September 21, 2006
Well, I'm exhausted. It's been a long day.
But my visit was Warwick was very informative. I learned about what he is currently researching (which I haven't heard anywhere else including this site) as well as his reasoning behind certain therapies that he uses.
He also showed me that my Vest jacket wasn't fitting me correctly. At all.
I'm too tired to detail it all right now, but I'll type up a long list of the details of what I learned tomorrow probably.
I think you all will be fascinated. I was.
September 22, 2006
So I'm finally sitting down to type about my visit with Warwick yesterday - where I learned a ton.
I've decided that I'm going to type on a topic one at a time... I got so overwhelmed thinking of typing all the info at once. And I do feel morally obligated to share all that I have learned to everyone in the CF Community. Information is so powerful with this disease - that there's no way I can just keep it to myself (which is the philosophy that I have when I post on the threads as well).
Before I type on my first topic, I want to put my visit in conext. And put Dr. Warwick in context. This will set the tone.
Dr. Warwick is 78 years old. He has been working with CF patients since the 1960s (maybe earlier but that's what he mentioned). This man invented the concept of high frequency chest compression (what many of us call "The Vest" even though there are many many versoins of it). He also has pioneered the use of many other therapies such as Mucomyst as well as the mist chamber (no longer used).
Dr. Warwick's patient population lives an average of 11 years more than the average of other centers around the United States. There are other centers in the US which have similar demographics to his (patient population size, race, income) but do not produce his results in terms of life expectancy.
Dr. Warwick has seen patients move from a life expectancy of 5 or 6 years old when he first worked with CFers to their 50s now.
And he is convinced that this success has nothing to do with him. His patients have taught him everything.
He has a passion for this disease that I haven't encountered with another practitioner in my lifetime. He is constantly reading what others have to say about CF and is always conducting experiments and studies on his own to confirm or deny his latest thoughts about CF.
So this is the context in which I wish to present what I have learned from Warwick.
No human on this earth is correct 100% of the time. And I suspect that some of his views on certain issues are going to provoke a great deal of discussion. So remember when I post, I am not saying that I agree with or disagree with what Dr. Warwick has said. I am simply posting what was discussed for the benefit of all CFers who come across this blog. Everyone will take what they will from it (as they do what on the threads).
And I wish I could post more now, but I'm off to my tour of the U of MN school of management. I'll post on my 1st topic tonight when I get back for evening meds.
September 22, 2006 Part II
So my mom and I had a blast at the Mall of America. We shopped for 6 hours. And covered every square inch of the place. TALK ABOUT EXERCISE!!!!!
And my apologies about my tease this morning. I really did think I would be able to talk about topic 1. But my new method of doing my Vest did allow me all that much type as I anticipated to type.
So Topic 1 from Warwick is going to be the Vest. Good topic in my opinion since the man came up with High Frequency Chest Compression.
First thing's 1st. Warwick had me bring my actual Vest (not the machine) to the visit. And what do you know - he said mine was the worst fitting jacket he had ever seen. Sweet. I wear an adult Small size jacket (not the Minnesota style...and I didn't even know there were different styles). Warwick said that the jacket didn't go up high enough (the middle part goes straight across the middle of my breasts) - it should be up to my collar bones. And the bottom is too low - shaking parts of me where I don't have lungs.
Oh yes and the straps were too lose. He says to messure the cicumference of your chest. Then at 10% to that. That should be the circumference of the Vest (how tight you should have it). Of course mine was wrong
His next question was what type of High Frequency Chest Compression device I had. I have the HillRom Vest 104. This lead into a discussion about types of frequency waves that these devices produce (and lead to my next question about his "new" device).
According to Dr. Warwick, the HillRom Vest 103 is superior in wave frequency shape than the HillRom Vest 104. But he submitted to me that the 104 is probably a better choice because I travel overseas so much (the 103 gave me an inguinal hernia from carrying it around Europe...along with a transformer for the darn thing).
So he moved over to the chalkboard in the room and drew the shape of waves that each device produces. But first, he stopped to inform me that he does receive royalties from the ICS system by Respirtech. He does not from HillRom. I replied that I hope that he makes some money for all the decades of research and contribution he has made for the improvement of CFer's lives. But he is all about full-disclosure.
The 103 HillRom Vest produces a sine shaped wave form. Which Warwick claims is superior for mucus clearance. I think, but cannot remember correctly, that my 104 produces a square wave form. Whichever shape it is, he says that his studies have proven this to be inferior.
Let me step back a bit. Warwick has many, many graduate and PhD students that work with him. They conduct vast amounts of research that Warwick claims he doesn't want to publish because there are too many hoops to jump through. He uses the results in his own patient population, however.
Warwick's newest High Frequency Chest Compressor produces waves in a triangle form. By measuring the amount of mucus that is produce and the amount of air that comes out of a patient's mouth during use, Warwick has concluded that the triangle wave form is the best form thus far.
You can read a peer-reviewed article at http://www.respirtech.com/images/whitepaperLO.pdf
While I was at the clinic, Warwick told me and the PFT nurse confirmed that a recent study involving his triangle waveform Vest was just conducted. He has no idea about the protocols nor the results. However the results will be presented next Thursday.
So, a mixed bag. We have one peer reviewed article on the Respirtech InCourage Vest and more studies to be revealed. Of course I'll email him on Thursday to check out the results. He said he'd let me know good or bad.
Our next discussion was about the frequencies and pressures with which I use my current HillRom Vest 104. I have been using the same frequencies since I started using a Vest 9 years ago. Someone long ago just told me what to do - and I haven't changed it. In terms of pressure - I just always used 5 because it seemed to be in the middle of the road. I did each of 3 frequencies (8, 14, 18) for 10 minutes for a total of 30 minutes.
No no no says Warwick. So he drew me a nifty chart. Which I wish I could put in excel format.
He has measured, definitively, the optimal frequencies for maximum sputum production. 6, 8, 9, 18, 19, 20. Each to be done for 5 minutes each.
In terms of pressure, there's a sliding scale. To find the pressure that's best for you, you start at frequency 6. And pressure 3. Then you take a few breaths. If that's easy for you to breath, then you move to pressure 4. If you're cool with that, then pressure 5. At some point, you'll reach a point where it's uncomfortable to breath. When you reach that point, chose the pressure below that and stick with that.
For me, at frequency 6, pressure 8 was too hard to breath. So pressure 7 is optimal for me. For frequency 6.
So the sliding scale is as follows - when I move to frequencies 8 and 9, I must move 1 pressure point down to pressure 6. And when I move to frequencies 18, 19, 20, I move to pressure 5.
So if you were good at pressure 10 for frequency 6, you would move to pressure 9 at frequencies 8,9 and then pressure 7 for frequencies 18,19,20 (I don't know why it's not 8....but he purposely did it that way). Hopefully I can find a way to post this chart.
Once we had that down, I wanted to know what his thoughts were on Europeans and Canadians not using the Vest. And studies that show manual CPT are just as good as HFCC.
His first comment was that he wishes the American healthcare system was more socialized like the Euros.
His second comment was that the studies that show euqality between manual CPT and HFCC must not have used optimal HFCC settings. LIke the ones I have been using the past 9 years. He says there is no question in his mind that his patients are so healthy because many of them have used HFCC for so many years (more so than the rest of patients in the US). It's better that manual CPT. And he believed that before he started to get royalties from Respirtech.
So that's it for today. There are many many more topics that I would like to write about in detail. But for today, this is enough. I hope you all find it useful.
September 24, 2006
Well, I am safely back in LA. I almost had a heart attack when i landed in Burbank and found that SC was only up 3-0 against Arizona at the 1/2.
So, since I have described my experience with HFCC, the next natural topic I feel is mucus. And sputum.
First I learned the difference between mucus and sputum. I thought they were synonymous. Nope.
Mucus is what everyone has in their lungs and sinus cavities. Everyone meaning even those without CF. It's meant to help lubricate the airways and nasal passages and assist in trapping foreign particles to be taken out of the lungs and sinuses.
Warwick believes that CFers have a normal amount of mucus. It just happens to be dehydrated.
Dehydrated mucus is a great living space for bacteria. Then inflammation occures. And white blood cells attack. And white blood cells die. And bacteria die. And they produce waste. Yadi Yadi.
This creates sputum. It's mucus plus everything else that occures in a CFers lungs due to the mucus' dehydrated state.
Warwick believes that as long as the sputum is kept mobile (through proper coughing techniques and HFCC), infection and other complications can often be avoided.
So along the lines of sputum, Warwick taught me a new way of coughing. He read a recent article discussing reptitive coughing causing damage to healthy airways of those with Chronic Obstructive Pulmonary Disease. He says that he would like the study to be duplicated to provide solid proof, but he has a feeling it will be.
So on that note, he taught me a new way of coughing (new to me anyway) to help my "lungs cough by themselves", as he put it.
This is how it's done. You take a normal breath. But you don't let the air out. Then you take another normal breath. And you don't let the air out. (not DEEP breaths...normal intake of breath). Then you repeat until you can't let any air in. Make sure not to take subsequent breaths in quick succession. Take the breaths as if you were breathing normally. A cough should come afterwards.
Let me warn you - i took me a solid 48 hours to the hang of this thing. And I tried probably once an hour to do it for 10 hours a day (plus after each 5 minute frequency session with my Vest).
And I still can't suck in enough air most of the time to cough reflexively. I usually have to let out a cough. So I'm going to have to email Warwick or ask those from his clinic that have been taught the cough to help me figure out what I'm doing wrong.
But I do have to say I was feeling really congested and short of breath while walking around the airport today. And I couldn't get whatever gunk out that was causing the problem. But I tried the new cough technique - and I got out a nice hung of junk. And not my normal thin, smooth stuff. This stuff was chunky and thick. That made me happy.
So, this cough, as I said, should be done after each 5 minutes of your total 6 frequency series on your Vest.
Warwick also mentioned several times during the consultation that I wasn't coughing enough. Like many CFers, my cough frequency varies from hour to hour. But when I'm at my baseline, I don't cough a whole lot.
Warwick wasn't happy with that. He said I need to purposely cough more often. Using the method he taught me. When I come to a stop sign, cough (I drive a lot at my job). When I change radio stations, cough. Yadi Yadi. Basically, get the gunk out that's causing the infection.
So I forgot to talk about the theory behind the cough. Warwick thinks that this technique can get air behind the sputum. And the air will force the sputum out.
So that's it for tonight. Next topics I'm thinking of talking about are antibiotic frequency (I know I've posted about the Denmark way of doing IV's), CF outlook, communication with phsycians, Mucomyst, CFers experimenting with treatments and having children.
Hope everyone is well. FIGHT ON.
September 24, 2006 PART II
Quoof was kind enough to send me the New Yorker article on Dr. Warwick.
I read it myself a week after it was published almost 2 years ago....and I haven't read it since until today.
It's incredible how similar Warwick is in the article and in person.
He spoke to me about experimenting and how to interpret my results. He used the stereo stethascope. He grilled me about why my PFT's were at 95% instead of 105%. And he challenged me to figure out new ways to make my lungs better than the average person's without CF.
So here's the article for any of you who haven't read it. It's quite fascinating how closely my clinic visit mirrors what is captured in the article.
And thanks Quoof for sending this to me.
September 25, 2006
So we've gone from HFCC, to sputum, and now I want to talk about IV antibiotics and hospitalization.
This topic came up when I visited Warwick because of the recent article I posted on this site about th Danish way of doing IV therapy - every 3 months regardless of health.
Warwick considers hospitalization a failure. But not a failure of the patient. A 100% failure on the shoulders of the physician. He feels that it is his job and the job of every CF doc to ensure that sputum clearance and medication adherence is such that patients don't deteriorate to a point where they need hospitalization. With proper clearance (HFCC) and adherence, patients should remain stable.
He submitted that many physicians don't like the perspective that responsability lies solely on their shoulders. But he says that its up to us as patients to teach this perspective to our docs. And its up to the docs to dig, and dig, to figure out why a patient slips into a need for hospitalization.
Warwick was looking at my records and saw that I was in the hospital last Sept 2005. He asked me why I was in the hospital? Told him I flew to the USC home opener against Hawaii in Hawaii and stood in the blazing hot sun without properly hydrating. Then I flew back to LA the next day and flew out to DC for an NIH study. Long story short, I exhausted myself with too much travel.
He looked at me, puzzled. "What else did you learn?" I didn't have much else than that. "Drink more water????" I replied. He told me that I need to have a heart to heart with my doc every time I'm in the hospital to figure out how the situation can be avoided. Hospitalization shouldn't become standard in CF therapy... it's a big red flag of failure.
So I asked him about the Danish way. He said that the every 3 month thing is probably because of lack of HFCC. He says patients wouldn't need all the hospitalizations if they kept their sputum coming up properly. He also added that there's probably a $ component to the hospitalizations as well.
I think it's pretty phenominal to have two drastically different views on hospitalization, yet two similarly unusual life expectancies (living into 40s and 50s).
So there's the Warwick view on IV antibiotics. Next topic will be Pulmozyme, Hypertonic Salene and Mucomyst.
September 26, 2006
My apologies for not posting last night. I was at the Stanford Women's Information Session. It seems like an incredible MBA school.... anyone have any connections to help me get in?????
So next topic is Pulmozyme, Hypertonic Salene and Mucomyst.
I asked Warwick what his thoughts were on the incredible new development of Hypertonic Salene. It had helped me cough up a bunch of plugs as well as help induce more coughing all together (he said I didn't cough enough, remember?).
He replied that he wasn't all that thrilled. he agrees that Hypertonic Salene is better than placebo or better than doing nothing, but he's not a fan.
Nor is he a fan of Pulmozyme. He claims that his patients do better when they dont' take it. Remember that he is big into his patients experimenting and teaching them how to experiment. He in fact went on to say that he thinks that for his patients the drug does do more harm than good.
He is a fan, as you all have heard, of Mucomyst. And this was one of the biggest a-ha moments for me during the visit. Mucomyst, for those who don't know (and I had no clue what the drug was made of) is N-Acetyl Cysteine. Sound familiar? It did to me once he said it. There has been a HUGE amount of research on this anti-oxident as it relates to CFpateints.
It is thought that CF patients are so suseptable to virulent bacteria because of a lack of Glutathione in the body. And it is thought that N-Acetyle Cysteine is the best building block to put into the body to induce Glutathione production. In fact, in pill form, the body gets more glutathione well all is said and done if N-Acetyle Cysteine is ingested as opposed to pure Glutathione. You can read more about the anti-oxidents on the internet.... Warwick didn't go into it in depth with me.
But as soon as Warwick said N-Acetyle Cysteine I perked up and blurted out "Glutathione!!!!" And he replied "You have just revealed of yourself how much research you are doing." DAMN STRAIGHT.
So Mucomyst goes directly into the airways, right where glutathione is missing in the lungs. And the theory goes that it produces glutathione, thins sputum and helps the body help itself in defending infections.
Warwick mentioned that some of his patients take an oral N-Acetyle Cysteine, mostly when they're on vacation or short on time and don't have time to take their Mucomyst. He says he hasn't seen benefits of doing the Mucomyst and taking the oral NAC.
So that was our conversation about Mucomyst, NAC, Pulmozyme and Hypertonic Salene. Not sure what my next topic will be but I'll try to post it tomorrow night
Well, I know we've all wondered this. And we've all probably gotten different answers from each of our physicians.
Can we do nebs while using the Vest????
I asked Dr. Warwick this in an email. And as I've said in everything else I've posted about Dr. Warwick, i post his reply in the spirit of information. Information can help CF patients live better, longer lives. And I know Warwick strongly believes this so I post his reply publically in the hopes that it will help other CFers out there.
Warwick lets his patients do nebs, as long as they aren't antibiotics, while doing the Vest.
No kidding. The inventor of the Vest, the man whose patients live in average 10 years longer than the US average, has his patients do this.
So for me, I'm doing it. It will save me so much time! Yey!!!!
Hopefully it will save you all time as well. Or at the very least, assure you that what you've been doing is correct. :)
I'll be back on later with eFlow news.... I have 3 more hours to work :)