June 29: Temple appointment +
There is a reason I delayed posting about my doctor's appointment almost 3 weeks ago: still haven't completed the evaluation. But here is the news so far....
Didn't get taken back until almost 2 hours after the appointment time. Justification for buying the Kindle! Had a regular echo first.
Dr. Forfia came in with a Fellow, having already seen my echo that day as well as a review of my medical records. He asked me for my version (it may come as a surprise, but with using medical terms the history can actually be compacted into about 2 minutes), listening intently. He then gave his impression (summarized):
'Under 'normal' circumstances we would send you in for a re-do of your mechanical valve, but clearly that is not an option since, as you say and the records show, that when they replaced the valve they ran into your physiology being so abnormal and couldn't put in a larger size. Since there is no chance of a surgical revision, there is only one treatment that will fix your condition and resolve your symptoms: you need a heart transplant.'
It never gets easier to hear, but there are benefits to multiple medical evaluations and having cardiology as my specialty: not being surprised by statements like this. You already know my response: 'That's not happening.'
You don't need the blow by blow of the next 30+ minutes, although I will tell you that Dr Forfia manage to fit in at least 5 more times that 'the best treatment would be a transplant', or, as he referred to it 'we could just drop a new heart in there and be done with it.' Really? Just 'drop it in there'? Let me tell you this: no one who has ever actually HAD heart surgery will use that phrase. I totally understand that if you compare a human body to a car that the heart is comparable to the engine, so using the vernacular is appropriate. But it's my body, and it's tired and scarred and hurting from being ripped and torn apart four times (including thoracotomy) and the risk of something going wrong would be much, much higher in circumstances of multiple chest surgeries with extensive internal scar tissue formation. And now an autoimmune disorder, the treatments for which all slow healing and increase susceptibility of infection, not to mention increased stroke risk. It's just asking for trouble. I'd rather stick with the known evil than create another much larger one.
So, with transplant not an option he says that he wants to increase my diuretics and that I must lose weight. He said that very nicely, and with an immediate statement that my weight was not the main issue, but that all that could be done now would be small things that would hopefully add up to an improvement in my functioning. This makes perfect sense. I certainly have understandable reasons for having my weight increase: multiple foot fractures, menopause, prednisone and an inability to exercise, all of which he acknowledged. I also pointed out that my current diet is gluten free, no nightshades vegetarian, so it's not like I'm sucking down tons of fat and sugar. But the fact is that I'm 25 pounds heavier since the 3rd surgery, and I was supposed to lose weight then. While I can certainly justify why my weight has gone up, it doesn't change the fact that less body mass will mean less strain on my heart.
He also wants a pulmonary stress test, entailing of detailed measurements of oxygen and carbon dioxide exchange while on the treadmill. He wanted the test before making any changes, to see what my current functioning is. While that is also understandable he didn't check with the department before making that plan. Turns out they only do the test 4 times a week, and my appointment isn't until July 11th, a full month after my appointment with him.
So after all that fun, and hearing several more renditions of the 'All You Need is a Heart Transplant' song, the next day was dealing with the private insurance company. My monthly check was $381 short, with a note that I hadn't given them my Social Security paperwork. My messages to the claims manager, LV, were sickeningly sweet, along the lines of 'I'm sure there is some little mistake and it will be a simple fix'. It took four attempts over a couple days before she took my call. The paperwork issue was quickly resolved, but there was a new medical form as well.
I explained to LV that I hadn't taken the form to my regular cardiologist since I was getting another evaluation and more testing from Dr. Forfia, which would, of course, be new information backing up my claim in addition to the pulmonary rehab report. To get across the severity of my medical issues (since they continue to want proof every 2 months, and it's not going to change in that time) I told her that my heart condition was severe enough that a transplant was the only cure, but that I had refused. Her response? 'Oh, so you're just giving up then?', said in a tone of judgmental sarcasm.
I really wanted to do a repeat performance of my f*%king tirade of January, but you can't do that to the person who gives you your monthly income. Instead, my anger, frustration and terror about the whole situation bubbled to the surface and I burst into tears, which as you know is not something I like to do at all, much less for someone to witness. Through my tears, and gasping for breath every few words, I did explain the reason for my decision, pointing out that unless she had had three open heart surgeries that she had no concept of what the contemplation of a fourth heart surgery meant. At some point she seemed to realize she had crossed a line.
She seemed to take pity on me, and told me that at the 2 year mark of the disability that her company did an evaluation to see if there is ANY job that the person collecting can do, taking into account their training and education, and if there is any work than the disability payments stop. It doesn't matter that I wouldn't be able to work enough hours to earn enough to live on. It doesn't take into account the energy needed to get ready and get to a job, just if you are capable of doing something, anything. It's an insurance company: their goal is to take money in and not give it out. She as good as told me that in about 16 months this income would be over.
This is totally separate, BTW, from getting SSD, so at least there's that. Appeal still pending.
It has occurred to me that maybe I should say yes and go through the transplant evaluation process, which I'm 90% sure I wouldn't be approved for, just to put it to rest. Just get it off the damn table so I can stop having to justify my decision and have something indisputably final on all future medical evaluations. I will take this up with Dr. Forfia at the next appointment.
So the next medical issue will be the pulmonary stress test, not sure when I'd get the results from that.
A long 'musing' post is rattling around in my head, but I'll let you digest this one first.
Thanks for checking in, Laurie
Didn't get taken back until almost 2 hours after the appointment time. Justification for buying the Kindle! Had a regular echo first.
Dr. Forfia came in with a Fellow, having already seen my echo that day as well as a review of my medical records. He asked me for my version (it may come as a surprise, but with using medical terms the history can actually be compacted into about 2 minutes), listening intently. He then gave his impression (summarized):
'Under 'normal' circumstances we would send you in for a re-do of your mechanical valve, but clearly that is not an option since, as you say and the records show, that when they replaced the valve they ran into your physiology being so abnormal and couldn't put in a larger size. Since there is no chance of a surgical revision, there is only one treatment that will fix your condition and resolve your symptoms: you need a heart transplant.'
It never gets easier to hear, but there are benefits to multiple medical evaluations and having cardiology as my specialty: not being surprised by statements like this. You already know my response: 'That's not happening.'
You don't need the blow by blow of the next 30+ minutes, although I will tell you that Dr Forfia manage to fit in at least 5 more times that 'the best treatment would be a transplant', or, as he referred to it 'we could just drop a new heart in there and be done with it.' Really? Just 'drop it in there'? Let me tell you this: no one who has ever actually HAD heart surgery will use that phrase. I totally understand that if you compare a human body to a car that the heart is comparable to the engine, so using the vernacular is appropriate. But it's my body, and it's tired and scarred and hurting from being ripped and torn apart four times (including thoracotomy) and the risk of something going wrong would be much, much higher in circumstances of multiple chest surgeries with extensive internal scar tissue formation. And now an autoimmune disorder, the treatments for which all slow healing and increase susceptibility of infection, not to mention increased stroke risk. It's just asking for trouble. I'd rather stick with the known evil than create another much larger one.
So, with transplant not an option he says that he wants to increase my diuretics and that I must lose weight. He said that very nicely, and with an immediate statement that my weight was not the main issue, but that all that could be done now would be small things that would hopefully add up to an improvement in my functioning. This makes perfect sense. I certainly have understandable reasons for having my weight increase: multiple foot fractures, menopause, prednisone and an inability to exercise, all of which he acknowledged. I also pointed out that my current diet is gluten free, no nightshades vegetarian, so it's not like I'm sucking down tons of fat and sugar. But the fact is that I'm 25 pounds heavier since the 3rd surgery, and I was supposed to lose weight then. While I can certainly justify why my weight has gone up, it doesn't change the fact that less body mass will mean less strain on my heart.
He also wants a pulmonary stress test, entailing of detailed measurements of oxygen and carbon dioxide exchange while on the treadmill. He wanted the test before making any changes, to see what my current functioning is. While that is also understandable he didn't check with the department before making that plan. Turns out they only do the test 4 times a week, and my appointment isn't until July 11th, a full month after my appointment with him.
So after all that fun, and hearing several more renditions of the 'All You Need is a Heart Transplant' song, the next day was dealing with the private insurance company. My monthly check was $381 short, with a note that I hadn't given them my Social Security paperwork. My messages to the claims manager, LV, were sickeningly sweet, along the lines of 'I'm sure there is some little mistake and it will be a simple fix'. It took four attempts over a couple days before she took my call. The paperwork issue was quickly resolved, but there was a new medical form as well.
I explained to LV that I hadn't taken the form to my regular cardiologist since I was getting another evaluation and more testing from Dr. Forfia, which would, of course, be new information backing up my claim in addition to the pulmonary rehab report. To get across the severity of my medical issues (since they continue to want proof every 2 months, and it's not going to change in that time) I told her that my heart condition was severe enough that a transplant was the only cure, but that I had refused. Her response? 'Oh, so you're just giving up then?', said in a tone of judgmental sarcasm.
I really wanted to do a repeat performance of my f*%king tirade of January, but you can't do that to the person who gives you your monthly income. Instead, my anger, frustration and terror about the whole situation bubbled to the surface and I burst into tears, which as you know is not something I like to do at all, much less for someone to witness. Through my tears, and gasping for breath every few words, I did explain the reason for my decision, pointing out that unless she had had three open heart surgeries that she had no concept of what the contemplation of a fourth heart surgery meant. At some point she seemed to realize she had crossed a line.
She seemed to take pity on me, and told me that at the 2 year mark of the disability that her company did an evaluation to see if there is ANY job that the person collecting can do, taking into account their training and education, and if there is any work than the disability payments stop. It doesn't matter that I wouldn't be able to work enough hours to earn enough to live on. It doesn't take into account the energy needed to get ready and get to a job, just if you are capable of doing something, anything. It's an insurance company: their goal is to take money in and not give it out. She as good as told me that in about 16 months this income would be over.
This is totally separate, BTW, from getting SSD, so at least there's that. Appeal still pending.
It has occurred to me that maybe I should say yes and go through the transplant evaluation process, which I'm 90% sure I wouldn't be approved for, just to put it to rest. Just get it off the damn table so I can stop having to justify my decision and have something indisputably final on all future medical evaluations. I will take this up with Dr. Forfia at the next appointment.
So the next medical issue will be the pulmonary stress test, not sure when I'd get the results from that.
A long 'musing' post is rattling around in my head, but I'll let you digest this one first.
Thanks for checking in, Laurie
posted by Laurie @ 9:20 PM
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