I went to The Dr.'s office and filled out the forms. No office hours today so I will call tomorrow to find out what happens next. I think everything is done now. I think now I just wait for the call from Notre Dame Hospital to go in for the transplant evaluation. I am excited.
I am not thinking much about how hard it will be. My thoughts are more of the things I might yet get to do again. Like riding a bike, walking a golf course, running, taking care of my own home. Thinking I might yet live to be 70 since I almost have 60 beat. Thinking about Nicole not having to be a caregiver to me. All dreams, but closer.
I really want to do it now. I really want to live. I feel so strong right now I have no doubt I can survive the operation and the rehabilitation. Today I visualize the operation, the recovery, the rehab as sort of a game. I love games and I am competitive. Suffering is all part of playing to win. The prize being enough breath to have another go at being super fit, enough energy to run and run and run. Oh my I want. I am ready! Maybe I can make it on to the Transplant List by Christmas? By my birthday at the end of February? I think so!
Tuesday 19 November 2013
Monday 18 November 2013
No More Waiting
The phone rang 30 minutes ago. It was June of The Dr.. She told me to go to the pharmacy and get a print out of my current prescriptions and to bring it to The Dr.'s office. The application for my lung transplant is ready for my signature.
Monday, monday...
Monday morning waiting mode. I think I am getting a cold. The last two days I have felt a bit out of sorts. That is way scary. I have not yet reached for the emergency antibiotics and prednisone. I will hold out a bit longer. I hope and expect to hear from The Dr. this week, and I fully expect there will be no more delays.
I have been thinking off and on for the last week or so about how I am feeling emotionally and it is not at all a straightforward thing. For much of my life I have viewed my emotions with distrust. Emotion hurts. I think to a great degree I turned them off and life was better for a long time, decades even. Of course you cannot really turn emotion off, but, you can clamp a very tight lid on them. I am starting to suspect that rather than feeling good I am noting an absence of feeling bad. Is this really living in the moment, this lack of self analysis, this lack of feeling? Ultimately trying to live without emotional content fails, and fails spectacularly with depression and anxiety, at least in my experience. That is not happening now but I am wary.
It is almost as if I only know two ways to be. One way I am full of self doubts, uncertain and questioning of everything, every motive, every action, every thought. Lost, floating, unsure of anything at all, ever. The other, blissfully ignorant and accepting.
I don't know how I feel, really. How I am feeling seems to be a deep dark secret that my unconscious self will not share with my conscious self. Comfortably numb. I wonder how much of my "happiness" is the result of absence of pain and suffering in the short term? I think I am just existing. I have been completely unsuccessful in addressing my thoughts of late. As soon as I start to see, the fleeting thoughts retreat. There is something that I need to understand.
I have been thinking off and on for the last week or so about how I am feeling emotionally and it is not at all a straightforward thing. For much of my life I have viewed my emotions with distrust. Emotion hurts. I think to a great degree I turned them off and life was better for a long time, decades even. Of course you cannot really turn emotion off, but, you can clamp a very tight lid on them. I am starting to suspect that rather than feeling good I am noting an absence of feeling bad. Is this really living in the moment, this lack of self analysis, this lack of feeling? Ultimately trying to live without emotional content fails, and fails spectacularly with depression and anxiety, at least in my experience. That is not happening now but I am wary.
It is almost as if I only know two ways to be. One way I am full of self doubts, uncertain and questioning of everything, every motive, every action, every thought. Lost, floating, unsure of anything at all, ever. The other, blissfully ignorant and accepting.
I don't know how I feel, really. How I am feeling seems to be a deep dark secret that my unconscious self will not share with my conscious self. Comfortably numb. I wonder how much of my "happiness" is the result of absence of pain and suffering in the short term? I think I am just existing. I have been completely unsuccessful in addressing my thoughts of late. As soon as I start to see, the fleeting thoughts retreat. There is something that I need to understand.
Wednesday 13 November 2013
Dr. P. called me this morning
Dr. P. himself called me a little while ago. He advised that he had a discussion with The Dr. this morning. The call to me was specifically to tell me to stop taking carvedilol, a beta blocker that he prescribed when I saw him last week. The intention was to try it at an ultra low dose 3.25 mg instead of the standard 50 mg. The drug had the intended effect of lowering my pulse rate. For the first time in years it was under 100 every time I checked it during the last week. My weakened lungs make my heart work harder and that causes not only congestive heart failure and heart attacks but my pulse rate is seriously high all of the time, which I figured cannot be a good thing. Unfortunately the main side effect of the drug is difficulty in breathing. I have noticed that I got short of breath easier in the last week than normal. I think I was willing to accept the trade off, but, The Dr. wants me to stop taking it. So, stop it I will. We can discuss it together during my next appointment, which I imagine will be in the next week or two.
From Web MD
From Web MD
Chronic obstructive pulmonary disease (COPD) and heart failure both cause difficulty breathing. For people who have both COPD and heart failure, identifying the cause of breathing symptoms can be challenging.
Symptoms of COPD and Heart Failure
COPD and heart failure
cause the same main symptom: shortness of breath with exertion. People
with COPD, heart failure, or both, have a limited ability to exercise, climb stairs, or walk long distances. Difficulty breathing occurs for different reasons in COPD and heart failure.
People with COPD have difficulty exhaling all the air in their lungs because of lung damage -- often from years of smoking.
When it takes longer to exhale completely, it’s hard to increase the
rate of breathing. Most people with COPD breathe comfortably while
resting. During exertion, though, breaths start coming in before air
from the last breath has been exhaled, and shortness of breath results.
In people with heart failure, the heart does not pump blood
efficiently. As in COPD, most people with heart failure can breathe
easily when at rest. With activity, blood flow must increase, and the
heart must pump harder and faster. If the heart can’t keep up, blood
“backs up” into the lungs. This fluid congestion causes shortness of
breath.
COPD and Left-Sided Heart Failure
Heart failure in the left ventricle is the most common form of heart failure. Left-sided heart failure is most often caused by high blood pressure
or coronary artery disease. COPD and left-sided heart failure are not
directly related. However, the two conditions may influence each other.
For example, low oxygen in the blood from COPD may put excess strain on
the heart, worsening left-sided heart failure. Excess fluid in the lungs
from heart failure can make breathing even more difficult for someone
with COPD.
COPD and Right-Sided Heart Failure
Severe COPD can cause heart failure in the heart’s
right ventricle, a condition called right-sided heart failure or cor
pulmonale. In severe COPD, oxygen concentration in the blood falls to
abnormally low levels. In response, the walls of the main blood vessels
inside the lungs (pulmonary arteries) change. The blood pressure inside
these arteries goes up, as well. This is one type of a condition called pulmonary hypertension.
The heart’s right ventricle pumps blood through the
pulmonary arteries into the lungs. High blood pressure in the pulmonary
arteries puts excess strain on the right ventricle. Over time, the right
ventricle may become stretched and dilated, and fail to pump blood
effectively.
Right-sided heart failure causes fluid to accumulate in the body, such as in the legs and abdomen. Many conditions other than COPD also cause pulmonary hypertension and right-sided heart failure.
I think we are just about there, the referral to the thoracic surgeons at Notre Dame Hospital is almost in my hands. I remain calm and detached. I feel good. I will not be surprised by anything once I get the referral. The surgeons might not want to help out an ex smoker. I might not have the genetic makeup they need. Those things will not matter if they happen. It will just be the way things go. However, having gone this far I would be mightily disappointed if I did not at least make it far enough to meet those good doctors at Notre Dame Hospital.
Monday 11 November 2013
I called The Dr. this morning and I spoke with June. I let her know that I had met with Dr. P. last Monday and that he had given me assurances that my heart's health was good enough to endure the transplant. She had not seen anything from Dr. P. yet. She promised to keep on top of it and get back to me shortly.
I thought today I would talk a little about what my illness feels like these days, what I am up against all the time. The best analogy I have heard to date is that emphysema in it's late stage feels exactly like breathing through a straw feels to a person with normal breathing. You get air, but it is never enough, ever. The normal reaction to this feeling is panic and that only makes it worse. First, you have to accept that this is all the air you can get and it is enough, it just does not feel that way. You do learn to cope and adapt to this to a certain degree. If I take a few steps too quickly or brusquely I am left out of breath completely and it takes a few moments to recover. This happens all the time, especially when I feel pretty good. I really am an infernal optimist, I constantly forget that I am sick, which I suppose is a good thing generally. I can go from gasping, on the edge of loosing consciousness to good to go in a matter of two minutes. It is so damn easy to forget and get into trouble. I keep thinking that is good.
I have a lot of pain being caused by a shot left hip. For most of this year I did not really feel it much because I was taking prednisone. Happiness is not needing or wanting to take prednisone. I feel infinitely better at the moment in spite of the skeletal pain I have to endure. I know this spring time of good health I feel now is fleeting. I am enjoying ever last second of it.
Emotionally I think I am doing pretty good. I face things without being overwhelmed by them. My biggest worry is and always will be staying solvent and making sure Nicole gets a house with plenty of equity in it. That remains a serious challenge and we live on the edge. That itself is a major source of anxiety. I do not feel sorry for myself at all. I am not depressed for which I am thankful. I do feel a bit lonely at times. Without a car it is difficult to get around. I can walk but not very far. I am afraid of crowds of people, especially now that the weather is colder and we are in flu season. Flu terrifies me. So I am mostly shut in.
I take a LOT of medications. I really wish I did not, did not have to. I have no desire to fight or disagree with my Doctors at this time even though I suspect this is somewhat a ridiculous medication load. They all seem to be indicated. Here is a list of what I take at the moment:
Carbocal D 1000 mg daily
Ramipril 5 mg daily
Clopidogrel 75 mg daily
Citalopram 20 mg daily
Asaphen 80 mg daily
Rosuvastatin 10 mg daily
Azithromycin 250 mg daily
Fosavance 70 mg weekly
Spiriva daily
Symbicort 2x daily
Bricanyl as needed
Prednisone when req
Quite the load of meds eh? I hear post lung transplant involves about 50 different medications!
Today is a good day. I love Nicole. I have gorgeous little kitties to play with. I have friends who love me.
Hopefully June of The Dr. will make my phone ring soon, and her lovely voice will tell me to come see The Dr. The Dr. sends the application and we live happily ever after. Helluva story, eh?
I thought today I would talk a little about what my illness feels like these days, what I am up against all the time. The best analogy I have heard to date is that emphysema in it's late stage feels exactly like breathing through a straw feels to a person with normal breathing. You get air, but it is never enough, ever. The normal reaction to this feeling is panic and that only makes it worse. First, you have to accept that this is all the air you can get and it is enough, it just does not feel that way. You do learn to cope and adapt to this to a certain degree. If I take a few steps too quickly or brusquely I am left out of breath completely and it takes a few moments to recover. This happens all the time, especially when I feel pretty good. I really am an infernal optimist, I constantly forget that I am sick, which I suppose is a good thing generally. I can go from gasping, on the edge of loosing consciousness to good to go in a matter of two minutes. It is so damn easy to forget and get into trouble. I keep thinking that is good.
I have a lot of pain being caused by a shot left hip. For most of this year I did not really feel it much because I was taking prednisone. Happiness is not needing or wanting to take prednisone. I feel infinitely better at the moment in spite of the skeletal pain I have to endure. I know this spring time of good health I feel now is fleeting. I am enjoying ever last second of it.
Emotionally I think I am doing pretty good. I face things without being overwhelmed by them. My biggest worry is and always will be staying solvent and making sure Nicole gets a house with plenty of equity in it. That remains a serious challenge and we live on the edge. That itself is a major source of anxiety. I do not feel sorry for myself at all. I am not depressed for which I am thankful. I do feel a bit lonely at times. Without a car it is difficult to get around. I can walk but not very far. I am afraid of crowds of people, especially now that the weather is colder and we are in flu season. Flu terrifies me. So I am mostly shut in.
I take a LOT of medications. I really wish I did not, did not have to. I have no desire to fight or disagree with my Doctors at this time even though I suspect this is somewhat a ridiculous medication load. They all seem to be indicated. Here is a list of what I take at the moment:
Carbocal D 1000 mg daily
Ramipril 5 mg daily
Clopidogrel 75 mg daily
Citalopram 20 mg daily
Asaphen 80 mg daily
Rosuvastatin 10 mg daily
Azithromycin 250 mg daily
Fosavance 70 mg weekly
Spiriva daily
Symbicort 2x daily
Bricanyl as needed
Prednisone when req
Quite the load of meds eh? I hear post lung transplant involves about 50 different medications!
Today is a good day. I love Nicole. I have gorgeous little kitties to play with. I have friends who love me.
Hopefully June of The Dr. will make my phone ring soon, and her lovely voice will tell me to come see The Dr. The Dr. sends the application and we live happily ever after. Helluva story, eh?
Wednesday 6 November 2013
Dr. P. Says Good To Go
On Monday morning Dr. P. unequivocally informed Nicole and I that he would be calling The Dr. to advise him my heart was up to the standard required for a lung transplant. I think we are back on again, at least in terms of getting an application submitted to Notre Dame Hospital. I will chill for the rest of the week. I will call June at The Dr.'s office on Monday if I do not hear from her this week. Will The Dr. sign off finally? Will there be something else?? Who TF knows! Not me! Know what? It's ok. It's all good. I is only along for the ride, ready for whatever comes next.
Dr. P. told me I actually had two separate heart attacks. The first one at home on that fateful Tuesday morning in August. That was followed three days later by another larger heart attack on Sunday morning while I was in the hospital. I would not have guessed about the second one. It did not involve any chest pain at all. It was a horrible event that lasted at least 4 hours, I was put on a ventilator and I do remember wishing I could just die and get it over with. Still, it felt like another breathing attack or breakdown not a heart attack. Live and learn I guess. Dr. P. started to get into the technical aspects of what happened to my heart. I was surprised to find I was not particularly interested, I did not make any notes. The damage to my heart is considered moderate to medium. Right side is fully congested, left side fully functional. The strength of the muscle is reduced overall by about 35%. This is all within the norm according to Dr. P. Surgery is not called for. Medications for life.
So, we feel good about things as they stand now. Stress and misery are nowhere to be found in our house. Life is good.
Dr. P. told me I actually had two separate heart attacks. The first one at home on that fateful Tuesday morning in August. That was followed three days later by another larger heart attack on Sunday morning while I was in the hospital. I would not have guessed about the second one. It did not involve any chest pain at all. It was a horrible event that lasted at least 4 hours, I was put on a ventilator and I do remember wishing I could just die and get it over with. Still, it felt like another breathing attack or breakdown not a heart attack. Live and learn I guess. Dr. P. started to get into the technical aspects of what happened to my heart. I was surprised to find I was not particularly interested, I did not make any notes. The damage to my heart is considered moderate to medium. Right side is fully congested, left side fully functional. The strength of the muscle is reduced overall by about 35%. This is all within the norm according to Dr. P. Surgery is not called for. Medications for life.
So, we feel good about things as they stand now. Stress and misery are nowhere to be found in our house. Life is good.
Tuesday 5 November 2013
Lana is going to pick me up in about an hour to drive me to see Dr. P. the cardiologist. Supposedly I will know finally if my heart is up to standard for a lung transplant. I have no confidence that I really will find out today. Something will creep up and keep me in a holding pattern. The information I have so far does not seem to add up.
The good part of all this is my attitude. I wish I knew how I do it, at least sometimes. How is it that I can detach enough to not worry about ANYTHING a lot of the time and other times I vibrate at a million cycles a second with anxiety. Dunno. No farking idea really.
Nicole and I talked a bit this morning about just that. I told her that I would be just as happy to have the transplant called off as I would to have it go ahead. Maybe that does not make sense to someone else, but it feels true to me. Once I am told I cannot have one then life resumes most simply. Right now I feel like I could live forever just as I am. Maybe it might not feel like hope is gone, but rather like it feels now, that it is time to live today, everyday. The transplant hopes represent chaos and uncertainty, stress and pain from the moment it happens until I die from a related effect somewhere in the unknown future.
I do feel pretty good at the moment and that is just fine.
The good part of all this is my attitude. I wish I knew how I do it, at least sometimes. How is it that I can detach enough to not worry about ANYTHING a lot of the time and other times I vibrate at a million cycles a second with anxiety. Dunno. No farking idea really.
Nicole and I talked a bit this morning about just that. I told her that I would be just as happy to have the transplant called off as I would to have it go ahead. Maybe that does not make sense to someone else, but it feels true to me. Once I am told I cannot have one then life resumes most simply. Right now I feel like I could live forever just as I am. Maybe it might not feel like hope is gone, but rather like it feels now, that it is time to live today, everyday. The transplant hopes represent chaos and uncertainty, stress and pain from the moment it happens until I die from a related effect somewhere in the unknown future.
I do feel pretty good at the moment and that is just fine.
x
Saturday 2 November 2013
I have been feeling quite good lately. Staying in the moment has been easy and I have not fretted very much about anything. I also have not been writing, though everyday I think about it when my thoughts produce something interesting. Today I will start writing again.
I had the angiogram two weeks ago Monday, and I see the cardiologist this coming Tuesday morning to discuss the results. During the procedure itself the surgeon told me the news was good. No angioplasty to be done. No corrections necessary. The left side of my heart has no obstructions while the right side is completely obstructed. As well the pumping strength of my heart is decreased by some 35%. Supposedly this is all fine. Even if I could have surgery I was told none would be needed. My heart is fine for all intents and purposes. While I am ignorant of cardiac anatomy generally it does seem like the left side does almost all the work in terms of bringing blood in and out. I dunno. I am waiting until Tuesday to hear in plain language that my heart will not be an impediment to having a lung transplant. Even when Dr. P., or if Dr.P. says I am good to go, The Dr. has final word on signing off on an application for the lung transplant. I do think that we are close to moving closer or being shut down altogether. I am pleased about that.
I will just post this now and come back to write more later and again tomorrow. I am quite amazed at how good I feel.
I had the angiogram two weeks ago Monday, and I see the cardiologist this coming Tuesday morning to discuss the results. During the procedure itself the surgeon told me the news was good. No angioplasty to be done. No corrections necessary. The left side of my heart has no obstructions while the right side is completely obstructed. As well the pumping strength of my heart is decreased by some 35%. Supposedly this is all fine. Even if I could have surgery I was told none would be needed. My heart is fine for all intents and purposes. While I am ignorant of cardiac anatomy generally it does seem like the left side does almost all the work in terms of bringing blood in and out. I dunno. I am waiting until Tuesday to hear in plain language that my heart will not be an impediment to having a lung transplant. Even when Dr. P., or if Dr.P. says I am good to go, The Dr. has final word on signing off on an application for the lung transplant. I do think that we are close to moving closer or being shut down altogether. I am pleased about that.
I will just post this now and come back to write more later and again tomorrow. I am quite amazed at how good I feel.
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