Wednesday, October 24, 2007


I went back to work full time in August.
End of the year crunch was in September and I survived that....

I still have not completely recovered, mostly because of difficulty breathing and pain in my back.
The former is probably due to asthma that I had...which is now more forceful with the additional scarring and less volume.
The latter is likely due to my muscles being weak and my spine slipping out of proper position.

I'm flying to present at a conference in a couple weeks. 5-hour flight...needless to say, I'm a bit nervous.
I know that I should be fine, but I still get winded easily and I worry about what could happen at high altitude.
Probably not a big deal...more anxiety than anything I guess.

Monday, June 25, 2007

Recent Insomnia

I've had insomnia for the last few days. The earliest I've been able to fall asleep is 3am...and last night I couldn't fall asleep until 5:30am even though I didn't sleep during the day.

I'm starting to think more and more that my insomnia is a withdrawal symptom.
Honestly, the only reason I'm not 100% sure is that my ego would like to believe that I'm smart enough and strong enough to avoid becoming addicted to anything. Even if it is mild like in this's not like I have the DT shakes or anything.

Why do I think this?
I was on Dilaudid (intravenous) for three weeks; I always took it to go to sleep, otherwise it wasn't happening.
And I'll say this...I can COMPLETELY understand how people can get hooked on IV drugs. In my case, I felt a euphoric rush within 30 seconds. Brain rush, etc.
BTW - Dilaudid is 8 times more potent than morphine on a milligram basis...which is why the following mg's seem low.

When they put me on the oral medication, I didn't get that rush. And it didn't seem to work as well.
I was on the Dilaudid oral for two weeks before I stopped it cold turkey mid-last week.

I'll say this. Except when I was first given the narcotic, I did not take it as often as I could. Especially since I was getting a euphoric reaction to it. And then I asked them to cut the dosage to the point where it still worked. I was able to take up to 2mg every 3-4 hours. Typically I asked to take 1mg...2mg if it was really bad. And I rarely was asking them for painkillers before my time was up. When it was early, maybe a handful of times over three weeks, it was because I asked for 1mg and it wasn't enough. One time it was really bad and the doctor allowed them to give me up to 4mg. I took it at that dosage once and then dropped back to 1mg several hours later.
I acted this way because addictive behavior runs on my Mom's side of the family...and since I take my health issues from her side, it's likely I have the same tendencies. It's one of the reasons I don't drink. (And probably a big reason I'm such a control freak with my actions)

When I got home I was using this pain medication because that was what was prescribed. I could take 2 tablets every couple of hours, but I only took one...and only when I needed it. Sometimes I only took one or two a day.
However, I always took it when I was going to sleep. Why? Because my ribs hurt a hell of a lot more when I was lying down...even if it was on the other side it still put pressure on the ribs they spreaded as well as the muscles they cut. Plus, the staples were bothering me as well.

Even though I was very rational about how to deal with the Dilaudid. I don't think it is a coincidence that I have been having trouble sleeping since I stopped taking the Dilaudid. Especially since I always took a dose to drop the pain down so I could sleep. Another warning sign is that 1 pill didn't do the trick with the pain. (I never went to two pills, because I recognized that tolerance was a warning sign. In fact, I stopped taking them about the same time I realized this.

Looks like I will be calling my Primary Care Physician tomorrow to figure out what to do.
Probably the only thing to do is just ride it out. Looks like I will be working from home most of this week.

Wednesday, June 20, 2007

Saw thoracic surgeon today

He's the type to run in and out in under 60 seconds. But I got a copy of the Operative Report to find out what they did.
He's thrilled with my progress and I don't need to see him anymore.

So here is the report, minus the description of the procedure

Left empyema versus lower lobe abscess

Both of the above mentioned, left lower lobe pneumonia having matured into an abscess with perforation under the left diaphragm, and signficantly trapped left lower lobe excavating the left lower lobe along the basilar component and not involving the superior segment

A bronchoscopy (negative), left thoracotomy with partial parietal pleurectomy, decortication of remaining left lower lobe excising the basilar component of the left lower lobe with [staples and sewing] and removal of the remaining debris with cultures taken both of the pleurial fluid, the abscess cavity, and the tissues submitted for frozen and final pathology (no evidence of malignancy)

Three chest tubes were placed for drainage

No air within that portion of the affected lower lobe but indeterminate and more likely empyema than abscess, but always possible since the empyema is secondary to pneumonia process. The endotracheal and endobronchiad anatomy were perfectly normal bilaterally with no undue secretions. No masses noted.

Aside: according to the pathology report, the tissue removed was 13x6x6 cm and weighing 161 grams.
Seems like a lot...
The abscess on the lung was 5x4 cm


I can't seem to sleep tonight, so I'm catching up on things I've meant to do.
I think my stay in the hospital really messed with my sleep. I'm so used to being prodded in the middle of the night every hour or two that I can't seem to get back to a normal sleeping pattern.

So I've been out for two weeks and the side still hurts. Of course, they gutted me like a fish and used rib-spreaders...and peeled my lung like an what should I expect?

I am starting to go back to work on a part-time basis. I need to be productive to have my morale improve. We will see how this goes on a day-by-day basis. I can work from home at times, so that helps.

Got my first bill from the first hospital. Note that I spent 17 days with conservative therapy and then transferred to the other hospital where they did the major surgery (11 days).
17 days, most of which in ICU, totals $77,000. My cost is $150. Thank God for insurance. Had I been on my student insurance last year I would be responsible for 30%.

My guess is that when all is said and done, the total hospital bill will be $175,000.
No big surprise that the leading cause of bankruptcy in the US is medical bills.

One major plus is that my colitis seems to be under control.
Without taking immunosuppressants.

Granted, I am taking prednisone...but even that has been reduced to 20mg per day.

At this point there are minimal to no signs that I have UC. I don't know why or how, but I am grateful.
Perhaps I'll be able to avoid surgery after all.

Monday, June 4, 2007

The downside of Remicade

So here is why I haven't posted in a month.
May 7th I was taken by ambulance to the hospital because my breathing was short and thready and my chest was in a lot of pain.

I didn't think it was a heart attack, but did think I was having an allergic reaction to the Remicade, so I had them take me to the hospital where my GI is the head of their depatment.

Turns out that the large amount of immunosuppression allwed me to get pneumonia and pleurisy and a nice lesion on my lung. This plus being anemic doesn't work well.

One day in intermediate care (in between intensive care and normal hospital) and I reverted to the way I was when I came in. I honestly thought I was going to die. A move to ICU, broad spectrum antibiotics and breathing therapy (useless), x-rays, CT scans, and an eventual thorocentesis (where they missed three times...yes, you are awake) didn't fix it. So after 19 days at hospital #1 (17 in ICU) I was transported to a hospital where they had a thoracic surgeon on-site.

I was supposed to have a VATS procedure done (video assisted thoracic surgery). However, the fluid, giant pus-ball and the fact that they had to peel back more lung than expected resulted in a much larger open cut. Roughly 40-50 staples and three chest tubes to get at all the areas.

Needless to say, it's been a rough month.
I'm now home recovering. Colitis is a mess. Not sure what we can do at this point but take the whole colon. If it is colitis.
You see, in the treatment the flex-sig showed growth more common to Chron's Disease. In which case surgery is a bad option.
I'm going to see the GI (and about five other doctors) next week. Colonoscopy and biopsies to be had in the next two months.

A lot of scary decisions to be made. But at least I don't feel like I'm dying (like I did at two points in the hospital).
And at this point I need to get over the pleurisy/pneumonia. That's my main focus.

Sorry to be the bearer of bad news, but Im one of the rare cases of the bad, bad things that can happen when taking Remicade.

Sunday, May 6, 2007

Remicade treatment postponed?

I've been off the blog for a while as there has been a lot going on.

On the negative side, I got sick on Wednesday. Actually, it probably started as side-effects to the Remicade treatments and turned into something worse. In the middle of the night I was experiencing severe chills, then night-sweats. When I woke up there was extensive muscle and joint pain. Toward the end of the week it was bad enough that taking anything more than a shallow breath caused pain from my left shoulder to my back. Having had asthma in the past, I know not to panic in these situations and I can ride through it. However, it's not a good situation to be in.

Since Wednesday and Thursday were research presentation days to the entire company, I was on my feet for most of the day...outside in a tent. Also, I started a gluten-free diet on I've been taking in less calories (less energy). I thought these might be the causes of it. However, between Friday and Saturday I developed a fever of 101.5; in fact I got incredible chills and saw purple veins in my arms and I had been in the early stages of hypothermia. Very strange...and it doesn't help that I live in the basement. Many layers of clothing took care of the chills...but I was kept up most of the night with pain in my left shoulder.

After talking with the on-call doctor on Saturday morning, I learned two things:
1) Aches, pains, chills, night-sweats are common...especially right before a Remicade treatment.
2) The fever is a concern, but on its own is not a terrible terrible thing. If it doesn't stop before my next treatment I'll have to cancel.

To me, any fever is of great concern as I can count the number I've had in he last five years on one hand. And only once as it gone above 100.5 (my normal base temp is 97.5). I've also been sweating constantly for the last couple days...which is annoying.

On the positive side, before all of this happened I was feeling good enough to ask out someone I have a bit of a crush on. I can't say it is a date, as the last I heard (a couple months ago) she had a boyfriend. I'm expecting this to just be a friendship...and I'm ok with this. She was up to going to a concert in a couple weeks...and the next day I felt and looked better. It's amazing how much out emotions support (or detract) from our health.
On Tuesday I learned that she would be out of town and couldn't make it...
Is it a coincidence that my health dropped off the next day? Who knows.

The presentations to the company went well...though I learned that the science behind what I presented was flawed. Seriously flawed. But since I was just showing a proof-of-concept for my piece, it's ok.

Saturday, April 21, 2007

Friday GI appointment

Needless to say, my specialist was concerned when I left a message explaining how limited the beneits were.
At the time I would have a day or two of benefits and then it would revert to the way it was.

This week I had a breakthrough...and I'm going to start playing around with my diet more. I think it will help.
The thing is it was obvious that the Remicade was helping; my GI was impressed that my back cleared up in three days. He expected that it would still be there two months after the fact as that is the traditional time it takes with conventional treatment.

In the end, he's happy with the progress. And I am now as well.
Apparently only 40% of Remicade patients see full impact within the three initial (ramp-up) treatments.
Most of the 60% see improvement, but not enough to call it a full recovery. Of these, most continue to see benefits and will improve up through six months of treatments. Apparently the benefits keep ramping up as time goes on. It's not a one-and-done analysis.

In short, IF YOU DON'T SEE BENEFITS RIGHT AWAY, FEAR NOT. It make take some time.

He's talking about eventually getting off the Asacol and Imuran as these are doing little compared to the Remicade.
That would be great.

In the meantime he's decreased my Prednisone from 30mg to 20mg daily.
Whether my blurred vision is because I'm overdue for a new eyewear prescription (been 3 years) or the prednisone is up in the air. In any case, I hate the impact the corticosteroids are having...and I want off.
So lower is good.

In all...a promising visit.