I just heard from Jim out in California that he has launched a website: www.DIPNECH.com.
He's compiled some very good information, and eventually hopes to use the site to compile information about patients. This could be the beginning of forming a registry.
Please visit the site!
Monday, April 18, 2011
Monday, April 11, 2011
Facebook page
I decided it was time to enter the 21st century, and I've set up a Facebook page. Just search for "Dipnech" (Facebook won't let you use all caps for your page name), and say you "like" the page. If I get some followers I'll start posting stuff there.
Thursday, April 7, 2011
A small ray of hope?
Thanks to my pulmonologist, I've just learned of a paper published in March in the American Journal of Respiratory and Critical Care Medicine entitled "Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia: A Systematic Overview." To be frank, there's nothing much new in this paper. But what is of interest is that the authors, a group at the Mayo Clinic in Arizona, propose the establishment of a national registry for patients diagnosed with DIPNECH to enable further study with the ultimate goal of establishing treatment guidelines.
The senior author is Farouk Mookadam, MD, MSc of the Department of Medicine. His e-mail address for correspondence and reprints is mookadam.farouk@mayo.edu.
Let's all write and encourage him to work on establishing this registry!
The senior author is Farouk Mookadam, MD, MSc of the Department of Medicine. His e-mail address for correspondence and reprints is mookadam.farouk@mayo.edu.
Let's all write and encourage him to work on establishing this registry!
Wednesday, February 2, 2011
SSRIs
Hope all of you DIPNECH readers are doing well.
Even with all my lemonade, sometimes things do get the better of me. Last fall I found myself going through an especially rough period. When I burst into tears in my pulmonologist's office I knew it was time to do something about it. So I started seeing a therapist. She prescribed an anti-depressant in the class known as selective serotonin reuptake inhibitors, or SSRIs, with a brief titration up to a modest dose.
Almost immediately I started feeling increased shortness of breath. At first I thought it might just be the weather getting colder. She thought it might be a bit of anxiety that sometimes occurs in the early weeks. But a few months later, while my mood and outlook have improved, I'm still frustratingly short of breath with the least amount of exertion.
Then I remembered that my carcinoid specialist had once measured the serotonin level in my blood. I couldn't remember why, but I do recall it was within normal range. So I called him to ask. Long story short: serotonin is definitely related to carcinoid syndrome, and with the thought that DIPNECH is a precursor to full-blown carcinoids he suggested that I might be just tipping the balance enough to be causing this problem. He recommended that I stop the SSRI. I'm going to taper back off and continue the therapy without it.
I'm just wondering, has anyone else tried SSRI therapy, and what have been the results?
Even with all my lemonade, sometimes things do get the better of me. Last fall I found myself going through an especially rough period. When I burst into tears in my pulmonologist's office I knew it was time to do something about it. So I started seeing a therapist. She prescribed an anti-depressant in the class known as selective serotonin reuptake inhibitors, or SSRIs, with a brief titration up to a modest dose.
Almost immediately I started feeling increased shortness of breath. At first I thought it might just be the weather getting colder. She thought it might be a bit of anxiety that sometimes occurs in the early weeks. But a few months later, while my mood and outlook have improved, I'm still frustratingly short of breath with the least amount of exertion.
Then I remembered that my carcinoid specialist had once measured the serotonin level in my blood. I couldn't remember why, but I do recall it was within normal range. So I called him to ask. Long story short: serotonin is definitely related to carcinoid syndrome, and with the thought that DIPNECH is a precursor to full-blown carcinoids he suggested that I might be just tipping the balance enough to be causing this problem. He recommended that I stop the SSRI. I'm going to taper back off and continue the therapy without it.
I'm just wondering, has anyone else tried SSRI therapy, and what have been the results?
Thursday, March 18, 2010
The latest technology
A friend was telling me how excited he is about his new iPhone, and marvelling at the wonders of all the new technology.
I don't have an iPhone, I'm still learning all the features of my (old) BlackBerry. But how many people can say this: "Ask me about my new Portable Oxygen Concentrator....just got the smallest one on the market, the FreeStyle by Airsep."
Like all of this equipment, it has its upsides and downsides. It's great if you only need to be out for a couple of hours, it's small and light. But if you're taking it for the day, you either need to schlepp along multiple battery belts (heavy) or the power cord (also heavy). I need to spend some time figuring all of this out.
I'm thinking about a mesh backpack. This would allow the air circulation the machine itself requires, and also allow me to put all the peripherals in with it, all while distributing the weight a bit better than everything on my left shoulder.
To be continued, but meanwhile, I won't let anyone tell me I'm not up to the minute with the latest and greatest technology!
I don't have an iPhone, I'm still learning all the features of my (old) BlackBerry. But how many people can say this: "Ask me about my new Portable Oxygen Concentrator....just got the smallest one on the market, the FreeStyle by Airsep."
Like all of this equipment, it has its upsides and downsides. It's great if you only need to be out for a couple of hours, it's small and light. But if you're taking it for the day, you either need to schlepp along multiple battery belts (heavy) or the power cord (also heavy). I need to spend some time figuring all of this out.
I'm thinking about a mesh backpack. This would allow the air circulation the machine itself requires, and also allow me to put all the peripherals in with it, all while distributing the weight a bit better than everything on my left shoulder.
To be continued, but meanwhile, I won't let anyone tell me I'm not up to the minute with the latest and greatest technology!
Monday, February 8, 2010
If life gives you lemons.....
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.
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.
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.
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