HealingWell
Search Close Search
☰

On the other side of "no treatment"

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
1 2 34 5 6
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/15/2010 2:20 AM (GMT 0)

Sandi, that was very unprofessional of the doctor.  Does he know that he is dying?  Is Mike still drinking?  If so, that could be behind the attitude.

Hugs,

Connie

Posted 4/15/2010 7:17 AM (GMT 0)
When professionals act like that you feel like giving them a right slap. How dare he!!!! I think depression would be part of it, if he is still drinking he prob would be thinking he is going anyway so why stop, although that is wrong. when i think of my mum she is slowly dying but she still does not realise it, still in denial not coming to terms what the drink is doing to her. She has been told many times, too many to count but still it does not register. You look to the doctors for guidance and help through this hard time, he should do his job.
Posted 4/16/2010 1:30 AM (GMT 0)
NO MIKE IS NOT DRINKING!!! somewhere back in the threads... awhile ago.. I wrote about his decision to quit although it came too late... these reactions just plain have to do with the medical profession not know how to handle end of life issues... one Dr down in the Mayo clinic .. a Hispanic man.. from Colombia.. was deeply affected... he got down on his knees... with tears in his eyes... and went on an on about how there was nothing that he could do.. called Mike his "brother".... it may sound touching... but to Mike... he knew it was the "kiss of death" and he came home and didn't move for fear of dying for a month... and we both withdrew from each other... at least now... we're together agin...Mike would have responded better to simple information.... this "demonstration of affection" was hard for Mike... and it was done more for the doctor than the patient... at least that's what Mike's take on it was... however, I shouldn't be so hard on him... at least he expressed some concern...
Posted 4/16/2010 1:36 AM (GMT 0)

There probably isn't any "good" way to give someone the news that they have six months to live.... but hopefully one could do it professionally and compassionately... with some boundaries ... it gives the person dying the opportunity to grasp the information... everyone goes to the "experts" with the thought that they have some "treatment" or "trick" or new research that will help.... and there are those of us who walk out of the dr office on the other side of "no treatment" into no man's land... there we find dr's who do not want to provide even maintenance medications, psychiatrists who ask why aren't you dead... u look yellow.. and everyone pushing for hospice care... when it's not time yet... and that is Mike's choice... to wait until the very end for hospice... and I support that decision... everyone want's the thoughts to turn to death.. we refuse and have decided to live in this no man's land... and face death when his physical condition becomes worse... for now he continues to do pretty well and is independent in all things and shows no mental confusion... he has parencentisis once a month... Sandi

Posted 4/16/2010 1:37 AM (GMT 0)

Sandi, I was pretty sure you said he had stopped drinking, but just wanted to clarify.  So there's no excuse for the bad treatment by medical professionals.  Even the one who felt so badly was unprofessional.  I think you're right--they don't know how to deal with end of life.  They spend years learning to treat and heal the sick and they have a hard time dealing with defeat.

Hugs,

Connie

Posted 4/16/2010 2:55 AM (GMT 0)
Connie, We agree on most things, but I believe you're being too kind to these particular doctors. Get another doctor(s), if they aren't treating you right. Doctors are people and some people are a#&holes. When my grandmother had leukemia (at 63), the doctor said he'd let her go, if there was no hope. Then he wouldn't when she was totally gone(turns out the doc was catholic). Why, because he said she had a 1 in 35,000 chance of living another 3 months if another round of chemo worked. At the time, she was in a coma (and stayed that way) for 3 weeks. That was 1977 and her care while in a coma cost $22,000 a week. Today, it would have been 10 times as much. When I was first diagnosed with Hep C, I saw a gastro and was ready to begin interferon/ribavirin. He was supposed to call me to get it started in a week or two. about 3 weeks later, I hadn't heard from him and called his office. Over a month later, dozens of calls and messages not returned. I got to know his receptionist pretty well, because she began apologizing when she'd hear my voice on the phone, I called up and thanked him for his help. My PCP was aghast and angry when I told him. He found another doc, this time a hepatologist, who was great. Since then all my docs have been superb. Find a bad doc, can him. This is your life, we're talking about. Sorry for the rant. **David**
Posted 4/16/2010 4:03 AM (GMT 0)

David, in this particular case, I doubt that Mike is going to want to "doctor shop."  He's terminal and knows it.  He's seeing a psychiatrist for depression, but who wouldn't be depressed with a death sentence hanging over his head?  Sandi, is Mike taking antidepressants?  Is that the main reason for him seeing this doc?  I know the Mayo doc was months ago.

Hugs,

Connie

Posted 4/16/2010 8:39 AM (GMT 0)
SANDI
Posted 4/16/2010 5:22 PM (GMT 0)
Exactly Wellbutrin... which has worked very well for him... David ... normally I would say the same... but we live up here by Fargo,Nd and the doctor we're seeing is the only specialist here... and all we really need right now is a referall for the parencentisis... and some medication follow up... the psychiatrist.. well... by the time we'd get into another one Mike could be gone... it takes quite a long  time to get into one... I was able to clip his wings a little bit and get him in line... and last time.. a couple months ago... the psychiatrist was "angry" "ballistic" that he didn't know about the trip to the Mayo clinic... well it came inbetween his appointments.. and he went on and on about getting releases from the Mayo... like he couldn't trust what we were saying... and that was when we needed him the most cuz we were just reeling from the news...  this time I told him what use are releases.. I said these doctors do not care if the Wellbutrin blows his liver up.... and I repeated it three times while he went on... meanwhile... Mike was quiet... actually this time... sorry to say I told Mike to just tell him everything was fine the dose was fine and let's just get out of there.... and Mike did... we just needed the stupid prescription refilled... it's a shame they get fees now.. for what they used to do over the phone... and I will not have these releases sent over .. there is not reason... the Liver doctor knows all about the Wellbutrin and he would be the one to discontinue it.. well that was a lot of talk... thanks for ur concerns... we're hanging in there... thank you so much for all your support... it's the only place in the world we're getting it right now... Sandi
Posted 4/16/2010 6:59 PM (GMT 0)
Sorry folks, It's just that I hate to see people treated so badly. I'm not looking for hand holding, but a little humanity goes a long way. Other than one doc that dropped the ball, all the rest have been wonderful. I've been lucky. Obviously, not everyone hasn't. **David**
Posted 4/18/2010 3:16 AM (GMT 0)
Hello Diana and welcome to HealingWell.  Your pastor is right.   Look to the lord.  Whatever he has in store for your husband he will get you through.  This is one tough journey and your faith will be a great help you and your husband.  

Also can you please start a new thread.  It's so easy to over-look new members when they reply to someone's thread.   I don't want anyone to miss you.     Take care.....thoughts and prayers........

Posted 4/18/2010 4:09 AM (GMT 0)

Whatnext, welcome to the forum.  I also suggest you start a new thread (click on New Topic instead of Reply) to introduce yourself and your situation.  We don't want you to be overlooked.

I also wanted to tell you that I believe God works through people.  I was diagnosed with HCC in 2005.  My tumor was huge, occupying the entire right lobe and had metastasized to the inferior vena cava.  Shands Hospital said there was no hope for me.  So I went to Mayo Jacksonville.  Next month, I will have 4 years cancer free, thanks to the treatments and surgery by some very skilled and knowledgeable physicians there, and a lot of people praying for me, which I believe creates positive energy.

Has your husband gotten a second opinion?  My thoughts and prayers will be with you both.

Hugs,

Connie


Posted 4/18/2010 5:08 AM (GMT 0)
While my Faith is ever strong... and I draw on it daily for strength... I have chosen to abide by the forums rules regarding sharing religious beliefs... I trust God for the path that Mike and I are on... He will guide us... and whatever method He chooses and whatever path we must take... we accept... for now we just put out trust in Him... and keep on keeping on... Sandi

Posted 4/18/2010 5:12 AM (GMT 0)
UR exactly right Connie about not Dr shopping at this point... although.. I see the clnic sent out an apointment slip with a new Dr name on it... have to find out what that is all about.. must be the heptalogist on vacation or something... but... there is no reason to Dr shop at this point... we just need medication filled... parencentisis ordered... and simple things... and in the end... hospice care.. but that could be a while... Mike is holding his own... and the way I see this thing with him... it's a slow process... for now... and the Dr. at Mayo said his tumor was a slow growing tumor... so there's hope for time... anyways... that's that for now.. he's still mobile... and moving around... so we keep on keeping on.. Sandi
Posted 4/18/2010 9:30 PM (GMT 0)
i am glad that Mike is holding his own and still managing to be mobile. he must, you must make the most of your time together. I am sure he will know himself inside when he is ready for hospice. Most of the doctors do their best they all might not have the right manner, but I am sure their heart is in the right place. Thinking of you both.
Posted 4/20/2010 5:46 AM (GMT 0)
well that was a follow up to the urologist... Mike had kidney stones a while back... probably won't go... they have passed. (kidney stones) and no reason for another dr trip... follow up hepatologist... next Tuesday... probably do a parencentisis... but still holding in there.... me and my little yellow man... turn
Posted 4/20/2010 11:26 PM (GMT 0)

Sandi, I agree...no need to go to urologist if his stones have passed and he's okay in that area.

Hugs,

Connie

Posted 4/21/2010 6:14 AM (GMT 0)
Farmboy, I have deleted your post for the following reason:

11. No posts of an overtly political or religious nature OR posts promoting advocacy of particular personal, medical, legal, religious, political, or non-profit causes.  The forums are intended for offering mutual personal support.  Debating controversial subjects should be taken elsewhere.  Limited religious references are allowed (ie. "my prayers are with you" or a brief quote as part of a larger post), but the forums should not be used to convert others. 

 

Additionally, you must not have read all of Arneeb's posts.  Mike has unresectable, untreatable liver cancer.   Ascites is the least of their problems.

Post Edited By Moderator (hep93) : 4/21/2010 12:41:59 AM (GMT-6)

Posted 4/21/2010 8:00 AM (GMT 0)
I have not idea whatsoever of what you are even talking about, political, religious or otherwise, My entire post to Sandi and Mike was solely based on my own personal experiences and similarity to his "own condition", and in the spirit of wanting to be of sincere help, to convey to the both of them that there is an alternative method that does in fact work. I should know, since I too was sent home to die, but am now well.
I'm sorry, but I just can not believe that another individual is capable of keeping anyone in a death room, unaware that there is a simple treatment available to him, just because you do not know of it, nor believe it yourself.
This is wrong to pass such a judgment at the expense of another persons life.
You may be an moderator, but in my opinion, you are wrong in both your assumptions and evaluations.
Whatever happened with free-will choice? Should not one have the right to decide there own course in life, without having it dictated to them?
I would imagine that you will delete this post also, simply because "you" disagree?
I'm sorry for my ranting, but I am in shock for what has been done here.

Post Edited By Moderator (hep93) : 4/21/2010 3:28:06 PM (GMT-6)

Posted 4/21/2010 12:48 PM (GMT 0)
I understand Farmboy that you are trying to help... I can hear your concern... you should not assume that people do not have faith here because we deal with the medical aspects and psychological aspects here... Mike and I probably are on the same page as you... however... I choose to abide by the Forum's rules in sharing any deeper than I have in that area... I leave Mike and I's path in the Lord's capable hands... but I will use every tool... every method in our hands to go forward.. and this forum ... Thank G-d for it... is one of them... thanks for your concern Farmboy... thanks for your response Connie...

and now... today will have to take Mike in... he's struggling... pain in lower back.. hard time breathing... and just plain overall weakness that hasn't been there before... came home from work to find him this way.. probably gonna have to get someone to come in now.. when I'm at work.. don't know how gonna make that happen.. but that's where the faith thing comes in... ok... thanks all.. and please pray those who do.. Sandi

Posted 4/21/2010 12:52 PM (GMT 0)
Thank you Connie for deleting that post... I think I addressed that subject a little earlier in a post also... because one does not share faith in this Forum does not mean they do not have faith... thanks... Sandi
Posted 4/21/2010 1:09 PM (GMT 0)
I'm not sure what FB2 said, but my feelings are probably diametrically opposed to what most people on this forum think. I'll make it simple. I believe in my doctors and myself. Period. **David**
Posted 4/21/2010 7:44 PM (GMT 0)
Thank you Connie for allowing me to communicate further, and I am sorry if my above post was unfitting, it is not my intentions to intentionally go against any of the forum rules, as I do understand they are there to help protect all parties concerned. I know too, that I have been known to be a little thick behind the ears at times, I guess it comes from being too use to having to get things done myself, such as when things need to be fixed etc.. but this is no excuse either. For what it's worth, I am sorry and ask for your forgiveness.
Before I respond to Sandi's post, could you tell me if I'd be allowed to post the names of a couple of clinics within driving distance from Fargo, the doctors at these medical clinics, the phone number of their clinic's, who specialize in advanced liver, cancer, disease cases?
These doctors are not found within the main flow of traditional cancer centers, but thanks to my brother, who is the CEO of one of the largest cancer research centers in the northwest, I learned of these specialty doctors who do show a very high success rate in shrinking tumors, clearing up cancer and Hep.C too.
Unfortunately, I was not offered any means for effective treatments at the research center, and yes, I too had liver cancer, along with kidney failure, ascites and belly button hernia, but that was a year ago.
I know how this must sound, a bit unbelievable, but they are truly there and available.
I just want you all to know that my heart breaks for what both Sandi and Mike is going through, and though I couldn't agree more concerning faith, but I can not ignore this urging inside of me from wanting to reach out and be helpful either.
Again, please forgive me for my compulsiveness and failures here. Thank you kindly..
Posted 4/21/2010 8:37 PM (GMT 0)
Farmboy, if Sandi (or anyone else here) is interested in the information you have, it should be communicated through e-mail.  This is nothing personal against you, just forum policy.  With some sites online "anything goes."  This is one that adheres to certain policies to prevent it from becoming a free-for-all.  Please add your e-mail to your profile so that others who wish to pursue this can contact you.  I am happy that you found something that worked for you.  I did, also, though it was a medical treatment.  And I also believe that faith and a positive attitude can go a long way.

Sandi, please let us know the results of Mike's visit today.

 

Posted 4/21/2010 9:17 PM (GMT 0)
Mike is in the Intensive Care Unit.... has pneumonia... kidney failure.... heart is under stress and struggling... Mike did opt for treatment... I told the Dr for now to attempt to treat... considering the stability Mike has had... ammonia levels were high.. treating that... adding lactulose... potassium levels were off... treating that... his gases are improving... and he had low blood pressure... possibly due the fact that he was still on high blood pressure medications... and we were warned that this could happen.. feel badly about that.. but blood pressure responded it was 60/28 when he went in and his temperature was 91... but he's responding... and the agreement with the doctor is if he goes into failure after this that it's a dnr... dr says don't know if he'll make it through the night... so hard to tell... thanks for being our advocate here... that's why I like this place it's a safe place.. with some guidlines... thank you ... thank you.. Sandi
✚ New Topic ✚ Reply
123456