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Heart breaking mistakes, misinformation
I have to first say HELLO to all here, I truly miss u, this site, being here. My sincere apologies that my business (is soaring!), great family & life simply keeps me too busy, not enough hours in a day. I am also going to post on the 'post interferon' thread, but even with post issues, I am grateful to be ABLE to be so busy, handle it all now.
This thread, is a mix of wake up call (for ones with ignorant Dr's.) and the reality of this disease. My apologies in advance that it may scare some or bring some fear, but it IS the reality of where Hep C can end.... and that it will be long! It is a story of a recent event in my life, that has deeply hit my heart.
About 1 yr ago, my middle son, 'Mr. Social Butterfly' called me to pick him up at a party, on a lake, beautiful house, nice people...as he was drinking. (GOOD boy! He no longer drinks at all BTW, decided he made dumb choices when drinking and said 'I don't need this -11 mths ago! Not even a daily drinker, just did stupid things, lol. I know people twice his age that cant figure that out!) I met the man that lived there, who had watched over his friends. A nice 34ish young man, who also road a bike so we began to talk. He stated 'my mom is just like you, still watches over me & will come anytime, but she's very sick now'. I said "I'm sorry, can I ask what?" He says "Hep C'! I said " Let's go talk!" I spent hrs with this kid (to me) and he was a mess, her condition was very bad, she was only 53. I strongly suggested they go to Shands after hearing her treatment, care thus far (not good). That meeting was meant to be.
We remained in occasional contact since, I tried to go meet her several times but our schedules could not meet.
We left 'info, update' messages back & forth. Then I didn't hear from him for mths, no returned calls.
Forward to the night before my BIG Halloween party. I am at my other job, trying to rush & get home. I get a call from him, he say's please wait, he's coming there. He was a mess, beyond anxiety when he arrived. He-they could never get her to go to Shands. He than begged me to go see her in the Leesburg hospital (30 minutes the other direction from my home) to please beg her to go to Shands. She is now in end stage cirrhosis, bleeding internally, very bad. While I know the odd's at this time, I agree to go. I had to. He ask me to go alone, try to persuade her to sign and go to Shands. I get there, find her room, walk in quite nervously as I have never met her. I get by her nurse, saying I'm her sister. This woman, Shawns mother, was incoherent, but said 'I know who you are?' I tried to talk to her, she could not make sense, even stay 'with me'. She kept passing out. I finally said a prayer and quietly walked out. I have not heard back yet, but I know the outcome, if not already. Her nurse 'hinted' , it's over. This woman is my age. A wonderful mother. She has not drank or done drugs for years. Her life is over, at 54. Shawn is breaking my heart. His text killed me "please, my mom is my life'. I can't help her, it's just too late.
The reason for my story.......... 5 yrs ago, I found out, her 'Doctor' clearly told her ......"You can not get a transplant because your cirrhosis, Hep C was self inflicted". Yes, I checked this out with all of the family, yes. one was with her and heard him. No, she never pursued other Dr.'s. She trusted hers.
This, the lack of education, INCORRECT care and info.....has got to change :(
This thread, is a mix of wake up call (for ones with ignorant Dr's.) and the reality of this disease. My apologies in advance that it may scare some or bring some fear, but it IS the reality of where Hep C can end.... and that it will be long! It is a story of a recent event in my life, that has deeply hit my heart.
About 1 yr ago, my middle son, 'Mr. Social Butterfly' called me to pick him up at a party, on a lake, beautiful house, nice people...as he was drinking. (GOOD boy! He no longer drinks at all BTW, decided he made dumb choices when drinking and said 'I don't need this -11 mths ago! Not even a daily drinker, just did stupid things, lol. I know people twice his age that cant figure that out!) I met the man that lived there, who had watched over his friends. A nice 34ish young man, who also road a bike so we began to talk. He stated 'my mom is just like you, still watches over me & will come anytime, but she's very sick now'. I said "I'm sorry, can I ask what?" He says "Hep C'! I said " Let's go talk!" I spent hrs with this kid (to me) and he was a mess, her condition was very bad, she was only 53. I strongly suggested they go to Shands after hearing her treatment, care thus far (not good). That meeting was meant to be.
We remained in occasional contact since, I tried to go meet her several times but our schedules could not meet.
We left 'info, update' messages back & forth. Then I didn't hear from him for mths, no returned calls.
Forward to the night before my BIG Halloween party. I am at my other job, trying to rush & get home. I get a call from him, he say's please wait, he's coming there. He was a mess, beyond anxiety when he arrived. He-they could never get her to go to Shands. He than begged me to go see her in the Leesburg hospital (30 minutes the other direction from my home) to please beg her to go to Shands. She is now in end stage cirrhosis, bleeding internally, very bad. While I know the odd's at this time, I agree to go. I had to. He ask me to go alone, try to persuade her to sign and go to Shands. I get there, find her room, walk in quite nervously as I have never met her. I get by her nurse, saying I'm her sister. This woman, Shawns mother, was incoherent, but said 'I know who you are?' I tried to talk to her, she could not make sense, even stay 'with me'. She kept passing out. I finally said a prayer and quietly walked out. I have not heard back yet, but I know the outcome, if not already. Her nurse 'hinted' , it's over. This woman is my age. A wonderful mother. She has not drank or done drugs for years. Her life is over, at 54. Shawn is breaking my heart. His text killed me "please, my mom is my life'. I can't help her, it's just too late.
The reason for my story.......... 5 yrs ago, I found out, her 'Doctor' clearly told her ......"You can not get a transplant because your cirrhosis, Hep C was self inflicted". Yes, I checked this out with all of the family, yes. one was with her and heard him. No, she never pursued other Dr.'s. She trusted hers.
This, the lack of education, INCORRECT care and info.....has got to change :(
sad story....but i have to say it's great to hear your doing so well....good luck with everything....billy
Your all so great ;)
I honestly think that a lot of these Dr's mistake the fact that one has to be 'clean & sober' for ....6mths or a yr is it?? to get on the list, with 'you did this to yourself' type thinking. This lady was for yrs. I also NEVER understand how ANY Dr doesn't take each patient with a serious issue and do HIS research to help them! ie: a GP Dr knowing he's not a liver expert, a GYN knowing she's not a heart specialist, etc. Often they are making these statements on yrs old 'education', not current knowledge, what they learned in med school yrs ago. Only a liver specialist would know the newest tx's and so on. Like mine saying 'you'll die from something else first' and I was half way to cirrhosis already, which he DIDN'T know and wasn't ordering test for! Had I listened to him, I'd have most likely been in full blown cirrhosis......in 5-7 yrs per my liver SPECIALIST.
My father raised me saying 'if your going to do something half assed ;), don't do it at all" ...I live by that and sure as h*ll any Dr. should !
(and yet my wonderful 80 yrs young father said last wk, as I am remodeling some, "your too dam picky"...of which I replied "yes, and I got that from you:)!"
OH....your so right, the FIRST thing I did was educate myself on this, my illness. So many do not know this. My ex...'love of my life', that I left 14 yrs ago due to alcohol issues, developed cirrhosis, he went down fast & gave up in August 09 and killed himself ( the day after my sis died at that!) He had no good insurance & I truly feel his Dr did not push a liver transplant for him. This has been devastating to my step kids life's and mine. He was only 56.
Brent, a great example also of TP's and success. Thanks for kind words :)
Isa...(((hugs))) to you too ;)
Eureka....yes, it's unbelievable how few know to seek other advice help and how often this happens!
Marcia, hey there.
Keep 'living with the living' all and let's spread our own experience out there!
Huggggsss....LL
I honestly think that a lot of these Dr's mistake the fact that one has to be 'clean & sober' for ....6mths or a yr is it?? to get on the list, with 'you did this to yourself' type thinking. This lady was for yrs. I also NEVER understand how ANY Dr doesn't take each patient with a serious issue and do HIS research to help them! ie: a GP Dr knowing he's not a liver expert, a GYN knowing she's not a heart specialist, etc. Often they are making these statements on yrs old 'education', not current knowledge, what they learned in med school yrs ago. Only a liver specialist would know the newest tx's and so on. Like mine saying 'you'll die from something else first' and I was half way to cirrhosis already, which he DIDN'T know and wasn't ordering test for! Had I listened to him, I'd have most likely been in full blown cirrhosis......in 5-7 yrs per my liver SPECIALIST.
My father raised me saying 'if your going to do something half assed ;), don't do it at all" ...I live by that and sure as h*ll any Dr. should !
(and yet my wonderful 80 yrs young father said last wk, as I am remodeling some, "your too dam picky"...of which I replied "yes, and I got that from you:)!"
OH....your so right, the FIRST thing I did was educate myself on this, my illness. So many do not know this. My ex...'love of my life', that I left 14 yrs ago due to alcohol issues, developed cirrhosis, he went down fast & gave up in August 09 and killed himself ( the day after my sis died at that!) He had no good insurance & I truly feel his Dr did not push a liver transplant for him. This has been devastating to my step kids life's and mine. He was only 56.
Brent, a great example also of TP's and success. Thanks for kind words :)
Isa...(((hugs))) to you too ;)
Eureka....yes, it's unbelievable how few know to seek other advice help and how often this happens!
Marcia, hey there.
Keep 'living with the living' all and let's spread our own experience out there!
Huggggsss....LL
Thanks for sharing this story to remind eveyone here......Docs aren't the last word!!! Anytime a diagnosis such as this is given....get another opinion!! All of us must do the research and be the managers of our care.
Sorry....now that I'm off the soapbox, I just want to say that that fellow is lucky to have met you. Trust me, having met you...I know what a dynamo you are and such a positive influence and source of energy.
((((HUGS)))) and much love to you and your family,
Isobella
Sorry....now that I'm off the soapbox, I just want to say that that fellow is lucky to have met you. Trust me, having met you...I know what a dynamo you are and such a positive influence and source of energy.
((((HUGS)))) and much love to you and your family,
Isobella
LL,
I think that the doctor who cared for Shawn's mother should have his anatomy rearranged. The head should be on the "outside".
Anyway, this is truly a tragic story. That could be me if I hadn't had some caring doctors. Thanks for the post. It is always great to hear from you.
Lady, everytime I hear "oh you'll probably die of something else first ..." repeated by someone, I cringe inside.
Also glad to hear your life is keeping you so busy, though I miss seeing you around here. It is heart-warming to know you still think about folks here. Take care and stay well!
Brent
I think that the doctor who cared for Shawn's mother should have his anatomy rearranged. The head should be on the "outside".
Anyway, this is truly a tragic story. That could be me if I hadn't had some caring doctors. Thanks for the post. It is always great to hear from you.
Lady, everytime I hear "oh you'll probably die of something else first ..." repeated by someone, I cringe inside.
Also glad to hear your life is keeping you so busy, though I miss seeing you around here. It is heart-warming to know you still think about folks here. Take care and stay well!
Brent
How terribly sad for Shawn and his mother. So many people put their unquestioning trust in a single doctor and follow recommendations and orders blindly -- I see it every day. The unfortunate thing is so many people forget that their doctors are regular human beings, with human flaws and fallacies, with capacity for misjudgment and error.
The doctor who cared for Shawn's mother needs some serious re-education. To think that options are excluded when a medical condition is self-inflicted is completely preposterous, and that a physician would even conceive of such and tell a patient that without looking into current protocols is absolutely outrageous. Truly underlines the the very necessary reality that EVERY person should educate themselves about their health and any existing health conditions. We should listen to our doctors, but it's important to question everything and gain understanding -- and above all, be informed and pro-active on your own behalf.
Thanks for posting this, LL -- it's tragic what happened to this family, but perhaps you telling their story will help someone else before it's too late. Hugs to you. ~eureka
The doctor who cared for Shawn's mother needs some serious re-education. To think that options are excluded when a medical condition is self-inflicted is completely preposterous, and that a physician would even conceive of such and tell a patient that without looking into current protocols is absolutely outrageous. Truly underlines the the very necessary reality that EVERY person should educate themselves about their health and any existing health conditions. We should listen to our doctors, but it's important to question everything and gain understanding -- and above all, be informed and pro-active on your own behalf.
Thanks for posting this, LL -- it's tragic what happened to this family, but perhaps you telling their story will help someone else before it's too late. Hugs to you. ~eureka
Thanks Marcia, my naivety shows about this virus but it's a sad reality that we need to become experts on it, and here is the most honest place to learn. Good thread guys, although I have finished tx I am realising that I'm not finished with this site and will keep it a priority bookmark.
My mouth is wide open in shock.
I just turned 55 when I had my tp and was living on 8% of my liver, The surgeon said I'd probably have only lived another 6 weeks.
Despite not having insurance and loathing the idea of a transplant, I took the reins in my hands and drove that damn horse home!
Having a good helpmate makes the difference. He let me choose and I could have lain on a beach and withered away but I chose to walk on the planet a bit longer.
Also not one of the many doctors I saw made me feel bad about the virus or the past. The past is just that and we can only go forward, not back.
Shame on those doctors without compassion, they are in the wrong field of work.
The woman who has passed on is at peace though those who remember her may be distraught.
I just turned 55 when I had my tp and was living on 8% of my liver, The surgeon said I'd probably have only lived another 6 weeks.
Despite not having insurance and loathing the idea of a transplant, I took the reins in my hands and drove that damn horse home!
Having a good helpmate makes the difference. He let me choose and I could have lain on a beach and withered away but I chose to walk on the planet a bit longer.
Also not one of the many doctors I saw made me feel bad about the virus or the past. The past is just that and we can only go forward, not back.
Shame on those doctors without compassion, they are in the wrong field of work.
The woman who has passed on is at peace though those who remember her may be distraught.
Windstune, like you, I am ashamed of nothing in my life and unwise youth choices likely gave me Hep C, but for over 30 yrs, clean living, so they 'estimate' I , like sooo many, had this for 30 yrs before dx. I too had elevated LFT's....for 10-12 yrs! I got all my past labs, it showed. None checked! It was an acupuncturist that finally discovered this! (long story!) and sent me back for blood test. Her family is seeing a lawyer on this, but like most , probably won't get anywhere. I had a lawyer actually ask ME to investigate my case of same Dr 10 yrs, failure to dx (he was a friend of a friend, heard the story) and it will fall on 'proving any permanent damage'....which will never happen AS we can never 'prove' what is caused by what!
NY Deb....Hi hun ;) I was in your town in May, going back sometime this yr. No guilt, I didn't hear that in time to scream 'BS'. But we know this happens so often :(
As soon as the Dr (same office, 10 yrs, after I went in & said 'check my liver!')...
finally found it and said "oh you'll probably die of something else first, why are you crying, you can 'live' with this'....I was out of there on on to Shands. I just wish many others KNEW to do that, seek other advice, etc. Many do not know that!
IMStacie, yup, I and many were in that mix of 'oh your fine, your depressed'....or 'oh, you look great, it could be pre menopause'....always blowing off my symptoms to that crap. Elevated LFT's were there for yrs...and in my records was 'drinks occasionally' , etc.
If nothing else, the lawyer that opened the can of worms at my Dr office, big branch, several Dr's, has made them AWARE there!
NY Deb....Hi hun ;) I was in your town in May, going back sometime this yr. No guilt, I didn't hear that in time to scream 'BS'. But we know this happens so often :(
As soon as the Dr (same office, 10 yrs, after I went in & said 'check my liver!')...
finally found it and said "oh you'll probably die of something else first, why are you crying, you can 'live' with this'....I was out of there on on to Shands. I just wish many others KNEW to do that, seek other advice, etc. Many do not know that!
IMStacie, yup, I and many were in that mix of 'oh your fine, your depressed'....or 'oh, you look great, it could be pre menopause'....always blowing off my symptoms to that crap. Elevated LFT's were there for yrs...and in my records was 'drinks occasionally' , etc.
If nothing else, the lawyer that opened the can of worms at my Dr office, big branch, several Dr's, has made them AWARE there!
Yes of course you are right, guess I was confusing the aggravating symptoms when drinking when un-diagnosed, I quit alcohol nearly 3 years ago and have noticed a marked improvement. I am being treated in Spain because my GP in UK said I had tendinitis (you know with the joint pain) but refused to take it further and as I didn't have a clue I was Hep C I accepted it.Eventually I became so ill I went to emergency in Spain and was diagnosed within a fortnight.I had Hep B in 1978 and was cleared but before I had my kids in 1987 I had a battery of tests for HIV and Hepatitis, how come the Hep C didn't show then?
In addition to the bad medical treatment and advice, there are many people who have HepC and don't know it just because their doctors don't know enough to test for it! My liver enzymes were elevated for three years before I was tested. During those years I had never even heard of HCV. I just knew something was amiss with the elevated enzymes and keep pressing the doctors. Finally found a doctor who ran a battery of tests, one of which was for HCV and it came back positive.
PS Windstune you can't get hepC from an excess of alchol when you were younger and it doens't like "dormant" you might not have been aware it was there but the damn virus was doing its crappy job all that time and that is why you experienced signs now.
But you can't get it from drinking that is for certain as it is a blood to blood contracted disease.
But you can't get it from drinking that is for certain as it is a blood to blood contracted disease.
I'm sorry dear Lady that is absolutely just heart breaking. There are just so many fools for doctors out there - what a damn shame she got one of them and never got a second opinion. Probably figured it wasn't worth the embarrassment or something. What a shame to leave her son like this when something could have been done about it. You tried so dont take on any of the guilt there was just nothing you could do.
How heartbreaking.
How heartbreaking.
Thanks for the heads up LL, you are right it is scary but for all of us very much a need to know. The stigma attached to Hep C never ceases to appal me, I don't know how I contracted Hep C because as you know it can lie dormant for many years, it could be the excess alcohol in youth brought on by serious abuse from a young age, or the few years of escaping my reality into a drug haze, it could be from the times I spent in India, it could be one of my tattoos...... my symptoms didn't emerge until 2 months after my last tattoo.... it could be any of these things but naturally it is assumed to be drug drink related. I am not ashamed of my life, I survived the only way I knew how, I learned many hard lessons but am a better person for it. I have just finished tx 52 weeks on interferon/ribavirin and am proud of that achievement my husband, kids, extended family and friends have all stuck by me because they love me.... ME not an ex-addict, not a reformed drinker, not a survivor of sexual and physical abuse, but li'l 'ol ME!! Sure it was tough, I was anti-social, I drew my curtains for weeks to shut out the world but they all knew it was the treatment and if anything didn't accept my constant apologies. To be judged on the merit of who you are is wonderful and rewarding, being judged and ostracised for a virus I cant fully explain is not, I have fought tooth and nail to reach age 51 and being aware of the possible outcome of Hep C gave me the strength to complete the toughest year of my life. The Stigma associated doesn't affect me too much as I know who I am but it is cruel and unnecessary to those who are vulnerable.
Correction, he's 30, she's 56, and after I found out the Dr. said that , not long before, I pressed to change Dr's. ! She was in control of her own care, wouldn't go. This too, is sad. She's very incoherent often, very tired of being so sick, had given up.
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