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Author Topic: Grateful and Frustrated harvoni and Riba 5th week  (Read 6467 times)

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Offline spirit

  • Member
  • Posts: 10
Grateful and Frustrated harvoni and Riba 5th week
« on: October 26, 2015, 01:31:25 pm »
  I started with the VA on Sept 23= harvoni and 1200 msg of Ribavirin  The day before
tx and the US. The Night before  I was eating supper and I started Choking  , It went down wrong pipe I started Sneezing uncontrollable . then I started having trouble breathing I live alone and Just
Ramed my self into the Sink Board around my Pelvic. IThe food cane out.

Few hrs later I put my hand in my Pocket and felt this BULDGE I Herniated Myself.
The next day I was to have my US and Pick up first Meds. I asked my Dr If I could
take care of the hernia it is a Painful 24/7 ordeal  She said NO. You can't even miss ONE DAY or Tx.

I am so Frustrated There was time to not Start the TX. but I was so Grateful for being
Given this treatment I just went along.

Now Five + weeks I have been dropped to 1000 mgs Anemia Then last week Down
to 600 Mgs Riba due to Anemia.

I go tomorrow to see the V A  Hematemoligisl I have been Treated By the infectious disease Dept .
When I was seeing a Neurologist for 9 yrs Back Pain  they asked for Blood and a UA I had just given Blood for Tx They felt you should also be seen by Liver Drs There was soothing they saw in my Hep C blood work??? I think it was the Anemia

I still do not have any paper work  except Drs words after two weeks
Geno 1a 
Starting VL 1-4 mil
My ALS=were down to 33
 and AST-32  I think
Dr felt I was likely F 3or F 4?

I just need to Vent  The worst part of this Tx has been the Constant Hernia Pain and the
Hernia is Twice the size 5 weeks latter.

All I think I can do is Hope to help this DR Understand "If another Vet or Pt Has a chance to put off Tx for a few weeks to get another Condition Fixed Before starting Tx

IT would be WRONG imho to not fix a HERNIA that is making the Tx a NIGHTMARE
Any thoughts would be appreciated .

I want to say  that since I have been Dropped Riba wise to 600 msg I feel much better
with the side effects that were Much worse at 1200 Mgs

I know I can't go back 5 weeks and do things differently  But at times I just get lost in the feelings Of  So many of us to treat  "Vets" and my Dr being on leave for a month
I can't help feeling This was Rushed and Wrong.

I am sorry if I sound Negative just worn down w/ Pain.
TIA Russell




Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Grateful and Frustrated harvoni and Riba 5th week
« Reply #1 on: October 26, 2015, 03:38:13 pm »
Vent on, Russell...this is the place to do it.  Welcome by the way...this is the 1st I have seen of you but perhaps you have posted before.  Tough situation my friend.  Is there no way you can remain on treatment and have the hernia dealt with at the same time?

I also wonder if there is a was to reduce the swelling of the hernia with meds and ice or something, until you get through tx.

I have recently started my EOT weeks and am supposed to have oral surgery for an implant...but, worried the steroidal meds will weaken my immune system.  But you my friend have quite a dilemma.  Someone will chime in with an idea...hang in there...good luck
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline spirit

  • Member
  • Posts: 10
Re: Grateful and Frustrated harvoni and Riba 5th week
« Reply #2 on: October 26, 2015, 04:58:45 pm »
Thank You Beto.

I just finished Writing to a Friend in UK. As I wrote I started feeling More Grateful
as I tried to explain the the Tx and Harvoni  I could not Feel any thing except
 how lucky I am to be treated.It just put the pain in Perspective.

If this is the way it has to be for another 6 or 7 weeks and I can Overcome the FEAR
of  the damage the hernia May Cause untreated. It will be OK

seeing the hematologist Tomorrow  will be the first time I will see a Dr in person since tx began   I Trust at Times  They will offer  some assistance  and I can be more
Positive and les fearful of the Unknown.

I feel better just Getting it Out and not trying to deal with it all by myself   The reality of WE.
Russell


Offline BillT

  • Member
  • Posts: 573
Re: Grateful and Frustrated harvoni and Riba 5th week
« Reply #3 on: October 26, 2015, 05:56:35 pm »
Hi Russell,

 I'm a Vet doing the treatment through the VA so I can sympathize.Maybe if it's not strangulated you can make EOT.They should be able to tell you if it is or not.Also ask them what other options you may have.Maybe they can work something as far as fixing it and you still be able to treat everyday.I know it's hindsight but they could have put it off.I was was suppose to start this back in July but the VA ran out of money(believe it or not)and they had to wait until the beginning of the fiscal year October 1st.Anyway GL and let us know what happens.Cheers
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline spirit

  • Member
  • Posts: 10
Re: Grateful and Frustrated harvoni and Riba 5th week
« Reply #4 on: October 26, 2015, 08:43:40 pm »
Bill
 It's Really nice, important to talk to another Person/Vet that is Going to the VA for treatment. Only after reading your post  Did the Light Go On.
The Day the Dr Called Me she was so happy? and Said something to the effect
that the Money was just released, for the Harvoni and she was able to treat me
It all happened Quickly not like I was aware that I was on a list? or that I needed
treatment

I often thought about that moment I could Fell her happiness, now I know why.


I can;t tell you how much this has helped.

Not only that she was scheduled for a Month sabbatical a week after She saw me
and gave me the Meds, but the reality that the VA had Run out of Harvoni Recently
and now once again able to treat I now can see what happened in a diffrent color.

I did not complain about the Hernia until I was Four days into Tx.At that time She
said it could not be stopped for a day unless it was a life threatening Situation.
She also said there is still much they are not sure about, when I asked if I could
have the hernia repaired and con't treatment.

I will have it looked at tomorrow  when I see the hematologist  I trust they will have some directions.
I think I know the importance of a" Quiet mind and a Peaceful Heart" to allow and aid the  Body  to heal.... it has not been all that Quiet of late.
Thank you again.
Russell




Offline BillT

  • Member
  • Posts: 573
Re: Grateful and Frustrated harvoni and Riba 5th week
« Reply #5 on: October 27, 2015, 02:04:05 am »
Hi Russell,
           
              I'm glad I could help a bit and I know all too well what you're dealing with.I'm 100% service connected and have been dealing with this since 1975 and sometimes it can be a real nightmare.What happened with the money was Congress put $40 million in the Choice Card program but that couldn't be shifted for any other use so the VA ran out.The problem with stopping the meds as I understand it is they won't work again once you do.The other part of this is these meds interact with a lot of other drugs so I'm pretty sure anesthesia could be a huge problem.I'll have to let someone else fill in all the blanks I'm leaving because I'm new to this and not on sure footing yet.I would definitely ask what options you have when you see them.The worst thing would be having to wait until your GP gets back from holiday and see what she recommends.Keep us posted.Cheers
« Last Edit: October 27, 2015, 02:40:01 am by BillT »
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

 


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