September 24,2017 I woke about 3AM with a choking cough, due to the chronic rejection. This time nothing would move. I honestly felt it was to be my last few breaths. I managed a slight intake of breath and blasted air out giving it my one last time. Finally- relief, I could breathe.
But, I triggered my A-fib. And it has stayed with me ever since, like a long lost enemy. Believe me when I say - it is NOT a long lost friend.
All the other "episodes" would correct themselves within a few days. The one previous to this, I went to my Cardiologist and received an IV until it corrected back to my normal heart rhythm.
If you follow this blog, you may remember I cannot take any anti-coagulants due to hemorrhaging from my right lung in 2014. A very scary summer I have no desire to repeat anytime soon.
However, I am again taking a chance. October 6, still having an erratic heart rate, I visited my Cardiologist. We had to stop the Multaq, not recommended for long term A-Fib. This has given my heart free reign on being all over the spectrum as to rhythm. Metoprolol went from 12.5mg to 75 mg twice a day, started Digoxin, and Xarelto. Yes, I asked for a blood thinner until we can at least try ablation or anything to keep me from a stroke. Imagine feeling great and so well managed on minimal doses to having Saurons army of Orcs pounding inside your chest wanting out.
We also discussed me getting the Watchman implanted in my left Atrial appendage. This would mean no more blood thinners !
In the middle of all this, I had other appointments, and did battle with my lung transplant team. They did not want me taking Xarelto or having ANY devices implanted at this time. My cardiologist called on the 6th, left them a message and we waited. Monday, I called them and did the one thing I most regret. I told them I was doing as my Cardiologist recommended as I had heard nothing from them. This is the culmination of a few mistakes that I question them making in dealing with my health. My Cardiologist again called and finally got a return call. What ensued between my transplant center may have them kicking me out of the program. I.E. calling in a Rx for Levacquin (I cannot take) and then calling another Rx into a mail order for 3 tablets of Levacquin. Why would anyone call in an antibiotic a patient needs NOW, to a mail order that will take 2 weeks to get to you? Three tablets ??? Seriously ?!? My right lung would laugh hysterically at that paltry defense, break out the catapults and gloriously defeat such a minute attack ! They also called in Gabapentin, to help with my cough, which is getting beyond controllable even with Tussionex. I can count on one hand the number of good nights sleep I've had in 5 years.. Once I read the side effects, I said nope, nada, no way. I am disappointed enough in how this is being handled, I refuse to take anything that could enhance that feeling. So, I am dealing with the cough. As usual.
The 16th was an appointment for a CTA of my heart to see if I can be a candidate for the Watchman. We failed. I was too nauseaus and the contrast (which I had to get permission for from my kidney transplant team) would make me sicker.. Oh yay ! We tried again yesterday, after 3 tries they could not get an IV catheter to go in far enough to inject the dye, plus my heart beat was all over the spectrum.. 19-150-68-120-52-49-113 yep that was me... Now we will try again on the 27th at the hospital where they will access my port instead of a vein.
I am concerned. The contrast could damage my transplanted kidney. To insert the watchman they will have to create a small puncture through the septum wall between the Atrium chambers. The same wall that was repaired 26 years ago to end my Primary Pulmonary Hypertension along with my bilateral lung transplant. The electrophysiologist promised to plug that hole really well... Hopefully I can also get ablation done to correct this darned A-Fib. My shortness of breath has increased 3-fold. AFib causes it as well as my chronic rejection. I need this corrected so I can tell when my rejection gets worse.
It is a lovely sunny Saturday, me & Ozzi are delivering goodies to a local pet rescue and then me, him & the Orcs will relax outside and try to read an uplifting book.
I.Am.Still.Here.
I.Am.Alive
I.Got.This.
Saturday, October 21, 2017
Tuesday, September 26, 2017
Comfort Zones
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 .
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 .
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