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| From: CSL Cartoon Stock |
What distance are you willing to travel and how often. If traveling a long distance... after surgery when would you be able to comfortably return home and who would you follow up with. I'm learning quickly that it takes a team to manage this disease. A primary care who coordinates all aspects of your care, a surgeon, radiation oncologist and a physical therapist. Your life may depend on how well you get along with your doctor and the staff.
Story Time:
A few years ago I was admitted to the hospital with septicemia. My internist had another physician covering him on that day. Long story short, the physician on call ordered an antibiotic and after it was running into my IV for about an hour, I started to get itchy and that feeling of impending doom overwhelmed my body. I've had allergic reactions before and notified my nurse of my symptoms and concern that I may be starting an allergic reaction. She called the doctor who said that I could have some Benedryl but insisted that the antibiotic continue to run until he could see me in the morning. I took the Benedryl and tried to relax. A few minutes later the itchiness had increased with very slight difficulty breathing but now it felt like adrenaline was pouring into my system. I asked the nurse to turn off the IV antibiotic and to call the doctor...she said, she couldn't turn off the IV but would call the doctor.
After speaking with the doctor again she informed me that the antibiotic had to continue to run until the doctor could see me in the morning. By this time I was having more apprehension, itchiness and slightly more difficulty breathing. I ended up turning off the IV and said "I can't tolerate any more of this antibiotic and it needs to be changed. He isn't listening and I'm not going to let him kill me." Soon afterwards the doctor came into my room and I told him that I couldn't have any more of this specific type of antibiotic because of my symptoms and fear of going into anaphalaxis if I continue. He said in a very angry tone "If you don't let us restart that IV right now I'm discharging you to home and you'll be dead in a few hours. After the statement that you made to the nurse about me trying to kill you...do you think I care whether you live or die? Do whatever you want because I honestly don't care."
Feeling very ill, alone, completely worn down, in tears and against every instinct, I foolishly consented for the IV to be turned back on. Within a few moments I was having great difficulty breathing, hives were emerging and my hands were blue. I frantically rang for the nurse multiple times, she never responded. I turned off the IV again and as I took my last gasping breaths I hit the code button on the wall and fell to the floor unconscious. In a nutshell, I awoke in the ICU after a severe anaphalactic reaction, very ill with septicemia and now a chest that felt like someone took a bat to it. I almost died that night because of personality conflicts and I was too ill to fight with the doctor... even though I knew restarting the IV could have deadly consequences. Yes, he was fired from my internists practice and the nurse was put on report.
This was a very highly skill physician who I had seen in the office previously and knew he didn't like me and I didn't like him. It was just some type of negative chemistry and my instincts told me to stay away from him, but he was just there as backup for my physician. It's important to listen to your gut feeling and make sure that you trust and like your physician and the others in his office. I have dealt with many physicians and compatible personality trumps skill any day. Of course there needs to be a balance.
Don't underestimate the financial aspect of health care....can you afford to be treated by a specific doctor.
Questions to ask during your doctors appointment:
- What type of experience do you have with PVNS?
- What type of PVNS do I have?
- Is a biopsy required to make a definitive diagnosis? When will the biopsy be taken and how long for results?
- How has this disease affected my joint?
- Can it affect other parts of my body?
- What are my treatment choices and which is the best treatment for this type of PVNS?
- What are the risks and possible side effects of each treatment and long term effects?
- Will I need surgery or will I need it in the future?
- What are the risks of delaying or opting out of surgery?
- Are there any complementary or alternative therapies that I should consider? internal or external radiation
- Do any clinical trials or research support these alternative therapies?
- Are there any clinical trials that would be appropriate for me?
- Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
- What should I do if my symptom worsen?
- Is there medication that I can take on an as-needed basis to decrease the discomfort?
- Would exercising make my condition worse or would it help it?
- What can I do to preserve my joint?
- About how much would surgery cost?
- What kind of out-of pocket cost can I expect?
- How often will I need checkups?
- Will I need physical therapy after surgery, when will it begin and for how long?
- How painful is each type of surgery and when would I be able to return to normal activities?
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