Treatment and lack of treatment

[amell]

Because of doctors who don't seem to care I've pretty much quit caring myself, but the swelling is getting out of control and so has my addiction to pain medication which makes me very hesitant to go back to the doc. I had been on the waiting list for treatment then got bumped off for drinking. I very rarely drink now, but I still have the occasional glass of wine with dinner which I can easily live without. My addiction comes from untreated pain after injuries to my legs and hands a few years ago. I had put a hatchet into my knee a while back, but because of my addiction history the docs refused to provide any pain relief despite a huge chunk of my knee getting destroyed. I didn't really have a lot of choice of whether to self medication or not. The pain at the time was such that I couldn't walk at all. Prior to the injury I had been free of pain medication for several years.
I've had this disease for a long time now, probably going on closer to 30 years than 20, but to be honest I've lost track..
I'm also a caretaker. My 89 year old father lives with me and he's unaware of my addiction issues and I'm not going to tell him. It would absolutely break his heart and he would blame himself despite the fact he's had nothing to do with it. Kind of leaves me unable to seek treatment and I can't leave him alone more than a few minutes, sometimes hours at a time..
Anyway, the abdominal swelling has gotten to the point it's difficult at best to even fasten my pants half the time..
I don't know if taking diuretics would help or not, but I'm going to give it a shot.
I've lived with this disease the better part of my adult life now with few side effects, but it's catching up. I've never been so tired as I've been these past few months. I will sleep 8 hours than take naps on and off all day and still want to sleep more. My simple hobbies like woodworking just sit there getting nowhere and the yard maintenance season is closing in fast..I have a feeling that yard beautiful will be yard ugly this year..I just don't have the oomph to get out there to do it..
I'm just not sure what to do anymore. I want to get in treatment for both addiction and hepc, but the former becomes a very judgmental kind of issue with doctors and I have some serious doubts they'll even bother treating hepc for someone with untreated addiction issues.
The last time I was on the list it was drinking that got me bumped back even though I had successfully quit using pain meds through 10 years of methadone treatment . I had quit drinking for a year then addiction reared its ugly head and now I'm back to square one. I hate to admit it, but I've been waiting for my father to finally pass on to get in treatment, but he just keeps on ticking. It's beginning to look like he's going to outlive me then it'll be some yet to be determined other family member's task to care for pop. It's a real rock and a hard place situation.
To make matters worse for years I didn't really care whether I lived or not, but over the past several years I've grown much closer to my own kids and have no desire for them to have to go through grieving about my own demise. Just discussing any of these issues with my son really upsets him. He's already expressed his own depression with me and I worry about his mental health if I'm not around for him..
IDK.. Perhaps I need to just open up with my father and hope he can understand and not blame himself, but he suffers from dementia among his many other health issues. Nearly every day he tells me how proud he is that I was able to get off of heroin and then methadone.. How can I tell him I've failed and back to square one?  I don't use street drugs because I have a clean supply, but it's still addiction that needs to be addressed and now ascites with my liver.. Oy.. Too late we get smart, huh?

[Lynn K]

Hi amell

So sorry to hear of your very difficult situation.

With your stomach being greatly enlarged that could be a sign of advancing liver disease.

Have you been diagnosed with cirrhosis? Ascities can get to the point of the patient looking very pregnant and requiring to have drains done. Also the fluid can become infected called SBP which can cause sudden infection and death.

I understand it is difficult but if at all possible you need to get clean so you can get treated for hep c and stop causing additional liver damage. If not for yourself you have others counting on you.

If you continue in your current direction you could be looking at needing a liver transplant to survive which you won’t qualify for because of drugs and alcohol.

I urge you to find help anyway you can to get away from alcohol and drugs sadly they won’t help you if you don't.

I don’t want to bring you any further down but you have to find a way to get clean. You can turn this around for yourself and for your family but you have to start today.

Please get help with your addictions either Al-anon or professional counseling whatever it takes. You have to get clean to save your life. It is only too late when you are dying right now you still have time to prevent this.

Sending you all my best
Lynn

[amell]

Thanks Lynn.. I wish it was all cut and dry as it sometimes seems, but it isn't.
The Mrs and myself have been considering selling the house after my dad is gone and going on to live the tiny home lifestyle with whatever time we have left, perhaps get a travel trailer or other living arrangements .. We've both been long term caregivers and have seen up close and personal the difficulties and hardships many elderly people face when they can no longer take care of themselves. Getting old and feeble in horrible health doesn't particularly appeal to either of us and neither of us really want to live through the inevitable grief that goes with it.  In other words neither of us wants to live without the other so we've been making plans in that respect. Without getting overly morbid we have a plan to check out on our own terms. We're not young folks and our offspring already know roughly our plans for old age.
I suppose the last question is at what point do we know our time has come to move on to the next phase? We're the only ones who have these answers and it's still very much up in the air.
I've lead what I consider a good life for the most part. I haven't stolen nor lied my way through life and have loved my family as best I could, but the bottom line is that neither of us really wants to go through the last years of life in the care of doctors and nurses and dragging it out to the last possible moment and leave every last cent to medical care providers.
We have the opportunity to make sure our life savings goes to the people we love and care about instead of some faceless corporate entity.
To this end we're going to have our last moments on this earth on our own terms and if that includes some dreaded diseases that went untreated then at least be excluding the typical extended hospital stay and the complete draining of everything we ever worked for.
We can and probably will make sure there won't be any questions as to who gets what and no family squabbles over some junk stashed away in the basement that's utterly unimportant in the grand scheme of things.
Maybe we're putting the cart in front of the horse and maybe not.  I'm going to see what the docs have to say about things and if I have a great chance of full recovery or even a decent shot of several more years of being OK that's alright too, but if it boils down to a few years of miserable struggles we don't have the desire to prolong it to satisfy someone else's ideas of the end of life.

[Lynn K]

Well obviously I don’t know your medical situation but even if you do have cirrhosis with treating your hep c and clean living you can live a long and full life with good quality of life.

I was diagnosed with liver cirrhosis ten years ago and I am doing fine.

Really just hate to see you giving up when it is entirely possible you could be able to enjoy a much longer life by getting clean and treating your hep c. But that is entirely up to you.

I have a couple of favorite quotes I try to live my life by

Do not go gentle into that good night

Dylan Thomas, 1914 - 1953

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.”


My other favorite is

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”

Hunter S. Thompson


I am not one to give up the fight especially while one still has a fair chance. I am not so quick to lay down my armaments and slip gently away.

I hope when you speak with your doctor they feel you can continue to live a normal life if you will do what you need to do to get there. Your health is a partnership with your doctor you have to be willing to do your part.

[Lynn K]

Just to add that dying of advanced liver disease and cirrhosis can also be a long and horrible death. No matter what your decision is I would strongly suggest you treat your hep c to avoid walking that long road of dying from liver failure.

I could go into detail of the ways that liver cirrhosis can end your life but I will leave that research to you.

https://transplant.surgery.ucsf.edu/conditions--procedures/end-stage-liver-disease-(esld).aspx

[andrew j]

Hi amell,

Your story sounds perfectly reasonable, and you appear to be a good and responsible son and father.
It's unfair that you should get caught up in the health system the way you have.

You need a break!

As Lynn says - if you've got abdominal swelling (and are suddenly feeling tired all the time) - it's definitely time to get that Hep C treated.
Another round with your doctors (or better doctors) is a good idea.
You need to know exactly what you're dealing with.

I wonder about the possibility of buying your own meds (generics) if 'the system' isn't forthcoming?
A lot of people have done that.

I had Hep C for 40 years, and was really unwell for 20 of those years (together with some other stuff that happened because of the Hep C) - so I know how it can get.

You deserve better!

Thinking of you - and hoping that you are doing OK today.

A.

[KimInTheForest]

Hi Amell. Don't give up on yourself even if it seems your current doctors have!  Do everything possible to get some doctor somewhere to start treating your Hep C. You will be cured in 12 weeks, and that will solve a huge part of your health problems over time (maybe not immediately). It may take time and persistence to find a doctor responsible enough to ensure you are treated. Your addiction to pain meds should NOT stop a doctor from treating you for Hep C!

As for your pain med addiction, could you use CBD oil instead for pain relief? Get off the pain meds that way?

best,
kim

[northfork]

To Lynn K


Are you sure you want to use Dylan Thomas and Hunter Thompson quotes in this case? Read up on their respective ends.

[Lynn K]

Dylan Thomas pneumonia and medical error exacerbated by excess alcohol consumption.
https://www.google.com/amp/s/amp.theguardian.com/uk/2004/nov/27/books.booksnews

Hunter S Thompson suicide

Unfortunate deaths but for me does not negate the sentiment of their prose. When I was diagnosed with hep c I started to live. I became a skydiver and learned to fly airplanes. I also ride motorcycles.

“.....skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”

I guess my hope if there is such a place as the pearly gates is to arrive covered in mud in a cloud of smoke as the above suggests.

That is how I would prefer to go as opposed to slowly ebbing away in a hospital bed dying of liver disease.

Congrats on your upcoming one year SVR

[Salal]

Are you sure you want to use Dylan Thomas and Hunter Thompson quotes in this case? Read up on their respective ends.

Dylan Thomas was an alcoholic, but he also had weak lungs and died of pneumonia.  Hunter Thompson had numerous medical issues, and decided quite rationally to end his own suffering by suicide.  Regardless of their troubles, I appreciate their contributions to culture. And I am hardly above the fray, myself.

[northfork]

Dylan Thomas was bragging he had 18 whiskies and and suggested it must be a record shortly before he died. He was only 39 and I bet he could have survived his lung issues had he not been continually drunk. Hunter Thompson shot himself while he was on the phone with his wife, who had gone to her gym in Aspen to work out.

Just saying these are not great examples if the idea is to counsel someone who is thinking of giving up on being cured.

[Lynn K]

I wasn’t speaking about the specifics of the lives of these men. Only that for me some of the sentiment expressed in their works gives me strength in difficult times. Of course everyone has their own motivational words they chose to best guide themselves. I am not saying what works for me works for others. Just like not everyone has no desire to take up skydiving as a way to affirm living life.

Just to add I am not a medical professional or counselor just a parient who had hep c for 37 years was treated a total of five times four unsuccessfully. I have been living with liver cirrhosis for 10 years now and my background is primarily as a blue collar worker.

So what works for me may not work for everyone. In other words YMMV

[northfork]

I think I have offended, and I apologize. Your points are well taken. Best wishes.

[Lynn K]

No worries just wanted to to express I make no claim at being wise or profound I just know what works for me and hoping that maybe it might help someone else.