In June when my husband looked at me and oh so seriously stated, "Well it is that time of year for you." I wanted to dig out my cast iron skillet and go "Southern" on that mans head. period. I believe my look, said it all though.
True to form, I had an appointment with my Lung Transplant clinic on July1, and was promptly admitted. Though I still wonder why. Yes, I was coughing terribly. Yes, my PFT's were down. But seriously folks, It's that time of year. I have always given myself IVs . I mean who has time to wait for a nurse twice a day? This is my life, and I choose to do them myself.
One of the new Transplant Docs has a wonderful way of making his patients feel secure and safe. Just like Dr. Baz used to. I was feeling so horrible, I fell for it- hook, line and sinker. I agreed to be admitted, start antibiotics and have a bronchoscopy in the morning. I was put on the overflow wing the 8th floor. At first I was hesitant, until I realized these were all the nurses I had when on 11 in the old building ! It was like old home week, we talked, chatted and laughed- well until Dr. Salgado popped in and said I was being moved to 5. Deep depression sets in... My feeling of safeness slowly dissipates.. My nurse Eron, accessed my port and I did not even feel it! That is a huge Hooray for me.
For those of you who have never had a port, it feels like a small nickel size circle under the skin on one side of your chest. This is accessed with a special needle, and many make it feel like they are trying to pin you to the chair when inserting the needle. It never comes out- so my other veins (which are non-existent) get saved. The only down side is, when they change the needle there is no new place to go into. Yep, the needle goes into the same slightly sore spot your old needle just left.
Needless to say, I was only in for one day. I could not wait to leave ! A letter to hospital Administration is in the works. This was the most traumatic experience I can remember. I was discharged with A-fib on July 2 and to this day still have it. This may not seem like much to you, but I had been A-fib free for close to one year and we were decreasing my meds. The stress caused by 2 nurses on 5 started this.Suffice it to say, trauma nurses should not be lung transplant nurses. They should not be required to leave the room of a trauma patient and decompress to care for a transplant patient on the mend.
Enough on that subject. The situation we have fought for 6 years has happened. The "pus" and infection from my right lung has now started settling in my left lung. They should have yanked that trouble causing PITA when I asked years ago ! So now my natural progression will more than likely speed up. I have faced this before, and will again.. Only this time there will be no new transplant - the only light at the end of the tunnel will be final freedom of pain.
So I came home with IV antibiotics, nebulizer again twice a day (which will be continuous) and alot of prayers. My IV was finished on Friday. Yay for a decent shower! So now I am hopeful the A-fib will correct itself. I have gone from 12.5 mg of Metoprolol twice a day to 50mg twice a day. I can barely stay awake as this slows not only my heart rate( which it hasn't as of yet) but the rest of my body as well. Naps are no longer around 1PM, but 11Am lasting until about 5PM. So basically, I have no life except for auditioning for the role of Sleeping Beauty :) This medication also creates nausea and what feels like an intestinal flu but is in reality a side effect. Yes, it is too high a dose for me. I guess the next option will be to shock my heart back into a normal rhythm... They better start convincing now for say 2017 right?
I'm ever anxious to get my body and life back on track and start living again. No this is not a complaint, just stating a mere fact. I have a Bucket List to experience with Ozzi after all- who has recently had a tumor removed from his nose. We are quite a pair in our old age ain't we?
Showing posts with label bronchoscopy. Show all posts
Showing posts with label bronchoscopy. Show all posts
Sunday, July 19, 2015
Sunday, August 17, 2014
Updated, Decisions and A New Path in Life
I haven't posted much lately because I've been sick.
With the latest developments, I have promised a few very close friends I would let them all know what is happening.
I have bleeding internally since August 2013, we just had no idea from where. My hemoglobin and iron levels have dropped from 14 to barely 8.0. If you've ever had low iron, you know this is a serious drain on energy.
Since July I have had 3 major admissions into the hospital. But I want to give you a little background on me before I write it all here.
In 1991 I had a bi-lateral lung transplant with heart surgery.
In 2002 I had a single left lung transplant- which left the right lung from 1991 still in place.
In 2005 there was a kidney transplant, but I'll leave that in the past for now.. It's doing perfect.
In June I had a bronchoscopy and they found infection. We've known for 5 years that my right lung was basically dead- but causing alot of trouble. I've done the rounds of IV antibiotics, and inhalants each time they arise.
As June made it's way into July, I was NOT getting better, even with the antibiotics.
The beginning of July, one morning I woke up, went to the bathroom and could not get up. I had my head in the trash and hemorrhaging blood. The Doctors call in hemoptysis, I call it hemorrhaging when you can't pick your head up without coughing and bringing up uncontrollable bouts of blood. Well, I finally made it to to put on a shirt so we could go to the ER only to spend another few minutes at the sink.. Then I found the kitchen trash can.. Larry handed me a plastic container and said use this, we gotta get help. I will admit, I felt this was going to be my last day. As a lung transplant, my main fear is suffocating. Well I found a new way to scare me about my last day.. I could just see that one...
I was admitted to Shands, my transplant center (4 hours away),, the longest drive of my life. I was put on Cefipime, an antibiotic that my infection was sensitive to and taken off Coumadin. I was feeling better but still had small bouts of coughing blood. I came home...
Six days later, I was once again admitted to Shands. The blood episode caused disseminated Shingles. The shingles were not in one area, but literally everywhere: scalp, ears, navel, stomach, chest, face, and back.Another round of IV meds began. This time strong Anti-virals. I will forever be on a does of anti-virals to keep it at bay, lung transplants cannot get the shingles vaccine because it is a live vaccine.After 9 days I once again came home, itchy but home.
I was home all of one week and my temperature went to 101 and I started coughing blood again. Long drive to the hospital.. This time I was more prepared. My nightshirts and pajamas were all clean!
After a lung scan, bronchoscopy, heart echo and heart cath, the results are:
The infection is chewing away at my right lung and when it finds a small blood vessel, it chews until I bleed. My teams main concern is, what will happen when it finds a major blood vessel. According to them, I won't make it to call for help. I have always been told the right lung cannot be removed. The left lung would increase in size to fill the empty space. Well, they found that it already has, because my right lung as it shrinks has adhered to my pulmonary artery, trachea and chest wall. So it has enlarged as much as it can, because the right lung has pulled everything over ( reminiscent of your spouse stealing all the blankets).
My saving grace in all this is that my left lung is still functioning at 100% with a sat level of 97-100 !
Which brings me to my choices:
There are 2 types of lung recipients: those who are waiting for a 2nd chance,, and those who do not have one. While waiting for my 2nd lung transplant I jumped through every hoop my team threw at me ! Now, I want to enjoy my life.
I had chosen to be on minimal inhaled anti biotics to protect my left lung and live what life I have left. Painful but mine. This is opposed to feeling tied to a nebulizer for 12 treatments a day. I would never leave the table and feel I would die with regret that it was not my life. Basically be as comfortable as the pain will allow, but still die happy. This would allow me to start rebuilding my strength and endurance. They keep me one level and I take the bar higher. Dying with no regrets that I did NOT try everything I could to keep going.
My last day my team came in and asked if I would consent to a heart cath. My surgeon, thought he might be able to remove my right lung and allow save my left lung. His basis of thought being that I have beaten all odds, 20+ years is something to be proud of. They told me whatever I was doing at home - keep doing it !
My heart cath showed my pressures in my heart lower than they thought. so now they meet next week and decide if it is worth the risk.
Since the lung has adhered to my pulmonary artery, trachea and chest wall, the surgeon will have to literally peel it away. This will cause extra bleeding and a much longer, more difficult recovery. So it is something I have to think about as well.
This is honestly the first surgery where I didn't jump up and say "Let's do this !" There is alot to consider this time.. I am older, weaker at the moment, but I can remember a 90 lb weakling looking at my Momma asking "Do you think I'm up to this?" That was when I got the call for my 2nd lung transplant and I knew I had days left to live. But my left lung is the deciding factor.. I may get many more years if I try, but I may not..
We all get to a point where being kept comfortable and free of pain sounds like the best plan. I am truly of tired of fighting. Fighting the pain that has gotten worse. Fighting the cough, from the right lung. Sleep deprivation. 4 pillows. BUT I knew this could happen when I agreed 25 years ago to be listed ! Well, not the blood episodes. As a lung transplant, my biggest fear is dying of suffocation. I now have a bigger fear.
The weight loss has been an added plus. I am forcing myself to eat, I must. I have too much to live for to give up now.
This blog post was not written to garner sympathy. Please do not think me rude, but saying this. Sympathy keeps a person in those doldrum thoughts of Oh woe is me. That is not where I choose to be. I believe if we cannot say something positive to lift someone up... keep quiet. I rarely post on my FB page about my pain or issues for that reason. I am there to cheer my friends up and me in the process..
So either way I see this as a win situation... I can sit back, relax and enjoy what I have left or I can hopefully get surgery and have more time of planet earth.. Either way I am doing this my way.. I will have a LIFE not an existence.
With the latest developments, I have promised a few very close friends I would let them all know what is happening.
I have bleeding internally since August 2013, we just had no idea from where. My hemoglobin and iron levels have dropped from 14 to barely 8.0. If you've ever had low iron, you know this is a serious drain on energy.
Since July I have had 3 major admissions into the hospital. But I want to give you a little background on me before I write it all here.
In 1991 I had a bi-lateral lung transplant with heart surgery.
In 2002 I had a single left lung transplant- which left the right lung from 1991 still in place.
In 2005 there was a kidney transplant, but I'll leave that in the past for now.. It's doing perfect.
In June I had a bronchoscopy and they found infection. We've known for 5 years that my right lung was basically dead- but causing alot of trouble. I've done the rounds of IV antibiotics, and inhalants each time they arise.
As June made it's way into July, I was NOT getting better, even with the antibiotics.
The beginning of July, one morning I woke up, went to the bathroom and could not get up. I had my head in the trash and hemorrhaging blood. The Doctors call in hemoptysis, I call it hemorrhaging when you can't pick your head up without coughing and bringing up uncontrollable bouts of blood. Well, I finally made it to to put on a shirt so we could go to the ER only to spend another few minutes at the sink.. Then I found the kitchen trash can.. Larry handed me a plastic container and said use this, we gotta get help. I will admit, I felt this was going to be my last day. As a lung transplant, my main fear is suffocating. Well I found a new way to scare me about my last day.. I could just see that one...
I was admitted to Shands, my transplant center (4 hours away),, the longest drive of my life. I was put on Cefipime, an antibiotic that my infection was sensitive to and taken off Coumadin. I was feeling better but still had small bouts of coughing blood. I came home...
Six days later, I was once again admitted to Shands. The blood episode caused disseminated Shingles. The shingles were not in one area, but literally everywhere: scalp, ears, navel, stomach, chest, face, and back.Another round of IV meds began. This time strong Anti-virals. I will forever be on a does of anti-virals to keep it at bay, lung transplants cannot get the shingles vaccine because it is a live vaccine.After 9 days I once again came home, itchy but home.
I was home all of one week and my temperature went to 101 and I started coughing blood again. Long drive to the hospital.. This time I was more prepared. My nightshirts and pajamas were all clean!
After a lung scan, bronchoscopy, heart echo and heart cath, the results are:
The infection is chewing away at my right lung and when it finds a small blood vessel, it chews until I bleed. My teams main concern is, what will happen when it finds a major blood vessel. According to them, I won't make it to call for help. I have always been told the right lung cannot be removed. The left lung would increase in size to fill the empty space. Well, they found that it already has, because my right lung as it shrinks has adhered to my pulmonary artery, trachea and chest wall. So it has enlarged as much as it can, because the right lung has pulled everything over ( reminiscent of your spouse stealing all the blankets).
My saving grace in all this is that my left lung is still functioning at 100% with a sat level of 97-100 !
Which brings me to my choices:
There are 2 types of lung recipients: those who are waiting for a 2nd chance,, and those who do not have one. While waiting for my 2nd lung transplant I jumped through every hoop my team threw at me ! Now, I want to enjoy my life.
I had chosen to be on minimal inhaled anti biotics to protect my left lung and live what life I have left. Painful but mine. This is opposed to feeling tied to a nebulizer for 12 treatments a day. I would never leave the table and feel I would die with regret that it was not my life. Basically be as comfortable as the pain will allow, but still die happy. This would allow me to start rebuilding my strength and endurance. They keep me one level and I take the bar higher. Dying with no regrets that I did NOT try everything I could to keep going.
My last day my team came in and asked if I would consent to a heart cath. My surgeon, thought he might be able to remove my right lung and allow save my left lung. His basis of thought being that I have beaten all odds, 20+ years is something to be proud of. They told me whatever I was doing at home - keep doing it !
My heart cath showed my pressures in my heart lower than they thought. so now they meet next week and decide if it is worth the risk.
Since the lung has adhered to my pulmonary artery, trachea and chest wall, the surgeon will have to literally peel it away. This will cause extra bleeding and a much longer, more difficult recovery. So it is something I have to think about as well.
This is honestly the first surgery where I didn't jump up and say "Let's do this !" There is alot to consider this time.. I am older, weaker at the moment, but I can remember a 90 lb weakling looking at my Momma asking "Do you think I'm up to this?" That was when I got the call for my 2nd lung transplant and I knew I had days left to live. But my left lung is the deciding factor.. I may get many more years if I try, but I may not..
We all get to a point where being kept comfortable and free of pain sounds like the best plan. I am truly of tired of fighting. Fighting the pain that has gotten worse. Fighting the cough, from the right lung. Sleep deprivation. 4 pillows. BUT I knew this could happen when I agreed 25 years ago to be listed ! Well, not the blood episodes. As a lung transplant, my biggest fear is dying of suffocation. I now have a bigger fear.
The weight loss has been an added plus. I am forcing myself to eat, I must. I have too much to live for to give up now.
This blog post was not written to garner sympathy. Please do not think me rude, but saying this. Sympathy keeps a person in those doldrum thoughts of Oh woe is me. That is not where I choose to be. I believe if we cannot say something positive to lift someone up... keep quiet. I rarely post on my FB page about my pain or issues for that reason. I am there to cheer my friends up and me in the process..
So either way I see this as a win situation... I can sit back, relax and enjoy what I have left or I can hopefully get surgery and have more time of planet earth.. Either way I am doing this my way.. I will have a LIFE not an existence.
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