Hi all its schoolbusmom, I am in week 6th of treatment now. I had to go over the weekend and get two units of blood transfused. I was anemic and my doctor called on a friday, telling me that he had called in two scripts for me and I needed to start these immediatly because my platlet count was down to 70,000. When I went to go get the scripts the drug store said my insurance company needed my doc to send a statement why I needed these drugs cause one was quite expensive and an injectable, so is considered a specialty drug. By the time I called doc back, he was closed for the weekend. I panicked and started feeling so much worse that I said screw it and went to er. Where there they did a new blood test and said you need a transfusion now. So now I am on my way to see the doc, to tell him I can’t afford the 600.00 or the 900.00 a month for the meds to stop the anemia. So anyho, the doc in the er took me off all my hep c drugs till I see my doc today, so its been a little spa break for me these last two days, I was in so much mental agony and afraid I am close to snapping. The pegasus and ribiviron are my freakin worst nightmare. And of course everyone says you got to stay positive, upbeat, IF ONE MORE IDIOT SAYS THAT TO ME I MAY HAVE TO GO TO EITHER THE LOONEY BIN OR PRISON. OR BOTH. I am afraid to tell the doctor how very depressed and angry I am in fear of being put in straight jacket and left in a corner some where. I spent the weekend alternating between one minute laughing so hard it hurt to crying the next moment and back again and again like a freakin yo-yo. My husband is scared I can tell, I asked him if he thought I had lost my mind and he said I don’t want to go there. I told him to take me to the nut house, put me in a wheel chair face me in the corner and turn and run like hell. I am reallly reallly scared I am losing what little sanity I have left now. Has anyone felt like this before? please say its a side effect please…I have had all the others in the med guides for the drugs and plus some no one has heard off. any suggestions? I thought about going to a shrink but am afraid I will look over and see her slicing her wrists repeatadly before I even get to the hep c things…MY mind is like putty. I feel so sorry for myself its sickening, I KNOW IT BUT CANT STOP IT. PLEASE ANSWER BACK IF AT ALL POSSABLE… THANKS
Oh my dear - sounds like you are going through sheer hell - I wish there was
something I could do…but them I’m so seldom on the computer - I am sure
someone else has responded to you by now and I am hopeful that you have
climbed back into reality and gotten a good dose of epo for red, and shit - can’t
remember the name of the one for white cells - it was thicker and harder to
inject and made my bones hurt - that’s all I can remember. There is a very
good help for these injectibles called “curascript” most insurance companies
work with them and the cost is seriously less and they deliver -so its
convenient. As for the mood/mind swings - yes, yes, yes - my husband and daughter
knew to not pay much attention to my rantings and or crying jags. I decided
not to take anti=depressants during treatment - but have been on them ever
since I finished - it is a side effect and one that causes a lot of folks to
have to quit. Please know that it isn’t a crime not to not be able to handle
the drugs - they are poison (ribavarin) and it is natural for your body to
reject them and the interferon is such an immunity booster it pushes all kind of
things to the surface. When I finished 45 out of 48 weeks - my docs finally
told me that not many patients made it as far as I had - who knew…so try
to calm down - yeah right - and get some rest - and enjoy your respite from
the “poison” - I had to take a couple of weeks off in the middle when my
counts dropped -didn’t have a transfusion though - my sister did and she said it
made her feel good -like full of energy - gave her a new appreciation for
vampires…lol…
In love and light,
Patsy
In a message dated 9/23/2008 10:19:05 A.M. Pacific Daylight Time,
hepatitis-c-cpt10428@lists.careplace.com writes:
~--------------- sent via careplace.com
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Hi all its schoolbusmom, I am in week 6th of treatment now. I had to go over
the weekend and get two units of blood transfused. I was anemic and my
doctor called on a friday, telling me that he had called in two scripts for me and
I needed to start these immediatly because my platlet count was down to
70,000. When I went to go get the scripts the drug store said my insurance
company needed my doc
to send a statement why I needed these drugs cause one was quite expensive
and an injectable, so is considered a specialty drug. By the time I called doc
back, he was closed for the weekend. I panicked and started feeling so much
worse that I said screw it and went to er. Where there they did a new blood
test and said you need a transfusion now. So now I am on my way to see the
doc, to tell him I can’t afford the 600.00 or the 900.00 a month for the meds to
stop the anemia. So anyho, the doc in the er took me off all my hep c drugs
till I see my doc today, so its been a little spa break for me these last two
days, I was in so much mental agony and afraid I am close to snapping. The
pegasus and ribiviron are my freakin worst nightmare. And of course everyone
says you got to stay positive, upbeat, IF ONE MORE IDIOT SAYS THAT TO ME I MAY
HAVE TO GO TO EITHER THE LOONEY BIN OR PRISON. OR BOTH. I am afraid to tell
the doctor how very depressed and angry I am in fear of being put i
n
straight jacket and left in a corner some where. I spent the weekend
alternating between one minute laughing so hard it hurt to crying the next moment
and back again and again like a freakin yo-yo. My husband is scared I can tell,
I asked him if he thought I had lost my mind and he said I don’t want to go
there. I told him to take me to the nut house, put me in a wheel chair face
me in the corner and turn and run like hell. I am reallly reallly scared I am
losing what little sanity I have left now. Has anyone felt like this before?
please say its a side effect please…I have had all the others in the
med guides for the drugs and plus some no one has heard off. any suggestions? I
thought about going to a shrink but am afraid I will look over and see her
slicing her wrists repeatadly before I even get to the hep c
things…MY mind is like putty. I feel so sorry for myself its sickening, I
KNOW IT BUT CANT STOP IT. PLEASE ANSWER BACK IF AT ALL POSSABLE…
…
THANKS
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I also had problems with anger, aggression and anxiety thing. My Dr. put me on Zoloft and things have mellowed out considerably. I’m almost done with week 28 and luckily have had no major problems with the blood counts. There are so many sides you can get and none of them seem to be very pleasant. I do have a cool site with real side effects explained by real hep c patients. I even printed it off and have taken it to the Dr. with me.
http://www.hepcsurvivalguide.org/comboguide.htm
Lots of good practical information mixed with a few laughs here and there. Hope it helps! =)
Birdie
My husband and I have solved the problem, we will be letting his car get repossesed and our home be forclosed upon and moving in with family. My car is newer and easier on gas and the savings with only one car on the insurance and no longer any insurance needed on forclosed home. we should be ok. It’s a sad, sad, world we live in thats for sure. but a person has to do what they have to do… I hate to drag my husband’s name and credit through the mud, but like he said we are not alone in this there are millions just like us. and the mud will wash away one day… But his life would not be the same without me in it. It will be tramatic to see it all go, what we have worked for, for 15 years of our life. But life will go on and maybe someday we will again be able to buy a house. We will move in with my son and his wife or other family members… At least we won’t have to live in the car we have left… And I consider that a lucky break… Thanks for the words of encourgement and support all. God bless, Marsha
I hope you can feel this hug
((((((((((((((((((((((((((((YOU)))))))))))))))))))))))))))))))))))
I know what you mean, the drugs are awful, interferon is a nasty form of chemotherapy and ribavirin can cause rages and anger in the gentlest of people. The depression ~ it’s all medication induced.
and if the chemo doesn’t ‘turn on’ any latent auto immune disorders, you will get rid of the horrible side effects when the chemicals clear your body. I’m over a year past being taken off tx and still have the side effects… But not everyone keeps them so hang in there and vent here whenever you need to. We’ve all been there sometime…
Dear Marsha - we too are in a similar situation- however in Washington State
their are laws that will hopefully allow us to keep our home and maybe even
my car. I so often feel guilty for the part I am playing in our lives -
thinking how different my husband’s life would have been without me in it -
feeling so bad when he is working so hard and we are still filing bankruptcy, etc.
- but when I talk to him about this - he just looks at me with incredulity -
as if to say - don’t you get it - I love you - better or worse. But it is
so hard not to beat yourself up for bringing on the worse - believe me I know - this happened before in 1987 - now again 21 years later - who would have
believed it. I can’t - and we have been married nearly 24 years and together
almost 30. What we need to keep saying to ourselves is how lucky we are - I
feel so blessed to have found this man who stands by me no matter what. I
cannot stand the thought of losing my home - even though we moved here during my
chemo and I was sort of just riding along - almost 3 years ago now - and
still haven’t gotten the tubs from the garage and unpacked my things. We have
beautifully cleared acres in the woods - and I know we moved here because it
is such a healing place of beauty and wonder - and it has allowed me many,
many hours of just being - when that was all I could do. I will hang onto this
as hard as I can. My heart goes out to you and remember - we are only one of
a handful of countries where each child and parents all live in separate
places - the natural thing is to be with your children, or have them with you.
In love and light,
Patsy
In a message dated 9/27/2008 6:05:36 A.M. Pacific Daylight Time,
hepatitis-c-cpt10428@lists.careplace.com writes:
~--------------- sent via careplace.com
~-~ schoolbusmom posted the message below in the Hepatitis C Forum.
~-~ The entire conversation can be found here:
http://www.careplace.com/page/1500#forum-thread-10428
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~--------------- all text below this line will
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My husband and I have solved the problem, we will be letting his car get
repossesed and our home be forclosed upon and moving in with family. My car is
newer and easier on gas and the savings with only one car on the insurance and
no longer any insurance needed on forclosed home. we should be ok. It’s a
sad, sad, world we live in thats for sure. but a person has to do what they
have to do… I hate
to drag my husband’s name and credit through the mud, but like he said we
are not alone in this there are millions just like us. and the mud will wash
away one day… But his life would not be the same without me in it. It will be
tramatic to see it all go, what we have worked for, for 15 years of our life.
But life will go on and maybe someday we will again be able to buy a house.
We will move in with my son and his wife or other family members… At least
we won’t have to live in the car we have left… And I consider that a
lucky break… Thanks for the words of encourgement and support all. God bless,
Marsha
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I’m over 2 years past and still have residual effect and/or finding new ones
- but, BUT!!! I’M VIRUS CLEAR AND MY LIVER IS HAPPY!!
In love and light,
Patsy
In a message dated 9/27/2008 9:00:36 P.M. Pacific Daylight Time,
hepatitis-c-cpt10428@lists.careplace.com writes:
~--------------- sent via careplace.com
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~--------------- all text below this line will
be cut off in your reply
I hope you can feel this hug
((((((((((((((((((((((((((((YOU)))))))))))))))))))))))))))))))))))
I know what you mean, the drugs are awful, interferon is a nasty form of
chemotherapy and ribavirin can cause rages and anger in the gentlest of people.
The depression ~ it’s all medication induced.
and if the chemo doesn’t ‘turn on’ any latent auto immune disorders, you
will get rid of the horrible side effects
when the chemicals clear your body. I’m over a year past being taken off tx
and still have the side effects… But not everyone keeps them so hang in
there and vent here whenever you need to. We’ve all been there sometime…
__
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Thanks everyone it means the world to me and I swear I HEARD THE SOUND OF WINGS WHEN I READ EACH AND EVERYONE OF YOUR EMAILS. You are special wonderful people, and I hope to meet you all one day, if not in this life the next… I am getting dressed for the first time in days and actually combing my little hair I have left, getting in my car and driving down to the voting registration building for the first time in 50 years, going to register to vote… That speaks volumes, I won’t say who I’m voting for don’t want to spark any debates here. But I will say It won’t be father time and the elf from the island of santa’s misfit toys from the north pole… I always said if a real human being ever runs for election I will vote, I didnt think I’d live to see the day but looky here, a real live human is running,. And not a puppet on a stick… My wonderful husband isnt going to be eating any more of my cooking unless he see’s the light in his opinion though. Not to mention the occassional sex he gets or won’t get if he doesnt change his political tune… Only my opinion of course…So gods speed and thanks again for your hugs and engourgement… In love and light Marsha
Well said one and all…
Marsha, hang on is all I can tell you… just grit your teeth and keep on keeping on, I’ve lost my husband and gallbladder so far, and gained a host of auto immune disorders but HEALTH is where it’s at for me… Pray for health, love and time to enjoy them.
hey all, hubby got another job on the weekends so we can pay for my new anemia meds, and for now the cars are safe. And the house for awhile also. I am so freaking mean to this man who loves me sometimes its awonder he doesnt bail out on me. I tell him every night to bear with me through this nightmare. And he says ok, honey, but your gonna owe me big time… with a very evil look…lol I love him so much… Marsha
Hello everyone I have not been here in awhile, I have enjoyed all the entries. My treatment only lasted about 9wks. and yes treatment is brutal. I also have so many other sides going on I don’t think I will ever be the same again. I just keep trying to stay as healthy as possible and pray for a cure/treatment that is 100% effective for all! Keep going and keep the faith, good always comes outta bad. Everyday, I look for my blessings. The country is in such a mess right now.It can be so hard to find things to smile about but better smile than frown. Fight the good fight, be strong and thank God we have this site and others to vent. Know that you are not alone!