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Avatar universal

Where I've been lately

In the hospital for the past 10 days.  

I had to discontinue all treatment at 10 weeks.  Basically, the treatment was killing me, literally.  I tested UND at 4 weeks and have been doing everything right with the meds.  At about week 8, it was getting more and more difficult to get food to stay down, to the point where when I took my Incivik, sometimes it took twice before food stayed down in order to take it.  

Then, about week 9, the fevers started -- I'm talking regular fevers into the 103's -- breaking them with Tylenol, just to have them rage again.  Couldn't break them for long periods of time.  I'm getting weaker and weaker, but still plugging through.  My doctor at this point is begging me to discontinue, but this little stubborn freak kept saying no, I'm almost there.  

Now at 10 weeks, I can no longer keep anything down, food or fluids.  I decide to listen to my doctor and discontinue the Incivik; he feels I can still "cure" if I stay on the Riba and Interferon.  By this time, I am no longer able to function at all.  The fevers, diarrea (sp), vomiting everything that goes in (including water).  I spend one day at the emergency room getting hydrated only cause my friends forced me (thank God).   They wanted to keep me, but since it's not my Dr.'s hospital where all my records are, I decide not to stay.  

Now, I'm home -- still can't function, can't get out of bed, fevers out of control, can't sleep, no longer even trying to eat or drink because it will come right up.  I had the most clarity I had had in weeks: I'm literally going to die in this bed and there's nothing I can do about it.  

My friends intervene over my stubbornness over going to the hospital (high deductible), and I finally get to the emergency room where I need to be.  

Immediately, they IV me, and quickly discover that I have pneumonia and dangerously low potassium (which alone would have killed me).  Seems like they didn't know what to treat first.  I was on my deathbed and completely unable to help myself at this point.  

After a good five days, with lots of anti-biotics, potassium and tylenol, they get the fevers and potassium in control; I still had not been able to eat, but was able to get fluids down now.  Slowly, I've been able to get some food down.  I spent some very sick days and nights last week, but fortunately the hospital and staff were extraordinary, and they were with me constantly.  

I'm home now, but have discontinued all treatment.  I just couldn't finish it, and even though I am disappointed that I will not "cure" this time around, I have made my peace with it and know that there are always new treatments coming down the pike.

I would have died this past week and even though much of it was due to my own stubbornness, the treatment proved to be too toxic for me and my body just couldn't tolerate it.  

I wish all of you much luck.  It's a tough treatment and I almost made it.  Perhaps next time!

Take care,
Karen
25 Responses
419309 tn?1326503291
What a terrible ordeal you endured, and I'm so sorry to hear that you had to go through all that.  The goal is to cure, not kill the patient, and I'm really glad that you're home and okay now.  You gave it your all and then some... it's good that you had friends who were able to get through your stubborn streak and see you through this.  

Your strength and perseverance are a tremendous credit to your character; feeling disappointed is human, but you should be proud of the superhuman effort you put in... it's so unfortunate not everyone can tolerate these drugs.  Your encouragement to others during this difficult time is admirable... hang tough, dreamcat, you still have 8 lives to live! :)
Best wishes and a speedy recovery to you.  ~eureka
665963 tn?1360723554
What an ordeal! I'm so sorry you've had this set back. I'm glad you have friends that are looking out for you.  I hope you continue to feel better.  Take care.
Avatar universal
Sorry to hear about this,
Oh my...it sounds like you really got put through the ringer on this regime.

Take time to heal and it looks like down the road a ways,there very well may be something else you can try without having to endure all you went thru..
Best to you...
Will
87972 tn?1322661239
Eureka beat me to it; no fair killing the host to defeat the virus. Get well, recover and hit it again later with a different plan laid down. Best of luck to you,

--Bill
223152 tn?1346978371
I am so sorry of hear about how bad it got for you.  I hope you can just rest and recover for awhile.  You have some good friends who acted on your behalf.

Who knows, with 10 weeks of INC and being clear at week 4, you still have a chance.  When will you get another PCR?

frijole
1794638 tn?1345155061
I am so sorry to hear of all this.  What a nightmare.  The good thing is you listened (finally) to your body.  And was treated and your home now.   You stopped treatment and with all hope and prayers and miracles Maybe you clobbered the virus !   Maybe !      If not , get rest, get healthy and wait and see what comes down the pike.    Its not going to be too much longer and they will have a sure thing for this dragon.     Many Blessing and Prayers to You.   Carrie
Avatar universal
so sorry to read of your experiences.   the fevers you were experiencing was something else.  sounds like it could have easily gone the other way without the care you received.
blessings
eric
163305 tn?1333668571
Wow~ this is such overwhelming news. Its a good thing that you are now on the road to health. Take care of yourself, rest and regain your strength.

Best of luck,
OH
Avatar universal
I hate it for you that you became so ill. I know about being stubborn and I am glad your friends were there to get you the help you needed. I am hoping you feel better soon.
Avatar universal
Sorry to hear of your troubles.

Don't rule out being cured with just 10 weeks. I think you have a very good chance.

Stay confident.
Avatar universal
Hello dream,  Very sorry for your pain.  Sincerely hope that your 10 weeks is enough and you don't have to do any further treatment.  But, if by chance you relapse here is an option.  If you can take it, that is good.  If not, at least you know that there are going to be other options available to you and others like you in the future which are far more benign than what you have, somewhat heroically, just been through.  I have posted this link in my journal in case you forget and for the benefit of others.  It is all I could find because I don't think it is starting immediately and it is not at clinicaltrials.org yet.  It is an extension of an ongoing trial and I guess the contacts would be whoever is doing the other one.  I'll have further info in my journals page when I can find it.  They are doing preliminary assessments now.  

http://www.dailymarkets.com/stock/2011/11/04/new-12-week-interferon-free-treatment-arms-added-to-all-oral-combination-study-of-psi-7977-and-daclatasvir-bms-790052-for-hcv-genotype-1/

1815939 tn?1377991799
I am very sorry to hear of all of the problems you had and am so happy you are home and feeling better now. Here's wishing that you will still reach SVR.
1765684 tn?1333819168
That sounds entirely awful...  Hope you start to feel better soon!  Fingers crossed for you.  

Sue
1491755 tn?1333201362
Get well soon!  Heart goes out to you!
1669790 tn?1333662595
Good to hear you're ok at the moment.  That's what matters the most.  We all hope and pray the 10 weeks did it for you.  Best wishes to you.
148588 tn?1465778809
Sorry to hear this. About 1 out of 12 people are going to have to discontinue tx altogether now that PIs are being used. The makers of the drugs admitted before they were approved that the discontinuation rate would aprox. double from 4% with SOC to 7-8% with three part therapy. To me, the British system of trying Peg/riba first and only using a PI if that doesn't work makes more and more sense.
The 4 week UND and strict compliance with the meds is all good. Hope you have a rapid recovery to full health. Take care.
789911 tn?1368636783
So sorry but it sounds like your in good hands and you will recover.  I wonder what was acting so bad, I know the inc is horrible im sorry to say from personal experience, but if you were also having a reaction to interferon or the riba also.  I am at shot 31 and the riba inf combo is a walk in the park compared to adding the inc. to the mix.   For all our suffering you would think it would be 100% effective for everyone.  hopefully they will break through that block soon.  Best wishes to you
Lydia
317787 tn?1473358451
I am so very sorry for what you have gone through and so very grateful that you had friends that could see you needed intervention.  I am sure there are others not so lucky
The Incivek is horrible, I just finished 12 weeks and am now dealing with anxiety from stopping the Incivek.  I think it is true, we are all wo up on killing virus we sometimes forget the host :)
Bless all of you.  I feel as if you are all part of my family..
Have a great day!
Dee
1652596 tn?1342011626
so sorry to hear about your ordeal.  thank god you have caring friends.  take care of yourself and get your strength back.  best wishes for you.  belle
Avatar universal
Thank you for sharing your experience.  It sounds scary. I'm glad that you had some concerned and involved doctor and friends.  When you get that sick you just can't fend for yourself.

I'm wishing you a successful recovery and a good outcome from TX.  

willy
179856 tn?1333547362
Pneumonia and low potassium (ah I had that treatment it was horrible!!!!!!!).  It's a darn shame that it happened to you I have never heard of anyone getting this sick from the meds and wonder if it was just the other complications going on that exacerbated it so greatly.

Whatever I hope that the next time around you can stay on full term and have no outside illnesses to set in to disrupt treatment.
1118724 tn?1357010591
Wow. It's almost like there are two fighting this at the same time. The 'conscious/will/spirit' and the 'body'. The body ultimately has final say. Nothing to do about it but fight the fight. It can not be said you didn't fight hard. There is the adage, what doesn't kill you makes you stronger. Next time out you're going to KO this sob.
1746242 tn?1318209702
Sorry to hear this keep positive thoughts, and I'll be sending positve thoughts your way!
1749655 tn?1321800934
So sorry to hear about your ordeal but glad that you are on the road to recovery.  Just get yourself better and worry about the hcv later.
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