my time fighting the dragon Journals
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week 21  my study doc is driving me crazy

Oct 05, 2011 - 10 comments

I have had a lot of mishaps during treatment.  Any one alone might not be that big of a deal But one thing after another it seems for me.

1. I was not told by anyone at the study about the 20 grams of fat with the incivek.   At the second visit I asked Dr. about it and she nodded her head yes that was true.  They only gave me some crackers the first visit and just said make sure you eat something.  
2. I was not told by anyone at the study that my high blood pressure med  Lotrel 10/20 was even on the list that is effected by  incivek treatment.  My bp went down very low so I stopped taking it.   I told Dr.  about it and she said yes, don’t take it.  It has never been addressed again.  My blood pressure is back up high so I have started taking the Lotrel 10/20 again.  
3. I was told by study nurse  that the timing of Riba dose was not important that I could take it all at once each day if I wanted.  Then I was told by her to keep my regular dosing schedule.
4. I was told  by study nurse that I missed a dose of incivek when she was counting the meds, and I know I did not.  She said it was ok not to worry that I had to only be 80% compliant.  I am under the impression that is not true with incivek.  
5. I feel like the study was very slow in addressing my oncoming severe anemia, even though it was obvious that my hgb levels were dropping very rapidly.  Quicker action should have prevented me from reducing the riba and interferon.
6. I was not told by anyone at the study to watch my bp while taking Procrit.
7. I was not told to stop or adjust Procrit when hgb went over 12 .  I had to bring it to study nurse attention.  Since they did not adjust the Procrit as my hgb levels were rising, they had to completely take me off.  Then I have been starting to become anemic again.   in the 8's range and had to restart the procrit again.  
8. I was put on tramadol for bone pain. Doctor was going to add  a 2nd AD Wellbrutin  to my Zoloft which is known to cause seizures when on Tramadol. I had to bring it to her attention.   She said ok lets not do wellbrutin then.  Then the next visit she asked me how I was doing on the wellbrutin .  
9. When I started weekly CBC’s, 3 times I had to call the office for them to send the order over when it was suppose to be a standing order.
10. I was put on potassium for 5 days and told to get my blood work done on the following Friday at quest diagnostics.  When I went in there was no order.  
11. When my amount of interferon was reinstated to 180mcg, I was the one who had to ask about it.  Dr. response was, ok we can do that now.  
12. I was dryly informed by email from that I had to do 48 weeks of treatment instead of 24.  I understand this is a trial, but I think that should have been a personal call so I could have talked about it to her. Had questions answered etc.  
13. I had my own private blood tests done at week and 4 and 8 and they do not agree with the study tests.  Mine suggest no detection theirs do suggest detection at week 4 and 8.  
14. When I was first having my blood work done at the screening they had to call me back 3 times because they kept using the wrong needle and my blood kept hemolysing.
15. I was told by study nurse in an email that my 12 week PCR had to be undetected in order to continue.  So that meant that I was undetected.  Am I?   That does not even agree with the study protocol which is
Week 4 or Week 12: Greater than 1000 IU/mL Discontinue INCIVEK and peginterferon alfa and ribavirin
16. Needles given with prrocrit were shorted 1, and the last one I pulled out to use was 1-1/2 inches long!  so needless, to say I wasnt able to do my shot that night.  went to my reg doc and got a dang needle.
17.  I take a statin, I had to change statins and go the lowest dose while on incivek.   at week 16, four weeks after I stopped incivek, I ask the doc should I go back to a regular dose of statin now, and she said yes, after incivek you have no more restrictions.  I think taking a statin is important if your suppose to.  I think she should have told me at the end of week 12 to get started again and let me know I have no more restrictions.  geeze...
18.  I was sent an email today saying to up my dose of Riba to 800 from 600.  I have been on a full dose 1000mgs  since September 2 per doctors orders.   I sent an email back to the dr. saying that and she sent me back an email saying she couldnt treat me properly if I didnt follow her orders.  I feel like I want to scream!!!!!!


I am so far into this (week 21) that I feel like I cant move to another doc right now.  I just have to stay on top of them.  and keep taking the meds.   I had a labcorp quantasure done at end of week 20.  I just dont trust them!  I dont care if it costs a 1000.00.  I'll pay it out.
sigh

other than this baloney, I am doing "OK"  i did get sick the other night, first time in a while and my glands swelled up in my neck, front this time.  but went away a few hours later.



shot  20,    What a mean old lady

Sep 23, 2011 - 13 comments

Well, shot 20 down.  28 to go.   The physical sx are very manageable right now.  I sill get achey when I get tired and hungry.  I have a very short fuse.  I might see about changing my ad from zoloft to celexa.  or something else I dont know.  It is very mental sx now.  I would consider my self a hater right now.  Pretty much hate everybody for some reason or the other.  (of course I love my family)  But they probably think I hate them.   I did give my sons a 25 dollar i tunes card each for at least getting some good grades right now.   My son made the mistake of saying he didnt feel what I wrote in the card was heart felt.   (he is only 12)    I ripped up the card and threw it out the car window.  (who is the mature one here)   I let him keep the I tunes card because I couldnt return it. I would have let him have the money anyway because he has earned it.  But I did make the comment I was glad I didnt give either of them more than 25.00.   My older son started acting like a rear 5 minutes after I gave it to him.   What the heck is wrong with everyone?    I would love to be able to take a little vacation or have them (family) take one.   I just keep getting up every morning during the week and working some hours.   I am greatful.  My prayer now is to get some control over my emotional issues.  One of the reasons I quit drinking was because I was always a live wire if I drank to much.  Things could get bad quickly if I was felt crossed for some reason. I have always been somwhat known for an anger thing.  I never told my doc because I thought I could handle it and was afraid they wouldnt treat me.   Nothing dangerous going on, just abusive swearing language and very easily annoyed.    
I seem to be more calm right now.  I have taken a couple of xanax over the last week so I would sit up all night and think.      

week 19

Sep 17, 2011 - 4 comments

The last couple of weeks have been up and down.  When I feel good I try to get as much done around the house as I can.  I have had a lot of emotional issues with my husband not helping me and caring for me like I think he should.  Im sure It is not rolling off my shoulders because of the drugs and them wearing me down but there is truth to it.  It just bothers me more than usual.  I have been a stay at home parent since I have had my two boys for the last 16 years.  I homeschooled for 7 years.  I did the majority of everything in the house, out of the house.  I decided to go back to work because my husband doesnt make enough money for us to pay all our bills.  I was starting having problems handling everything especially keeping up with all the bills.  We wouldnt have enough money or I wasnt juggling things right and would bounce checks.  I practically begged him to just help me with a plan.  I put all our bills on a  poster board and stapeld it the wall in front of his side of the bed.  When I started treatment things even got worse because I cant think straight, remember things, etc.     This last incident with me paying a bill out of the wrong account and it costing us over 100.00 in NSF fees, just threw me over the edge.   I feel like Im working to pay the mistakes I am making and if he would just help me with the household things like money, food preperation, cleaning, pets, EVERYTHING!     I feel like he cant take care of me or wont.  I kicked him out of the bedroom and dont want him around me AT ALLL.   I wont even talk to him right now.   This has been going on for years, I just have put up with it because I have the kids, dont have a way to support myself,   What an *** he is.   He cant handle it,  It makes me so angry!!      He says he loves me but I dont feel it,   He doesnt even take any time to learn about my disease.   I could go on for another few pages but why.  It is everything.  Cant even stand to hear the sound of his voice.  


Week 17

Sep 06, 2011 - 3 comments

There is a lot I want to write about but I really dont feel like it.   So I will be brief just so i wont forget what happended.
I did talk to my study doc about all my concerns.  at first she seemed defensive but later she wrote me an email and said she hoped things from this point forward would go smoother.   I told her I had my own private blood tests done and the first thing she said was dont tell me what they are.   She said it would bias her.   They have to go by the study results which I already knew that.  She has seemed a tad bit more responsive.  After my shot friday, sat am I woke up with  a swollen salivary gland called the parotid gland.  under my ear to my jaw.  I had to go to urgent care and get some antibiotics I also had a uti.    Now the gland in front of my throat is tender.  hope its not my thyroid gland.  hope its not something more sinister.  Im just hoping it goes away pretty quick.  I have not been feeling well  been in bed mostly for the last week except for work. ,but they have me back on procrit once a week now, cant keep up with how much they change the dose. and they want me back on full dose of riba and peg.  I have been irritable and emotional.  that is all for now