Sunday, November 16, 2008

Have I reached acceptance even though I have no proof?

I knew I had to post this here because it's part of my Hep C journey.

Have I reached acceptance even though I have no proof?

I would appreciate input into something the Nurse Practitioner said to me the last time I saw her.

Of course, those of you who are familiar with my situation will know that have no clue where I picked up the hep c virus during my life’s journey to date. I was born and brought up in Smallville. When diagnosed I became a lost soul and I couldn’t accept that there was no answer to where, when or why. Many posters would come online and tell me that there was nothing I could do about it and just be thankful that I know that I have the virus and I’m treating it. The posters that wrote this pretty well knew where they picked up the virus so they reached acceptance. I could not because of the unknown. I was always pretty sure that I picked it up because someone was “sloppy in Smallville.”

Recently, two things have helped me reach acceptance.

The recent revelation that reusing syringes in operating rooms was a common in the 80’s & 90’s in Canada and US. I had several major surgeries and invasive testing done during this time of my life. Many times I watched them inject whatever into an IV in the operating room and in my hospital bed. They would come in with a filled syringe and inject it into my IV . As innocent as that seemed at the time, it shows that I had no clue that they may have drawn that out of a tainted bottle into a used syringe. This was very common at this time.

The other thing that helped is that I know from reading the forums that there is no set pattern to biopsy results. My biopsy results were excellent minimal inflammation of the liver between 0-1 (scale) at the time I asked the question on the form and was told that it means nothing regarding how long I have had the virus. I was always searching for an answer. Being a theorizer and I questioned NP last visit regarding my excellent biopsy results and if that meant that I had hep c a long time or a short time. She hesitated and said...”I would say that you probably haven’t been walking around with this virus for 40 years” .It seemed to settle me and I grabbed that theory because I needed to have an answer. I still want to hear forum member’s theories regarding this biopsy issue and my NP’s response.


Genotype 1Pegetron 135 µg Ribavirin 1000 mg72 week tour of duty

Responses to my post

by Alvin on Fri Nov 14, 2008 4:37 pm
Rose,I'm not sure how anyone can know exactly the moment he/she got hep even if transfusions were involved. We may have picked it up at the dentist. My life style risk factors ceased entirely by 1971. I positively got hep B and probably C in 1967. That is 40+ years ago. My bx in March '08 came out stage 1/2 fibrosis on the Metavir (0-4) scale. I guess the point is it can hang around a long time and not completely destroy the liver. IMO, your NP is reading tea leaves or rolling chicken bones. . . or more probably assuming you led an alternative life style way back when.There's quite a stigma about the whole thing here in the states. That's one of the reasons I prefer UK boards. In the end, I guess we all have to be at peace with ourselves. I offer sincere best wishes on a successful completion of tx. After all, there's still a lot of life to be lived.

by pixie on Fri Nov 14, 2008 4:58 pm
Rose I know the transmission route has been difficult for you to come to terms with..I often think of all the dangers I had been put in regarding other peoples blood over the years.My Daughter Fathers first wife was a registered addict back in the 70s he told me story's of having to clean her and up take syringes out of her arms some days, he hated drugs and had to divorce her over the problems it was causing..He was a drinker tho and I endured many years of abuse from him ending with me being taken to Hospital to be cleaned up..who knows if he had it..?..he died when he was 50 tho he had a history of depression and manic behaviour...i once stopped to help a street man that was having a epileptic fit.I was covered in his blood ....I worked in a Nursing home back in the 80s before we had gloves issued and had a chap admitted he must have been a hemophiliac as I remember him having injections to clot his blood, he had lots of bleeds while he was there I remember mopping up the blood lots of times...and at this time I would have had lots of cuts working there...The list goes on .... I hope you can come to terms with it....not long to go now..px
Geno 1b.One of the 20% with no sides thru Treatment..Finished Tx March 07SVR October 07

Hey RoseMaybe if you knew why it bothers you not to know how you got infected it would help you come to terms with it. Is it because without a definite answer to give people you feel they may think you are lying to hide a druggie past, or is it that if you don't know how it happened then you could so easily get infected again in the same way. I think your NP is talking rubbish. I have probably been infected since 1976 when i also caught hepB and i have very minimal liver damage - stage 1/6.Good luck with coming to terms with itstar

by MYS on Fri Nov 14, 2008 9:25 pm
Rose -You started treatment fairly quickly after your diagnosis, I think that is partially the reason why you were fixated on 'how did I get this? how did this happen to me?' Then, the interferon magnifies these fixations. I waited over 8 years from the time I was diagnosed until I started treatment. In those first years, I just could not accept that I got it from the 1 pint of blood I had received - it just didn't seem possible that I would be that unlucky. I blamed and or suspected everyone including: my mother, who had an unspecified kidney and liver condition when she was a child - in the 1930's, passing it to me at birth, and I even wanted to get her hospital records from then. every dentist I had ever been to in my lifemass immunizations when I was in schoolall of the surgeries that I had I finally gave up (but not completely - I still wonder about it occasionally) trying to figure out how I got it. The pint of blood was the most likely source, and yes, I am that unlucky. Even though it was 1976, the hospital was still using the old rubber tubes (instead of disposable plastic ones) and glass bottles to hold and deliver blood. The cleanliness standards there weren't the greatest. (I picked up a bad case of ringworm on my butt after being there - why wouldn't the Hep C have come from the same hospital)?The point I'm trying to make, is that your need to know may be partially driven by the interferon, at this point. I hope you have finally accepted that you will probably never know how you got it, and that you'll be able to not think about it as often, once you're done your treatment and reach SVR.All the best,MYS
Formerly Hep C 2A/C 'Hybrid,' now SVR!

by jb on Sat Nov 15, 2008 8:47 am
I don't think the state of a persons liver is an indication of how long they have had the virus.... two people might get it on the same day, but their lifestyles are totally different... one may drink the other not... eating habits, smoking, work, sleep patterns etc etc would all make a difference as to the progress of the virus and it's damage to the liver....I too often think at which point in my life did I actually get this virus.... was it during my needle sharing day's 73-76 or a tattoo, piercing... from a jet gun at school.... my ex wife's first husband has HCV...... it is easier for me than you as I have so many transmission routes to choose from..... don't drive yourself in circles accept that you will never really know exactly where or when.... keep going Rose... I am behind you but catching up....
Geno 1a relapsed October 2007 2nd treatment started May 2008 for 72 weeks ....Brodo

by Really Rose on Sun Nov 16, 2008 11:05 am
In my heart I know that I’ll never know where, when or how I was dinged with Hep C. However, I might be reaching the acceptance stage of grief being diagnosed with this virus. It took me nearly two years to reach this point.Take CareRose

Friday, November 14, 2008

Injections 60 & 61

Week 60 was brutal. My haemoglobin was low enough to suffocate me. The good news is that I had my bloods retested on week 61 and my WBC and haemoglobin came up to let me continue on full dose.

I was struggling with the haemoglobin last week and I was having mild chest pains. (I did ensure that I rested if I felt over did it.)

My life is sh%t. anyhow, I may as well keep going on this treatment.

I am so done, but what’s eleven more weeks after 61 weeks of hovering above death?
I am very irritated these days because everything takes so much effort. My coordination is out of whack. I’m teetering and tottering around when I’m walking. I cannot wear heels. I cannot get on an escalator or go down stairs without someone holding on to me. At home I do better on the stairs, but I have to really be careful in case I take a header. If I pick up something...I drop it. If I unscrew a cap of something...I drop it. If I go to put something on the counter I misjudge drops to the floor. I miss the garbage can constantly so I have to bend down and pick it up and do it all over again. Might not be a big thing to someone, but when you can hardly function being so exhausted on chemo it’s a huge effort to do stuff twice.

I cannot coordinate my brain with my hand to turn off or on a light switch without missing it and having to go back and try again. My peripheral vision is also out of whack so that I am bumping into people when I’m out in public. My husband scares the sh%t out of me when he speaks and I don’t know that he’s around. My son’s cell phone is beeping in his room and I feel like going in there and stomping the sh%t out of it. The telephone ringing sets me on edge. If I turn them down husband turns them back up again. (Scared to miss a call, I guess)

I won’t give in!

Sunday, November 2, 2008

Nurse Giving Me Some Attitude & WBC Critical #59

It just goes to prove how it's a miracle to stay on this treatment. My white blood cells are what she called critical. I don't know what my Neuts are and she kind of mumbled over them, BUT if they are the same as they always were I should be OK for a bit. Everyone I know will be banned from getting near me. My neuts ranged around .7 or .9 the last few tests and even though they are grossly low I still have some protection. There is a drug to bring up white blood cells, but they will not offer these "rescue" drugs here. They will reduce the interferon first. Not a thing I am keen to do.

If I were anyone else, Nurse told me on the phone, she would instruct me to reduce the interferon (injection) from 5 to 4 and see if the WBC will come up, but she knows I won't do it if she asks. I told her she was right so she compromised and will give me another two weeks to see if my bloods come up. My hemoglobin is 9.3 (should be minimum 120) and my blood sugar is low which is strange for this treatment. However, I was told that any pre existing problems prior to starting treatment would probably be worse on treatment. I always had a tendency to have low blood sugar and it's a problem with this treatment for me. I was gloating that the blood sugar had come up you regarding my Sept 4 tests. I’m really thinking that having my blood tests done every eight weeks isn’t enough on this chemotherapy. The clinic is so cost efficient it’s nauseating.

Well, if my bloods do not improve in two weeks I'll agree to reduce the interferon for a couple of weeks. Then I'll try to go up to full dose again to try and get the last weeks in on full treatment. I'll deal with that battle if it comes. Nurse is mailing me my test results. She is also sending me blood tests to have done November 12, but I won't get them done until the Friday of that week on the 14th and that will give me another few days. She won't get the results until the third week. I also intend to get my script for four more weeks refilled a bit early so I have them in the refrigerator. Just as a precaution, but I expect if the bloods don’t improve I’ll have to take the interferon reduction.

There is nothing I can eat or do to bring them up. It's chemotherapy without rescue drugs. It’s like riding a motor bike at warp speed and not wearing a helmet.

I managed to get myself into another conflict with nurse.
I’ll give some background here.

Because the clinic is very stingy with PCR testing I was “allowed” one standard test prior to starting tx to determine my viral load and then I was tested at four weeks into treatment to see what my initial log drop would be on tx. It was determined that I had to do 72 weeks of chemo following that four week PCR test because I didn’t have the two log drop. The clinic would not test me until 24 weeks and I came back undetectable so I continue on from 24 weeks to 72 weeks without a PCR test to determine if I am still undetectable. It’s not logical, but it’s cost effective for the clinic without any regard for the patient who might have had a breakthrough in the virus and is taking this insecticide and rat poison chemical for nothing. I’ll not sugar coat this situation...treatment is harsh and brutal.

My argument with Nurse was regarding my end of treatment PCR (if I make it to 72 weeks) and what is the point of it? Here they don’t give a “rat’s ass” about you being undetectable from week 24 to week 72 and that’s a long time to leave someone on treatment if it’s not working and you have a breakthrough.

I questioned if I am “allowed” one PCR test at the end of treatment then I should be able to wait until at least 12 weeks following end of treatment to have the test to see if there is a possibility that the virus is back. She went on the defence mode and indicated that it was procedure and protocol of the clinic to do an end of treatment PCR. She told me to “stop reading and she is the trained professional and I should let her do her job and I should be the patient” in so many words.

I asked if the PCR test has to go on a different piece of paper and she said...”I’ll escort you down to the blood lab and watch you get it done.” LOL I have her running and I am the “fly in the ointment” for her. I think it’s so stupid to worry about whether I am undetectable at the end of treatment when they can check me twelve weeks later to see if I am still undetectable. I know it’s for the clinic’s own records. However, their treatment is flawed because they give no check for the hapless soul who has had a breakthrough during treatment, but they refuse to check it until the end. Going 4 weeks to 24 weeks is a stretch, but leaving someone 24 weeks to 72 weeks is just too stupid for the sake of cost. Forget the stress on the patient’s body being left on treatment so long.

I’ll post this on the forum for input regarding my conflict with nurse.