“Self Advocacy” by Mike Tufo

“Self Advocacy” in “High Quality” Medical Institutions and the importance of making YOUR VOICE heard.
An Essay on medical “ignorance” when in a facility “unfamiliar” with YOUR medical history.

By Michael D. Tufo, R.T.(CT) ARRT
(Synovial Sarcoma/Lung Mets “Survivor” and Medical Imaging Professional.)

TO begin with: I have been in the field of Medical Imaging for well over 24 years. I began my career as an “X-Ray Tech” in 1986 and through the years have accelled in the industry as an Interventional Technologist, CAT Scan Technologist and have held various supervisory and administrative positions in all three disciplines, last of which was to assist with the building and function of one of only two “Coronary Diagnostic Imaging Centers” in the entire state of New Jersey. I mention this not to “blow my own horn” so to speak…but to establish to the reader that through the years I’ve had a vast amount of experience in MANY types of Medical Institutions and have gained so much additional “knowledge” about various aspects of the health care profession in general. So lets keep in mind, that besides my particular area of expertise…I’m just a “regular” guy who’s “been around”.

To keep my “cancer story” brief for this article I’ll just say that I was diagnosed with Synovial Sarcoma in March’08 in my right thigh with lung metastasis that I am currently in the process of being treated for. Since my initial diagnosis, I have been under the care of the wonderful physicians and staff at Penn Hematology/Oncology at Pennsylvania Hospital in Philadelphia, Pennsylvania. These people KNOW my medical history, my tolerances, my mental capacity and emotional status, ect.. They KNOW my wife, Dianne and our 4 young boys. Simply put….THEY KNOW ME!

THE “ADVOCACY” STORY…

I have been in a “chemo hiatus” for about a month while awaiting for a change in “Trial Drugs” that started at the beginning of October to clear out my system. Over the course of the month I began to cough a little more and “run outta gas” a little bit quicker than normal. I just figured it was my body adjusting to being “chemo-free” for a month, but in the first week of November I became more tired and began seeing very minute streaks of blood when I’d cough…nothing alarming to me…I would just mention it to my Oncologist when I was scheduled to see him Nov.10th for my “Trial Interview”…but I never made it to that appointment. On Monday Nov.9th, I finally gave in to my wifes’ frequent requests to go to the local ER to be checked out since my breathing had become substantially labored and I was coughing up clots of blood.

So at 1:00pm, I was in the Emergency Department of one of the better Hospitals in our area. At this particular hospital, I am formerly the Director of the CAT Scan Dept from a few years ago and always felt comfortable there, knowing the doctors and the staff and the over-all great reputation of the facility. The ER staff was great and treated me professionally and promptly. By 2:00pm I was severely short of breath and having chest pains. They performed a CT Angiogram of my chest to rule out a blood clot in the lungs (which there was none…) but the CT did show a Pleural Effusion (a collection of fluid in the chest cavity surrounding the lung…) of my left chest cavity that was compressing my left lung and it also showed the numerous lung lesions that we already knew about…nothing new there.

The ER doc explained what they found, said I would be seeing a Pulmonologist and Oncologist and they sent me up to my room on one of the general floors.

By 6:00PM Dianne and I were visited by the Pulmonologist who said he was going to keep me comfortable with Morphine, Dilauded, Percocet and would begin me on an antibiotic for the effussion…but he didn’t think it would help…and maybe in a few days “tap” the effusion…”but that probably wouldn’t do much either…”! At this point I became a little bit “concerned”. I told Dianne not to worry too much…”I’ll be o.k”, and sent her home to be with our boys and relieve the baby-sitter. Later that evening, my former CT co-worker came by for a visit and asked if they “tapped me yet”. When I told him what was happening I could tell by his look that something was wrong. “That needs to be tapped ASAP”,was his reply. “You have a HUGE effusion”! After some more conversation, I thanked him for his advice and he left for the evening. My breathing became more and more labored, my pains were increasing. At 11:00PM, my “new” nurse came in to see me and seeing my distress called for another “Morphine” breathing treatment. I was somewhat worried when she didn’t know how to work the dosage since “I’ve never had to do this at my other job”, as she told me!

Then it dawned on me…Morphine/Dilauded/Percocet…They weren’t treating my Pleural Effusion…THEY WERE MAKING ME COMFORTABLE!!!! THIS WAS PALLIATIVE CARE!!!

By 3:30 Tuesday AM, I was in severe respiratory distress. I was unable to breathe when lying down and the only way to breathe at all was to sit up over the bed with my arms hanging over the food table. I knew that if I fell asleep that I would NEVER wake up again and was crying both from pain an the fact that I may never see my wife and boys ever again. The nurse kept coming in to check on me and asked me on 2 separate occassions the status of my “Living Will” which REALLY scared me!

She was sorry and wished she could help me more and kept suggesting that I just try to sleep. Well, I managed to stay alive till daybreak when my new nurse came in for a visit. She reiterated how poorly I looked and gave me my usual breakfast of Dilauded/Percocet and set up another “Morphine Breathing Treatment”. When she placed the “rebreather mask” over my face before turning it on…I knew this wasn’t going to be a good experience. Those things NEED to be full-on…with 15 liters of oxygen per minute or it’s the equivalent of placing a plastic bag over someone’s head! I explained to her that something was wrong…I wasn’t getting any air…and she just said “It’s set right, don’t worry about it…”. I began my “breathing treatment” and as soon as she left the room…I turned the regulator up to where it SHOULD be and could feel the air rush in…she had it set to about a quarter of what it should have been! Shortly thereafter…a Respiratory Tech and her “student” came in to get my ABG’s (Blood Gasses)…which I’d never had drawn before. She told me it was being done to determine the next course of treatment. If the labs were bad…I would be put on a Ventilator Machine! Student failed to stick me twice…The Tech then failed twice…and just happened to call out to a passing colleague “Ron” to see if he could “get me”. Ron was a “gung-ho” military nurse and THANK GOD! Because he took one look at me and realized that something was very wrong! He checked the “rig” of my breathing mask and found that the nurse had hooked it to the wrong regulator on the wall! Instead of Oxygen…I was breathing REGULAR room air! He looked at his colleagues and stated, “THIS needs to be reported…”. As soon as he made the proper adjustments I began to feel much better! I returned to a more coherent state and was much more alert. He was able to “get me” and my ABG’s were sent off to the lab. Within minutes…a nursing supervisor had entered the room with my “nurse” and they quietly were discussing the situation and my nurse left…not to be seen for another hour or so…SHE WAS CLEARLY BANISHED FROM MY ROOM! She did however return later to happily tell me my ABG’s were GREAT! I think was happy because SHE just dodged a very big bullet!

I called home to talk to the Boys before they left for school and reassure them I was o.k, and explained everything to Dianne who would get there as soon as she could.

By 9:00AM I was doing a little better and got a visit from the Pulmonologist. I told him I wanted a “tap” ASAP and he stated it would do no good since the thing in my lung was little fluid…it was a big tumor that had been there for a long time and we would just have to “wait and see…”. WHAT???!!! I knew it was no tumor THAT big and told him I had just had a CT done less than a month prior that showed no mass like that. “Yes it did…they just didn’t want to tell you”. “BULLSH–!!!” was my reply and I explained to him that I was a CT Tech…That “I” had seen the images MYSELF and there was no mass like that on any images!!! I told him I wanted my lung tapped ASAP and I wanted the Interventional Radiology Department to do it if he wasn’t going to. He came back in and said they were “too busy” in IR and it would have to wait. By this time…Dianne had arrived and was brought up to speed on what was happening. After further discussion, the Pulmonologist relented to our insistence to a “tap” and prepared for the procedure at the beside continuing to insist it would probably be a pointless effort. I sat over the edge of the bed, leaning over a table with Dianne holding my hand the whole time. As soon as the doctor placed the needle between my back ribs I IMMEDIATELY felt relief and began BREATHING BETTER!

With everything going on behind me I could easily tell by the looks on the faces in front of me, that there was A LOT of fluid coming out of my back. After about 10 minutes of draining, the doctor had removed 2 LITERS (Yes! A LARGE COKE BOTTLES’ WORTH…) of fluid from my left lung cavity and I felt 200% better! I was breathing closer to normal, my pain had diminished dramatically and for the first time in many hours…I KNEW I WAS GOING TO BE OK!

I looked up at Dianne and said,”Get me the hell outta’ here”! No sooner had those words left my mouth…her cell phone rang. It was MY Oncology team from Penn Hospital returning HER call to get me transferred!!! GOD! THAT WOMAN IS AMAZING!!!She knew from the time she walked in that morning that it was in my best interest to get me to my oncology team at Penn.

Now, God Forbid…that “Dr. Pulmonologist” should admit he was wrong…Nope! He simply cleaned up when he was finished and said,”I hope your feeling better, take care and we’ll have an Oncologist see you soon”. I’d love to say at this point that all gets happy from here…BUT NOW IS WHEN THINGS GET REAL SCARY!

My appointed “house” physician comes in and explains to us that I will have to be put on a ventilator machine to re-inflate my lung as was suggested by the other physicians. I refused to be put on a “vent” unless my eyes were rolled up in my head and agreed to a “Bi-Pap” mask (which is a less invasive method to help re-inflate my lung). My “assigned” Oncologist came in @ noon Tuesday and began explaining to Dianne and I that he was going to have to place a chest tube in me, put me on a ventilator and move me to a private room so that family and friends could spend time with me while we “wait and see how things progress”! HE WAS UNDER THE SAME IMPRESSION THAT I WAS DYING AND HE WAS JUST GOING TO MAKE ME COMFORTABLE UNTIL THE END CAME! I felt as though I was in a glass jar and none of these doctors could hear me screaming at them that I was FAR from “N”-Stage! THIS WAS THE SCARIEST TIME FOR ME!

When I explained to the “oncologist” that I was awaiting transfer to Penn Hospital and would allow THEM to help me make these decisions…he just threw up his hands as if to “wave me off”, made some under his breath comment about “DENIAL” and stormed out of the room.

My “new” nurse came in and I could tell by her demeanor and conversation that she was in total agreement with Dianne and me and assured us that nothing would be done until I was transferred and kept us posted on that progress. Dianne and I were comfortable enough now that the “Cavalry” was on it’s way, so Dianne left to relieve the “sitter” and tend to our boys as she would meet me at Penn Hospital once I was transferred. I was comfortable enough to finally shut my eyes and “Cat-Nap”. By 4:00PM Tuesday the Ambulance Squad came into my room to transfer me to Penn, Dianne was called and the NIGHTMARE was finally coming to an end. I was going to be treated by my “Friends”. The ride to Penn was great! I was sitting up, joking with the ambulance crew and enjoying the attention of bright red lights and sirens!!!

And “flipping the bird” to cars behind me through the back window…GOD! I ALWAYS WANTED TO DO THAT!

I arrived at Penn Hospital at 5:30PM Tuesday and was directly taken to the ICU and immediately felt at ease knowing I was now in the hands of people who “knew” me. And the most beautiful sight was to see Dianne walking in about 5 minutes after I was situated. I could tell by her look that SHE was at ease also which took the weight of the world off my shoulders. An ICU “resident” physician had come to see me and reassured us that he was aware of our situation and that MY team had been in contact with him and a course of treatment was already planned and underway. Dianne and I were both much more relaxed and confident that EVERYTHING was going to be alright. They took a chest x-ray which confirmed that the fluid was pretty much all gone and that it was just a matter of allowing my lung to heal at that point. I was seen by MY Pulmonologists’ partner who was happy with my results so far and the next morning I was seen by an oncologist from the group (as I was to find that my Oncologist was away on vacation but that he was aware of my situation and following my progress via telephone…which was MORE than I expected.). Wednesday AM I was visited by MY Oncology Nurse Practitioner, Letitia, whose visit alone was enough to re-assure me that I was back in good hands. I had a CT of my Chest/Abdomen and Pelvis that showed ALL clear other than the lung lesions and they continued the antibiotics and DECREASED my pain meds to normal…NOT PALLIATIVE!!!! My breathing continued to improve dramatically and on Friday November 13th I was discharged and being driven HOME by my lovely bride and 2 of my little boys! AND THAT IS THE HAPPY ENDING, except to add that on Sunday the 14th I was out in the backyard tossing a football to my 7 year old, Joseph! With my Oxygen tank in tow, of course.

Today, I am home on transitory Oxygen as I “mend up” and I await a visit with my oncologist this week to plan my next regimen of chemotherapy.

THE MORAL OF THIS STORY, DEAR FRIENDS…

I didn’t write this to “scare” people with my horror story and I certainly am not doing this to “bash” a medical community that has been so wonderful to me throughout my career AND my illness. I felt the need to convey my story as a means to benefit my fellow “survivors” with an alert to them to ALWAYS be vigilant of the medical services being provided them by those “unfamiliar” with their medical history. People in our situation have been severely “compromised” by even the most benign mistakes made by competent, well meaning people in the medical field. We are not in a position to take for granted that those healthcare professionals treating us are “always” at the top of their game and therefore it is up to US to ensure that they are ALWAYS doing right by us and providing the best care possible. And we must make sure that our personal caregivers are aware of our wishes and feelings, our concerns and worries. It is up to US to tell them what is going on with our bodies so that they can step up and speak for us when we are unable to. My wife, Dianne played a huge part in saving my life last week. She took up the role of “advocate” for me when I was too weak to do so and expressed MY wishes to doctors who didn’t know me when I was out of breath, unable to scream at them. I am truly blessed to have her in my corner. Our great realization after all the dust had settled was this:

WHAT WOULD HAVE HAPPENED TO ME IF WE DIDN’T HAVE THE MEDICAL BACKGROUNDS WE HAVE? What if I never saw my previous CT Scan of October? What if I didn’t know how an Oxygen Re-Breather was suppose to work?

The answer is simple…I would probably have taken on blind faith the determinations of TWO medical “specialists” and I would currently be on a ventilator with a chest tube in me, in a private room, surrounded by family and friends waiting for me to die. PERIOD!

I cannot express to you all enough, after these events…BE YOUR OWN ADVOCATE AND APPOINT OTHERS TO ADVOCATE ON YOUR BEHALF FOR YOU IF YOU ARE UNABLE TO DO SO!!!

Some Pointers to help to that end:

1. ALWAYS ASK! What is that medication and it’s dosage?, What does it do? How often should I be getting it? How long will I be on it? Who wrote the order for it?
I was almost given 2 medications that I didn’t need because they were in my chart from a previous hospital stay a year prior! Don’t be afraid to ask…it’s their JOB to have answers for you! And it’s good to TEST them to make sure THEY know.

2. TAKE NOTHING FOR GRANTED! Never assume that THEY are right. Ask the doctor to view test reports with you…IT’S YOUR RIGHT! And it’s even MORE IMPORTANT when you have a COMMON LAST NAME. There have been diagnoses’ made based on an incorrect report before and that information can be invaluable to you when in an unfamiliar facility. And YOUR CHART(Medical Record) is to be made available to you AT ANY TIME at YOUR request. Each facility has it’s own protocol on allowing a patient to view their chart (i.e: can only be viewed with your physician present, ect…) but it is not a secret document…IT’S YOURS!

3. INQUIRE ABOUT EXPERIENCE! You can generally “sneak” this one in in general conversation, like…”So how long have you been in nursing”? Or “Do you like working here…How long have you been here”? “Where did you learn how to do that”? It’s amazing how much you can get a feel for someone’s skills simply by striking up a conversation! And many doctors LOVE talking about themselves…so it isn’t hard to get them going! It’s especially important, though, when a nurse/tech/doctor is beginning to set up for a treatment/procedure that you pay close attention to what they are doing. You needn’t “Brow-beat” them…but at least let them know you’re watching them by asking questions about what they’re doing. And if you get the SLIGHTEST suspicion that they’re not doing something appropriately or correctly, you can always politely ask them to have a colleague “double-check” it for YOU. Any medical professional confident in their skills will have NO problem with that…most professionals WELCOME those things, because you’re helping them to do a good job. AND IF YOU CAN’T…INSTRUCT YOUR APPOINTED ADVOCATE TO DO SO.

4. USE YOUR PATIENT CARE REPRESENTATIVES/ADVOCATES!!!! Just about EVERY hospital I’ve ever heard of has a person designated by the Board of Directors of that facility to act as a Patient Advocate. This person is NOT an employee of the hospital (*in most cases*), but is hired by and answers directly to the Board. It is their JOB to address ANY patient concerns and problems and they are there for YOU! ***USE THEM***

And lastly…

I would LOVE to be able to say that I was the best, most infallible medical tech of all time…but that would be a lie. I’ve made a few of those benign mistakes in my career as well and was fortunate that nothing “tragic” ever came from them, I am though just as human as everyone else and I always learned from those events to better myself and share with my colleagues so as to benefit ALL my patients. Just like all the previously mentioned healthcare workers in this story…my #1 goal was ALWAYS…”DO NO HARM”! I don’t feel there was ANY malice involved by any of these good hearted people, in fact, I feel they tried very hard in most cases to do their best. My point, however, is this: Good Hearted People can have an “off” day and we as patients MUST remain ever vigilant if we expect to remain as SURVIVORS! And with that said, I will leave you with a quote made to me by an old Radiologist, said to me as an X-Ray student as he was leaving the hospital for the last time into his retirement and his words have stayed with me ALL these years….
“Mike…This Institution has been here for a hundred years before you and it will be here for a hundred years after you…YOUR obligation and responsibility as a health care worker..is to ensure that YOUR era…was a GREAT one”!
— Henry J. Powsner, M.D.

As Always…Be Good and God Bless,
Mike

This entry was posted on Monday, November 23rd, 2009 at 6:44 pm and is filed under articles and tagged with Advocacy, Cancer, Lung Cancer, Mike Tufo, Survivorship, Synovial Sarcoma.