Dec 082013
 
Using my techniques, I am now able to eat a varied diet.

Using my techniques, I am now able to eat a varied diet.

Like most people with inclusion body myositis, I have weak swallowing muscles. This causes me to have trouble forcing food to go down the esophagus and as result it will try to go down my trachea. Over the years I have had several swallowing studies including two at UCSD Medical Center. These merely confirmed what I already knew, however they also allowed me to see, by way of the fluoroscopic studies, exactly what was going on. I was able to see that the food got trapped in pockets near my vocal chords. This explained why, when I would try to speak while eating or shortly afterwards, I would almost always end up choking and having a violent coughing spell.

The doctors had several suggestions, including having my throat expanded, or having Botox injections, or even stopping eating altogether and having a feeding tube inserted in my stomach. I have known people who have pursued each of those routes. The first two generally do not produce lasting results and the feeding tube would require a higher level of care. So I decided to take what I learned and figure out a way to eat successfully. I’ve been observed by a speech therapist while eating and he said that I was using the techniques that he would normally teach to someone to help them overcome swallowing difficulties. With that kind of encouragement, I have decided to publish a video showing me eating accompanied by my own explanation in the hopes that it might help others who are struggling with this problem.

As always, I caution you that I am not a medical professional and that this is not medical advice. I am simply showing you what works for me and I cannot predict whether it will work for you.

Aug 122013
 

After years of dealing with Medicare, I have managed to distill their process into this simple card.

My latest healthcare adventures have involved Medicare. The Scripps Health system managed to get into the act again as well.

Case 1: Inclusion body myositis has left me completely immobile when I sleep at night. This makes me very susceptible to pressure sores. I had developed several and was being treated by a home health nurse who told me she did not think she could make them get better as long as I was sleeping on my old mattress. It was not a cheap mattress by any means, it was a special pressure reducing mattress that cost $500. However, she told me I needed a mattress that would alternate the pressure and thus relieve susceptible areas. It also has a feature called low air loss in which tiny holes let air leak from the mattress and provide a source of oxygen to the skin which is also good for healing. She ordered the mattress through a local supplier to deliver immediately and it worked great. Within a couple of months my pressure sores were nearly gone and the home health nurse said she did not need to come back anymore. Right after that I got a call from the mattress supplier telling me that they were coming to get the mattress because Medicare would not pay for it as long as my sores were better. I said, “But my wounds will come back right away without it.” They assured me they knew that, but that is the way Medicare wants it.

In this case, rather than trying to go through a dysfunctional medical system, I simply went to Amazon, found the same mattress and ordered it. I was expecting it to be many thousands of dollars, since Medicare was paying several hundred dollars a month to rent it. However it actually only costs a few hundred dollars. (And people wonder why the Medicare system is in trouble!) Think about it: during just the time that I was renting the mattress, Medicare paid far more than it would cost to buy a brand-new one. In addition, Medicare’s policy was designed to force me to develop pressure sores all over again at which time I would again have to rent the mattress, and hire home health care again. Medicare pays approximately $200 per visit for the 15 min. that a nurse spends changing a dressing.

Case 2: I have been on a BiPAP system every night for the past 15 years. Not only is my breathing weak because of inclusion body myositis, but I also have severe sleep apnea which was diagnosed by UCSD. Recently Medicare instituted a new “competitive bidding” system which opens up each type of durable medical equipment to bidding from any company anywhere in the United States. This has left out most of the smaller companies that had always given people excellent service. In my case, it meant my provider could no longer furnish me with BiPAP supplies since they did not win at competitive bidding. I either had to go to another local company which has a terrible reputation for bad service or go to one of the out-of-state companies that won the bidding. Neither was a good option. However, if my need could be escalated another level to a constant volume type of BiPAP instead of a constant pressure type, it would not be subject to competitive bidding and I could retain my good supplier. The supplier was certain that I would qualify due to my advanced disease. So I went to the doctor at Scripps who sent me to their pulmonologist who really did not know much about my history but was skeptical as to whether I needed that kind of help. So now before I can qualify, I have to do overnight oximetry which entails two trips to Scripps clinic, one to pick up the equipment and the other to return it. In addition I must have several pulmonary function tests and a blood arterial gas test. Then, depending on the results, he may prescribe the more advanced equipment. All because a bunch of clerks of Medicare think they know how to practice medicine.

Meanwhile, politicians in Washington are arguing about whether Medicare benefits should be cut back. They rarely argue about whether the Medicare system should operate more intelligently.

If you came here from the later article about low air loss mattresses, here is where you get back.