Wednesday, November 5, 2008

A great letter of help, info and encouragement for Sarcoidosis sufferers.

Hi Tom,
Used to live in Pewaukee, Wi. and worked for GE Medical Systems. Grew up on a ranch raising cattle in the Colorado Rocky Mtns at about 9000 feet. Left to find work with less hours and better pay. Got my degree in Electronic Engineering. Then, became a specialist in designing and testing equipment to not interfere with or be affected by cell phones or other RF equipment. Because of the fact that I have to test the equipment to these RF fields and look for conditions that would be interpreted as medical data on a scan, I had to take classes in human medical things. That was where I got my training about the medical part of this crud.
Grew up doing rodeo, downhill ski racing, football, wrestling, snowmobile racing, and other things that are not nice to the body. So, I am now an Orthopedic Surgeon's dream case. Then, I had an accident at work where a rope broke on a lift, dropping a 35 pound load on the back of my head. Came close to dying with that one. Changed my outlook on life a LOT.
Now, I work for Agilent Technologies (previously Hewlett Packard Test Equipment). I work in the Life Sciences division. Part of my job is to learn how the DNA, Protein, and biological scanners work so that I can write the test plans to determine when they would cause false readings due to Radio Frequency testing. As part of that job, I work with Biochemists and Biophysicists daily. So, if I get a medical study and need it deciphered, I take it to them, let them digest it, and spit it back in language I can understand. Because of this relationship, I also have access to several researchers who are doing leading edge research for Sarcoidosis. I can talk to them because they need our test equipment to continue their research and I can supply the test equipment at much lower cost or possibly free for them to continue their research.
My wife of 32 years is an RN. So, she also helps guide me and provides input. Then, about 3 years ago, I got the real wake-up call when I lost a 3 year old granddaughter to croup and pneumonia. I understood then that I did need to use what I had been taught and learned to help others.
Yes, the use of mental health professionals is necessary both on an individual basis and a family basis to survive any long term, incurable illness. Because everything changes daily, you often can not respond properly to everything going on. With your issues of PTSD, which I also have from the accident even though that was almost 20 years ago, you need the mental support to deal with how her illness affects YOU!!!! You also need the assistance with the family mental health services to be able to provide a buffer that is a safe place to discuss what is happening with both of your health issues due to the daily changes. It is a very rough road and rocky ride. So, be aware that you will need assistance from time to time to keep the total amount of issues at a controlled level. Yes, even this old rodeo cowboy uses them. So, it is not a sign of weakness to use a mental health professional to smooth the ride, but rather a sign of strength to KNOW WHEN YOU NEED THEM!!!!!!! Please, make sure your wife understands this as well. She needs support as well because she has no answers to what will happen or how bad it can get. That alone is a significant problem with Sarcoidosis.
The other thing I would recommend is to try to get your wife to a specialist who only researches and treats Sarcoidosis. Yes, you will have to travel to the Dr. But, that single item has saved my life. I go to Johns Hopkins University in Baltimore, but there are other specialists. If you need names of specialists in the Chicago area, ask on the website. Others there can direct you to specialists. The other option is the Mayo Clinic in Minneapolis. No, the travel is not easy, but the possible intervention of a specialist who has more experience with the Sarcoidosis disorder can be the difference between suffering for life of getting the disorder into a controlled existence. That is the best they can do for now, but, it is better to have it controlled than just fight it.
The other thing is to get her to an Immunologist, if you do not currently have one. The reason is that Sarcoidosis "IS" an immune disorder, not a lung disorder. An Immunologist (most Allergy Drs are Immunologists) can monitor the immune system and determine whether to increase or decrease the dose of medicine to control the immune response causing the Sarcoidosis reaction. Even the Sarcoidosis specialists at Johns Hopkins told me to get an Immunologist on my team to monitor the immune system. There are also other immune disorders that can cause the same symptoms as Sarcoidosis, but require different medications for treatment. So, you do need to get her to an Immunologist and get a full immune system checkup to understand whether it is REALLY SARCOIDOSIS or whether it is ANOTHER IMMUNE DISORDER causing the symptoms. That is something your Pulmonologist will probably never suggest.
Let me know if you have any other questions or concerns. I might not have the answer, but might be able to point you in the right direction to answer them. But, you do need to remember that there may not be an answer since Sarcoidosis can not be cured at this time. However, with the change of administration from the election, we might be able to start doing medical research without the White House telling the Drs what is acceptable.

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