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.