i touched base with eleanor today and they are remaining positive, while trying to stay realistic. greg has been having a rough time but has been holding his own and the family and doctors are happy about that.

the big challenge has been getting his heart into a good sustainable rhythm. they're using cardioversion techniques, including shocking his heart, to get his heart into a normal pattern. the ventricular specialist says that the right side of his heart has enlarged and is causing this to be not as succesful as they had hoped.

he's still on the ECMO to facilitate blood oxygenation, but they're working to reduce his use of it since prolonged use is not ideal. today they did an echocardiogram and reduced some of his meds successfully, but didin't keep the ECMO machine notched down for long since they want to make sure his heart can handle it. even with the ECMO, he's only able to use his lungs to about 30% of their capacity, so they need to get that up.

they are becoming concerned about neurlogical issues, but need to really assess greg when he's not as medicated. he can sometimes follow simple requests, but sometimes is not aware of reality.

he's been stable enough today that they've planned a trip back to CT to take care of some odds and ends and will continue to take shifts at the hospital.

greg's big goal is to get off the ECMO and get his lungs working at a higher capacity so that that they can concentrate on normalizing his heart rhythm without the cardioversion. focus your postive energy and prayers to this goal. the more positive energy people can send the better. do it how ever it works for you... light a candle, say a prayer, take some photos you have of greg and put them somewhere where you can smile at him every day/hour to send your love for him his way.

stay strong greg. you can do it.

I've kept fairly quite about this for no real good reason, but I'm having surgery on Thursday. I've had issues with acid reflux for years and years now and my lung doctors are concerned that it could cause complications with my new lung as time goes on (there's even some speculation that it could have been a factor in my IPF, but that's for another time). So Thursday I get to go into the hospital and get my esophagus tied off. This will prevent any acid from working its way up from my stomach. Though it isn't tied off tight enough that food can't get down.

They say I'll be in the hospital for four to five days. So my stay won't even be that long. I hope to have my laptop with me to make it all the more bearable. If you want to come visit I'll be posting updates on that too so check here for more information.

I get to eat tonight and then I'm on clear liquids till my surgery. Including having to drink a gallon of stuff to clean me out. I'm oh so thrilled for that. Wish me luck!

Time for a bit of a health update. I'm coming up on my one year birthday on April 14th. Just to keep me from going too nuts celebrating, I'm going to be having stomach surgery sometime soon. The doctors think that I have continuing issues with acid reflux and are going to tie off my esophagus in my stomach. When they tie it off, it prevents the acid from coming back up. Though it doesn't keep food from going in (though at first I'll be limited to soft foods). While they are in there they will also open up the base of my stomach to help food flow a little bit better.

I'm actually not that nervous about it. Maybe having surgery as major as a transplant makes one a little jaded. I was more bothered by the other options. One was do nothing and hope for the best, no reason to tempt fate there. The other was one where I'd have a drainage tube from my stomach and a feeding tube into my intestines. With an added bonus of just not eating food.

No word on when exactly it will be, but I'm having a handful of tests next week in preparation for it. Including my favorite test, an endoscopy.

It will all be worth it though. The reflux is something that may have been the source of a bunch of health issues, including possibly my initial lung problems. I'll still probably never know for sure, but just having a possible cause is kinda nice. And I'd rather the reflux not cause issues with my new lung.

There are lots of fun side effects to getting an organ transplant. Most of these come from the various drugs you are on after the transplant. You get things that cut down your immune system, lots of steroids, etc. One of the more fun side effects is that you can lose bone density. I get treatments to help it, but I can only assume that this is at least part of the reason why I've had two teeth have hunks that have broken off in the last six months. I already feel fanatical about brushing, sheesh.

Today it happened while eating a tuna fish sandwhich, I wasn't even eating anything hard. Time for a trip to the dentist.

Coming up soon is the six month anniversary of my lung transplant (Oct. 14th). I'm trying to figure out just what I should do for this. Maybe some kind of get-together that weekend or maybe something this weekend. I definitely want to do something. Leaves look like they've got another few weeks so I'm putting that on hold. Maybe a fall BBQ? A nocturnal party with some music? Anyone up for actually coming down?

I've been feeling really good lately. So I'm up for something fun.

Just now I made it up the stairs from the first to the second floor without using my cane. I never thought I'd be so excited by stairs. The lung is working great still, every bit of exercise makes me feel a bit stronger. My next goal is to be able to walk around the block by the end of the month.

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.

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.

Just the text of this clip alone is bound to give me some good search traffic.

Japanese men's sperm comes in 2 types
Japanese men's sperm concentration changes seasonally and is categorized in two types according to the season when it becomes more concentrated, research jointly conducted by two universities revealed. [via Medical News Today]

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*).

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]

Jon Udell has a great post on Medbloggers, something that I didn't really realize existed until he wrote about it. Though we've got political bloggers, library bloggers, law bloggers, so it makes sense there would be medical bloggers.

Medbloggers

...

The numbers are small. Starting with Pho's blogroll, I began assembling a list of the medical bloggers who cross-reference one another. What I found confirmed Pho's estimate that there are no more than 100 of these medbloggers, many of whom are aggregated at medlogs.com. Nor are these medblogs yet widely subscribed. Pho today has 14 Bloglines subscribers. One of the founders of the movement, medpundit, today has 58. Those numbers are one or two orders of magnitude shy of the readerships of many of the tech blogs I follow. But unless fear of malpractice strangles this baby in the cradle, that will be a temporary phenomenon. In the long run there will be many more people hungry for informed analysis of medical issues than for informed analysis of tech issues.

This looks like a great opportunity to watch the blogging meme replicate throughout another community of practice. I'll be fascinated to see how it changes, but also is changed by, that community. Corporate techbloggers, for example, are learning to walk a fine line between acceptable sharing of information and punishable transgression. Medbloggers face a different set of issues: libel, privacy, and of course malpractice. See this American Medical News article for a useful overview. [Jon Udell's Weblog]

As you can tell from some recent posts I've started following medical information on Pulmonary Fibrosis online, mostly inspired by this article. I even found a blog called Bronch Blog to subscribe to.

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.

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]