Well, I don't rightly know. Still trying to find out. At least there's no sign of multiple myeloma which is what I was at the doctor for the other day. It's being monitored because of a blood abnormality due to rheumatoid arthritis and the medications I'm taking for it. But there is no sign that either one is leading to the development of multiple myeloma, so that's good.
My rheumatologist has been trying to get me in to see a pulmonary specialist at UNM to see if there is something that can be done about my pulmonary issues -- which seem to be worsening. This is the real danger of rheumatoid arthritis if it affects the lungs as in my case. Untreated, it causes interstitial lung disease, pulmonary fibrosis, which eventually but inevitably makes it impossible to breath and you die.
I am being treated, but I'm not sure the treatment is all that effective any more, and the doctor is concerned enough to want me to see someone who is specially trained to deal with what she says is a rare enough pulmonary condition that she has no expertise in treating it.
Well, that gets us into the medical insurance bureaucracy big time. I have HMO Medicare Advantage coverage, and I'm finding out just how limited it is. I cannot have treatment outside The Network without advance approval from On High. Getting that has literally taken months of back and forth between my doctor and On High. It's almost unbelieveable what has been going on. I got approval -- however.
When I tried to get an appointment at UNM, the first available they had was in June, which my rheumatologist says is too long a wait, and I would agree as I feel worse and worse practically every day.
So she's trying to get it moved up. But who knows?
Part of the issue has been the HMO pulmonologist -- who I've seen and who has been essentially useless. He says treat the RA and the pulmonary problems will be mitigated. The rheumatologist says, no, there are specific immunosuppressant treatments for interstitial lung disease caused by RA that are not generally used to treat RA itself, and she needs a competent pulmonologist to guide those treatments.
So.
We'll see.
Showing posts with label pulmonary fibrosis. Show all posts
Showing posts with label pulmonary fibrosis. Show all posts
Saturday, March 4, 2017
Saturday, December 10, 2016
OT: Oxygen!
This is more a record-keeping post than anything else.
I took Ms Ché up to Santa Fe yesterday morning. She'd been up all night completing an assignment for one of her creative writing classes, an illustrated children's book that dealt with important issues or struggles a child might face. Her story dealt with facing and coping with loss. I thought it was sweet and naive (in a good way, it's for children after all) and compelling. But it took her all night to complete it, and I didn't want her to drive up to Santa Fe on her own. So, I got myself ready, and we headed out.
It's a lovely and peaceful drive from our place on a rarely used two-lane blacktop north through the Estancia Valley and the Galisteo Basin. 50 miles or so to the IAIA campus. Takes about an hour.
There's no snow to speak of yet, though morning temperatures have been in the teens lately. So yes, it's cold but still very nice out and the roads are safe enough. The problem Ms Ché and I recognized right off was that she's driven the road so many times that it's all but automatic for her. The road is straight and true for the first 20 miles or so, and then it swoops and dives and twists every which of a way. If one is alert, it is easy enough to negotiate but since she'd had no sleep, she said she could easily have fallen asleep while driving the road she knew so well, and that could have deadly consequences. We passed by the wreck that killed a Longmire crewman a couple of years ago on a swoopy curvy part of that same road. He'd been up all night crewing and was headed home around 4 am. It isn't certain, but it is believed that he fell asleep, ran off the road, rolled his pickup and was killed. A pair of horseshoe cross descansos on the fence of the Bar-S Ranch marks the spot where he died.
This was my first trip to Santa Fe since I got oxygen. I thought I would be fine and didn't take any with me, since the last time I'd been in Santa Fe, maybe three weeks ago, I didn't experience severe breathing difficulties. But as we started heading uphill yesterday, bam... I thought I wasn't going to make it.
Santa Fe, at 7000 ft, is about 1000 feet higher in elevation than our home. When I was a smoker, I loathed going to Santa Fe because I felt I was suffocating. After I stopped smoking 20 years ago, I no longer had that problem in Santa Fe, and I could even go up to Taos from time to time and enjoy myself.
But yesterday.... oh man. I started feeling distress as we passed Jeffrey Epstein's Zorro Ranch (yes, that Jeffrey Epstein). The Zorro Ranch marks the boundary between the Estancia Valley and the Galisteo Basin, and one goes over a ridge to get from one to the other. The ridge is probably a couple of hundred feet higher than the Valley floor.
I started feeling modest and then more and more severe chest pain, the same kind of pain that got me in to see a cardiologist. My breathing became more and more difficult, and by the time we got to the village of Galisteo, I thought for a moment I was going to pass out.
Whoa.
The rest of the way to Santa Fe, about 20 miles or so, I was in considerable distress and chest pain, and I was having a harder and harder time concentrating on the road. I was worried I would run off the road and crash. But we made it to the campus without incident. I credit that in part to the fact that I've driven the road so many times it's almost automatic, and I wasn't falling asleep. I was in distress, but the automatic pilot was still operating.
After dropping Ms Ché off, I turned around and drove back home, still on automatic pilot, and I was paying attention to whatever was going on with my breathing difficulty. The pain and distress started easing by the time I reached Galisteo, and it was almost entirely gone by the time I passed Zorro Ranch headed south.
By the time I got back home and hooked myself up to an oxygen tank, I almost felt fine.
Later, when I went back to Santa Fe to pick up Ms Ché, I took the tank with me and breathed in oxygen the whole route. No distress at all.
It was an unintended experiment. I learned that the chest pain that had triggered a cardiac alert was due to my breathing difficulty caused primarily by rheumatoid arthritis lung disease. (There are minor COPD and emphysema components). Altitude is an exacerbating factor and I am very sensitive to even minor increases in altitude, say from 6,200 to 6,500 feet.
Without supplemental oxygen, higher altitudes are now close to impossible for me. And this is a much worse situation than I've faced before. This tells me that the lung disease is not controlled and more and more of my lungs are scarred by fibrosis.
I see the pulmonologist Tuesday. We'll see what he says.
I took Ms Ché up to Santa Fe yesterday morning. She'd been up all night completing an assignment for one of her creative writing classes, an illustrated children's book that dealt with important issues or struggles a child might face. Her story dealt with facing and coping with loss. I thought it was sweet and naive (in a good way, it's for children after all) and compelling. But it took her all night to complete it, and I didn't want her to drive up to Santa Fe on her own. So, I got myself ready, and we headed out.
It's a lovely and peaceful drive from our place on a rarely used two-lane blacktop north through the Estancia Valley and the Galisteo Basin. 50 miles or so to the IAIA campus. Takes about an hour.
There's no snow to speak of yet, though morning temperatures have been in the teens lately. So yes, it's cold but still very nice out and the roads are safe enough. The problem Ms Ché and I recognized right off was that she's driven the road so many times that it's all but automatic for her. The road is straight and true for the first 20 miles or so, and then it swoops and dives and twists every which of a way. If one is alert, it is easy enough to negotiate but since she'd had no sleep, she said she could easily have fallen asleep while driving the road she knew so well, and that could have deadly consequences. We passed by the wreck that killed a Longmire crewman a couple of years ago on a swoopy curvy part of that same road. He'd been up all night crewing and was headed home around 4 am. It isn't certain, but it is believed that he fell asleep, ran off the road, rolled his pickup and was killed. A pair of horseshoe cross descansos on the fence of the Bar-S Ranch marks the spot where he died.
This was my first trip to Santa Fe since I got oxygen. I thought I would be fine and didn't take any with me, since the last time I'd been in Santa Fe, maybe three weeks ago, I didn't experience severe breathing difficulties. But as we started heading uphill yesterday, bam... I thought I wasn't going to make it.
Santa Fe, at 7000 ft, is about 1000 feet higher in elevation than our home. When I was a smoker, I loathed going to Santa Fe because I felt I was suffocating. After I stopped smoking 20 years ago, I no longer had that problem in Santa Fe, and I could even go up to Taos from time to time and enjoy myself.
But yesterday.... oh man. I started feeling distress as we passed Jeffrey Epstein's Zorro Ranch (yes, that Jeffrey Epstein). The Zorro Ranch marks the boundary between the Estancia Valley and the Galisteo Basin, and one goes over a ridge to get from one to the other. The ridge is probably a couple of hundred feet higher than the Valley floor.
I started feeling modest and then more and more severe chest pain, the same kind of pain that got me in to see a cardiologist. My breathing became more and more difficult, and by the time we got to the village of Galisteo, I thought for a moment I was going to pass out.
Whoa.
The rest of the way to Santa Fe, about 20 miles or so, I was in considerable distress and chest pain, and I was having a harder and harder time concentrating on the road. I was worried I would run off the road and crash. But we made it to the campus without incident. I credit that in part to the fact that I've driven the road so many times it's almost automatic, and I wasn't falling asleep. I was in distress, but the automatic pilot was still operating.
After dropping Ms Ché off, I turned around and drove back home, still on automatic pilot, and I was paying attention to whatever was going on with my breathing difficulty. The pain and distress started easing by the time I reached Galisteo, and it was almost entirely gone by the time I passed Zorro Ranch headed south.
By the time I got back home and hooked myself up to an oxygen tank, I almost felt fine.
Later, when I went back to Santa Fe to pick up Ms Ché, I took the tank with me and breathed in oxygen the whole route. No distress at all.
It was an unintended experiment. I learned that the chest pain that had triggered a cardiac alert was due to my breathing difficulty caused primarily by rheumatoid arthritis lung disease. (There are minor COPD and emphysema components). Altitude is an exacerbating factor and I am very sensitive to even minor increases in altitude, say from 6,200 to 6,500 feet.
Without supplemental oxygen, higher altitudes are now close to impossible for me. And this is a much worse situation than I've faced before. This tells me that the lung disease is not controlled and more and more of my lungs are scarred by fibrosis.
I see the pulmonologist Tuesday. We'll see what he says.
Thursday, November 17, 2016
OT:: The Diagnosis
The coming diagnosis, let's put it that way. My various physicians have me on a kind of diagnostic treadmill, checking off one thing after another ("Nope, not that!") and going on to the next. It took months, for example, to confirm I had rheumatoid arthritis and to come up with a treatment routine that seems to be working pretty consistently for joint pain and swelling.
They've checked me for cancer (multiple myeloma) -- so far no sign. Yay.
Now the question is what's wrong with my lung(s). Breathing problems and fatigue have been getting worse. I can feel the pressure of a "growth" in my lower right chest (this may be in the lung or it may be due to a hiatial hernia, more about which in a bit), and at times I can barely be active at all -- say walk for more than a few dozen yards, or even stand upright for more than a few minutes -- without becoming exhausted.
Hm. So what's going on? The pulmonary function test showed that everything was more or less normal, except... I had severely reduced lung capacity. I think it topped out at 38%. The pulmonologist declared confidently, "Welp, that because you have pulmonary fibrosis due to RA; your rheumatologist should treat it aggressively steroids." He added that I have emphysema, too, from smoking -- which I knew from years ago -- but that it was not severe (I think he called it "mild") and it was not a significant factor in my breathing problems.
My rheumatologist did not entirely agree. She thinks emphysema could be a bigger factor than the pulmonologist believes, and if that's so, it wouldn't be wise to treat me as if pulmonary fibrosis is the leading cause of my difficulty. She also said that if I had extensive pulmonary fibrosis due to RA, she would be obliged to treat that very differently than the treatment I've been receiving for joint pain and swelling. She didn't say how she would treat it differently, but only said she wanted me to go to the National Jewish Health in Denver for a thorough respiratory assessment and diagnosis.
I've been in contact with them and they are working out appointment availability and which department to assign me to and so forth, but truth is, I'd rather not go -- not in the middle of winter anyway. There has been no snow so far; the weather hasn't even been particularly cold here in central New Mexico, or up in Denver. But that could -- probably will -- change. They were talking about a February appt but said they'd try to get me in sooner because I'm out of state. We'll see.
Meanwhile, I had a follow up CT scan last week. The results were posted Tuesday. I'm still digesting the findings. A lot of it is written in clinical jargon some of which I don't understand, but the upshot I gather is that the radiologist who thought the signs were ambiguous in May now thinks the signs are quite clear that I have pulmonary fibrosis in my right lung, that it has spread from the lower right lobe to the mid lobe, and that it is probably though not absolutely certainly due to RA. There is some mild to moderate emphysema particularly in the upper left lobe (which is essentially the same diagnosis I received in May and what I was told when I had a scan in 2010 due to one of my periodic bouts with pneumonia.)
So I do a little research with the Goggle and discover that pulmonary fibrosis is indeed one of the possible complications of RA, that it is irreversible, and as it spreads it becomes fatal. There is no treatment, at least none that can control or reverse the progress of the disease. The only things Medical Science can do are palliative. Oxygen, for example. Or a lung transplant. Which, due to my auto-immune condition (RA), would probably not be indicated.
Alrighty then.
I'm not in a tailspin about it, and I probably won't be. When I told Ms Ché what this situation was looking like, she was momentarily stunned, and then took the tack, as she always does, that this is just another challenge sent our way, and we'll get through it. No matter what. Bless her heart.
As far as I'm concerned, que sera sera. I'm not in any particular pain, thanks to the medications I've been taking for RA. While I'm conscious that there is something happening in my chest, it doesn't hurt at all, it's merely uncomfortable sometimes when I lie down. Fatigue is a real problem and is getting worse, but I have means to cope with that. (I'm old, I take naps. OK? ;-)
So in a lot of ways I feel extremely lucky, even if I don't have much longer before shuffling off this mortal coil. According to what I've seen in my research, unconfirmed by my physicians at this point, the prognosis is that I have perhaps months, perhaps years before the fibrosis makes it impossible for me to take in oxygen from my lungs -- and I die.
Hm.
We all gotta go sometime, and in my view, passing from this plane is a part of the circle of life. It's one stage on a journey, and for all we know, it's not the last stage.
So. As things clarify, I may have somewhat more to say about The Journey.
In the meantime, be good to yourself and one another.
They've checked me for cancer (multiple myeloma) -- so far no sign. Yay.
Now the question is what's wrong with my lung(s). Breathing problems and fatigue have been getting worse. I can feel the pressure of a "growth" in my lower right chest (this may be in the lung or it may be due to a hiatial hernia, more about which in a bit), and at times I can barely be active at all -- say walk for more than a few dozen yards, or even stand upright for more than a few minutes -- without becoming exhausted.
Hm. So what's going on? The pulmonary function test showed that everything was more or less normal, except... I had severely reduced lung capacity. I think it topped out at 38%. The pulmonologist declared confidently, "Welp, that because you have pulmonary fibrosis due to RA; your rheumatologist should treat it aggressively steroids." He added that I have emphysema, too, from smoking -- which I knew from years ago -- but that it was not severe (I think he called it "mild") and it was not a significant factor in my breathing problems.
My rheumatologist did not entirely agree. She thinks emphysema could be a bigger factor than the pulmonologist believes, and if that's so, it wouldn't be wise to treat me as if pulmonary fibrosis is the leading cause of my difficulty. She also said that if I had extensive pulmonary fibrosis due to RA, she would be obliged to treat that very differently than the treatment I've been receiving for joint pain and swelling. She didn't say how she would treat it differently, but only said she wanted me to go to the National Jewish Health in Denver for a thorough respiratory assessment and diagnosis.
I've been in contact with them and they are working out appointment availability and which department to assign me to and so forth, but truth is, I'd rather not go -- not in the middle of winter anyway. There has been no snow so far; the weather hasn't even been particularly cold here in central New Mexico, or up in Denver. But that could -- probably will -- change. They were talking about a February appt but said they'd try to get me in sooner because I'm out of state. We'll see.
Meanwhile, I had a follow up CT scan last week. The results were posted Tuesday. I'm still digesting the findings. A lot of it is written in clinical jargon some of which I don't understand, but the upshot I gather is that the radiologist who thought the signs were ambiguous in May now thinks the signs are quite clear that I have pulmonary fibrosis in my right lung, that it has spread from the lower right lobe to the mid lobe, and that it is probably though not absolutely certainly due to RA. There is some mild to moderate emphysema particularly in the upper left lobe (which is essentially the same diagnosis I received in May and what I was told when I had a scan in 2010 due to one of my periodic bouts with pneumonia.)
So I do a little research with the Goggle and discover that pulmonary fibrosis is indeed one of the possible complications of RA, that it is irreversible, and as it spreads it becomes fatal. There is no treatment, at least none that can control or reverse the progress of the disease. The only things Medical Science can do are palliative. Oxygen, for example. Or a lung transplant. Which, due to my auto-immune condition (RA), would probably not be indicated.
Alrighty then.
I'm not in a tailspin about it, and I probably won't be. When I told Ms Ché what this situation was looking like, she was momentarily stunned, and then took the tack, as she always does, that this is just another challenge sent our way, and we'll get through it. No matter what. Bless her heart.
As far as I'm concerned, que sera sera. I'm not in any particular pain, thanks to the medications I've been taking for RA. While I'm conscious that there is something happening in my chest, it doesn't hurt at all, it's merely uncomfortable sometimes when I lie down. Fatigue is a real problem and is getting worse, but I have means to cope with that. (I'm old, I take naps. OK? ;-)
So in a lot of ways I feel extremely lucky, even if I don't have much longer before shuffling off this mortal coil. According to what I've seen in my research, unconfirmed by my physicians at this point, the prognosis is that I have perhaps months, perhaps years before the fibrosis makes it impossible for me to take in oxygen from my lungs -- and I die.
Hm.
We all gotta go sometime, and in my view, passing from this plane is a part of the circle of life. It's one stage on a journey, and for all we know, it's not the last stage.
So. As things clarify, I may have somewhat more to say about The Journey.
In the meantime, be good to yourself and one another.
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