Prednisone

Just finishing up a round of prednisone to manage pain which had gotten fairly intense a couple of weeks ago.  As has been the case in the past, I started with 25 mg for two days and then reduced the dosage by 5 mg. every two days until I reached 5mg. for the final two days.  This really is an effective treatment in that it begins to work within just a few hours and reduces the pain to a point where it is almost negligible.  It also increases my appetite, a huge plus for me.  On the negative side I had trouble getting to sleep the first couple of nights but have been fine since so it's not a big deal really.  My face also gets a little puffy looking which, for me, is, again, a positive.  Too bad prednisone is such a nasty drug as far as potential long term side effects go 'cause it sure makes life much more enjoyable when I'm on it.

Not sure if it's due to the prednisone or just a coincidence but when I started taking it my cough stopped and I am not spitting up phlegm like I was.

So, in summary, I am feeling great.
It's probably worth mentioning that I have found it necessary to continue to take my NSAID while I'm on prednisone.  I ran out a couple of days ago and have noticed an increase in joint pain.

Hospital Stay

For the last few months I have had a chronic cough which had been progressively worsening until it got to the point where talking, standing up, any exertion at all, would cause me to start coughing which would go on for what seemed like forever. Other times I would just start coughing for no apparent reason.  A couple of weeks ago I began to notice blood in my phlegm.  I also found breathing difficult and was experiencing fevers and chills.  Me being me, I did nothing about it.
On Saturday, July 30 my son Michael showed up at my apartment with orders from his sister Lisa, not to leave until I agreed to go to the hospital.  After about an hour's coaxing, I agreed to go to emergency at Victoria Hospital.

Not long after our arrival (it was a slow day) I was told that I would be admitted due to my lung problems.  I'll spare you the details but it turns out I had sepsis and by Monday they had figured out which antibiotic I would be on.  My PICC line, the suspected source of the sepsis, was taken out, covered in puss, and a new temporary line was placed in my neck so that I could restart my TPN, finally.

I also may have had a touch of pneumonia but due to everything else going on the evidence was inconclusive.    My cough began to show signs of improvement after I'd received several shots of Lasix to get rid of the fluid on my lungs.  All in all it was quite a ride and I arrived home August 6.

I saw my rheumatologist this past Friday who scolded me for not going in to the hospital sooner and informed my that I ..."could have died."  She also said that my lungs have deteriorated in the past 6 months due to the scleroderma but that we will wait a bit before taking any further action to make sure my recent conditions are entirely cleared up.

So, thanks to my kids for insisting I go to hospital.  You may have saved my life.

Scleroderma Walk/Run 2011

Well, we did it. We pulled off another successful awareness/fund raiser event surpassing our goal of $20 000 and almost doubling last year's total of $11 000. And there's still the online donations and BBQ to be aded to the $21 000 we've already tallied.

Thanks to everyone who helped make it all worthwhile.

Click to enlarge

New Developments

This past Wednesday I went in for a CT scan ordered by my rheumatologist because a chest x-ray from a couple of weeks ago showed a "nodule on the right lobe of my lungs". I didn't have an opportunity to ask for any more information than that so I am not sure how serious it was. Just waiting to hear the results now.

Update: Dr.'s office called yesterday. All clear on the CT scan. Great news.

Today I had what is to be the first of three iron infusions. The entire procedure took about three hours and was given through my picc line. After I was finished my Dr. showed up and showed me just how badly I needed this. He pointed out that normal iron levels are between 30 and 300. Mine was 4. Infusion number 2 will be in two weeks after which, he explained, I would start feeling much better which I take to mean more energy. In fact, I already feel a small difference in my energy level after today's infusion.

Two weeks tomorrow is our Walk/Run for Scleroderma. Time to start praying for good weather.

Update

It's been a while. Lots on my mind lately I guess.

GI Issues

Still at 110 pounds. I recently saw my GI doctor and he agreed that my lack of appetite and bloated feeling indicate that the two antibiotics I've been taking are no longer working. He prescribed erythromicin which my pharmacist says is no longer available and Cholestyramine, a powder which I mix with water and drink once a day. Hopefully this will help clean out my gut and stop the daily bouts of diarrhea. It's now two weeks later and it seems to be helping. I have been eating a little bit each day and the diarrhea is gone. The dietician also aded another 360 calories/day to my TPN bring the total to 2160. After a week, no weight gain but that's pushing it.

OT

The OT made up a gadget for my camera which enables me to use my thumb as my shutter finger without fear of dropping the camera. Works like a charm.

Walk/Run in the Park for Scleroderma

It's all coming together and there seems to be a lot of interest so I am optimistic that we'll reach our goal of $20 000.

Been a While

TPN

Rate of weight gain has slowed down considerably. Since my last entry, I have only gained 5 pounds which places my current weight at 110 pounds. I am also eating less due to a decrease in appetite and some bloating. The reason, I suspect, is that the antibiotics have lost some of their effectiveness in eliminating the undesirable flora in my gut. I don't see my GI doctor again until March 31 but as long as I continue to gain some weight I'm satisfied with my progress. I am concerned that this may affect he plan t begin weaning me off the TPN. I was going to try a feed via my G-J tube the other day but then realized that I didn't have any bags for the formula so had to put that on hold until I can get some bags next week.

Rheumatologist Visit

Saw Dr. Pope last week. The main thing to come out of that meeting was that I have switched from Arthrotec to Tiaprofenic acid for joint pain. So far I don't see any significant improvement but these things can take a while to kick in so must be patient.

Occupational Therapist

Have also been seeing an OT to improve function of right hand after the amputation of my index finger. She made a brace, the purpose of which is to move my middle finger slightly closer to my thumb. I wear it for a few hours each day and it is helping. On my next visit I will be taking my camera with me to see if we can figure out a way for me to compensate for the loss of my 'shutter finger'. Currently, I find it extremely awkward to hold the camera and hit the shutter release at the same time.

Spring Meeting of the SSO

Dr. Pope will be speaking at our spring meeting on April 9. Contact me for more information.

Walk/Run in the Park for Scleroderma

Our committee will be holding its second meeting on Saturday March 19.

GI Doctor visit today

It was a short visit primarily because everything is going well. My weight is now 105 pounds, that's another pound since last Friday, which puts me at 105 or 15 pounds since starting TPN. It was suggested that we go for another two months and then start weening me off TPN and back on to the G-J tube which has less risk than the former. That would put me in the neighbourhood of 120 pounds and I can certainly live with that. I may even be able to put some more weight on after I''m back on the g-j tube.

Dr. Howard attributes my ability to take in more food orally with the fact that I am taking the antibiotics, metronidazole and ciprofloxacin on a continuous basis for three and four days a week respectively. This has apparently stopped the build up of harmful flora in my gut and thus no bloating and fewer problems with bm's.

I must try a feed through my g-j tube one day soon to make sure I don't go back to the bloating problems.

That's Better

Last week I was a little disappointed that I only gained one pound but, the good news is, I made up for it this week by gaining three. Up to 104 pounds total.

On a totally different topic, I was reminded of a benefit of being in a wheelchair this morning when I purchased tickets for my daughter and I to see Sarah McLachlan in March. There are only two accessible seats on the floor and they are both in the front row so that's where we'll be. Really looking forward to this one.