We all have them. Those places and people that we know we can trust with our lives. They know us there. They support us and often literally keep us alive.
This is extremely true for transplant recipients. Our Transplant Centers are our Comfort Zones. for many of us, this is where we found the physicians that have ever been able to answer our questions about our diagnosis. I remember my first trip to University of Pittsburgh. I searched 28 years for answers to what my diagnosis actually was, and the cause. Then as if by magic, I was overwhelmed with answers ! And the Coordinators- oh my ! if all health care staff could be just like them. They were caring , positive, and so friendly.
Great flash back... and you know, even now at a different transplant center, this remains true. We as patients literally put our lives and well being into their hands. No other doctors office runs like these do. We talk to a live person, we get call backs, we get answers AND we do not have to wait 48 hours! Many times I have said, "I wish all offices could be like my center."
I am currently in a concerning dilemma.
I sense the chronic rejection/infection from my right lung has sneakily taken up residence in my left lung. Now this devious organ has tried this before, many times. We try to catch it early and make it move back home. Let me give you a little history here. The right lung is from a double lung transplant almost 26 years ago (I know, Yay me !) while the left lung was re-transplanted at Shands Hospital almost 15 years ago (again Go Me !!). I am known for doing all possible to stay away from hospital admissions.
Through the years my transplant coordinator has always known that if I call and say there is an issue, we jump right on it. We've shared many hospital admissions that took me years to get my strength and endurance back, and neither of us want a repeat. Bette, happy and medically managed healthy is a wondrous thing to be !
I've noticed my cough ( part of right lung chronic rejection, and as Heddi would say "A real Bugger") has gotten more prominent. Pain in my right side tells me it's on the move. Pain on my left side screams "Get it out !" My cough can be loose (preferably) or tight to the point of choking me (not fun). When you are woken up at 3AM choking and cannot get air in to make ANYTHING move- it is NOT a good thing. Both sides ache from muscles being strained to unbelievable levels. Been there. done that. Sadly it will happen again many times in my life. My friends know, my biggest fear is suffocating, alone and no help.
This is where I am now. Plus temperatures off and on for the last 3 weeks. Now comes the inevitable, walking across the room and I am struggling to breathe. This is NOT the Bette, who was walking and climbing in Maine just a few months ago ! This is NOT the Bette I want to be !
I coughed/ choked so long and hard on Sunday morning I went into A-Fib- today is Tuesday and I am still trying to get my heart rate back to normal. I will, if not my cardiologist will bring me in and there is an IV that works - just an annoyance is all.
Now the real concern... There is not one physician or coordinator who remembers my past history. They are all NEW ! I was called in a prescription for Levacquin, 1 tablet a day for 7 days. Ha ! I laughed hysterically.. I know it has to be knocked out and fast. This infection will shore up the tower, bring out the seige enginges and merely enjoy the little attack on it's defenses. Plus, I cannot take it. Levacquin causes a prolonged QT wave in your heart. I already have that, plus it does not play nice with my heart medication Multaq. I had open heart surgery with the double lung transplant instead of a heart transplant as well.
I called up Monday and asked if there was availability for a Wednesday visit. They were full & overbooked. Now, under different circumstances, this infection would have been long moved back to it's home with me being treated like we normally do. Heavy duty antibiotics called in & if I don't feel better within 14 days, a visit to start IV meds. I have repeated my history multiple times. I wonder if they are tired of hearing "This is what Dr. Baz always did for me and it worked ?" Maybe I should change it to Dr. Baz, Dr. Akindipe & Dr. Salgado ? In my defense, my previous physicians proved to me time and time again- they would keep me alive. Those transplant coordinators deserve a universe of praise as well ! I admit, when I'm sick, I want to get well NOW. I had all these transplants to embrace life and this is merely an interference with me getting on with life.
I guess what I'm saying is, after trial and error we found what works for me. I don't really want to go through trial and error again. Is it too much to ask, to have a physician who KNOWS me and a coordinator as well.
During this phone call, I spoke with Rita the transplant assistant. When I mentioned coming up, her response was, "You're one of our strongest patients, when you call we know you are serious." My response: "I know! right! You're the only one there who remotely remembers my history." I did get an appointment, with a promise that I will be given nothing unless in conjunction with my Cardiologist approval. As long as he knows, and we are proactive, I'm OK with it.
My suggestion for hiring coordinators. Let's not look at qualifications, but more at longevity. My coordinator in Pittsburgh is still there 26 years later. How comforting that is. My original coordinator at Shands, I had for many years & was heartbroken to lose her as well as my physician (happily married with gorgeous kids), but there was a long period of transition to Sonja. Sonja was moved to pre-transplant after a few years and I got Chad who after 2 visits took a promotion and I got Sherrie. I just barely knew her and she left. After a few talks with Ashley-Marie my new coordinator, she is trying her best to know me and be my advocate. I only hope she stays for a long time.. The foundation of my comfort zone has shaken just like out recent Hurricane. This appointment will be stressful as I fight for what I know I need from years of experience, as well as try to not bring up physicians of the past.
Safe to say, I will get through this. I am not ready to check out yet, even with continual coughing for 5 years and lack of sleep from said coughing.. This is still my life and I intend to check out when I am ready. My goal to be back in Maine next summer and walking those inclines again ! Oh, and the lobster and Haddock are a great enticement too :)
Be safe... Be a Donor.... Lives depend on you .
