Wednesday, October 31, 2007

Tuesday, October 30, 2007

Doing Better? Hmmmm?!?

Test results came back today (October 30, 2007) from tests taken at Dr. Kearsley's office:


  • Cholesterol - My LDL was 182. Normal is less than 130. I need to watch my saturated fat intake -- no more bon-bons!
  • Electrolites: Good
  • Potassium: 4.4
  • Thyroid: Normal
  • Blood Count: Normal
  • Vitamin A: Normal
  • Vitamin D: 16 (low) -- start supplement 1000IU
  • Liver tests improved:
      Alkaline Phos. (ALP) 483 previous test, 352 this test (normal is <110);
      AST 68 previous test, 52 this time (normal is 40);
      ALT 95 previous test, 62 this test (normal is 40).

Friday, October 26, 2007

Saw Doctor Jen yesterday

... she's as wonderful as ever!

Russ drove me to Providence and accompanied me to my appointment with Dr. Jennifer Kearsley at 10am -- helped out where my "fuzzy brain" couldn't. :-]

My vitals were pretty good ... nothing too bad: blood pressure was on the low scale (97/58). Pulse was good: 72. Weight ... well, let's just say I should cut back on the bon-bons.

The profound fatigue is quite normal, as are the other symptoms of the disease I am experiencing. The game plan is to see my Liver Specialist, Dr. Benner, on November 27 and see what he says.

I gave 3 (count 'em) 3 vials of blood for the cause: cholesterol screen, liver function test, checking vitamins levels -- Doctor Jen had a list of 5-6 things she wanted to check -- some of which will save Dr. Benner some time. Anyway, the needle pinched a lot and I gotta nasty boo-boo out of it. Anyone wanna take my place next time? :-\


Anyway, just blogging ... filling out forms ... living ...

I miss everyone at NCNM!!!


** Doctor Jen is my Primary Care Provider. She is with the PACE Clinic (Providence Ambulatory Care & Education). She has been following me since my first day at the hospital, January 23, 2007. She's the best!

Monday, October 22, 2007

Thanks for the card NCNM!



Note to self ..

PBC is generally (99.9%) not terminal.
PBC is not contagious.
PBC is not caused by alcohol or drugs (damn!).
PBC is not a death sentence ... it's just a ball and chain around your ankle. :-\

Chin up!




OUCH! Another bad bruise:

Friday, October 19, 2007

I've got news ...

... went to the Anti-Coag clinic on Monday and received excellent results for me and my AFIB ... my PT/INR test: 2.3 (2.0 to 3.0 is acceptable for me) -- a far cry from the 3.9 last time. I'll go back weekly to be sure I remain stable. I am still experiencing flutter multiple-times daily. It feels really weird.

Also ... went to Kaiser doctor today too. My Kaiser GP, David Martin, checked me over thoroughly ... said all the symptoms* I have experienced and are experiencing are normal and to be expected. “I can’t tell you anything you don’t already know.” However, he could not release me to return to work without first seeing the liver specialist. He said he could get me to a Kaiser specialist but the appointment would probably not be until after the first of the year. He therefore thought it best I remain with the Oregon Clinic appointment. :-\

* profound fatigue, itching (under control today), fuzzy brain (the weirdest thing), nausea, vomiting including bile, yellow jaundice, loose stool, cramps in my feet – the arches -- hurts like ... well, you know ... my bones ache in legs and arms, depression, bruising, bleeding, gas/bloating … all very annoying!

I called to make an appointment with Dr. Ed Neal (MD/MSOM) at the NCNM's Classical Chinese Medicine Clinic on Pettygrove and he, unfortunately for me, is out recovering from a recent ailment. I will call back in 5 days to try to schedule with him. I did however speak to someone about learn more about nutrition with regard to the AFIB and PBC. I am finding nutrition to be a key factor in controlling some aspects of the diseases.

So .. the bottom line .. I am in limbo until I can see my liver specialist on November 27. :-\ I've asked his nurse to please call if there is a cancellation. I said I think it is urgent ... my whole life is dangling by a thread. (ok .. not quite that bad). :-)

(And they talk about people having to wait in Europe) hahaha.

By the way ... I'm not so yellow today. :-)


FOR YOUR DISTRACTION ...
This week's fun video: http://www.youtube.com/watch?v=C4qyIx0z_6o


Hey, check out the PBCers.org chat: http://www.pbcers.org/chatroom.htm
I am usually there on Friday nights-- Men's chat starts at 5pm PST ... runs til 6ish.
After 6pm it's open forum -- come one and all -- find out about PBC.

Saturday, October 13, 2007

Living With PBC [or "You Don't Look Sick!"]


Thanks for dropping by. I've been missing you! Been here at home since October 2nd.

Well ... where do I begin? I was born .. um .. I was diagnosed with PBC while in the hospital for a life threatening episode of Atrial Fibrillation ("A-FIB", as it's called. More about AFIB later.)

Please Note: If I ramble .. blame in on "fuzzy brain syndrome" .. a consequence of having PBC.

What's PBC? Oh! PBC is a form of autoimmune hepatitis (non-contagious). Affects the bile ducts of the liver. Basically, a type of chronic liver disease. My PBC was diagnosed via a liver biopsy (it hurt). I am a rare case -- men usually do not get this disease. It is also NOT caused by alcohol or drugs ... it's auto immune. A worse case scenario: even if I need a liver transplant and it's successful, the disease can return because my body is attacking the organ, not an external force. :-/

Check out : http://PBCers.org/whatis.htm for some detailed information about the disease.

Anyway, most important : the purpose of my blog will be to keep everyone informed on how I am doing and to share information about the disease. Keep sending me good "vibes".

Oh, a lot of you have been asking : when will Robert be coming back to work? I don't honestly know when I can return .. a lot will depend on results of tests that are coming up on October 19. Keep checking in .. I will keep you posted. I appreciate your concern.

These past two weeks have been real rough : starting with internal bleeding beginning on September 30 for 4 days, then profound fatigue, itching, bruising, headaches, memory loss, foot cramps, depression, joint aches and pains, stomach cramps, nausea, violent vomiting of bile, jaundiced ... PLUS a number of A-FIB episodes including an INR level of 3.9 (not good! Mine should be 2.0-3.0. The average person is 1.0).

I have appointments scheduled: October 15, 19 and 25 plus November 19 and 27. The hard part now is getting to them ... since driving is becoming difficult as well as risky.

So, until I post again .. enjoy this video I posted at :

http://video.google.com/videoplay?docid=-1214419917716321195&q=The+gay+garden+Show&total=39&start=0&num=10&so=0&type=search&plindex=0


A couple of friends of mine (Tim and Robert) made this little video a few years back. And in memory of them I want to share it with you.
;->

Feel free to comment or email Robert at: