he and Allen had read this, Allen asked if it could be printed out. Tim printed it out and then we discussed this further. Allen said this answered many questions for him, but he still had more. I said we have hospice in our town and that there was a hospice care center about thirty miles away. Tim stated that one of the local nursing homes had a hospice room and I said the name of the nursing home.
Allen then asked if hospice was for only the six months prior to death. I said not necessarily as my first wife had been on hospice for about five months when she came out of the hospital and then had a period of recovery during her chemotherapy and hospice stopped. About 18 months later, she started declining in health again and we called hospice back in. A hospice nurse evaluated her and said she was back on hospice care. For approximately the next four months, a hospice nurse was in and out every other day and available at anytime if needed. Fortunately, my wife had friends that were there for her during the day and I was able to continue working.
Then in the month that she passed, the doctor suggested that she enter the hospice care center for a respite period to give me and my daughter some time to recover from her care. My daughter had been home for about a month at that time. The day after she was admitted, the hospice doctor asked her and the rest of the family if we minded if she remained there, as he and another doctor doubted she would leave or live for a month longer. She did not make it another 20 days.
Allen said he wanted to look at the link mentioned at the bottom of the blog and Tim took him there. Allen asked to read quite a bit there and Tim helped him. When we went looking for local information, the local hospice center appeared and at that point Allen asked if we could go there together as he had some questions for them. Tim called to see if anyone would be available and he said he was told someone would be stopping by his place shortly.
Allen continued reading while we waited. About 25 minutes later a hospice nurse stopped by and she and Allen talked about his friend's situation. The nurse asked if they could go there and Allen hesitated saying that he and she may be thrown out as the husband was very clear about not wanting to do anything but die in his own bed. The nurse stated that this happened quite often, but there was a lot that hospice could do to help the situation and relieve the burden on his wife. Allen finally agreed and Tim said he would accompany them since he knew the family. I said I would be available if needed and started to give her my phone number. The nurse stopped me and said that since I had been involved with hospice before that I should also go.
When we arrived, we all knew something was not good as the wife was crying, as were the two sons. The wife did ask the nurse to look at her husband and we stayed and talked to the two sons. Allen did most of the talking and the oldest son finally opened up saying he wondered how much longer his dad would live. At that point the wife and hospice nurse were back with us and everyone was asking questions. The wife asked the most important question and the nurse asked which insurance they had besides Medicare. After the wife answered, she said that insurance should cover it and there was no doubt he belonged in hospice and this could be handled that evening. She stepped into the next room and made a phone call. When she returned she stated that someone would be there shortly to gather information and that their doctor was also on call for hospice and would be here also.
The wife and her two sons conferred briefly and thanked Allen for helping in their time of need. With this Tim and I gave our comfort and said we would be leaving since the situation was in good hands. When we were outside, Tim remarked that we should have someone from hospice talk to the group and the sooner the better as this had almost caught us completely off guard. Tim said he would send out an email and set up the time and if I would talk to hospice and see if anyone could address the group.
The next morning Tim called and said they wanted it this coming Saturday at 3:00 PM and that Jessie wanted it at her house if everyone agreed and to bring friends if this would help. In my talk with hospice they said that someone would be there but they did not know who at this point. Tim notified everyone again and it looks like Jessie will have a full house. In addition to hospice, there will be someone from another service agency.
May 11, 2013
I don't mean you, even if you are the one physically in possession of the app. I am talking about the one that owns the rights to the app or where the data it generates is stored. These may be owned by different companies, both with conflict-of-interest issues. Because I do not own any medical apps, I can only tell you what a friend had happen to him. He purchased the app from Amazon, and started using it. About two months later he received a notice that his insurance will not be covering his condition because he is not following his doctor's instructions.
Now he is confused, as he thought he was doing everything correctly, and he contacts his doctor and discovers he is doing everything like he was told. He took the notice to his doctor who wrote a letter explaining that he is following his directions. Approximately a month later he received another letter stating that his monthly premium will be increasing by what amounts to one and one half times what it had been. The reason given is that his results are not in the range they should have been for the medication he is taking.
Because he has an appointment the next day, he took the notice with him. When the doctor completed the appointment, he showed the doctor the notice. The doctor knows immediately what the problem may be. His doctor asks him if he is using (names the app). My friend said he hadn't told anyone and especially not his doctor. This surprised even me, but it turns out that the application was owned by one insurance company and the data storage was owned by another insurance company. Together they had purchased several apps and storage rights to the data generated.
The doctor said he had several patients that were caught in this system. What the outcome will be, I don't know. Even my friend does not know what will happen. He has receive a third letter stating that his premium will not go up, but is waiting for the next bad news letter.
My friend has stopped using the app and says he will not buy another medical app. His doctor says that in the future, he needs to find out who owns a piece of each app before purchasing it. I am relying on my friend for the information that he provided, but this points out problems we need to be conscious of when purchasing and using medical apps.
Trisha Torrey who writes for About dot Com tells a different concern about the use of data by an insurance company. I would urge you to take time to read her information here. This also points out the need to be aware of where the information generated by the app you purchased in good faith, is being used without your knowledge. I agree that none of us would trust an insurance company with our personal medical data although we have to get claims paid, but they don't need every medical detail generated by a medical app.
In my research and reading, I do read several doctor blogs and blogs by people in health information technology (HIT). Many are talking about medical applications, but only as they relate to integrating the information into your electronic health record (EHR). They have not even been concerned about who else had access to this information. The doctors are only concerned about what they may gain from the health app without expending funds.
The next five to ten years will be very interesting with the proliferation of medical applications. I will be watching to see if we see more of what I have described as I can believe with all the greed that many companies have, we will need to be very careful how our personal data is captured and used. The other area of concern needs to be how well future applications are able to work together and if we can avoid the overly proprietary applications available today.