Over the last few months I've read many posts on Social Media about others health issues, life struggles, etc. It pains me to "feel" the heartache I sense coming through their words. I met a sweet lady, newly to the possible transplanted community recently, she stated she just finished reading my blog and wasn't sure if she could go through all I have.
First, let me say .... Not everyone will go through all I have. With the advances in medicine today, many will soar through their health issues with flying colors. I have met some of these new trail blazers and they warm my heart. Those of us with more than 15 years behind us (24 here) were the trail blazers of our day too. We helped spark that debate of, "What makes them thrive?" How does patient A live for 20 years with a transplant, while patient B rejects within 2 years?
I believe it can be summed up into two words: Acceptance and Overcome
Let's look at acceptance.
I accepted in 1977, I may not live to see 20 years old... I overcame it.
I accepted that in late 1989, I was given 12 months to live... Back then a physician had to give you this "death sentence" for you to be listed for a transplant.. I overcame it. On that 365th day I woke to a sense of , "is this my last" then I thought NO it will not be.
I accepted when my transplant team told me, this could be the last few years of my life- go enjoy it.
I cried over things I may never see again: the wind in the Palm Trees, the ocean, etc. BUT I overcame it by NOT falling into a mind trap of doing this everyday. I gave my "crying time" a priority of one hour once a month. The rest was devoted to my life. Each month I took my "woe is me" box from the shelf, opened it, had a good cry, closed it- and continued my life.
Just before Y2K, I was told I had chronic rejection. I was floored. Back then, it was a death sentence to us all. I cried for a few hours, then hit the Internet.. I researched, I read, and I researched more. My team gave me a game plan of what needed to be done. I accepted it. This game plan was my light at the end of the tunnel. It was rough.. It took all the strength and will power I had in me. BUT I DID IT! I learned I am stronger than I ever imagined, and more importantly I learned how to draw on that strength. We stopped the rejection... but...
I was refused a 2nd transplant....
I did not get depressed- I went into action. I contacted EVERY lung transplant center in the nation - and some were not so nice to me either. I found one who would evaluate me ! My new center saw a determination in me that my first one did not. I did everything that was asked of me.Limited breathing capacity, on oxygen (again), and knowing I would need a new kidney after my lungs were re-transplanted. Each time I was rushed in to the hospital, my Dr would give me a game plan of what needed to be done, I would reply "OK" . He knew beyond a shadow of a doubt, I was in 150%. I never asked how I would feel, if it would hurt, just "when can we start".
I overcame... I got my new lung, and stayed on a respirator for an additional week to give my kidneys a rest.
My next Acceptance was needing a kidney transplant. I did all they asked- except - accept that I would need dialysis. I researched... I had 3 pages of food to avoid that I created. Orange highlights had Potassium, Pink had phosphorus and green had both. I severely restricted my diet- never got dialysis... I overcame.. The thought of a 16 gauge needle in my arm gave me all the determination I needed.
If you have read most of my blog, you will remember that last year 2014 was not a good year for me. My right lung from the original transplant is becoming a little bothersome. My transplant team basically sent me home with the statement, there is nothing more we can do. I took this as being sent home to die. That is NOT being depressed. That is a call to action! Within 3 months I was back to my original strength, walking twice a day, swimming, and enjoying life within my boundaries. I asked one of my team if they had any idea of how long I had. I secretly wanted to prove them wrong :) He replied with anyone else I would estimate- you- we have no idea. That made my day !
I accepted this too... And I am overcoming it.
I have recently lost another beloved pet.. My Toy Fox Terrier CC (Capt Chaos) has left me. The loss of both "boys" has been hard. Dibs was due to an enlarged heart and CC to kidney failure. Both of which I can relate to. I still have my Ozzi with me. Though we have a deal- he will live forever as long as he is the only dog. You see, he thinks it's good being the king :)
This is not to say my life is all peaches and roses. I have a new regimen I follow to keep my right lung from affecting my left. I know I can still exercise, Dr. Baz taught me that when I was dying for a lung transplant. I can surely do it now. As my right lung wastes away, I can make sure the rest of me stays as healthy as possible. I will not give in ! That is not in my chemical, physical, or mental make up. It is not a fun journey at times, but it is still my journey to live. I intend to make it a grand adventure !
I have stated many times in my life, I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT. This is more true than you will ever know, and has kept me from depression.
So... Accept and Overcome.. No matter what you face in life.. If you are diagnosed with Diabetes, Heart disease, or any other ailment- Accept it Now. So you can Overcome it and triumph ! For to not accept can only lead to more health issues down the road.
I would like to take a moment and thank Maher Baz MD for all he taught me through his time as my transplant physician. It is the inner strength, he showed me I had, that I now draw on. I think back to his teaching during the wait for my 2nd lung transplant and the quiet confidence I felt he had for me to overcome. I will always attribute my life and how I choose to overcome my obstacles to him.
Tuesday, May 26, 2015
Friday, April 3, 2015
The Joys Of Using A Nebulizer
I've kept in the back of my mind that I need to blog... But as always LIFE gets in the way.
Today I wanted to add a little humor .. Only lung patients will understand the basis of my blog.
When we say we are nauseous from our nebulizer, many think reguar run of the mill nauseau.
Not a chance ! This is one of those "read between the lines" sort of thing. You know, something we just cannot explain, and others would never think it actually happens.
So without further delay, I give you my meaning of :
Nebulizer Nauseau
That undeniably nasty feeling one gets when doing a nebulizer treatment (breathing) to open up airways. Medicines such as Albuterol or Xopenex.
The entire body inside and out jitters so ferociously the stomach is thrown into an upheaval and hence- minor nauseau begins.
But oh my friends, it does not stop there... Oh ! if ony life were so kind..
The first nebulizer treatment is followed by a second treatment. Usually an antibiotic or saline solution to "break up" mucous . Not just any mucous either.. This is thick, stick to your airways mucous. The kind that refuses to move, no matter how many times you chokingly cough, eyes water, etc.
This triggers a cough where all one can do is hang your head over a can and pray it happens fast !
Usually not the case.. You cough, and you cough, and you cough. This stuff is moving but even a tortoise could go faster. You feel it at the back of your tongue and wish- "Just move !" As it ever so slowly moves it's way out- it leaves that wonderful taste all over your taste buds.. This triggers more heaves.. Yep I never said it was easy.
At this point the jitters combined with the cough & horrid taste have made your stomach do a complete flip. It is now following the mucous on the way up..
You now have full blown
Nebulizer Nauseau
No cure, No relief (becasue you'll only cough more)
Oh! And keep that toothbrush handy... You'll wear those out in record time ;)
Today I wanted to add a little humor .. Only lung patients will understand the basis of my blog.
When we say we are nauseous from our nebulizer, many think reguar run of the mill nauseau.
Not a chance ! This is one of those "read between the lines" sort of thing. You know, something we just cannot explain, and others would never think it actually happens.
So without further delay, I give you my meaning of :
Nebulizer Nauseau
That undeniably nasty feeling one gets when doing a nebulizer treatment (breathing) to open up airways. Medicines such as Albuterol or Xopenex.
The entire body inside and out jitters so ferociously the stomach is thrown into an upheaval and hence- minor nauseau begins.
But oh my friends, it does not stop there... Oh ! if ony life were so kind..
The first nebulizer treatment is followed by a second treatment. Usually an antibiotic or saline solution to "break up" mucous . Not just any mucous either.. This is thick, stick to your airways mucous. The kind that refuses to move, no matter how many times you chokingly cough, eyes water, etc.
This triggers a cough where all one can do is hang your head over a can and pray it happens fast !
Usually not the case.. You cough, and you cough, and you cough. This stuff is moving but even a tortoise could go faster. You feel it at the back of your tongue and wish- "Just move !" As it ever so slowly moves it's way out- it leaves that wonderful taste all over your taste buds.. This triggers more heaves.. Yep I never said it was easy.
At this point the jitters combined with the cough & horrid taste have made your stomach do a complete flip. It is now following the mucous on the way up..
You now have full blown
Nebulizer Nauseau
No cure, No relief (becasue you'll only cough more)
Oh! And keep that toothbrush handy... You'll wear those out in record time ;)
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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