Howdy and good morning my fellow PAD warriors Ok listen up please , just a thought by here We really need to stand up for ourselves here as patient advocates for ourselves We need to push the boundaries also in learning and or care I stopped smoking and I am eating right the best I can simply but getting out of the box sometimes to learn new things Same as with or doctors , I found a 2 doctors who were willing to realize what’s works for some others did not work for me We are all really different in this PAD , I think the some of the basics of the disease are the same but I have and you have or own different perspectives after that So we need to really work together here and learn what we need to learn to ask or doctors in our appointments with them , push them , learn from them , and help teach them from the patients perspective Leave or egos , pride , status, this building or that building at the door and become a member of a team We must have one thought , one idea , one drive that is Too save lives and limbs and make a better living daily in dealing with PAD and living with it daily as patients and doctors This is another CLI patient's perspective to take into consideration following the biased NY Times article. My legs are not for use for your political agenda in dealing with or fighting over money – hospital versus office-based lab. There are enough of us patients with PAD and not enough doctors already. So many fellow PAD warriors I’m in groups with can’t even get appointments for weeks, if not months out. We can’t afford to lose any one doctor, especially those who are trying everything in their power to evolve medicine and help to prevent amputations. I want the doctor willing to do what it takes to actually save my legs or my life. If that means sticking a wire in me, or a balloon, or a new piece of technology to open up my blood flow, then so be it. If in CLI, which is the main indication for having one of those procedures, I would rather try that be done however many teams is necessary, than lose my leg. If I even have to go back once or twice a year or more if it means I can keep my leg another day, then so be-it. My legs mean something to me. Keeping my legs attached as long as possible helps keep me alive so I can walk and grow collaterals that may also help blood through my heart. Losing a leg puts me one step closer to losing my life. We know as CLI patients amputation may be inevitable. The key for us is finding a doctor who will be a partner in our journey and will do everything in their learning and their arsenal to honor our request to keep our legs as long as we can. I know I have to be a partner in my own health, too. A big part of that has been to quit smoking. It’s an addiction and so it took more than just one way to stop it and took time. I also struggle with changing my eating habits. And I force myself along with my dog Stella to also stay as active as I can despite the pain in my legs and despite my defibrillator kicking me often. But we are all on a journey and learning how to be better every day. I’m am working hard daily… and I only ask that my doctor try as well. Although I’ve learned the word ‘try’ is different with one doctor versus another. I been in a hospital setting and that’s what got me here with three bypasses and just one step away from amputation myself. The doctor said all three times he could not get through my blockages and just did bypasses. Every six months for almost two years until he did an axillobifemoral bypass. I didn't know there might have been a doctor with a more advanced skill who could get through those blockages without cutting me now from shoulder to thigh, leaving me with only the option of amputation after all those things failed. I was never even told I had peripheral artery disease by name with this doctor and was never offered medicine therapy or told I needed to make lifestyle changes, including to quit smoking, eat better, and walk more. I am absolutely grateful and blessed that once my axillobifemoral bypass blocked six months after, I found 2 CLI fighters, both in office-based labs with hospital privileges, to do what it took to save my legs and create blood flow in them using wires and balloons. They also put me on what they said was optimal medicine therapy and did a real talking to with me on quitting smoking, eating better, and walking. One of those office-based doctors, an interventional radiologist, was even the first person to tell me I needed a cardiologist and sent me urgently to a nearby hospital for a heart cath and paired me with a vascular surgeon for grander work I may need on my blocked axillo graft. So, I feel I have a great collaboration of doctors all working together now for my best care. I wish I knew back then what I know today and when to say no, and get a second, third or fourth opinion to see how different doctors ‘try’ differently based on their training so I can decide what I want for me and who I think has the open mind to try whatever it takes to save my legs. I should have choice when amputation is on the table. I have a disease that I will always have, and working with these CLI doctors and being responsible and advocating today for my care, I have the opportunity hopefully to save my legs and life from here on out. Simply put, there is no “I” in team here on this journey. It is going to take all us working together to save my life and limb as well as other people with CLI like me to prevent further rates of amputations whether that’s in an outpatient or special hospital setting ---- All of us need to work together!!! ~Douglas C. Salisbury

Posted by douglassalisbury at 2023-07-21 17:47:36 UTC