Some news ..

"Doctor Jen" (Kearsley - my PCP) called. She says that even though my liver enzyme levels are better (1184 down to 352) -- they are pretty high (32-110 is normal) and believes rushing back to work would be a mistake especially since my symptoms continue: profound fatigue, itching, nausea, vomiting, fuzzy brain -- I've even had a difficult time keeping my thoughts together to do the blog. I've also been confused over whether I've just taken meds or not. I now have a check list for it. I'm sad to report that I am having a lot more bad days than good lately.

"Doctor Jen" wants to see me again on Friday, January 25, 2008 to assess how I am doing. I will be keeping a journal (it may even be here). She also reminded me that the disease is not curable but generally not terminal. :-)

I am very happy with the modifications made to my meds: No more blood thinners - Coumadin and Digoxin. These are hard on the liver but were needed with my AFIB. Ta ta to the Anti-Coag clinic visits. I will continue with Metropolol (for the AFIB), Ursodiol (for the PBC and AIH), and the Lexapro (for the depression). My vitamin and mineral levels are all good now. I am experimenting in being gluten-free.

Russ and I are going to try making the monthly PBC support meetings in Portland at Old Wives Tales.

Well ... I am missing everyone very much! Thank you for your concern, love and support!!

All my best this holiday season!!!
Robert

The doctor's office called ...

They said: "Dr. Jen" (Jennifer Kearsley, my PCP) will need to wait on Dr. Benner's report (which may, more-than-likely, included a wait for the results of the upcoming ACHT test on Tuesday, Dec 4) before she can make any determination about my work future. More news on Dec 5 maybe??

And so ... the wait continues ...

How's your patience doing? :-D
Robert

I'm Better??

I saw the liver specialist, Dr. Kent Benner, this morning. After looking at my progress (see below) he will recommend to Dr. Kearsley, my PCP, I return to work ... that working may actually ease some of my symptoms. However, he could not really say whether I will continue to experience profound fatigue, foot cramps, leg aches, nausea, vomiting, etc.

Kinda left me wondering ...

Indeed, my liver enzyme level numbers are better. The Alkaline phosphatase level in January (when I went into the hospital in AFIB) was recorded at 1184 (very high - normal is 32-110) ... in October new blood tests showed it at 352. So yes, the Ursodiol is working -- it is slowing the damage caused by the disease.

A Cortrosyn [ACTH] Stim test was ordered: Tuesday, December 4 at 9:30am.

So ... the wait continues ...
R.

Which came first ... the turkey or the day? Who cares .. Happy Turkey Day!

hmmm ...

But, how are you?!?

Just a little Sunday update ...

This weekend I've been feeling nauseated, having painful joint aches -- been having a hard time sleeping, profound fatigue, and lots of fuzzy brain "moments". heh heh heh.

Of course, with all that comes some depression. I find the inability to do what I used to, things that I used to just take for granted, as very frustrating. Sometimes the challenge is learning to accept the reality of the situation and accordingly adjust.

Anyway, Russ is taking very good care of me. I am soooooo lucky!!!

Thanks for checking in. :-)

Shed Some Meds ...

I saw Dr. Ron Peterson (Cardiologist) this morning. He says I am still having some "beat skipping" and "flutter" issues. He said I am pretty "middle of the road" as far as stroke risk is concerned and to be aware that I will have another AFIB episode in the future -- when is the only unanswered question.

With that he told me to stop taking the Digoxin for now; I could stop (the choice was mine) the Warfarin --but if I do: change my aspirin intake from 81mg to 325mg (a regular "Bayer" type). He said 'in removing the Warfarin, I might see a positive difference in the profound fatigue' I am experiencing. And the risk of bruising and bleeding should be reduced also.

I took this as "good news". He remind me that my PBC is probably the cause of my profound fatigue. And, the Metroperol (which I will continue to take for the AFIB ) - it's a Beta Blocker and the risk of bruising and bleeding easily is a side effect to be aware of.

Next appointment: Dr. Kent Benner, Liver Specialist -- November 27

Russ says he's still open for business! :-]

Russ says he is still taking orders at mudballs dot com for the holidays.

It'll help with our loss of income from my illness. :-]

-R

The Wait Is Killing Me .. 20 days and counting!

Tuesday, November 27th seems like light years away!

That's the day I see Dr. Kent Benner, my liver specialist. I am anxious to find out if there are things I can do about the symptoms (nausea, profound fatigue, on and on ...). I would like to find out about going back to work in some capacity. Being at home is not a lot of fun even though it does make dealing with the symptoms of my diseases much easier. Amazingly, you can get "tired" of "being tired" -- but having low energy is a fact. Even doing the smallest of chores has turned into a challenge. And, my "fuzzy brain" gets in the way constantly. I loose track of what I am doing.

I am also dealing with some depression but I know I have lots of people who care and are sending their best wishes my way. :-]

I'm thinking about keeping more information in my blog: diet, including nutritional information and cost; meds and suppliments I am taking; and maybe even expressing my mood and any other information that might be of use to others going through the same things that I am.

Anyway, thanks for letting me ramble. I appreciate your stopping by.

Robert
robertseamans@gmail.com

I started my own website ...

Thanks for your encouragement!
Living with PBC dot com is now open.

Happy Halloween!

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).
  
  

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!

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:

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.

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:

robertseamans@gmail.com