Sunday, August 26, 2018

I feel happy! I feel happy!

(I default to Monty Python lines for quite a number of things) Just a quick note to apologize to anyone reading my blog for no updates in five years. I'm not dead yet, my health has been fairly stable, though I'm recovering from a bit of a crisis. I'll post more on that soon.

Saturday, November 30, 2013

'Tis The Season To Get Sick! Fa-la-la-la-la, la-la-la-la! (Part the Second and Final)

My reason for this post, and for the title, is that lots of colds start springing up this time of year. And though colds are viral and don't respond to antibiotics, they frequently turn in to sinus infections which may require antibiotics to clear.

So I want to talk to you about Neti Pots, NeilMed, and sinus power-washing.

Before we got married and were dating, my wife thought I was on way too many antibiotics, this was four years before my health crisis and subsequent diagnosis of CVID. Now we recognize that they're a vital part of keeping me healthy, and that's just the way it is. It's scary reading articles about an antibiotic-free future because of the overuse in animal production industries and the growing number of superbugs, it could well prove fatal for me. But it is what it is as it's unlikely that feed lots are going to change their practices due to economies of scale.

May of last year I had a complete work-up at National Jewish in Denver, and they were strong advocates of NeilMed Sinus Wash. I was very resistant to it: you're taking a squeeze bottle of a saline solution and flushing it up one nostril and out the other, yuck doesn't begin to cover it. After that trip and seeing my immunologist to discuss their new findings (which mainly confirmed that my original immunologist (same practice, he's now retired) did an acceptable initial workup) that I had acid reflux, he was also pressing me on using NeilMed, and he gave me a starter bottle and said that he and most of his staff use it.

So I tried it. And I hated it. And I still hate it, but I do it daily and sometimes twice a day.

Since I started doing this, for over 17 months, I have had one sinus infection that required antibiotics. My wife started doing it, and it has greatly sped-up or stopped cold sinus infections for her. Just two weeks ago I was coming home from a party and complained to my wife that my right eye hurt, a sinus pressure issue which is a pretty strong indicator that something is attacking me. I did one of my rare twice-a-day flushes when I got home before I went to bed, did it again when I got up as part of my normal morning routine, and that was it. A friend of mine at the same party developed nasty bronchitis and was out of work for a couple of days.

Personally I microwave my bottle to take the chill out of it. You don't want it hot, just slightly warm to the touch. The time required to warm it varies tremendously depending on microwave power: my home microwave takes about 35 seconds, my parents 14 seconds.

I can't do a neti pot, I have some fused vertebra in my neck and just can't turn my head properly for it, so I use the squeeze bottles. I have three pairs of bottles for my wife and I: at home, travel, and a set at my parents along with the salts so that we don't have to take them there. You should replace the bottles regularly, I think they recommend every three months, mine are about due for replacement. I write our initials on our bottles with a Sharpie and I'm going to also put the date on the next batch to keep track of when they should be replaced.

They're available at pretty much any pharmacy, they're not expensive, just be certain that you use distilled water in them! There were a couple of cases where people died from using tap water that drew from a river that contained a parasite that went in to their brain and killed them. There are different brands available, I'm sticking with NeilMed because it's been a consistent performer for me. The only problem that I've had is I think they had a production glitch and I got a couple of bottles where the internal rubber tube was just maybe an eighth of an inch too long and it messed up how it's supposed to squeeze and spray, a quick trim with a clean knife and you're solid.

A friend of mine was a little concerned when I told her that I was doing this, she found a study that showed an increase in colds and sinus infections with using these twice a day. First, it was a poorly controlled study. They had a group of 40 or so people doing sinus flushes twice a day when the NeilMed recommends once a day unless you have a bad problem. Second, they didn't control their study properly. They should have had one group not using flushes, one group doing it once a day, and one doing it twice a day. So it was a bad study.

My personal evidence and the testimony of others that I know that use them tell me that it is a safe and effective product, but as always, your mileage may vary.

'Tis The Season To Get Sick! Fa-la-la-la-la, la-la-la-la! (Part the First)

Wow. A year and a half since last I blogged. I've been very fortunate, my health has been pretty stable. My Hizentra dose has not changed, though I have changed some techniques. I'm doing once-a-week infusions now, I'm also using 12mm needles so that I have less surface irritation over the week. But the most important change that I've made was lidocain.

As of tomorrow, I will have done 340 infusions, and they've all been abdominal. We've almost always had a dog during that time, and there was no way I was going to risk doing them in my thighs, and the arms and upper back just didn't seem practical. I'll do it myself, and my abdomen is the most convenient area. Well, over that time, I've developed some scar tissue and frankly, it hurts sticking in those needles now. I've read about people using topical anesthetics on the IDF forums and contacted my doctor to try it out, and I'm VERY happy that I did!

It's a little inconvenient, and it entails a change to both your supply and infusion methodology. First, the cream is topical, and has to be covered with a bandage, like the Tegraderms or similar that come with your SCIG needle kit. Thus, you now need twice the number of Tegraderms. I had some supply problems with my pharma, so I ordered a box on Amazon and will never need more again. Second, the cream has to be applied for an hour before you do your infusion, so you have to schedule accordingly. This works well for me, because my infusion model is that I load 55 ml of my 60 ml infusion in to my Freedom 600 syringe, then I set the syringe, needle capped, upright in a clean Starbucks bottle and let the bubbles settle. After an hour, bubbles are gone, and I load the final 5 ml. It's also then time to clean off the cream and start your infusion.

Here's the tricky bit: you need to know where you applied the cream so that you correctly place the needles in the numbed area. I have considered a Sharpie marker: draw a circle about the size of a nickel for the cream, apply cream, cover with bandage, and wait. But I'm not sure that repeatedly drawing on yourself with a Sharpie is safe, so I went and talked to a tattoo artist. They use surgical markers to draw their to-be-inked designs, which presumably are safe. In fact, the guy that I talked to would have given me one, but he'd just run out. So I'll be ordering one from Amazon next week. I use my wife as a spotter, which is fine if you have someone handy.



I have not been illness-free, but much better than 2009 when this whole CVID thing started. Just before Christmas last year, I had a REALLY NASTY GI bug hit me, I'll describe it as nothing more graphic than high-pressure expulsion from both ends. Unfortunately my immunologist was not immediately available as he was recovering from surgery, nor was my regular doctor returning my calls (he has since been fired), fortunately my wife did her undergrad with a woman who became a family practice doctor, and she called in two scripts that took care of me, though it took several days for me to regain strength and that was right at the time that we were driving 600 miles up to Colorado for New Years.

WHEEE!

On to Part the Second!

Monday, July 2, 2012

Some interesting medical developments


"Scientists successfully reversed diabetes in mice by transplanting mice human stem cells into mice in a discovery that may lead to way to finding a cure for a disease that affects 8.3 percent of the U.S. population. ... In an experiment designed to mimic human clinical conditions, researchers were able to wean diabetic mice off of insulin four months after the rodents were transplanted with human pancreatic stem cells (abstract). [They] were able to recreate the 'feedback loop' that enabled insulin levels to automatically rise or fall based on the rodents' blood glucose levels. Additionally, researchers found that the mice were able to maintain healthy blood sugar levels even after they were fed large quantities of sugar. After several months, researchers removed the transplanted cells from the mice and found that the cells had all the markings of normal insulin-producing pancreatic cells."



"Two anti-clotting compounds already approved for use in humans may have a surprising role in treating radiation sickness. Last year's nuclear accident in Fukushima, Japan renewed anxiety over the lack of treatments for radiation poisoning. It was long thought that the effects of exposure to high doses of radiation were instantaneous and irreversible, leading to destruction of the gut and loss of bone marrow cells, which damages blood-cell production and the immune system. The two compounds are thrombomodulin (Solulin/Recomodulin), currently approved in Japan to prevent thrombosis, and activated protein C (Xigris). Treating mice with either drug post-exposure led to an eightfold increase in key bone marrow cells needed for the production of white blood cells, and improved the survival rates of mice receiving lethal radiation doses by 40–80% (abstract). And yes, the lead author's name really is Geiger."



"Rabbits with blocked windpipes have been kept alive for up to 15 minutes without a single breath, after researchers injected oxygen-filled microparticles into the animals' blood. Oxygenating the blood by bypassing the lungs in this way could save the lives of people with impaired breathing or obstructed airways (abstract). In the past, doctors have tried to treat low levels of oxygen in the blood, or hypoxaemia, and related conditions such as cyanosis, by injecting free oxygen gas directly into the bloodstream. But oxygen injected in this way can accumulate into larger bubbles and form potentially lethal blockages."

Sunday, April 8, 2012

Faster low-power CT scans!

"Standard CT scanners can generate images of patient's body in less than five minutes today, but the radiation dose can be equal to about 70 chest X-rays. Lower-powered CT scans can be used in non-emergency situations, but it can take more than four days to produce those images. Intel and GE created an algorithm that speeds up a computer's ability to process the low radiation dose scans by 100x, from 100 hours per image to one hour."

http://freepress.intel.com/community/news/blog/2012/03/12/computing-power-speeds-safer-ct-scans

http://science.slashdot.org/story/12/03/12/199244/algorithm-brings-speedier-safer-ct-scans

I definitely like this as I get CT scans at least once a year. We try to keep aware of my exposure to radiation, and we definitely prefer MRI's to CT scans, so this is a great step in the right direction.

GE calls the technology Veo, so that's what to ask for when you're told you need a CT scan.

From the article:
As Baker described the breakthrough, "The joint team ultimately developed an accelerator based on 28 Xeon processors totaling 112 cores and a dramatically improved algorithm. We reduced the compute time to around an hour, delivering superior medical images and reducing the X-ray power by up to 90 percent."



As I was reading through some of the Slashdot comments, I came across a post that said this had already been done by some scientists using the graphics processors in video games such as the Sony Play Station. I'm not really an expert on the processing power of console game units, but I understand it's pretty incredible. A couple of years ago the U.S. Air Force bought something like 1,700 Playstation 2's to rig together to form a small supercomputer for the Academy, and this has become a fairly common technique for filling the need for inexpensive supercomputing requirements: they may not be as fast as a dedicated mainframe or supercomputer, but they're tremendously faster than a PC or PC network.

http://phys.org/news198934846.html

Friday, March 9, 2012

Organ transplants where the recipient is able to discontinue immunosuppressive drug use!

This is REALLY big news! It will be quite interesting to see what the follow-up studies report.

"Researchers have for the first time managed to give patients a complete bone marrow transplant from an unrelated donor. The recipients were also able to accept kidneys from the same donors without the need for immunosuppressive drugs. Normally, such transplants would trigger graft-versus-host disease (GvHD) — an often deadly complication that occurs when immune cells from an unrelated donor attack the transplant recipient's tissue. The researchers report that five of eight people who underwent the treatment were able to stop all immunosuppressive therapy within a year after their kidney and stem-cell transplants, four of which came from unrelated donors (abstract)."

http://science.slashdot.org/story/12/03/08/2159252/drug-free-organ-transplants-from-unrelated-donors

Sunday, December 11, 2011

A new cancer treatment?

A 17 year old student just won the "$100,000 Grand Prize in the Individual category of the Siemens Competition in Math, Science & Technology. Her project was entitled “Design of Image-guided, Photo-thermal Controlled Drug Releasing Multifunctional Nanosystem for the Treatment of Cancer Stem Cells.”

Her creation is being heralded as a “Swiss army knife of cancer treatment.” Zhang managed to develop a nanoparticle that can be delivered to the site of a tumor through the drug salinomycin. Once there it kills the cancer stem cells. However, Zhang went further and included both gold and iron-oxide components, which allow for non-invasive imaging of the site through MRI and Photoacoustics."


She's been working on this for over two years and wants to go in to chemical engineering, biomedical engineering, or physics.

Wow. The Swiss Army Knife of cancer treatment, and improved imaging. This is going to be great!

Geek.com article
Slashdot thread

Sunday, November 20, 2011

Get Smart About Antibiotics week

was last week. "...an annual observance in which the Centers for Disease Control and Prevention and its medical and public health partners try to raise awareness of antibiotic resistance."

Wired: Antibiotic Awareness Week article


The EU recently passed a resolution, not the same thing as a law, decrying antibiotic use to promote growth in livestock.

Wired: European Union Antibiotic resolution


And just in time, a new drug-resistant superbug is making life interesting in European hospitals. "Klebsiella pneumoniae is a common cause of pneumonia, urinary tract, and bloodstream infections in hospital patients. The superbug form is resistant even to a class of medicines called carbapenems, the most powerful known antibiotics, which are usually reserved by doctors as a last line of defense. The ECDC said several EU member states were now reporting that between 15 and up to 50 percent of K. pneumoniae from bloodstream infections were resistant to carbapenems. To a large extent, antibiotic resistance is driven by the misuse and overuse of antibiotics, which encourages bacteria to develop new ways of overcoming them. Experts say primary care doctors are partly to blame for prescribing antibiotics for patients who demand them unnecessarily, and hospitals are also guilty of overuse."

Slashdot: European superbug

Monday, October 3, 2011

There was a panel at the IDF conference that I really wish I could have attended

It was on how immuneglobin treatments are prepared, I don't recall if they were talking about Hizentra specifically. They pool 10,000 plasma donations to make a treatment lot/batch, this gives a wide mix of antibodies which our immune-deprived bodies might actually be able to use. Each donation, less than a liter (though I don't know exactly how much) yields 4 grams of IgG.

I'm currently on 10 grams of Hizentra a week (50 ml), which means I need the equivalent of 2.5 plasma donations per week for my continued treatment. So my hypothetical lifeline is five people donating plasma every 2 weeks. For the rest of my life.

Wow.

I'll definitely have to attend that manufacturing panel if I ever get another opportunity. And I definitely regret having not donated blood and plasma as often as I could have. I did donate regularly and donated over a gallon, but I guess you can never do enough.

Sunday, September 25, 2011

My Bicentennial Infusion

Thursday, August 13, 2009 was my first infusion. 25 months (and a smidge more), and I'm doing my 200th infusion as I write this. That means 800 needle sticks in my abdomen, 1000 needles disposed of, over eight football field lengths of tubing used, almost 7 liters of medicine infused (6955 ml) representing 1217 grams of actual immuneglobin (IgG).

I don't want to think how much my insurance company has had to pay to keep me reasonably healthy.

And I have been healthy mostly, especially considering that it was four pneumonias in five months that pushed me into a crisis and got me the diagnosis of hypogammaglobulinemia. I take a very perverse pleasure in telling people that I don't have an immune system, then following it up with saying that mine's borrowed.

We're actually reducing my dosage. I'm currently doing 60 ml a week (12 grams) and we're cutting it to 50 ml. (I do two infusions a week with the dose halved, it's a lot more comfortable but doubles the needle sticks) I've been maintaining a pretty good IgG level, my last lab work had it at 1010 with the normal range about 700 to 1600. The doctors at NIH say that I should be healthy with my level in the 900's, so we're tapering my dosage down and we'll see if the frequency at which I get sick increases. If I can get it down to 40 ml, I'll switch to once a week which will be more comfortable. When I started, I was doing 60 ml in a single infusion, then it was increased to 70 ml and I had to use two syringes as one will only hold 60 ml, and that last hour was pretty painful. Each infusion site is considered capable of holding 10-15 ml of fluid (from what I've heard) which means 60 ml is pushing it and 70 is over. So since I was already using two syringes, I had them double the tubing set quantity and I started doing it twice a week. MUCH more comfortable.

(I started with a different med that had a lower gram dose per ml so now 60 ml of Hizentra is the same dose, 12 grams, as 70 ml of Vivaglobin)

It will be interesting to see if I can get down to 40.

Another interesting thing that came out of my visit to NIH was they did an abdominal CT scan and apparently there are visible air bubbles in my abdomen from the needle sticks! These are cumulative from the little bubbles in the lines, since I'm doing abdominal injections, a bubble in the doesn't carry the same hypothetical risk of a cerebral aneurysm that a direct injection to a blood vessel might carry.