Stage 4 liver disease and treatment

   I am still trying to figure out why my clinic is not going to treat me and was wondering if it is because of my stage 4 liver disease?   This is the only condition left that we haven't gone over here.  I got a call from OHSU (Oregon Health Science University) last week for an appointment in two weeks, so all is not lost.

[meki]

No - all is not lost.

Let us know how that goes...

OK?

[btsmith]

how is your breathing problems doing?  let me know if you have any questions with it as pulmonary functions are kinda my focus

[meki]

I'm doing ok so far... It's Cottonwood season - and I'm highly allergic to that shtuff...

But As long as I'm keeping on board: Advair, singulair, benedryl, Fexofenadene and Nasonex, I'm doing ok...  Plus Albueterol and Combivent --- PLUS I'm down to the last 3 days of now single Prednisone

But if I let it lapse - even an hour on the time of the Benedryl, fexofenadene - then I'm hitting the bathroom for steam - looking for guifensin - chugging the inhalers and coughing non-stop.

So - it's just keeping it in check...

It will pass soon -- Another 10 days or so... And then I'll just be on the Albuterol and Combivent/Nasonex/Advair/Singulair.

I'll be dropping the Prednisone in 3 days --- and should be able to lighten up on the other things with lower doses... It seems to happen every year (except the last 2) ever since we moved here --- and I'm trying to learn to live with the Cottonwood... LOL!

Better though.. Much better than last week.

I couldn't play last week -- but the last 2 days --- dang - I'm sore.

Hugs and hoping everything will go good for you at your appt.

Remember --- journaling can REALLY help you. I promise that it is even interesting to look back on...

Meki

[btsmith]

  Sorry girl but that is way to many meds.   That's around 6-8 thousand different possiblities for just the meds you listed.   How many mg's on the Pred?  Prednisone can produce psychosis (steroid) in many people which is similiar to a panic attack or a ashtma attack.  Remaining calm is most important.  Better a walk-in cooler than a steam room, steam has moisture and moisture and heat, as found in the lungs is a perfect combo for bacteria.  
   If it is only during cottonwood season that is good, but gosh Advair and a rescue inhaler should do it.  
   When coughing do you spit up anything?
   Let me know about these things.

   Yea I am jazzed about the medical school.

btsmith

[Texas714]

I'm stage 4 and treating.  Many people are able to treat with stage 4.  Why do you say they will not treat you?  Maybe "they"/ "the clinic" wont' treat you so they are sending you to see someone that will/can.
Best of Luck to you.

[Trinity4]

I am still trying to figure out why my clinic is not going to treat me and was wondering if it is because of my stage 4 liver disease?   This is the only condition left that we haven't gone over here.


Jun 27, 2008 05:16PM
   Just got turned down for tx today due to my bipolar disorder and few other little things.
Bummer Dude..
   Headed for guinea pig land.


I thought that was the reason for denial of tx?  
Trin

[btsmith]

  Yea, that has always been the deal rather fuzzy, but fretboard said that they treat bipolar people all the time, which put that reason on the back burner.   I threw out some reasons why, to my G.I. doc ,one of them was the bipolar, my age, he said stage 4 but there never was a definite reason, I'm 58 yo.???   I will tell you that for the first time I owe the Clinic $500 and have had many of the G.I tests that have come up negative.  Still wondering.  I can only speculate.
btsmith

[btsmith]

I am headed for guinea pig land.  It is a research university.
All I really know is I feel bad and want to feel well, not even good is necessary.
bt smith

[Trinity4]

I know what you're saying.  I'm 56 and stage 3 so I know how you feel.  What other choice do we have than to treat!  The way I've been feeling lately BT, just give me thier address and I'll go kick their A$$ for you!!!  Good Luck.
Trin

[btsmith]

  Tell me what you think about this but I have seen in the last 5 years a tendency to test but a reluctance to treat.  I think it is because nobody wants to get sued, but none of my doctors seems to want to grab the bull by the horns and do something.   Now if they treat stage 4 liver disease,  I am out of questions as to why, so I can't even tell another doctor what is wrong.
btsmith

[Trinity4]

You certainly have run into more road blocks than most. Testing generates alot of money for the medical community. Everybody gets a kickback.  You can go to the doctor for an ingrown toenail and end up having a total body CT Scan.  Way too much unnecessary testing done and you're exactly right - because they don't want to be sued.  Sure, it's great if you can get an accurate diagnoses, but if you can't get the proper treatment for it what's the point.  I think you are headed in the right direction by seeking out a teaching university.  I think it will be very beneficial to you in the long run.
Trin

[Bill1954]

I’m not familiar with the particulars of your case, but most clinics have their patients file an extensive interferon waiver prior to treatment; mine looks like major surgery disclaimer. It would be very difficult to even file a malpractice lawsuit, and almost impossible to prevail.

My experience has been that doctors are generally reluctant to order redundant or superfluous tests; they have to weigh the cost burden to society, along with everything else.

If the only reason given for withholding treatment is your bipolar condition, try getting a psychiatrist on board that will evaluate you individually. This will help share some of the burden with the treating doc, and will allow more intensive monitoring of your condition than perhaps the treating doc is able to supply himself.

IFN treatment is contraindicated in *decompensted* cirrhosis, but is generally considered for Child-class A stage four.

Talk with a shrink, and take it from there—

Bill

[btsmith]

   I have my old psychiatrist ready to come on board, even though he has to cut his fees with my new medicare advantage plan.  He is very good, but without treatment, there is no need for him to take a pay cut and I wouldn't do that to him anyway.  He has treated my bipoar for many years and I trust him completely.
   I understand the medical community is almost entirely filled with dedicated health personel, but at times I think the patient, which in this important case is me, sometimes comes in a close 3rd after the doctor, medical insurance and patient.  I must say however,  that I have had this disease for 35 years or befor they knew about it and I have been going to the same clinic for 25 years, probably having over 150 blood tests with the monitoring of my psychotic drugs,  and up until 4 years ago there was no indication that I had HCV. I brought this up with my PCP and he said they have to be looking for it in order to see it.   I was even tested for aids once.
   I will sign away my life.

thanks for your imput,  without doctors where would we be.
btsmith
  

[btsmith]

You sound like your in the medical profession so I will tell you this one instance.  I am a little anemic, so they were looking for blood loss.  I had an endoscopy, chlonoscopy and a capsule endoscopy (small intestines).  Cost me about $600 above and beyond my insurance and was negative which put us back looking at the Hep C.
btsmith

[btsmith]

  I maybe have more medical problems than most but really it's the bipolar, scared lungs from pulp mills (sulfer dioxide) and Hep C.  Perfect blood pressure, cholesterol, etc. never even had an operation.  People in my family live to be 95 quite often, my aunt is approaching 100.  The hepC and screwed up lungs are both from external sources.  Which is why I don't get it.
  I've never missed an appointment, I have done all the blood work correctly everything they told me to do I did in spades.  My primary says to me "did he (my GI doc) tell you why he's not going to treat you?".   ISN'T IT IN MY CHART YOU #@*(.  OR PULL IT UP ON SCREEN LETS TAKE A LOOK!!!  (They are in two branches of the same clinic).
  Maybe you should go beat them up for me,  I feel like it sometimes but am so out of breath by 2 p.m. that I am usually in bed.
  Meki are you watching this let me know about the ? I asked you.  I would rather focus on somebody else's problems, there easier.