These are some of my tips and views on how to take control of a major medical situation.

Medical Language

I remember a doctor taking the time to talk to me about Kayla and I could not understand a word that he said to me. I was resistant to learning the medical jargon, stupidly assuming that I could get by without this understanding. Man-oh-man was I wrong. Refusing to understand medical jargon prevented me from becoming a team player. When I finally decided that I had to learn everything I could about Kayla’s cancer, I hit the books and the Internet in every spare moment that I had.

Knowledge is Power

Everyone has heard this statement “Knowledge is Power,” but I wonder how many see the application of it with their own illnesses? Much to my delight I discovered that 99% of doctors really appreciate patients who take responsibility for their care through diet, education, and many questions. After all, this proves that you are all on the same team. Now the doctor has the opportunity to work with an actual team mate instead of just a participant. This point, I feel is a very important.

Learning

The easiest way to learn is through the Internet. I would have two pages open. The first page would be a medical study or research on a specific condition. The second page for a medical dictionary. This way I could go back and forth easily. If I was studying medical papers I would use the medical dictionary on the Internet and write the definitions in the margin of the paper for easy reference.

If important information was found I would print it out and bring it to Kayla’s doctor for a consultation. Any new complication, side effect, drug, medical term, etc., I would research in this same manner.

Consequences

There can be many consequences to any treatment. Kayla was sensitive to steroids and these drugs had serious side effects on her bones. After months of treatment her bones continued to worsen. All of the doctors on our oncology team said that there were no options available. After going to a second hospital and running into the same problem, I put together a letter and I sent this letter, along with medical records to a couple of medical facilities for help.  This saved quite a bit of time, while giving the doctors detailed information on Kayla’s condition, allowing for them to actually speak to me on the phone afterwards.  We ended up getting two consultations from this action and the answers were the same. This was followed up with a physical consultation that prompted us to switch to a new facility.

The new doctors skipped the last two months of heavy treatment based upon recent studies that indicated this second phase of heavy treatment “was not advantageous to the patient.” Kayla’s quality of life improved immediately. Now almost a year later we are so very happy that Kayla is strong and happy, all bone issues are in the past.

Doctors Doctors

All doctors are not created equal. Attitude can be a major benefit or stumbling block and it all depends upon which one your doctor exhibits. Here are qualities that are of most importance to me in a doctor. Able to communicate in a forthright manner. Answered my questions especially when I prodded for more information. Never made me feel stupid or incompetent. Has compassion and strength.

It takes a lot of understanding to have to make major decisions regarding your care. Not only will you have to know what your dealing with but also you will have to judge whether or not to continue care at the current facility or pursue another. Should you choose to seek alternatives, do not announce it and do not burn your bridges. Go about your research quietly and leave the current health care facility on good terms. You never know if you may have to return to the facility that you just left.

All doctors that I have met are very dedicated to their work. They had to have an incredible desire to help to go through the rigors of training and the mountain of debt to become licensed physicians.  Always treat them with respect even if you disagree. After all you are expecting someone to help you that may have been on call for most of the night or weekend and is keeping this fact hidden from you. It is just plain foolish to treat a doctor in a poor manner. I am writing this because I have seen patients or care givers screaming at medical staff. It is especially upsetting to any of the other patients and their families who are within screaming distance.

Different Treatment

I was very surprised to find out from other patients very different rules for the same disease. One patient was allowed to take herbs while on treatment – at our facility herbs of any kind were not allowed while on heavy chemo. Another family told me that they were required to only drink Reverse Osmosis water, which they needed to install in their home or only buy Desani bottled water. They were also restricted from fruit and fresh vegetables. We did not have the water, fruit and vegetable restrictions. Our doctor instructed us to wash all fruits and vegetable and to be careful with berries of any kind as they can harbor fungus or mould that is not visible to the eye. These are examples to show you the wide variables from hospital to hospital, so ask questions and if something sounds odd, question the doctor for a study or materiel that he is placing this order upon.

Resources

There is a page on this site for resources. In your hunt for answers you will need to be resourceful in your search. I asked friends for help, retired specialists, pharmacists, nurses, radio talk shows, TV doctors, bluntly anyone and everyone that I could.  Don’t be shy, ask and keep asking until you have found clues that lead you to the answers you are seeking.

Goals

When Kayla was diagnosed I had no idea of the rocket ride we just got on. It started so fast with highs and lows almost immediately. It is pretty important the you find and define your goals early in treatment. Grabbing hold of the reins as soon as possible will help to empower you. Sometimes finding answers can be very difficult and lengthly but I have always insisted that there had to be an answer for any problem that presented itself and I was willing to keep searching until one was found. This has stood the test of time for us and I hope that this article gives you the desire to do the same.