SOS for a Concerned Member - Hepatitis Message Board

Risky Business · 04-12-2003, 08:12 AM

Dear members: I am usually in the addiction/recovery forum. I just went to pick up some records from my local hospital that has blown me away.

Back in mid November 2002, I became ill and was finally admitted for suspicion of congestive heart failure. My was very pale and could barely walk. They suspected also that I had GI bleed because I had them before.

So, next I was given a transfusion because my hemoglobin was 5 or 6. While in the hospital, I was given extensive blood tests, and told I probably had luekemia. So, as you may guess, I thought I was dying and I may be.

After the transfusion and catscan, it showed enlarged spleen and liver. After a week, I was released on what they called an out patient to follow up with bone marrow test and liver test. I thought things may be ok.

So I followed up with my family doc. My family doc did not treat me while I was hospitalized. So, before all this happened my doc had been treating my intractable muscle and bone spur/pain, nerve impingement, etc......with hydrocodone which I had been to pain clinics and being rxed 6 10mg= 60mg hydro a day for the intractable pain.

I began to suspect that the tylenol in the hydro that I had been taking probably had caused my liver damage. I am sorry to do all this rambling and background, but I figure for somebody to help, they may need to know some background.

My question if anyone could please assist is why did nobody ever tell me before or when I was released that I had hepatitis C? Next, what is most likely my courses of action which I am sure they will do a biopsy next. My doc said that they released me way too early and I was not treated properly.

I have read about the treatment of shots to try to kill this virus. I have heard terrible side affects. I must honestly say that the reason I was on hydro was that my body was giving out and since I could not function without pain meds.

Basically I am ahead of myself here but my family doc now says with this liver problem, he is not thrilled about managing my pain. He has switched me to oxycontin which I think should have been done years ago.

But I took the path of least resistance and just took what they rx for my horrible intractable pain. I honestly have had so many physical dilemmas I am not sure if my body can take much more.

Can anyone please tell me what I may expect and one of the factors will be pain management. My doc already knows my quality of life would not be good or even civilized.....so what gives?

Will I be told that either stop the pain meds(oxy) or die with hep C? I cannot believe that the hospital released me and did not say a word about hep c. I could have been treatment started 4 months ago. They were talking luekemia back then. I may still have the bone marrow....test...but by being released made me wait 2-3 months for consults for liver.

Any info anyone may be willing to share from someone who has been thru this would be greatly appreciated.

Thanks and God Bless, Risky Business

thanbey · 04-12-2003, 09:52 AM

The first person to ask why you were not told (or tested) would be your primary care provider.

Compounding that error, he prescribed a medication with a tylenol. The error was that all the follow up would have ocurred before the crisis and so would the follow up biopsy.

So, let's hope your primary care doctor has learned something.

Next, you should be seen by a neurologist. There is plenty of literature now regarding the nervous system and HCV pain. There are also better medications for your pain. I won't name them because that gets to be a bit dicey, I think.

We have a neurologist who knows about HCV and pain who will ask PROVIDER questions. He is HA Aronow MD and can be reached by your doctor at AskDrAronow at hcop dot org.

Hepatitis C is very rarely fatal, but the combination of too high doses of tylenol is one of those things that can suddenly cause death. The bleeding is curious and should be followed up on as well. What caused this?

Lastly, the treatments are rough. The little you have said here may suggest that they might not be appropriate for you. That is yet to be determined by a specialist.

With or without treatment, you can live a relatively normal life and do quite well. Presumably, you do not drink or smoke cigarettes (this is implicated in liver damage AND perhaps the GI bleeding also) Try to stay out of smokey places and avoid fumes and toxins (paint, gasoline, etc)also.

So much will be determined by the biopsy, which is an absolute MUST unless your GI bleed will not allow the procedure. They may fear that you will bleed and thus not want to risk it.

Read through past messages. There is a lot here. You can also do a search (up left)if you see someone you would like to read more from.

Stick around and welcome!

Best Thoughts,

thanbey

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[This message has been edited by thanbey (edited 04-12-2003).]

DirtDiva · 04-12-2003, 10:17 AM

Dear Risky Business,

Wow...you've been through a lot. Sorry you've had to go through all this. I'm not sure what ALL you health problems are and what you are taking. Sounds to me like you need a WHOLE SET OF NEW DOCTORS! You've fallen into the trap of seeing different doctors for different things and no one is talking to each other about it.

I'm only guessing here but do you think you received (or know) that you contracted HepC when you had your transfusion? If so you mentioned that was in 2002 real recent, correct?

If that IS indeed the case that you have only ACUTE HepC, where I believe (it's only my personal opinion) you can take the "wait and see" approach. Meaning monitor blood levels, perhaps biopsy the liver and keep an eye on things. Address some of your other medical conditions then go on to the HepC.

I only even suggest the biopsy as it sounds like you've taking A LOT of drugs. Drugs are filtered through the liver. The liver takes a bad hit with drugs add HepC to that then the liver is working triple time.

I would suggest finding a specialist and start from there. My husband was seeing a regular doctor for years and he never caught on to his HepC problems, Oh he KNEW he had HepC but I think since it wasn't his specialty, he just never addressed it. HepC is also a special blood work-up that most doctors won't ask for in normal blood work.

Hence, the reason why they probably let you leave the hospital without knowing. Also, if you indeed DID get the HepC from the blood transfusion THEY gave you......they certainly would not want to address that... their fault, they would never admit to it. Same thing happen to my sister when the hospital gave her an infection that put her into a coma for 1 month. 5 years later she's stilllllllll working on the case. They never said "Hey, by the way we infected the needle when we stuck it in your chest" Nope, they let us research, investigate and then hire a lawyer before they coped to anything.

I would get into see the specialist ABOUT YOUR HEPC, this was it's addressed, he can evaluate where you're at....THEN proceed with the other things. When my husband was seeing our primary care doctor he was in for 3 different things....this doctor only wanted to approach the HepC (it was the most urgent) and forgot about the ear infection and leg pains. See, so address 1 thing at a time because doctors sooooooo get involved in the "one thing at a time" trap.

Let me also mention, and I'll be honest and frank here, you've got a lot of medical conditions other than the HepC and yes, treatment at this point may make you even sicker....you're already sick as it is with your other conditions.

Although it's important for you to address the HepC you've recently contracted(?), your chances of dying of HepC specifically are slight. Most people die of other liver related problems. HepC is just another thing that effects the liver, add other things that effect the liver......THEN the liver starts going out...once the liver starts going out it causes other medical problems.......so HepC is just 1 link in the chain of events that happens to the liver.

These are just my own personal opinions, I'm no expert and certainly not a doctor or nurse. Sounds to me like you're on top of your illnesses and keeping an eye on things. I hope this helps and I know there are others that may respons that are far more knowledgable than I am.

Take care of yourself,
Susan

Risky Business · 04-12-2003, 12:27 PM

Susan and Thanbey: I am so delighted and pleased that you Veterans were kind enough to talk with me. I have been on Pain Support Boards and was a Mod for about a year. I was very sick then...mostly based on coping with intractable pain.

Boath of you make excellent points. I do know that the transfusion caused the acute hep C and I will clarify that I was tested in the hospital for hep profile and I finally went to the hospital and got my own records.

It makes me feel cheated that at no time that I had hep c but was told high suspicion of Luekemia and enlarged spleen which they were talking about removing. It is a good thing I asked some questions and did not allow them to just remove the spleen.

My doc did not follow up as you state....but he is not on the hospital staff...so he asked a nother doc to admit me. The past times I had GI bleeds were thought to have been from GERD and ulcers....

However, I have now had 4 scopes in 4 years and none said I clearly had ulcers. My therory is that before I ever touched a narcotic pain killer, I was taking Advil about 10 a day. That was from severe pain. Then I went to 2 different pain clinics which with all my health problems basically rx pain meds every 3 months.

All of this complicated by the fact that I suffer from panic attacks and have been taking zanax for years. Is there any wonder? I do not feel sorry for myself, But in sincerity, some people may have not made it thru what I have and the hits just keep on coming...no pun.

I have to laugh to keep my sanity. As far as seeking a new set of docs. I have done that several times. They will not admit it...but lets face it...I am a liability for most docs. With my symptoms and dx.

I do not drive and I have checked on the handicapped transit systems. The liver specialist did act like he did not wish to do a biopsy unless it was absolutely nessessary. You guys explained that part because I do have a bleeding problem.

I had always heard that insurance and money had lots to do with treatment. I do have medicare. I worked 2o years. Also, I am shocked that being told by most every doc I have seen that my liver function was high...that they did not request hep c profile long ago. or they did and just never told me. Did they not have a responsibility? Because I had been drinking a beer or 2 on the weekends. Those days are over.

That's why I am in addiction and recovery. I do not think I am addicted but I need to keep my eyes wide open and focused. I have yet to tell all about my physical problems because it sounds like a dead man walking. I think that when the docs see my weight and numerous serious potential surgeries that I need, they may be thinking exactly what I think...if I am so bad sick I do not wish to be sliced and diced.

The surgery list include carpal tunnel, Bone spurs, the neuro said he cannot pinpoint all the nerve damage in my spinal cord. The ortho surgeon says, that I will still probably require pain meds the rest my of life. It all mixes up to be a bad situation.

I keep hoping tommorrow will be a better day and I have NOT given up. I would have already if I were going to do that. I am still considering new set of docs....I am so weary and tired from the same old things and outcomes. I am not sure it benefit me to change a set of docs. My primary does care. He had me admitted even if it was by another doc when the hospital allowed me to sit in the ER throwing up black tar(which was blood).

I find it difficult to keep the docs appointments I have now. If either of you or anyone wishes tom ask more questions, feel free. This board is my only hope of receiving reliable info imo.

God Bless and Thank You,

Risky Business PS. I am 42 and married without children. I have rwecently wanted to just check in the hospoital for exhaustion. Then it dawns on me...they trew me out when I had syptoms of luekemia...well actually I was feeling better because of the transplant I suppose.

[This message has been edited by Risky Business (edited 04-12-2003).]

askherjohn82 · 04-14-2003, 07:14 AM

i can relate to your situstion somewhat.i contracted this threw transfusion in /82,i have had 2 other transfusions, last one was in /90. i learned that i have this 4 years ago.like what the heck, but then again they weren't looking for hep in blood work they did while i was in the hospital having surgery.and as for pain, i hear you "loud and clear", i have a spinal deterioration, that has r/a,along with shoulders etc.i have learned to live with the pain, but for the days when"i've had just about enough", i take advil gel caps for "migrane" i won't take tylenol at all (my choice),that seems to subside the pain, i just have to live with it, and as you well know (it's no picnic in the park).hang in there maybe one day there will be some pain meds that we can use that is safer, maybe better on our liver rather than tylenol.
keep the faith, bless you...................mj