I am not asking for medical advice. I'm asking for advice

[Wiley50]

saving the careers of two kind dedicated medical professionals who are trying to save my life
A gastrointestinal nurse practitioner and my primary care physician who
also handles my pain management.

I was a carpet layer for 25 years. Carpet layers work with very sharp double edged razor knives and we worked very fast, as we worked sub-contract. Someone got cut every day , in varying degrees of seriousness and we always had open cuts on on our hands. When someone got cut badly, he took off to get sewn up while the other stayed behind to clean up the blood because if we didn't we not only didn't get paid for the job but we also had to pay for the carpet.

These were the days when no one had ever heard of Hepatitis C and didn't carry rubber gloves. We cleaned up the blood bare handed. Somewhere along the way one of those helpers was infected and in cleaning up his blood, I was infected too.

I was diagnosed in 2001. I had my first liver biopsy then. There are four stages of Hep C. The fourth is cirrhosis and when you get there ,there is nothing they can do for you but find a good hospice. In 2001, I tested 2 and they weren't too worried. It turns out I have the easiest form of Hep C to cure , if, and that's the big if, you can handle 6 months of peg-interferon-ribovirin treatment.

The first 6 weeks of therapy aren't so bad, some body aches and chills, kinda like the flu. Then it hits and hits hard. The first day you throw up everything in your system. From there on out it's dry heaves, day and night. You can't eat or sleep (for fear of aspirating stomach acid cause that's all that's down there. Nothing most states let doctors prescribe works to stop the vomiting. I lasted 9 days after the vomiting set in and then I hit the Emergency Room. Only 13 states allow a doctor to prescribe the only thing that works: Marijuana. Unfortunately, mine isn't one of them. Complicating matters, I'm on SSI disability and Medicaid. I can't go anywhere where I can be treated properly.

Two months ago, I had my second liver biopsy. This time I'm Stage 3. Either I find a way to handle the interferon or I have 6-8 years to live. I am 54.

I have a good nurse practitioner. She tried to get me Marinol, but in this state Medicaid won't pay for it except for cancer. To pay out of pocket is $400/month and my income from SSI is $628/mo. Scratch that.

Also I'm a pain management patient subject to regular drug screens.
Luckily, my doctor agreed to suspend the drug screens for the 6 months I'm on interferon.

Here's the catch. I've had a catheter in me since Oct 15. Two Fridays ago ,on exploratory, they found a bunch of big bladder stones. Yesterday they were supposed to bust them up with a laser and flush them out. So I checked into the hospital and they took a urine sample, easy to do through catheter. Two hours later the nurse came in and told me the doctor refused to operate because I tested positive for pot. (just a sample joint some 19 year old dealer gave me and it was not at all medical grade. The urologist is a crabby old bastard but very few here will take medicaid. So I'm still pissing in a bag and don't know what to do.

I'd love to tell the urologist the whole story but he's just the type who might turn the primary care doctor and the nurse practitioner into the medical board or even the cops. As good as they've been to me, I would never do that.

I'm in a real dilemma and I want this damn tube out. Anyone have any ideas?

[cynatnite]

1. Can you get a referral for another more compassionate urologist...

I'm so sorry for all your heartache and I wish there was something I could do. :hug:

[Wiley50]

8. Few will take Medicaid. Finding one is the problem

[create.peace]

2. is moving to another state an option? nt

[Wiley50]

9. No Money. $628/mo SSI Medicaid won't move me out of here

[create.peace]

31. i was without internet after i asked....

so sorry for your predicament. there is soooo much wrong with this country.

[Vincardog]

3. Stay clean for 2 weeks and ask to be tested again. Tell Dr. Quack that you went to a concert and mus

have got into some "second hand smoke".

[Wiley50]

11. That old bastard would never believe it

[Vincardog]

18. Then tell him to go pound some sand up his ass. Ask him if he is a Doctor a a prison guard.

[Chan790]

4. Unless I'm misunderstanding...

you do have a script for Marinol which was never filled.

Ask the original Dr. to write you a shorter script, for as needed...3 days or something. (The out-of-pocket hit would still be there but be closer to $40 than $400) The Marinol would cause a "false positive" and you'd be able to avoid the issues with the urologist.

You're already approved for the medication...you're just seeking a more manageable solution for filling the script. You're not drug-seeking.

[Wiley50]

10. No. Medicaid wouldn't grant a "prior approval" I have no prescription

[LeftyMom]

28. If I'm following, what's being suggested is just to show that you have the medication

so you can explain the positive piss test and get your surgery. You don't need to pay for it regularly, just buy a small amount out of pocket if you need to so your surgeon will do your surgery.

You may not even need that, just a letter from your PCP saying he prescribed Marinol to you for nausea on date x.

edit: If I were you I'd get an "as needed for nausea" prescription for the Marinol, fill it once, keep it until it expires and have it around to explain away any hot tests.

[sam sarrha]

5. go to your local head shop, order on line.. next day deliv/2 day etc.. plead false positive >>Link>>

this is what i'm referring to, not perscribing...:hide: :yoiks:
http://www.alwaystestclean.com/how_long.htm

its what the Army gives stoners that want to join...

[Chan790]

6. Doesn't wipe better, more-comprehensive and expensive medical-grade test...

I know, I had a friend in college that got screwed by that fact. Tested clean for his Army physical and then when he got poisoned by his idiot girlfriend, who claimed she knew what she was doing, fed him some wild mushrooms; left a bit to explain.

[CaliforniaPeggy]

7. How I wish I could help!

All I have are these: :hug: :hug: :hug:

I hope with all my heart that someone here can help you...

[Wiley50]

12. Thanks Peggy Can I come live with you for 6 months?

[sandnsea]

13. Some doctor will have to operate

He can't not treat the bladder stones no matter what they found in your system. Do you have an advocate who can raise hell for you? You need to find one somewhere. That's bullshit.

Didn't they put you on some kind of nausea medication during your Hep C treatment? They did for my husband, and anti-depressants, ambien, norco, a bunch of stuff.

[Wiley50]

14. They tried every anti-emetic they knew of. nothing worked

The advocate idea sounds good. Where and what kind do I find one

[sandnsea]

17. After friends and family

You look to local agencies. Veterans, homeless and low income advocates, places like that. Your hospital should have a social worker, ask to see him/her. There should actually be some kind of chaplain at the hospital too. You might have a hotline that is designed to direct you to the right agency so you don't have to call a bunch of people. Since it's Medicaid, there's probably a state ombudsman person at the capital too. Even the Governor's office has an ombudsman type person. It can take a lot of phone calls to get someone to help you, but there is almost always someone out there who can, eventually. The problem is having the stamina to make the calls. Which is why a friend or family member usually needs to do it for the person in need. Hope things get better for you.

[emulatorloo]

15. Could you tell the whole story to the Urologist without involving your nurse/doctor?

Along the lines of you had reasearched the issue and found patients in your situation could get relief with Marinol/medical marijuana, so you decided to self-medicate? and tried a single joint. And that you had gotten relief?

Hang in there.

[Cleita]

16. Hi Wiley50

Here's a website that might help: http://www.medicalmarijuanablog.com/

You might be able to get the Marinol at a much better prices on line. Best of luck to you.

[renate]

19. k&r to help keep this on the radar

I'm so sorry.

Can the doctor really refuse, on medical grounds, to carry out a procedure that has nothing to do with whether or not you've been smoking pot? You may be able to contact the hospital ombudsman or hospital social worker, explain your situation to someone whose job it is to actually listen, and (gently and politely) explore the possibility that the doctor is behaving unethically.

Can an ER physician refuse to treat somebody who's been in an accident after driving drunk? No. He can't even refuse to treat someone who's hurt other people as a result of driving drunk, no matter what his personal opinions on driving drunk might be. So on what conceivable grounds, other than assholery, can the doctor refuse to treat you?

[Wiley50]

23. The Name of the Hospital says it all. It's BAPTIST HOSPITAL n/t

[lovelyrita]

20. So sorry for your situation!

My Mom had Hep C from a blood transfusion in the 80's. I know how hard it is to go through the treatment. :hug:

[Greyhound]

21. Man, I'm sorry.

:hug:
:kick: & R

[HysteryDiagnosis]

22. From a blog, you may be able to benefit from it.

http://www.medhelp.org/posts/Hepatitis-C/HRs-supplements-plus-other-anti-fibrotics/show/1060347


HR's supplements plus other anti-fibrotics
by mhudnall, Sep 24, 2009 12:34PM
Let's try again. The following list of supplements are for those not currently on INF treatment. To be clearClear by design
Clear eyes
Clear eyes acr
Clear eyes clr
Clear-atadine
Clear-atadine children's, no one is making the argument not to treat with INF. But if you are not on INF treatment, if you have failed treatment, if you cannot treat, or if you are waiting to treat, then these are supplements that may help your liver.


The following is a list of HR's list of supplements:

http://www.medhelp.org/user_journals/show/4497

They include:

"A multiMulti symptom cough and cold
Multi vita bets and fluoride and iron
Multi-betic
Multi-day
Multi-day plus minerals
Multi-day with calcium and extra iron
Multi-day with iron
Multi-delyn
Multi-delyn with iron
Multi-symptom nighttime vitamin/no iron

1000 mg of Salmon Oil (epa=160 mg / dha=240 mg / omegaOmega-3
Omega-3 polyunsaturated fatty acids
Omega-500 3 = 400 mg) x1

1000 mg of Flaxseed Oil (ALA/omega 3 450 mg / omegaOmega-3
Omega-3 polyunsaturated fatty acids
Omega-500 9 110 mg) x1
Raw flaxseed/ 1 teaspoon dailyDaily combo
Daily multiple for men 50+
Daily multiple for women
Daily multiple for women 50+
Daily multiple vitamins
Daily vite
Daily-vite men's formula
Daily-vite weight control

Hepatapro PPC (900 mg) x 2
info: http://www.medhelp.org/posts/show/346752 ;


Resveratrol (500 mg) x1 and x2 (alternate every other day)
info: http://www.lef.org/resveratrol/
source: http://megaresveratrol.com/


NAC--(n-acetyl-l-cysteine) A sulfurSulfur
Sulfur precipitated
Sulfur soap
Sulfur sublimed
Sulfur topical
Sulfur-benzoyl peroxide topical
Sulfur-sodium sulfacetamide topical
Sulfur-sulfacetamide sodium topical compound that is a precursor of glutathione and protected sulfur-containing amino acid (600 mg) x2 with Vit C (500 mg) x2
Info: http://tinyurl.com/9yopf

TMG (750 mg) x 2
http://www.raysahelian.com/trimethylglycine.html

Taurine (500 mg) x 2
http://en.wikipedia.org/wiki/Taurine

Life Extension Super Curcumin W/Bioperine 800Mg 60 Caps (800 mg) x 2 / Powerful Antioxidant Properties to scavenge free radicals
Anti-Inflammatory Actions
Enhances important detoxification enzymes Curcumin increases the secretion of bile by stimulating the bile duct. It also protects the liver by detoxification, stimulating the gall bladder and scavenging free radicals. With the help of the adrenal glands, it inhibits both platelet aggregation and the enzymes which induce inflammatory prostaglandins. Curcumin may also help break down fats and reduce cholesterol. Large doses not recommended in cases of acute bilious colic, obstructive jaundice, painful gallstones, and extremely toxic liver disorders



Sylmarin (425 mg) x 2 / Milk thistle provides hepatocellular protection by stabilizing hepatic cell membranes.

Green Tea Extract (300 mg) x 2 /
info: http://tinyurl.com/ypdp9q

Coq10 (200 mg) x 1 / http://tinyurl.com/29em8c


Colon complete complex contains:
Fiber complex (2000 mg) x2
Lactobacillus F19 probiotic (14 mg) x 2
Lactospore prebiotic (20 mg) x2

I use Smartbomb.com as a source except for the Resveratrol.

I will go with Lactulose amd Lactobacillus GG when I use up what I have."

_________________

Many of the above supplements on HR's list are anti-fibrotic and anti-inflammatory. He makes clear that they should not be used while treating with INF.

[bananas]

24. k&r & good luck. nt

[nashville_brook]

25. since when do docs refuse to provide potentially life-saving treatment based on a secret piss test?

since when is pot use any of their goddamn business. i fucking hate doctors, i really do. i've had experiences that are almost as bad as this -- well, yeah, as bad or worse. and, i get it about the medicaid problem. you've got the worst of the worst in that pool of docs.

do you have a tip jar or a PayPal where we can send money (would that even help?) -- i'd gladly pitch in for the Marinol to follow Chan's idea. Or whatever. and yes, Baptist sucks. St Thomas isn't much better...but it was better in my experience than Baptist.

What if you go in to the ER in a crisis with the stones? would that bypass the crappy doc situation?

[Wiley50]

26. Thank You Brook

I just got off the phone with my primary care doctor who also does my pain management. He understands about my Hep C and needing something that will keep me from throwing up. Even though, as my pain Doctor who usually does drug screens, he has secretly agreed to not do drug screens on me for the 6 months I'll be on interferon. He's a real friend as well as my doctor.

He was obviously upset about my surgery being canceled yesterday.
He said, unless I start having great pain (in that case call an ambulance) come in as early as possible Monday morning and he'll try to find me a urologist at Summit Hospital (the one I prefer). I just hung a florescent light above my bed and noticed that the bottom 6 inches of the tube going into the bag is clogged with a pasty calcium goo. Intermittently my bladder feels very full and I have pain. If I have solid pain I'll call an ambulance, if not I'll wait until Monday morning.

I always need money being on SSI and will need a lot to pay for the herbs I'll need for 6 months on interferon so if it's not against the rules my paypal is my email: wiley54@hotmail .com But I'm not soliciting donations, its up to you since you offered. My Gastrointestinal nurse-practicioner is in on the secret as well as my dr. Just the three of us.

[nashville_brook]

27. this is such good news. having a doc who can advocate for you is essential.

i'm actually heartened and amazed that there's health care professionals in TN who can deal with MMJ issues on the downlow. when i was going thru the worst of my pain situation a few years ago, Mj was the only thing that really did the trick. there's something about the opiates that doesn't really work for me. i also know what it's like fighting nausea. i had pancreatitis during this time, and also have migraines that semi-regularly spiral into day-long puking extravaganzas. luckily the usually meds work for me with the nausea.

something that people need to understand with the entire health care situation is that between the insurance problems (or inability to pay), and the war on drugs, people who are seriously sick and in pain are treated like criminals. and it's the worst thing in the world that can happen to you -- right when you need support the most, someone is invading your body chemistry to determine if you're moral enough to deserve medical treatment. god, it's a difficult, unfair world we live in.

all my best -- please take care.

peace -- b

[undergroundpanther]

34. wiley,wish I could do something..

This quote from Nashville Brook says it all!
"something that people need to understand with the entire health care situation is that between the insurance problems (or inability to pay), and the war on drugs, people who are seriously sick and in pain are treated like criminals. and it's the worst thing in the world that can happen to you -- right when you need support the most, someone is invading your body chemistry to determine if you're moral enough to deserve medical treatment. god, it's a difficult, unfair world we live in."

Question is how do we get selfish comfortable people that don't care to care?


Add mental health issues to the mix and you get treated worse than shit.People supposed to help are so sure I must be an addict,when I am not.They gave me tylenol for neuropathy pain ! I just whimpered and writhed as I waited for hours for no help with the pain. They sent me home telling me to take tylenol. When I left I could barely walk.

Another time I was injured by
falling down a flight of 12 stairs. The EMT's put me in a collar and strapped me to a board for transport..After I was off the ambulance,in triage I told the nurses restraints trigger me and to please take them off ASAP. But did they listen? No because I have PSTD they just kept me tied down. If you come in with a psych history,even when the problem has nothing to do with your psych history,they'll treat you like a rabid dog. Never mind I had a neck collar on and was in a lot of pain, and warned them the restraints were freaking me out...nooo I had to totally lose it before they bothered to take the restraints off.I have PSTD and medical assistance so they can justify all sorts of neglect and cruelty to themselves.

I hope that dickhead urologist gets kidney stones and no one helps him.
Why are there so many assholes in "caring professions"? Or do I run into the assholes because of having medical assistance?

[Freddie Stubbs]

36. Some procedures may not have have desired results if you use certain substances

For example, orthopeadic surgeons will often refuse to operate on a patient who will not quit smoking, as smoking will hinder bone healing.

[niyad]

29. k and r--wish there were more I could do to help--sending good thoughts and healing vibes

glad that you have good people on your side there.

[Naturyl]

30. Shit... I'm considering being tested for this myself.

If you have a spare minute (and I'd understand if you don't), I wouldn't mind hearing what initial symptoms to look for, because things have been acting up with me and I suspect it's my liver...

Anyway, this sounds like a rough situation with no easy answer. Do you have a lot of friends? Specifically, any who smoke? If so, and since I know exactly how it is to live on SSI (for the last 10 years), your only option might be to hit friends up for a bowl. Still, that's hardly a solution, as even with the best and most generous of friends, it wouldn't be enough.

Do you know anyone who could sell to you very cheap as a favor? I know it's a long shot, but your OP doesn't suggest a whole lot of solutions.

Maybe the answer is to move to one of the 13 states. That's a huge decision but if you're stage 3 of 4, it sounds like maybe it's time to do whatever is necessary. Don't concede your life because of foolish, misguided laws. Do what you gotta do.

Just my 2 cents, best wishes to you.

[ChicagoSuz219]

32. Go NOW to any ER & ask/demand that they treat you...

...if they say 'no,' call the local tv station. They're required to treat you, by law... with or without insurance. Don't mention the primary doctor or nurse practitioner -- just the urologist. If the pot comes up, just say you bought a joint from a college kid in the park.

When you feel a little better, sue the crap out of the 'doctor' that left a catheter in you for a month! Be sure to go after his license, as well.

I know a great Medical Malpractice lawyer in Chicago. I don't know where you live, but I'm sure he would recommend one to you. Contact me when the time comes.

In the meantime, I'll keep you in my thoughts & prayers.

Now... get off the computer & go to the ER!!

[Wiley50]

33. It's Sunday Morning and National Guard Fighters are doing fly bys over me every 3 minutes

I slept well.60 mg of morphine and 10mg of valium tends to guarantee that. But I was up until 3 am trying to clean the silt out of te catheter in a very unorthodox way:

I cut off the straight part at the bottom of a wire coat hanger, washed it well with antibacterial dish soap, wiped it down with isopropal alcohol, let it air dry so it wouldn't burn, coated it with Bacitracin with pain relief, and fed it up through the valve at the bottom of the catheter bag all the way to the flared out part at the top of the bag where it becomes the tube ( getting it through the flap thingy was the hardest part) and stirred up the silt in the flared out part (which let a lot of urine through giving me a lot of relief. From there the tube was too narrow to go any farther as it was just packing the silt tighter into the tube so I stopped there. But, it really let a lot of urine and back pressure out and off. Then I took my bedtime pills and that was the last thing I remember. This morning there was only about an inch of urine in the bottom of te bag, but after a couple of cups of coffee it started filling and I felt well enough to bake a pear cobbler. It's in the oven (a toaster oven, this is a sailboat after all.)

I think I'll be able to survive until 8 tomorrow morning when I'll be at my primary care doctor's office when his office girls can find me a new urologist and hospital.

I have bearable pains every now and then but they go away in a few minutes. I swear, I've never rubbed myself down there so much and it didn't feel good.

Thanks for all the encouragement last night.

[Wiley50]

35. UPDATE TUESDAY MORNING

My primary care doctor sure was pissed (probably the wrong word) when he saw the catheter almost totally silted up, barely anything flowing. His girls are trying to find me a new urologist.

I've been up since 2 am doing the coat hanger treatment and working my way through a 12 pack. Switching to coffee now both of which make me piss like a horse, flushing out white flecks of silt and the occasional large one with blood in it.

My primary care doctor did a piss test too, but not the drug screen this time. 5 minutes later he came back in to tell me I had a serious urinary infection. Funny the urologist didn't find the infection, only the pot I smoked 3 weeks ago.

He prescribed Cipro. Remember Cipro? That was the drug Cheney put everyone at the White House on a week before the Anthrax Attacks that only got sent to the Bush administration's enemies, Dan Rather, a couple of senators who were about to kill the Patriot Act. Killed a few people including a writer for the National Enquirer who had just done a derogatory story on Bush's daughters.

They never found out who did it.

CIPRO!

[EFerrari]

38. Can't you lodge a complaint against Dr. Hack Urologist

who is obviously trying to dump you as a patient? If he didn't "find" the infection, I mean?

[Wiley50]

39. Well Beth, If I sued him it would involve the primary care and gastrointestinal nurse-practicioner

Doing that in a state that doesn't have MM laws would ruin their careers.

They have been good and loyal to me and I'm gonna do the same for them.

But I sure wish I could sue the old fart

But I just can't. It would ruin not just their careers but also my treatment, treatment that could save my life.

[EFerrari]

40. I understand. But would a complaint to AMA

have the same consequences for your other providers?

[pipi_k]

37. Lots of people don't realize...

how dangerous being a carpet/flooring installer can be.

My son has been doing it for a long time. He once got a nasty staph infection in his knee while installing carpet in a hospital. He's also had a couple of operations on his shoulder and wrists.

His boss has a special relationship with a local orthopedic doctor to take care of the constant stream of muscle and tendon injuries for his employees, and yes, I've heard the stories of what can happen with the cutting knives, knee kickers, and some of the other tools of the trade. Lots of blood...stitches. Scars.


anyway, I'm sorry for your situation and wish I had some advice for you. I do hope your situation improves and everything works out alright.

[Ms. Toad]

41. As the mom of someone who will eventually need a tx

One of the things you need to do is become a compliant patient - or you will quickly become ineligible for a transplant. Whenever you want to do something your doc disapproves of make sure you talk to him and win him over to your side in advance.

The sad reality is that there are fewer livers available than the need for them. Aftercare requires compliance with medical protocol, or the liver gets rejected. From the time you are diagnosed with an illness that potentially needs a transplant, all of your medical care is one big audition. If a tx physician has to choose between two patients for a liver, all other things being equal, s/he will give the liver to the compliant patient.

That said, I hope your hepatologist can find you a urologist who will buy in to the treatment plan you need to get you through the interferon treatment. My SIL was diagnosed at stage 3/4 and she has not progressed at all (her liver is actually slightly improved since diagnosis) - combination of medical treatment and radical lifestyle change.

[Wiley50]

42. Just Had The Most Wonderful Phone conversation with my Primary Care Doctor. Wish I could tell it all

here but, it's much too public. Suffice to say that I was told I didn't have to worry about urine drug screens from now at least until I finish the therapy and probably as long as he's my doctor. I had asked if he had to turn in positive results to anyone and be forced to discharge me as a patient. His answer: " No, my records are my records and they are completely private and the results are between us only. Boy, having your primary care doctor do your pain management is MUCH BETTER than having to go to a Tennessee Pain Clinic!

I had left word for him to call me ( he ALWAYS does) to tell him that 3 doses of Cipro, Lots of liquids and some helping clear my catheter by greasing it with antibiotic ointment. holding it firmly as high as possible so it doesn't pull out completely and with the other hand pinch it as high as possible between my thumbnail and forefinger and slowly sliding it all the way to the bag, pushing the sediment ahead of it into the bag where lots of liquids flush it on out. I have been doing that several times a day and the urine in the tube is almost clear.

I was so happy, I smoked my last bowl ( just ordinary everyday but fairly good bud.

Now all I need is a six month source of med grade bud at a price I can afford. It's harvest season so it shouldn't be too hard. (Hint Hint)

Thanks for all of your kind words these last few days. I was scared out of my mind.

[dysfunctional press]

43. that's one of the reasons i refuse to go to a 'pain clinic'...

my doctor can handle my pain management just fine- and he has no problem with my pot use.

i hope things work out for the best for you.

[earthboundmisfit]

44. Oh Wiley I am just catching up - sounds like you have a good primary care doc

But I am so sorry to hear what you've been going through. More in email after a bit. Damn I wish I could do something to help. Healing vibes & Love, Mish