Life listed chronologically

Categories

Archives

Recent Posts

  • More on the Lung

    After my bout with acute rejection I woke up to find myself in the ICU again. This was a kind of weird time for me. The medications they gave me to fight off the rejection/possible infection scrambled my brain a little. Between that and being cooped up in the ICU I was more than a bit confused. For a while I pretty much forgot I’d had the transplant.

    For the next week or so everything snapped back into place and I remembered where I was and what I was there for. But it was so strange to look back and and my thinking still makes sense. There is a condition called ICU Psychosis what is experienced by some people, and we think I had a touch of that added in. I remember having lots of really odd dreams, which I guess had me speaking out loud too. My parents and sister have all kinds of stories of me talking about too many countries and leprechauns.

    After close to a week I was moved back to step down. At this point I’d barely eaten in weeks and my weight was down 35 pounds. So the next week was gaining strength, starting to walk again (with the help of a walker). Getting used to eating again (which took some time).

    After just over a week of that I was ready to head home. I was going pretty crazy with boredom and got to leave just in time.

    So far things at home are going well. I get better at going up and down stairs every day. It’s amazing how hard even little things like that are still.

  • The Other Big Thank You

    I wanted to have this thank you be on its own. I would like to thank Emily for keeping this blog updated. I’d asked her to do it for me years ago and was glad that she was able to do it. My friends and family have all be so impressed with it. And it really helped keep information flowing.

    Thanks again Emily!

  • The Thank You Post

    There’s so many people to thank for their support with my ordeal. At the very top of the list is my family. My parents, who were there for me every single day without fail, are the best. Even while I was a bit out of my head with ICU Psychosis. My sister, who came up from Louisiana and also watched over me. It was good to have her nearby.

    Next are all the people who sent me cards and presents. I’m not even going to try and name everyone because there are just too many and I’m sure I’d forget. But at the top of the list would be Bree and Ellen.

    And finally, a big thanks to all the nurses and doctors at Brigham & Womens. They were all so amazing. Even when I felt like I must be bothering them too much they were always there for me.

  • On Breathing

    I’ve been meaning to do a lung update for ages. Since everyone keeps asking how things are going. For those of you just joining us, I have something called Idiopathic Pulmonary Fibrosis (IPF). The Pulmonary Fibrosis Foundation has a pretty decent web site on it if you want more details. But in general it means this:

    Pulmonary Fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker causing an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream.

    I’m not sure how I got it or even when exactly I started feeling the effects of it. In hindsight it was quite a bit before I saw a doctor about it. To put it bluntly, it sucks. I’m the kind of person who used to walk everywhere, go out dancing till the wee hours of the morning, and just be active all the time. These days I take things much more slowly.

    I’ve tried various treatments and none of them seem to have done much, except maybe stabilize my condition. I haven’t gotten any better or worse in a few years. So, the current step is waiting for a new lung. So, not much has changed. I’m definitely towards the ‘top of the list’, but that is all due to change when some new regulations go into effect that will make them order the list by ‘need’ in another month. Bah.

    So I’m now opening this up for any questions you may have about it all. Ask away, I’ll do my best to answer.

  • More Hope For IPF Patients

    More hopeful news in the fight against IPF:

    Anticancer Drug to Fight Fatal Lung Disease,…
    Anticancer Drug to Fight Fatal Lung Disease, Idiopathic Pulmonary Fibrosis [via Blogdigger Search: Pulmonary Fibrosis]

    I’m really glad to see more coverage of IPF online and in the news. IPF is one of those conditions that so many people have never heard of, and is a pretty hellish thing to have.

  • Pulmonary Fibrosis and Interferon

    I hadn’t heard about this article until just now so thought I’d share it. My doctor did not recommend that I try this treatment as he felt that the variety of IPF I had wouldn’t be helped by it, but I know of a lot of people who were really happy with the results they had on it. So I am kind of surprised at this report. At least there seems to be hope that it will help people with mild to moderate symptoms.

    Interferon a No-Go for Pulmonary Fibrosis

    WEDNESDAY, Jan. 7 (HealthDayNews) — A once hopeful treatment for pulmonary fibrosis, a fatal disease of the lungs, appears to have little or no effect on progression of the disease or on quality of life, a new study has found.

    There remains some optimism, however, that the treatment, interferon gamma-1b, might benefit patients with mild to moderate symptoms of the disease. The authors of the study, which appears in the Jan. 8 issue of the New England Journal of Medicine, are launching a new trial to test this hypothesis.

    The median survival time for patients diagnosed with pulmonary fibrosis is only two to three years. The disease results in a scarring of the lungs that eventually prevents the lungs from fulfilling their primary mission of delivering oxygen to the body. The only effective treatment is lung transplantation, although many people are treated with anti-inflammatory and immunosuppressive drugs, both of which have side effects… [www.medicinenet.com]

    As for me, I’m just waiting for a lung to come up for me on the transplant list and wondering why this article just popped into my aggregator now if the article is from January.

  • More Developments in the Study of Pulmonary Fibrosis

    This one actually didn’t seem too surprising to me, but it is cool that they were able to find the connection.

    New Light Shed on Deadly Lung Disease

    TUESDAY, Aug. 3 (HealthDayNews) — New research holds out hope for people suffering from pulmonary fibrosis, a deadly lung disease, by discovering that cells that travel to the organ to repair damage end up doing more harm than good.

    The study found these biological repairmen, which experts had thought originally resided in the lungs, were actually adult stem cells that migrated there from the patient’s bone marrow — and this migration can be halted.

    …

    “It’s certainly very exciting research, but the information is obviously very preliminary,” said Dr. Alfred Munzer, a lung specialist from Maryland and past president of the American Lung Association. “We have to see what meaning it holds.”

    Pulmonary fibrosis is a chronic and often fatal disorder that is characterized by extra scar tissue in the lungs. The disease, which affects some 80,000 individuals in the United States, has traditionally been treated with steroids and other immunosuppressive therapies, but with little effect. About 70 percent of people die within five years of diagnosis. “At the moment, there is no effective treatment for pulmonary disease, and it is not that uncommon a disease,” Munzer said. [medicinenet.com]

    What I think about this is that it gives me hope for people who get IPF in the future. I’m already well on my way to getting a new lung, but that honestly isn’t my first choice. And it isn’t something available to all people. In many ways I’m very lucky in that I haven’t gotten worse in well over a year (*knocks on wood*).

  • More Pulmonary Fibrosis News

    Here’s an interesting article from a few days ago:

    Adult Stem Cells Migrate to Lung, Contribute to Pulmonary Fibrosis

    09 Aug 2004

    UCLA researchers for the first time identified and then stopped a type of adult stem cell from migrating to the lung and contributing to pulmonary fibrosis in an animal model. Pulmonary fibrosis (i.e, idiopathic pulmonary fibrosis) in humans is a devastating terminal disorder that causes an overabundance of scar tissue to form in the lung.

    IMPACT: The new study may offer novel therapies to treat idiopathic pulmonary fibrosis– currently there are no effective treatments and the mortality rate is approximately 70 percent within five years of diagnosis. Over 80,000 individuals in the United States suffer from the disease. [medicalnewstoday.com]

  • The Need For Patient Education

    One thing that amazes me is how much information is available on medical conditions and how few people ever find it. Hopefully things like this can help with that.

    Coalition for Pulmonary Fibrosis Announces Publication of New Educational Tools for Patients

    Preliminary Results From Latest Research Initiative Demonstrate Need for Lung
    Transplant and Pulmonary Rehabilitation Education for IPF Patients and
    Caregivers

    SAN JOSE, Calif., Sept. 17 /PRNewswire/ — The Coalition for Pulmonary
    Fibrosis     (CPF) announced today the publication of two new educational
    brochures: ‘Lung Transplantation: What Every Patient with Idiopathic
    Pulmonary Fibrosis Should Know’ and ‘Oxygen Management and Pulmonary
    Rehabilitation for the IPF Patient’.

    The two brochures were created for patients, family members and physicians
    alike based on preliminary results of the CPF’s Basic Research Questionnaire,
    an education initiative launched last year to better understand the impact of
    idiopathic pulmonary fibrosis (IPF) on patients and families, and to help the
    foundation grasp the educational needs that arise for those fighting the
    disease.

    To date, the CPF has received more than 1,400 responses to this
    ground-breaking survey, and based on educational gaps identified by patients,
    discovered the need for improved education and awareness on two very important
    topics for IPF patients; lung transplantation and pulmonary rehabilitation.

    Interim results of the CPF’s research questionnaire found that among
    current patients, 30 percent responded that their physician has not discussed,
    or even mentioned the topic of lung transplantation, a potential treatment
    option for IPF patients under 65. Of those patients under the age of 60,
    fewer than half (47 percent) said they have been advised to seek a lung
    transplant. Additional data from a Duke University study also indicates that
    more than 50 percent of those with IPF who are on transplant lists will pass
    away before a donor lung becomes available. [via Feedster Search: Pulmonary Fibrosis]

    This also makes me very thankful that I found the doctors I did as I went through my diagnosis. I was quickly forwarded to a pulmonary specialist and he was able to give me a preliminary diagnosis almost immediately. Once it was confirmed that I did actually have Pulmonary Fibrosis we sat down and talked about what it all means, what treatments were available, how things tended to progress, what it meant long term, the whole thing. I still find it kind of stunning that other people have not had this same experience.

  • Possible New Treatments for Pulmonary Fibrosis

    I’ve started hunting for news items to do with Pulmonary Fibrosis in my news reader, so will be making note of interesting developments that I find.

    Treatment for pulmonary fibrosis may be achieved by blocking cell death in the lung

    A research team at Yale has found that blocking a kind of cell death called apoptosis in fibrotic diseases of the lung, also blocks the fibrosis, opening new ways of looking at treatment for lung diseases such as pulmonary fibrosis. [via Feedster Search: Pulmonary Fibrosis]