I am a big fan of Stephen Colbert. For those of you who don't happen to be members of The Colbert Nation, a little info on how to get to see a taping of the show. You go to www.colbertnation.com, click on "tickets" and look for available dates. Just to give you some idea, as of today there are no open dates for the next year! But they tell you to check back soon, because sometimes dates open up. Well, a few months ago I did that, and saw that February 3rd was open, and ordered two tickets.
They tell you in advance that they always overbook to ensure a full audience. On the day of the show, doors open at 5:30 pm, so people start lining up hours in advance.
When February arrived it was very cold. On the morning of the 2nd my husband said "I think we need to cancel Colbert because you can't be out in the cold." But I was determined. So I sent an e-mail in response to the ticket reminder, explaining that I have pulmonary disease and use supplemental oxygen and cannot be out in the cold. They wrote back and instructed me to arrive at 5:30 and tell the check-in person to notify security. I printed out the e-mail to take with me.
And that's what we did. They knew my name right away, acted as if they were expecting me (my husband said he felt like he was with a celebrity). We were immediately taken inside, where there was one chair in the waiting area and they invited me to sit down there. So we got in!
It was a very sweet, tall glass of lemonade. Thanks to the Audience Department at The Colbert Report, and thanks to my learning that it's okay to ask for help when you need it.
Monday, February 8, 2010
Wednesday, November 4, 2009
Two Years Later
It's been two years since I started this DIPNECH blog and now there is a small group of us. I hope you're all doing well.
It's been a challenging past few months. My pulmonologist had long been urging me to undergo workup for a lung transplant as a last resort in the event (e.g., an infection) of no other options. So I embarked on a rather grueling 4-day battery of tests. Ive still got some other peripheral things that need to be done but I'm now in the program, including attending seminars (12 per year are required) that have only further convinced me that I DO NOT wish to have a lung transplant. The five-year survival based on UNOS data is only about 50%. The Columbia program claims 60%. While my lung allocation score puts me in the range of eligible patients, we all agree that my chances of being around in 5 years remain better than that.
Interestingly, the transplant surgeon told me that my main goal should be to avoid, or at least postpone as long as possible, a lung transplant. How? Supplemental oxygen. I've long known that I'm desaturated much of the time but had resisted facing it until the cardiac catheterization showed a small increase in the pressure in the pulmonary artery. The human body is just not happy with inadequate oxygen.
So, I've been using oxygen now, even at work (I don't need it when I'm just sitting, only when I'm up walking around). It's been quite a quandry how to handle this. I've been with the same large pharmaceutical company as a biostatistician in various therapeutic areas for 17 years now, so I know a lot of people. But I spent much of that time working hard to hide my problems, and was fairly successful. How do I avoid that moment of shock when people see me with oxygen? I'm still working on that.
An incident a few days ago made me think about posting to this blog again. It was a beautiful warm fall day and I felt like a nice bowl of soup for lunch, so I put on my oxygen and headed outside to the local soup place a block away. At the corner I ran into someone who retired as a research scientist from the company more than 10 years ago and I had not seen for a long time. She was always very fashionable, and as expected her hair and makeup were perfect. My wardrobe is Eileen Fisher and LL Bean, and I take pride in owning no makeup. She was a bit taken aback by the oxygen but I reminded her that even when we had worked together I had pulmonary problems. She went on to talk about her life and as the light turned and we were about to part ways she said "well, I must say I have seen you looking prettier in the past without that thing on your face."
I wouldn't believe this if it didn't happen to me. Does she think I don't look in the mirror? Believe me, nasal cannulas will never be a fashion statement. But what's funny is that I am feeling so much better with the oxygen. I can actually get around and do things for myself without constantly feeling short of breath. In fact, until bringing the oxygen to work I had not even considered walking to Starbuck's or the soup place because it has become too difficult to handle the relatively short but uphill walk back to the building where my office is.
The good news is that I enjoyed that cup of soup. And I intend to follow the advice of the transplant surgeon and avoid letting him anywhere near my lungs!
Have any of you been worked up for lung transplantation? Are any of you needing supplemental oxygen?
I really would like to compile some data on all of us. Stay tuned. I'm still interested in the pregnancy question. One of you answered and said you had hypertension in pregnancy. Was pre-eclampsia diagnosed? That was what complicated my two pregnancies. Our first child was born at 28 weeks. The second time we made it to 36 weeks but I was in bed for nearly 4 months, the last one in the hospital. [Aside: Those two wonderful daughters have now had two successful pregnancies each. The older one had mild hypertension at 37-38 weeks and both times was induced a bit early in consideration of her family history.] I was also fascinated to read what one of you wrote about menopause. I had thought I was lucky and had breezed through with exercise and a vegetarian diet. Now I realize that Sandostatin may have been the secret to that!
Be well, and keep writing.
It's been a challenging past few months. My pulmonologist had long been urging me to undergo workup for a lung transplant as a last resort in the event (e.g., an infection) of no other options. So I embarked on a rather grueling 4-day battery of tests. Ive still got some other peripheral things that need to be done but I'm now in the program, including attending seminars (12 per year are required) that have only further convinced me that I DO NOT wish to have a lung transplant. The five-year survival based on UNOS data is only about 50%. The Columbia program claims 60%. While my lung allocation score puts me in the range of eligible patients, we all agree that my chances of being around in 5 years remain better than that.
Interestingly, the transplant surgeon told me that my main goal should be to avoid, or at least postpone as long as possible, a lung transplant. How? Supplemental oxygen. I've long known that I'm desaturated much of the time but had resisted facing it until the cardiac catheterization showed a small increase in the pressure in the pulmonary artery. The human body is just not happy with inadequate oxygen.
So, I've been using oxygen now, even at work (I don't need it when I'm just sitting, only when I'm up walking around). It's been quite a quandry how to handle this. I've been with the same large pharmaceutical company as a biostatistician in various therapeutic areas for 17 years now, so I know a lot of people. But I spent much of that time working hard to hide my problems, and was fairly successful. How do I avoid that moment of shock when people see me with oxygen? I'm still working on that.
An incident a few days ago made me think about posting to this blog again. It was a beautiful warm fall day and I felt like a nice bowl of soup for lunch, so I put on my oxygen and headed outside to the local soup place a block away. At the corner I ran into someone who retired as a research scientist from the company more than 10 years ago and I had not seen for a long time. She was always very fashionable, and as expected her hair and makeup were perfect. My wardrobe is Eileen Fisher and LL Bean, and I take pride in owning no makeup. She was a bit taken aback by the oxygen but I reminded her that even when we had worked together I had pulmonary problems. She went on to talk about her life and as the light turned and we were about to part ways she said "well, I must say I have seen you looking prettier in the past without that thing on your face."
I wouldn't believe this if it didn't happen to me. Does she think I don't look in the mirror? Believe me, nasal cannulas will never be a fashion statement. But what's funny is that I am feeling so much better with the oxygen. I can actually get around and do things for myself without constantly feeling short of breath. In fact, until bringing the oxygen to work I had not even considered walking to Starbuck's or the soup place because it has become too difficult to handle the relatively short but uphill walk back to the building where my office is.
The good news is that I enjoyed that cup of soup. And I intend to follow the advice of the transplant surgeon and avoid letting him anywhere near my lungs!
Have any of you been worked up for lung transplantation? Are any of you needing supplemental oxygen?
I really would like to compile some data on all of us. Stay tuned. I'm still interested in the pregnancy question. One of you answered and said you had hypertension in pregnancy. Was pre-eclampsia diagnosed? That was what complicated my two pregnancies. Our first child was born at 28 weeks. The second time we made it to 36 weeks but I was in bed for nearly 4 months, the last one in the hospital. [Aside: Those two wonderful daughters have now had two successful pregnancies each. The older one had mild hypertension at 37-38 weeks and both times was induced a bit early in consideration of her family history.] I was also fascinated to read what one of you wrote about menopause. I had thought I was lucky and had breezed through with exercise and a vegetarian diet. Now I realize that Sandostatin may have been the secret to that!
Be well, and keep writing.
Friday, October 12, 2007
DIPNECH
Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia - DIPNECH. If you found your way to this blog, it's probably because either you or someone you love has this rare form of chronic obstructive lung disease.
The damage associated with proliferation of neuroendocrine cells in the lungs was first discussed in a paper by Aguayo et al. published in the New England Journal of Medicine in 1992. Some years later the World Health Organization gave this entity the name DIPNECH. I scan the medical literature monthly and find occasional reports of small numbers of patients, but never any discussion of treatment.
I am a 55 year old female. My symptoms (chronic non-productive cough and dyspnea) began almost 20 years ago, but the diagnosis was made following an open lung biopsy 7 years ago. The first 13 years were spent going from pulmonologist to pulmonologist who tried to treat asthma. The open lung biopsy was finally ordered by a pulmonologist who ordered a CT scan, became alarmed, and realized what I had always known - that it was not asthma.
The bad news is that my pulmonary function has declined quite a bit over those 20 years, from an FEV1 of 50% predicted at my very first visit to a pulmonologist down to a current 15% (<.5L). The good news is that I've still got that half liter, and have continued to avoid transplantation. But I'm finding every day life an increasing struggle.
When I was first diagnosed, we contacted Dr. Aguayo and he recommended we consider treatment with a somatostatin analogue used to treat carcinoids. At that time, octreotide had to be administered via subcutaneous injection three times daily; in recent years a long-acting monthly injection became available. I was reluctant to begin this regimen for many reasons, not the least of which was that I didn't expect any miraculous results. But after toying with the idea for over 5 years, about 1.5 years ago I began taking long-acting octreotide. The treatment has alleviated symptoms somewhat (coughing less frequently), but has not improved PFTs or functional ability.
I'm starting this blog in the hopes of identifying other patients and sharing experiences. Because our numbers are still so small, DIPNECH is not likely to be the subject of formal study at this time. But there may still be something that can be learned.
The damage associated with proliferation of neuroendocrine cells in the lungs was first discussed in a paper by Aguayo et al. published in the New England Journal of Medicine in 1992. Some years later the World Health Organization gave this entity the name DIPNECH. I scan the medical literature monthly and find occasional reports of small numbers of patients, but never any discussion of treatment.
I am a 55 year old female. My symptoms (chronic non-productive cough and dyspnea) began almost 20 years ago, but the diagnosis was made following an open lung biopsy 7 years ago. The first 13 years were spent going from pulmonologist to pulmonologist who tried to treat asthma. The open lung biopsy was finally ordered by a pulmonologist who ordered a CT scan, became alarmed, and realized what I had always known - that it was not asthma.
The bad news is that my pulmonary function has declined quite a bit over those 20 years, from an FEV1 of 50% predicted at my very first visit to a pulmonologist down to a current 15% (<.5L). The good news is that I've still got that half liter, and have continued to avoid transplantation. But I'm finding every day life an increasing struggle.
When I was first diagnosed, we contacted Dr. Aguayo and he recommended we consider treatment with a somatostatin analogue used to treat carcinoids. At that time, octreotide had to be administered via subcutaneous injection three times daily; in recent years a long-acting monthly injection became available. I was reluctant to begin this regimen for many reasons, not the least of which was that I didn't expect any miraculous results. But after toying with the idea for over 5 years, about 1.5 years ago I began taking long-acting octreotide. The treatment has alleviated symptoms somewhat (coughing less frequently), but has not improved PFTs or functional ability.
I'm starting this blog in the hopes of identifying other patients and sharing experiences. Because our numbers are still so small, DIPNECH is not likely to be the subject of formal study at this time. But there may still be something that can be learned.
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