Jan 31: What I haven't been telling you....
I've been putting off telling you guys something, but it's time to get it out there. Just to warn you: this is going to be a long one, and you must read to the end. Really: don't start unless you have the time to read the whole posting.
I'd been having more DOE (dyspnea on exertion, or shortness of breath when doing things) and fatigue since earlier in the year, once the Sjogren's was diagnosed I figured the auto-immune thing had been brewing before the scleritis and then there's all the damn medication, including the hated prednisone, for that. In October I saw my cardiologist, Dr. C, for a routine visit, but also to tell him of my decision to stop working and pursue disability. He wasn't surprised, and pointed out that my last two echoes had been very good, meaning that he wouldn't have as much to substantiate a cardiac reason for stopping work. (Apparently 3 open heart surgeries and a thoracotomy don't justify it....Even with only working part-time hours for the last 7 1/2 years.) I asked for a stress echo, again pointing out that my symptoms have never been that bad at rest, but worsen markedly with exertion. He agreed, and it had been about 18 months since my last one, with the prior cardiologist.
I had the test Friday, October 19, and was stunned at how poor my exercise tolerance was, how incredibly out of breath I became by one minute of walking, and then how many PVCs I started having, increasing in frequency and lots of couplets. I couldn't even walk for 5 minutes. While I haven't been as active since the Sjogren's I knew it was more than that. I got a copy of the test on the following Monday, so I knew the results before Dr. C called me that Tuesday. His shock was evident.
The echo was bad. Really, really bad. The two issues were the gradient and the size of the valve opening. Gradient is the measurement of flow pressure across the valve. When the valve is open the pressure should be the same on both sides (atria and ventricle), as well as no increase in pressure of blood flowing through the valve. Normal is 0: there is no pressure difference between the upper and lower chamber, no pressure across the valve. With a mechanical valve the number can be as high as 3 and still be considered normal, because there can be a restriction of blood flow. Because of the very small size of my valve, due to my abnormal anatomy, coming out of the last surgery my gradient was 7-8. That number, taken at rest, meant I would always be fatigued and get DOE more easily, as that number would never improve due to the size of the opening. (Think about a traffic bottleneck scenario, where there is a decrease in flow through the narrowed part and traffic backs up.) A normal mitral valve opening is about 4-5 cm2. People function pretty well with a 3 cm2 opening. But, despite his best attempts, the largest size Dr. Cohn (surgeon from Brigham) could put into me was 2.3 cm2 valve. The echo done 18 months ago showed an opening of 1.8 cm2, no one even mentioned it, probably thought it was just the angle of the pictures. But the reading in October showed a functional size of 1 cm2: critically small. And the resting gradient was 13, virtually double the initial 7-8.
'How can this be?' I asked. 'I don't know' was his reply, followed by 'You need to see our cardiac surgeon. You're going to need another heart surgery....'
I'm glad that I'd seen the report the day before, had a chance to digest it, even if I didn't understand how it happened. Mechanical valves don't develop scar tissue on them: that's the reason, along with my age, that it was used on me. That was the benefit that overwhelmed the negative of being on Coumadin the rest of my life. Yet, somehow, my overachieving scar tissue was winning again. As stunned as I was, my response to the cardiologist was immediate.
'Let me be clear about what is NOT going to happen. I am not, under any circumstances, by any surgeon, having a FOURTH open heart surgery. It's not going to happen.'
'But, you won't live....'
'I know. But I've been through enough. At some point there has to be an end. I only got through the third surgery because I kept telling myself it was the last one, and that it was going to be good for decades to come. I'm not going through it again. I know it means I will die, and I accept that. I'd rather end my days being able to function than risk a stroke or bad outcome that keeps me alive longer but unable to take care of myself, or have to deal with more horrific pain. And the apparent inevitability that the scar tissue will re-form after any surgery.'
Silence.
'Will you at least talk to the surgeon, see what he has to say?' asked Dr. C. 'He was very involved with designing the TAVR (replacing the aortic valve like a cardiac cath, without heart surgery); he might know of some non-invasive treatments. At least talk to him.'
'Yes', I replied, 'I will see him, listen to what he has to say. If there is a non-invasive way of correcting this, then that's another issue. If there is a non-surgical way to cut back the scar tissue without having my chest cracked open a fourth time and my heart stopped for a sixth time, then I'll certainly consider that. But let me be crystal clear: there will be no fourth open-heart surgery, there will be no heart transplant, there will be no heroic measures. I'm done. I am NOT going to put myself through it again. Enough is enough.'
I told no one. No one. I put it out of my mind as much as possible, dealt with leaving my job. 'Maybe you'll get better and be able to work again!' several people said to me. 'You'll still be a PA, you might find something else to do!' I smiled and said 'Maybe.' It made leaving even worse, because I knew it was the last time I was going to take care of patients, do my last stress test. I knew, although no one else did, that it was the end, permanently. I also got some of the 'this is the beginning of a whole new chapter for you!'--yeah, in a short story. This was the start of the final chapter.
That first week after I stopped working involved filling out a lot of forms. On the SSD form is a spot to list someone besides your doctors who knows all about your illness. I checked off the box that said 'There is no one to contact....' or words to that effect. A flag came up and informed me that, in essence, someone had to be listed. After much thought and consideration I called my friends Michael & Jenn and said there was something important I needed to discuss with them. So after two and a half weeks of keeping my secret I told them everything. They were, in one inadequate word, wonderful.
There was no rush to see the surgeon, I reasoned, because there wasn't going to be another surgery. It took a couple weeks before they called, the appointment was two days before Thanksgiving. Two cardiac surgeons came into the room, is that usual? Dr G, who I so wish had done the first surgery instead of the horrid Dr H at Presbyterian, was much nicer than his reputation. There was universal agreement that it must be scar tissue, he said that they were seeing some patients with mechanical valves 25-30 years out with scar tissue developing on the ring that the valve is sewed in with, but that he'd never seen it in someone only 6 years out. I informed him that my heart did what no one else's did, and I had the surgical reports to prove it. He launched into two different plans: one rebuilding my mitral valve in the atria, the other bypassing it with a tube outside the heart muscle. He was impressive.
I let him finish, and then asked 'And what are you going to do to keep the scar tissue from forming and ruining either one of those plans? What are you going to do so that we aren't having this same discussion in another 5-6 years and you tell me I need a fifth heart surgery? What can you do to make it work this time, when the same problem lead to a second and third surgery? What are you going to do differently that gives another surgery a better outcome?'
Silence. Which I respected, because I already knew the answer.
'I don't know', he replied slowly. 'There probably isn't anything to do about it.'
'And that', I said rather triumphantly, 'is why I'm NOT having a fourth f'ing heart surgery.'
Silence. This isn't the usual response to being told of needing a life saving surgery.
'Will you at least have the tests?', he asked, 'At least get another cath and TEE, also a CT angiogram? Try and see what's going on in there?'
'Absolutely', I replied. 'And, by the way, when do you suggest my going to Cleveland?' He wasn't thrilled with that question, but that's where cutting edge is done.
The CT wasn't a big deal. But I needed help for the TEE & cath because of the anesthesia. I told two of my local friends, Holly & Marina. We have a sort of small support group for single female homeowners. Jenn was coming with me for the procedure, but it didn't seem fair to then ask her to sleep over. And if something happened I needed someone local who knew what was going on. Again, I told the right people, and their response was 'What can we do to help?'
I made all the arrangements before the cath & TEE, just in case. Re-did the will. Medical POA to Jenn & Michael. Typed out instructions. And, when alone, cried.
Total disbelief. Anger. Terror. Resentment. Grief. Horror. More anger. And, believe it or not, a certain sense of relief in one area. I've been so worried about money lasting another 15-20 years, but no problem if I'm going to be dead in only two years! That means I can start tapping into the retirement funds, because the fees don't matter if I won't be alive after another couple years. See, there's ALWAYS a silver lining!
I won't get into the procedures. They weren't bad. The worst part was having to come off the Coumadin and inject myself with the Lovenox twice a day for several days before and after. Impressive bruising, and the shots were surprisingly painful.
It was sad, going through the holidays, wondering if there was only one year left, or if I'd still be functioning in two years. I didn't want anyone else thinking this way, didn't want anyone else to have to deal with my pain. I wanted to live as normally as possible for as long as possible, and only tell more people when absolutely necessary.
My follow-up appointment with the surgeon was Jan 13. Jenn was going to come, but had her own specialty appointment that day. Holly was coming to take notes, because I was willing to admit that there were things I didn't want to forget to ask, or not remember the answers. And, quite frankly, I wanted someone else driving in case I broke down. Dr G's office called me about 4 hours before the scheduled time and told me he had to cancel. They offered me an appointment on the 24th.
For the first time in the ten years I've been dealing with this I totally lost it on a staff person. I remember using the f-word several times, including that I was not discussing my f-king fourth heart surgery on my f-king birthday, that it had been four weeks since my tests and no one had called me with any results (remember, I lost the ability to access the system when I stopped working, and certainly wasn't asking anyone at my old office to get them) and that someone had better have the f-king courtesy to tell me what was going on NOW.
Gotta tell you: I don't think I've done an f-ing meltdown like that since my paramedic days. It felt pretty good, except lost some of the oomph with pausing to catch my breath frequently. The nice lady told me that Dr. G would call me within the hour. He did.
The results were, to put it in an understated word, surprising. Dr. G informed me that my valve is working 'perfectly'. There was good visualization, no sign of any scar tissue. Then why did the echo look so bad? 'Don't know!' he said, 'But you don't need surgery!'
That being said, all is not perfect. My symptoms are more than justified because all the resting pressures in my lungs and heart are elevated at rest. This means that with any exertion they increase. The cardiac cath gradient, which is more accurate than the echo, is 15--not good. This is why I get so tired and DOE. No one so far has any explanation as to why the stress echo looked so much worse in regards to the size of the opening. But it looks like I'm not dying in the next couple years. When? Who knows? There's no question my heart & lungs are operating under more strain than they should, and this will not improve over time. My personal thought is another 15 years or so--let's face it, I'm not gonna die of old age. But I'm not talking myself into anything. Who knows? They may have a non-invasive approach in another few years that would extend my life without surgery.
My sense of relief is actually not as much as you might expect, because it never seemed real to me. The sense of disbelief was understandable, but it seemed to numb me enough that it never sunk in, it wasn't reality. There was just no way I could wrap my head around dying in 18-24 months. The whole thing was, and is, just so unbelievable. I still feel kinda numb.
Of one thing I am sure: I am so very, very, very glad that I told so few people. While some people did get added on over the three months this was playing out less than ten people who knew, not including my multitude of physicians.
I have appointments next week with the surgeon, who says he may be able to do something about my sternal non-union, and with my cardiologist. Now that the initial relief has worn off there will be stern words to both of them regarding no one calling me with the results, giving me an additional four weeks of having a pending death sentence hanging over me. That's not right.
Here's the final coup de grace: today I got my SSD decision. Based on a review of my health problems I "do not qualify for benefits at this time. This is because you are not disabled under our rules....You have some limitation in your activities....it appears your condition will improve so that it will not be disabling for 12 months (or more)." Gotta love the government. Yes, of course, I will be appealing. Apparently everyone gets turned down the first time.
While I know this was a long and difficult posting to read, please remember that it played out over three months and wasn't much fun to live through. There was no way to tell you about the journey without a certain amount of detail, and this is with leaving out a LOT of stuff. In my defense, there has been as much, if not more, detail in my positive postings. Bitter with the better and all that.
Looking forward to the comments! Thanks for checking in, Laurie
I'd been having more DOE (dyspnea on exertion, or shortness of breath when doing things) and fatigue since earlier in the year, once the Sjogren's was diagnosed I figured the auto-immune thing had been brewing before the scleritis and then there's all the damn medication, including the hated prednisone, for that. In October I saw my cardiologist, Dr. C, for a routine visit, but also to tell him of my decision to stop working and pursue disability. He wasn't surprised, and pointed out that my last two echoes had been very good, meaning that he wouldn't have as much to substantiate a cardiac reason for stopping work. (Apparently 3 open heart surgeries and a thoracotomy don't justify it....Even with only working part-time hours for the last 7 1/2 years.) I asked for a stress echo, again pointing out that my symptoms have never been that bad at rest, but worsen markedly with exertion. He agreed, and it had been about 18 months since my last one, with the prior cardiologist.
I had the test Friday, October 19, and was stunned at how poor my exercise tolerance was, how incredibly out of breath I became by one minute of walking, and then how many PVCs I started having, increasing in frequency and lots of couplets. I couldn't even walk for 5 minutes. While I haven't been as active since the Sjogren's I knew it was more than that. I got a copy of the test on the following Monday, so I knew the results before Dr. C called me that Tuesday. His shock was evident.
The echo was bad. Really, really bad. The two issues were the gradient and the size of the valve opening. Gradient is the measurement of flow pressure across the valve. When the valve is open the pressure should be the same on both sides (atria and ventricle), as well as no increase in pressure of blood flowing through the valve. Normal is 0: there is no pressure difference between the upper and lower chamber, no pressure across the valve. With a mechanical valve the number can be as high as 3 and still be considered normal, because there can be a restriction of blood flow. Because of the very small size of my valve, due to my abnormal anatomy, coming out of the last surgery my gradient was 7-8. That number, taken at rest, meant I would always be fatigued and get DOE more easily, as that number would never improve due to the size of the opening. (Think about a traffic bottleneck scenario, where there is a decrease in flow through the narrowed part and traffic backs up.) A normal mitral valve opening is about 4-5 cm2. People function pretty well with a 3 cm2 opening. But, despite his best attempts, the largest size Dr. Cohn (surgeon from Brigham) could put into me was 2.3 cm2 valve. The echo done 18 months ago showed an opening of 1.8 cm2, no one even mentioned it, probably thought it was just the angle of the pictures. But the reading in October showed a functional size of 1 cm2: critically small. And the resting gradient was 13, virtually double the initial 7-8.
'How can this be?' I asked. 'I don't know' was his reply, followed by 'You need to see our cardiac surgeon. You're going to need another heart surgery....'
I'm glad that I'd seen the report the day before, had a chance to digest it, even if I didn't understand how it happened. Mechanical valves don't develop scar tissue on them: that's the reason, along with my age, that it was used on me. That was the benefit that overwhelmed the negative of being on Coumadin the rest of my life. Yet, somehow, my overachieving scar tissue was winning again. As stunned as I was, my response to the cardiologist was immediate.
'Let me be clear about what is NOT going to happen. I am not, under any circumstances, by any surgeon, having a FOURTH open heart surgery. It's not going to happen.'
'But, you won't live....'
'I know. But I've been through enough. At some point there has to be an end. I only got through the third surgery because I kept telling myself it was the last one, and that it was going to be good for decades to come. I'm not going through it again. I know it means I will die, and I accept that. I'd rather end my days being able to function than risk a stroke or bad outcome that keeps me alive longer but unable to take care of myself, or have to deal with more horrific pain. And the apparent inevitability that the scar tissue will re-form after any surgery.'
Silence.
'Will you at least talk to the surgeon, see what he has to say?' asked Dr. C. 'He was very involved with designing the TAVR (replacing the aortic valve like a cardiac cath, without heart surgery); he might know of some non-invasive treatments. At least talk to him.'
'Yes', I replied, 'I will see him, listen to what he has to say. If there is a non-invasive way of correcting this, then that's another issue. If there is a non-surgical way to cut back the scar tissue without having my chest cracked open a fourth time and my heart stopped for a sixth time, then I'll certainly consider that. But let me be crystal clear: there will be no fourth open-heart surgery, there will be no heart transplant, there will be no heroic measures. I'm done. I am NOT going to put myself through it again. Enough is enough.'
I told no one. No one. I put it out of my mind as much as possible, dealt with leaving my job. 'Maybe you'll get better and be able to work again!' several people said to me. 'You'll still be a PA, you might find something else to do!' I smiled and said 'Maybe.' It made leaving even worse, because I knew it was the last time I was going to take care of patients, do my last stress test. I knew, although no one else did, that it was the end, permanently. I also got some of the 'this is the beginning of a whole new chapter for you!'--yeah, in a short story. This was the start of the final chapter.
That first week after I stopped working involved filling out a lot of forms. On the SSD form is a spot to list someone besides your doctors who knows all about your illness. I checked off the box that said 'There is no one to contact....' or words to that effect. A flag came up and informed me that, in essence, someone had to be listed. After much thought and consideration I called my friends Michael & Jenn and said there was something important I needed to discuss with them. So after two and a half weeks of keeping my secret I told them everything. They were, in one inadequate word, wonderful.
There was no rush to see the surgeon, I reasoned, because there wasn't going to be another surgery. It took a couple weeks before they called, the appointment was two days before Thanksgiving. Two cardiac surgeons came into the room, is that usual? Dr G, who I so wish had done the first surgery instead of the horrid Dr H at Presbyterian, was much nicer than his reputation. There was universal agreement that it must be scar tissue, he said that they were seeing some patients with mechanical valves 25-30 years out with scar tissue developing on the ring that the valve is sewed in with, but that he'd never seen it in someone only 6 years out. I informed him that my heart did what no one else's did, and I had the surgical reports to prove it. He launched into two different plans: one rebuilding my mitral valve in the atria, the other bypassing it with a tube outside the heart muscle. He was impressive.
I let him finish, and then asked 'And what are you going to do to keep the scar tissue from forming and ruining either one of those plans? What are you going to do so that we aren't having this same discussion in another 5-6 years and you tell me I need a fifth heart surgery? What can you do to make it work this time, when the same problem lead to a second and third surgery? What are you going to do differently that gives another surgery a better outcome?'
Silence. Which I respected, because I already knew the answer.
'I don't know', he replied slowly. 'There probably isn't anything to do about it.'
'And that', I said rather triumphantly, 'is why I'm NOT having a fourth f'ing heart surgery.'
Silence. This isn't the usual response to being told of needing a life saving surgery.
'Will you at least have the tests?', he asked, 'At least get another cath and TEE, also a CT angiogram? Try and see what's going on in there?'
'Absolutely', I replied. 'And, by the way, when do you suggest my going to Cleveland?' He wasn't thrilled with that question, but that's where cutting edge is done.
The CT wasn't a big deal. But I needed help for the TEE & cath because of the anesthesia. I told two of my local friends, Holly & Marina. We have a sort of small support group for single female homeowners. Jenn was coming with me for the procedure, but it didn't seem fair to then ask her to sleep over. And if something happened I needed someone local who knew what was going on. Again, I told the right people, and their response was 'What can we do to help?'
I made all the arrangements before the cath & TEE, just in case. Re-did the will. Medical POA to Jenn & Michael. Typed out instructions. And, when alone, cried.
Total disbelief. Anger. Terror. Resentment. Grief. Horror. More anger. And, believe it or not, a certain sense of relief in one area. I've been so worried about money lasting another 15-20 years, but no problem if I'm going to be dead in only two years! That means I can start tapping into the retirement funds, because the fees don't matter if I won't be alive after another couple years. See, there's ALWAYS a silver lining!
I won't get into the procedures. They weren't bad. The worst part was having to come off the Coumadin and inject myself with the Lovenox twice a day for several days before and after. Impressive bruising, and the shots were surprisingly painful.
It was sad, going through the holidays, wondering if there was only one year left, or if I'd still be functioning in two years. I didn't want anyone else thinking this way, didn't want anyone else to have to deal with my pain. I wanted to live as normally as possible for as long as possible, and only tell more people when absolutely necessary.
My follow-up appointment with the surgeon was Jan 13. Jenn was going to come, but had her own specialty appointment that day. Holly was coming to take notes, because I was willing to admit that there were things I didn't want to forget to ask, or not remember the answers. And, quite frankly, I wanted someone else driving in case I broke down. Dr G's office called me about 4 hours before the scheduled time and told me he had to cancel. They offered me an appointment on the 24th.
For the first time in the ten years I've been dealing with this I totally lost it on a staff person. I remember using the f-word several times, including that I was not discussing my f-king fourth heart surgery on my f-king birthday, that it had been four weeks since my tests and no one had called me with any results (remember, I lost the ability to access the system when I stopped working, and certainly wasn't asking anyone at my old office to get them) and that someone had better have the f-king courtesy to tell me what was going on NOW.
Gotta tell you: I don't think I've done an f-ing meltdown like that since my paramedic days. It felt pretty good, except lost some of the oomph with pausing to catch my breath frequently. The nice lady told me that Dr. G would call me within the hour. He did.
The results were, to put it in an understated word, surprising. Dr. G informed me that my valve is working 'perfectly'. There was good visualization, no sign of any scar tissue. Then why did the echo look so bad? 'Don't know!' he said, 'But you don't need surgery!'
That being said, all is not perfect. My symptoms are more than justified because all the resting pressures in my lungs and heart are elevated at rest. This means that with any exertion they increase. The cardiac cath gradient, which is more accurate than the echo, is 15--not good. This is why I get so tired and DOE. No one so far has any explanation as to why the stress echo looked so much worse in regards to the size of the opening. But it looks like I'm not dying in the next couple years. When? Who knows? There's no question my heart & lungs are operating under more strain than they should, and this will not improve over time. My personal thought is another 15 years or so--let's face it, I'm not gonna die of old age. But I'm not talking myself into anything. Who knows? They may have a non-invasive approach in another few years that would extend my life without surgery.
My sense of relief is actually not as much as you might expect, because it never seemed real to me. The sense of disbelief was understandable, but it seemed to numb me enough that it never sunk in, it wasn't reality. There was just no way I could wrap my head around dying in 18-24 months. The whole thing was, and is, just so unbelievable. I still feel kinda numb.
Of one thing I am sure: I am so very, very, very glad that I told so few people. While some people did get added on over the three months this was playing out less than ten people who knew, not including my multitude of physicians.
I have appointments next week with the surgeon, who says he may be able to do something about my sternal non-union, and with my cardiologist. Now that the initial relief has worn off there will be stern words to both of them regarding no one calling me with the results, giving me an additional four weeks of having a pending death sentence hanging over me. That's not right.
Here's the final coup de grace: today I got my SSD decision. Based on a review of my health problems I "do not qualify for benefits at this time. This is because you are not disabled under our rules....You have some limitation in your activities....it appears your condition will improve so that it will not be disabling for 12 months (or more)." Gotta love the government. Yes, of course, I will be appealing. Apparently everyone gets turned down the first time.
While I know this was a long and difficult posting to read, please remember that it played out over three months and wasn't much fun to live through. There was no way to tell you about the journey without a certain amount of detail, and this is with leaving out a LOT of stuff. In my defense, there has been as much, if not more, detail in my positive postings. Bitter with the better and all that.
Looking forward to the comments! Thanks for checking in, Laurie
posted by Laurie @ 11:46 PM
2 comments
