Small Victories and Going Primal

Since I last posted, my health has improved pretty significantly. I've had several small yet very significant victories:

• Since my absolute lowest weight, I have gained 9 lbs.
• Although I still use the supplemental oxygen pretty much all the time, I have been off it for a couple hours at a time to work in the garage or in the back.
• Related to the above, I started cleaning out the garage and sold Dad's Goldwing, which had been sitting and deteriorating.
• I am planning to go back to work in early May.
• I have been able to make progress exercising in my room. Right now I do bodyweight exercises a couple times a week and interval sprints on the exercise bike every week or two. Each session yields more exercises per set than the last.
• Over the weekend, I cleaned my room thoroughly including doing all my laundry and bedding.
• I've rediscovered how much I love to cook and have been cooking quite a bit.

I'm sure part of my success has been due to following the Primal Blueprint, particularly the dietary aspects. In a nutshell, I avoid all sugars (except for fruit in moderation), grains (even "hearthealthywholegrains"), and industrial vegetable oils. I try to eat meat from grass-fed animals as much as possible and have found that my GI system tolerates fermented and cooked vegetables much better than raw.

I don't know that simply being primal is the entire answer; I have felt a little off the last couple days after completing a 3-week round of antibiotics, so I fear there may be something lingering. I see my new GI doctor at UCLA on Monday of next week. Things really went south when my digestive system was wrecked eight years ago, so I think that if that can be truly and properly addressed, I will eventually make my way back to good health.

Health Update 2-5-10

Things were up and down last month. A couple weeks into the month, it seemed like things took a turn for the worse again. My oxygen requirements increased, my shortness of breath was worse, and I was feeling pretty weak. Last Friday (1-29) I saw my pulmonologist. She had the results from a recent sputum culture and, based on those findings, took me off Tobi (the nebulizer medicine for the pseudomonas) and put me on an oral antibiotic for something else that looked like it was pretty low-level at the time of the specimen collection. She also prescribed me a steroid inhaler to calm things down and digestive enzymes to aid absorption.

Over the weekend I actually felt worse. However, just a week later, it seems things are taking hold. I think it just took my system several days to adjust to everything but lots of little indicators (O2 levels, heart rate, strength, mood, and more) have improved sufficiently to indicate to me that maybe this concoction is what my body needs to do some healing and get back to optimum, what ever that is for me.

I was also able to get referred to several other specialists in the UCLA system and have set up appointments over the next couple months. This is truly an answer to prayer - at the beginning of December I was afraid I was going to have to wait until November of 2010 to switch!

Brief Health Update

The last 2-3 weeks have been good. I finally feel like things might be turning around for the better. While I have been left with little reserves and am, in many respects, worse than I was several months ago, I do finally feel like I can say "this week was better than last" and have been able to for a few. I think there are a few factors going into this: diet, exercise, and state of mind. I have been paying special attention to all three relative to my general health. I also want to bring prayer to attention: I can think of at least five instances in the past month where people have specifically prayed for my health and am sure that's playing a role.

I switched my primary care physician to a doctor with UCLA so [the Western Medicine portion of] my care can be better facilitated among the various and sundry specialists.

I have one goal for 2010 health-wise: take a more active role in the maintenance and management of my own health. Of course, that's one of those poorly-worded vague, immeasurable goals. Thus, I need another one: gain 30 lbs by the end of the year.

A Candid Update

I must come clean. I haven't been exactly forthcoming with you, my loyal readers. I have actually been on disability leave from work since early August - soon after I had the first reaction to the Nebulizer. The intent was to take a few months, get things normalized, put on some weight and strength, and get back to work around the first of next year.

Thus far, this has not happened.

Since my last post, things have been a bit rough. I had a bad bout with GI problems for about a month which exacerbated everything else - you can't heal if you aren't digesting your food. Pulmonary got worse, I lost a few more pounds (all of which seems to have been muscle mass), and all that together certainly hasn't helped my mental and psychological well-being.

I also kind of feel like I have lost my way. Not working is making me feel unproductive; although I have personal projects to work on, I am a bad procrastinator and waste a lot of time on useless crap from browsing the web to watching NCIS reruns to playing Spider Solitaire, obsessively undo-ing and re-attempting until I beat every game. Man I am neurotic. Also, as a result of the further weight loss and the requirement for supplemental oxygen, I haven't ridden my motorcycle in about a month.

There has been a glimmer of hope the last couple weeks though. I don't want to jinx it, but I can say I feel a bit better than a couple weeks ago. I saw a new pulmonologist at UCLA on the 6th who I really like. She's proactive and has some new ideas on both defeating my acute problems and managing my chronic condition. This has certainly improved my outlook, if nothing else.

Mid-October 2009 Health Update

It's been mostly plateaued since last post. I finished pulmonary rehab a couple weeks ago and have already started to fall off the exercise wagon. I really don't have a lot of energy reserves and it's hard to compel myself even though I know intellectually exercise is not just good for me - it's essential. I found a strength training program that I like the concept of and I think will work for me. It's simple and achievable even initially in my rather weakened state. Cardio is another issue. I think I really have to do it every day in order to get myself into a habit, at least for the time being.

I did see some specialists at USC last week with whom I was very impressed; I'm trying to get on board with them for some more testing. They said the first order of business is to figure out why I'm losing weight, fix that issue, and fatten me up. One theory is improper enzyme balance (which has been presented by my infectious disease doctor as well). They also recommended switching brands on the nebulizer medicine to alleviate the bronchospasm side effect.

A good nutritional plan also continues to elude me - I just have trouble really sticking to anything when I don't see conclusive results after several days or a week. Some of my recent research has indicated that maybe my body is in an acidic state and I need more alkalizing foods in my diet. I do know that I've been getting heartburn pretty regularly and my digestion hasn't been so good for about a week. I have been monitoring my weight and haven't lost anything so that's good at least.

My mood in reaction to this progresslessness is kind of split: part of me is frustrated that nothing seems to do much permanently, part of me has accepted that this is the way things are, and part of me admits that I'm not even doing all the right things I am aware of and is determined to change that.

Two Health Victories

The health saga continues. I have two notable victories to share since last time I posted. The first is that I started seeing my chiropractor again. This isn't necessarily earth-shattering in itself, but he got a table that's quite amazing. It's called the CERAGEM-RH. You lay on your back on top of it and it has rollers that travel up and down either side of your spine along with infrared heat. Although the first couple half-hour treatments were painful since my back was so tight and I have next to no natural padding, I can already tell some health benefits after only three sessions. My posture is improving and my back seems both a bit stronger and more mobile. Most importantly though, my ribcage pivots like it is supposed to; before it wouldn't expand much (if at all) when I breathed deeply. It was kind of like trying to blow up a balloon inside a steel cage rather than in free air - I could breathe in to a certain point but it just wouldn't go anymore. That sensation is now gone.

The second victory is something quite simplistic. Some supplements actually work. I have been consistently taking a multivitamin, a probiotic supplement, and cod liver oil for the past week and a half and have noticed a marked improvement in my digestion. I haven't notably changed my diet, sleep pattern, or started making incantations in that time so I'm pretty darn sure that the supplements are doing it. Along with improved digestion has come, I believe, improved absorption - I have gained two or three pounds since my lowest.

The upshot of all the above is that generally, over the last week, I feel like my health has been improving. Yesterday I took a walk at a pretty good clip and my stamina held out for the nearly hour I was out. I have energy to do more than just sit around. Unfortunately, I was a bad boy last night and most of today and ate way too many nasty inflammatory foods (pizza, ice cream, pancakes, mac & cheese, creme brulee) so when I went for my walk today I was rather wheezy and didn't make it nearly as far in as good condition. It was a fruitful experience though; it reminded me of the cost of eating bad stuff.

Battle of the Titans: Rehab vs. Antibiotics

I realize it's been awhile since my last health update (4 weeks, to be exact). Things have improved moderately since then. I took oral antibiotics for a couple weeks while my lungs calmed down after the assault from the nebulizer. After about a week, I was able to function without oxygen all the time.

I started pulmonary rehab 3 weeks ago. The intent is to get patients on a regular exercise schedule (strength training, breathing exercises, and cardiovascular exercise). I participated last May-July and it helped a great deal but getting sick in November and staying sick through May of this year pretty much wiped out my progress and then some. I have been doing OK with the program but not great. My energy level is not very high and with the fires and heat of the last week it has been difficult to get outside and walk daily.

On top of that, I have been placed back on the nebulizer - this time a different drug, Tobramycin. I am tolerating it, but barely. It basically gives me mild asthmatic symptoms all the time so I have been attempting to find a balance between enough drug to keep the infection at bay and not so much that I get a violent reaction like last time. It also seems to make my stomach a little more sensitive than usual.

Nutrition plays a big role too - another complication as my appetite isn't the greatest lately and even when I am hungry I get full kind of quickly and breathing is difficult if I overeat. My weight is beginning to cause me troubles - my leg muscles (well, I guess all my muscles) are pretty weak and doing almost anything beyond sitting or walking at a slow pace gets exerting quickly. Additionally, my entire left leg hurt earlier this evening - my friend Laura theorized that perhaps something came out of joint and the nerve was pressured. Makes sense. Fortunately, I found a spot to sit and it went away after a while. Regarding weight gain, the Vita-Mix has been great for making smoothies or really anything that needs pureed.

I don't want to sound like I'm terribly down or defeated - I actually have some degree of hope but know it's going to take a while before I'm better. I have goals and plans, the trick is just going to be sticking to those plans. I've always been an excellent planner but not so good at following them.

It's Been a Rough Week...

In stark contrast to the cheery, wine-and-roses nonsense from last week, this week hasn't been so great. Since I last posted, I have had two rather profound reactions to my nebulized antibiotic. The first occurred last Wednesday night. I did the dose as usual, went down and ate dinner and was rather shaky - an expected side effect of the albuterol. I woke Thursday morning after a night of badly interrupted sleep - short of breath and coughing all night long and knew it would be a bad idea to take the oxygen off, so I left it on and stayed home from work - meanwhile refraining from nebulizing anything. Friday morning I felt marginally better (I didn't need oxygen) and I got in touch with the doctor and explained my situation. I was advised to use the albuterol just in the morning before taking the antibiotic and the antibiotic alone at night. Friday night I took another dose, just antibiotic. Saturday I ran a couple errands and was kinda more tired than usual but functional. Saturday night I took another full dose of the antibiotic sans albuterol. A couple hours later the fun started...

They're called bronchospasms, but it feels like a baboon sitting on your chest. I have been unable to breathe freely since Saturday night. Fortunately, I did discover that I wasn't reacting to the albuterol other than the jitteryness and that it did relieve the situation to a degree. I use it every few hours when the tightness and discomfort starts to return. I haven't removed the oxygen for more than about five minutes, and that with some degree of discomfort. I've obviously been unable to go to work. For the first couple days, it was difficult to eat because I'd get badly winded chewing and swallowing. Things have been improving, but very slowly. Realistically, it would be pleasantly surprising if I can function without the oxygen by sometime this weekend.

In the meantime, I am back on Cipro (oral antibiotic) and Singulair until the culture comes back to see what else any lingering infection will respond to.

On another note, the Vita-Mix came today, but I haven't used it for anything yet.

Quick Health Update

Not a whole lot to report. I've been off the IV antibiotics for a week and off the oral antibiotic since Friday. I've been doing the breathing treatments with the nebulizer, which seem to be doing the trick. The albuterol that I mix the antibiotic in with makes me a bit jittery after the treatment. I discovered that it's similar to adrenaline so that's not much of a surprise. The adrenaline crash is part of the reaction too.

I'm generally feeling like the infection is gone. I still cough up a little stuff but it's not menacing like before. I didn't feel great this afternoon - kind of full, bloated and uncomfortable after my afternoon smoothie. I think maybe it's too big. I also had a long couple days at work so I was just generally kind of wiped out.

I started tracking my diet last week using a website called FitDay. By late afternoon the first day I was only up to 1250 calories and got disheartened and quit tracking. I still need to get back to the gym. It's tough to do when one doesn't have any energy reserves at the end of the day, but I know it'll help my lungs and my appetite both.

Long-Term Treatment

As of today, I finished the IV antibiotics and started the nebulized (inhaled) antibiotics, which will be a long-term thing. I finish the oral antibiotics Friday. The intent is that whatever the IV and oral didn't kill off, the nebulizer will keep suppressed. I am, quite honestly, glad to be done with both the oral and the IV antibiotics. The oral are starting to bother my stomach and the PICC line is often itchy. I feel much better than a month ago and can only hope that the nebulizer does the trick.

On another note, I did a bit of Googling and discovered that Vita-Mix offers a medical needs program. I called to confirm and found that it was indeed true - all you need is a note with affirmation of medical necessity from your doctor. Considering I've lost 1/3 of my body weight since I was "healthy," I certainly think I qualify, and my immunologist agreed to write the note for me. Some might wonder if a Vita-Mix is simply overpriced hype. I was certainly skeptical until I used my grandma's. It blew every other blender out of the water - and it's about 20 years old. When I made smoothies, it even pulverized the berry seeds (which unlocks the nutrients within). I'm confident that it will be a big help toward returning to a healthy weight.

I've been a slacker and haven't kept a dietary journal. I'll start this week.

A Visit to the Nutritionist

This afternoon, I had my appointment with the nutritionist that my pulmonary doctor referred me to. The big takeaways were (a) I REALLY need to be snacking between meals, preferably a couple hours before the next meal, and (b) it takes 3500 extra calories to gain one pound. Some ideas she gave me for good, high-calorie snacks:

• Nuts (850 calories per cup)
• Dried fruit (400 calories per cup)
• Avocado Italian style - mashed (250 calories) with salt and olive oil (125 calories per tablespoon)
• Nutrition drinks - I've had Ensure and it's nasty after a while, but there are other brands
• Adding extra cheese or dressing to stuff I'm eating anyway

I definitely got a vibe of sincerity and genuine concern from her as I unfolded my last several years of health history. She not only understood but also emphasized the importance of maintaining a healthy weight in order to support the immune system and better fight disease. The trick, she says, is to change your habits and routines so they become part of your lifestyle - I may even need to go as far as to set an alarm to remind myself to eat every couple hours (this seems obvious when someone says they want to gain weight, but I have never been one to eat just for its own sake - I eat when I'm hungry).

Beginning tomorrow, I'm going to keep track of what I eat and weigh in every week so I can have an idea of what works and doesn't. I am not sure that I am ready to share my weight yet - suffice it to say that I am profoundly underweight.

Ongoing Treatment

After being off the IV antibiotics for only a few days, I felt myself getting slightly worse. I saw the doctor this morning who was not hesitant to put me on another two weeks. The plan is to continue with both the oral and IV antibiotics for another two weeks, and then move to an inhaled antibiotic that will be taken with a nebulizer. This will be a long-term treatment. The doctor said that pseudomonas is remarkably hard to wipe out completely as not all the individual bacteria are exact clones. Some are slightly different (and resistant). Thus the multi-pronged approach. I really hope that this course of treatment does indeed offer some long-term relief - I have grown weary of being acutely sick. I continue to try to remain upbeat and hopeful.

Continuing Progress

Healthwise, not much has changed since last week. I'm still on the IV and oral antibiotics and continuing to feel like I am finally recovering. The pulmonary doctor referred me to both a nutritionist and to Pulmonary Rehab again (I participated in the program last summer with good effects and progress, but that has been undone and then some by my long struggle this winter).

When I am free of infection, I can actually make progress on my chronic lung issues. The real trick is going to be staying on top things and catching infections early and not letting them get out of hand.

The Importance of Proper Diagnosis

As a result of last week's bronchoscopy, the doctors discovered that I have pseudomonas, a particularly nasty drug-resistant bacterial infection. The bummer of it is, I was diagnosed with the same thing back in February and I believe it's what's been plaguing me since as far back as November! They placed me on an aggressive regimen of oral and IV-based antibiotics. The IV is administered at home, twice a day, so hospitalization isn't required and I can pretty much continue with life as usual.

I went to the radiology department at Torrance Memorial Medical Center to get a PIC line inserted into my upper arm so I don't have to get stuck over and over. The PIC line placement process is rather fascinating, utilizing both ultrasound and x-ray technology for feedback. At one point they "tickled a nerve" and I felt tingly all the way down in my forearm, even though they had injected a local anesthetic and had a tourniquet on my entire arm.

As a result of treatment, I am already feeling better. The chest congestion has cleared to barely a trickle. I can breathe more easily but have definitely been weakened by the months of infection - it'll take a while and some work to return to "normal."

Since the IV line is in anyway, I asked my doctor about the possibility of intravenous nutrition. He instead prescribed me an appetite stimulant. Hopefully this will help me gain some weight. I haven't been to the gym in about a week and a half - getting all this figured out was quite an ordeal.

For the first time in quite a while, I actually have a sense of hope and even a glimmer of optimism (although I am a realist, which optimists usually mistake for pessimists). My emotional and psychological well-being are better than they have been and I have some zeal and energy for life.

Bronchoscopy, Massage, and Returning to Work

For the last week and a half, I have felt adequately unwell that I haven't been able to go to work. Yesterday morning I had a bronchoscopy whereby they also cleared a bunch of mucus out of my lungs. It has been easier to breathe since, but I am still coughing up stuff. I spoke to the doctor and they did find a bacterial infection in the culture, but haven't determined what drug it is responsive to. At least this is somewhat encouraging that they might get me on something that will help.

I went to get a massage today - my dad referred me to his massage therapist. He's talked to her about my health issues and she is hopeful that massage will improve my circulation and perhaps stimulate my immune system since the spine is integral. I can say for sure that it was about the most relaxing hour I can remember and I felt better afterward. I definitely plan to return, probably every couple weeks.

I'm planning to return to work tomorrow. My job is, fortunately, not physically taxing but it's still tiring to be at work all day long. It will be nice to see my coworkers again and of course there is work that must be caught up.

Health Update 06-09-2009

Last weekend was pretty good. I ate pretty well, felt decent most of the time, got enough rest, and caught up with a couple friends. I had my monthly IVIG infusion on Friday, which didn't knock me out as badly as it usually does. However, I have been feeling lousy the last couple days - tired, very congested, and generally kind of fuzzy in the brain. I've been staying home from work to rest but really feel like I need to get back. I'm still taking all the supplements and sticking to the Maker's Diet. I'm going to try to cut out ALL dairy, including goat and sheep, for the next couple weeks and see if that is indeed contributing to the congestion.

Follow-up to Yesterday...

Just thought I'd post a quick update to yesterday's post - I actually feel marginally better today than I did yesterday. I coughed up less junk this morning and generally felt a bit better rested. One thing I changed - I had a tea last night right before bed made with ginger, lemon, and honey - all of which are supposed to be beneficial to the lungs. I think I'll keep it up as it is very tasty as well. Tonight is my first night on my new bed so we'll see how that does for me.

Plateau

As I mentioned in last week's post, I saw the pulmonologist on Wednesday. He prescribed me another inhaler and encouraged more regular usage of The Vest. I had not used it much as it made me feel beat up and cough up bloody mucus. However, my mom came up with the idea to wear a down vest underneath it for a bit of padding. This seems to help. The idea is that it loosens the phlegm and I can cough it up more easily. Doing this coupled with going to work a bit later seems to be improving my quality of life in the mornings - I basically get all the junk out at once instead of over the course of a few hours. I really wish the phlegm production could be stopped or minimized, but it's better than nothing.

After a week off the antibiotics I haven't had a relapse, so I think it's just a matter of my lungs getting back to "normal." I'm going to get back to the gym starting Thursday and will probably take it easy the first few days back. I've decided to focus on weight training at least 1-2 days a week so I can start building some muscle - especially on my legs.

The new mattress I bought on Sunday which will be delivered tomorrow - hopefully that will help too. I am the 4th or so person to have my current one, and it wasn't great to begin with. I imagine it's full of dander and dust mites as well.

I'm trying to be consistent with supplements as well - both those recommended by the Maker's Diet and the Oxymatrine from my Infectious Disease doctor (the antiviral). Hopefully something of this multi-tiered approach will start to make a difference (or, I suspect, they may work best in concert). I continue to hope but it is easy to get discouraged sometimes.

I think I should start keeping a hand-written health journal to track how I feel, what I eat, and what exercises I do. This may help paint a clear picture as well.

Health Profundity

This weekend I was chatting with Pop and observed rather bitterly that I feel best when I wake up late and go motorcycling. He said, "well, why don't you do that?" So, I am going to start sleeping in later in the mornings and going in to work a bit later. The reason I have been getting up so early (6:00ish) is to "beat the traffic" to work and get a good parking spot in the garage. Neither of these is a concern - I can "filter through the queues" as the Britons say and motorcycle parking is hardly at a premium at work. I do feel much better when I wake up even an hour later and really don't like making myself go to bed at 9:30 when the rest of the family stays up until 11:00. Besides, it makes me sound like a wet blanket when I say "I'm going to bed, turn the theater down so it doesn't keep me awake." This arrangement should work better for all of us and on those rare occasions when I do have to drive the car, I'll just get up early on those days and it'll be a special treat to get home early.

On another note, I see my pulmonologist tomorrow and will ask him what his thoughts are on my excessive bronchial mucus production. I have been on antibiotics THREE weeks now and have noticed no statistically significant change for either better or worse. I must admit that I'm getting a little bit frustrated with the situation and am about ready to throw in the towel on this doctor. Hopefully he has something profound tomorrow but I have my doubts.

Health Update 5/19/09

Note: This post has been date-adjusted to fall on schedule. It was actually composed on 5/21/09.

Not a whole lot to report from last week. My lungs still seem compromised - I cough up a lot of stuff in the morning but it calms down after a couple hours. Since I've been on this round of antibiotics for 2 weeks (and other stuff for quite a while before then) and nothing should have survived this long, I'm wondering if this might not be one of a few things:

• My body is confused and the mucus production is an erratic immune response
• The Oxymatrine is starting to have some effect and my body is attempting to rid itself of the virus that my infectious disease doctor believes I am harboring (and have been for some time)
• The copious amount of goat/sheep dairy that I am consuming is actually more mucus-producing than I have been led to believe
• Some combination of the above

I am not getting better by leaps and bounds but I am definitely not getting worse so there is some hope. I have been very busy the last week and haven't been to the gym since last Monday.

Riding my motorcycle is doing me some good. The psychological boost alone from doing something I had missed for the last year has been great. It gives me a time of tranquility and reflection every morning and afternoon. Also, my back and neck feel a bit more limber than usual.