Thursday, March 31, 2011

Finally ...

One of the two liver meds was delivered today.  The second one will be delivered on Tuesday.   I have an appointment on Thursday evening to get trained on how to administer the injectable drug.  And the six month count-down begins.


Tuesday, March 29, 2011

Nervous ...

I got a call from the pharmacy that my liver doctor had referred my meds to.  They can only fill one of the prescriptions, the other needs to be filled by my insurance company's contracted pharmacy.  I was given their number and told to call them and set up a delivery.  I did call them, but they are still waiting for final authorization from the insurance company, which should be forthcoming in the next day or so.  Then we'll have a conversation about delivery and co-pay, etc.

Right now, for some reason, I'm more nervous about this than I have been so far.  Feels like efalumps are running around in my stomach.

Monday, March 28, 2011

Meds update ...

I started the new HIV meds and the generic form of Prozac this weekend.  So far no noticeable side effects, thank goodness.  Keeping my fingers crossed that there won't be any.

I also just got a call from UCLA, and the pharmacy that will be handling the meds for the Hep C should be contacting me in the next day or two about getting my first month's supply delivered.  They are just waiting for final authorization from the insurance company.  As soon as I receive the meds, I have to set an appointment with a nurse at UCLA to teach me how to administer the interferon, and then the six months of treatment finally start.


Saturday, March 26, 2011

My first full-sized quilt ... photos

Here are some photos (unfortunately, not of the best quality) of the first full-sized quilt I ever finished.  It took me a LONG time to do (as in over a decade), but I was very happy with it when I finished.

It's called a "jumble quilt" and I didn't do all the work on the top part, lots of people helped, but I did a good portion of it, and I did all the quilt stitching and seam binding:

Here's a picture of one of the corners that shows the seam binding on the front:

Here's a shot of a corner showing the seam binding on the back along with the back stitching:

Here's a shot of the back of the quilt (folded in half) ... gives you an idea of the flavor of it:

And one more shot of the whole thing:

Thursday, March 24, 2011

Beautiful photography ...

In my blog travels, I ran across this photographer, who has some really beautiful pictures that I'd love to have on my walls in my house.  His website is a bit strange, so I've put the link that shows his "new work."  There's a lovely picture of two men lovingly embracing in a sauna that really speaks to my heart.

Update ... reach around ... wankage ... whatever. ;)

I'm still waiting for the Hep C medication to be pre-authorized by my insurance company.  The delay seems to be coming from some misplaced blood test result.  So, I keep calling the doctor's office.  Oy.  Can't WAIT 'til this thing gets started, as I'm a little fried from the anticipation.

I went to visit my parents this weekend.  My mom's going through some medical stuff herself, and although I've been talking to her fairly regularly and know what's going on, I was a bit freaked out by how it was affecting her.  I went to say goodbye to her on Sunday, and gave her a long hug, and almost broke down in tears.  Fortunately, I covered and she didn't notice.

My father is going to be taking a week long trip to visit his brother (who is also ill), and so is arranging for people to stay with my mom.  My sister is the first choice, given that she doesn't have a job, and is very close to my mom.  She asked me if I would help out with some of the time, and I was so freaked out in that moment that I said no.  I spoke to her two days later and apologized for the "no" and had a long conversation about how to make sure she isn't the one who always has to deal with the sitution.  This is when I need to open my heart and be willing to step up to the plate.  Sometimes I worry that I'm not particularly brave when it comes to things that matter.  I guess one has to be conscious and willing to be brave ... it doesn't come naturally, at least not to me.

My sister said that my mom had called after I left and was worried about ME, and that I was too thin, and that I must not be eating.  My father called the next day and also said that I looked unwell.  Not a good shot to my ego.  Especially since my scale is telling me that I'm 217 lbs, which is about 10-12 pounds heavier than my lowest weight.  I asked Michael if I looked unwell, and he just said that I had lost some weight, but that I looked fine.  I think what people are noticing is that I've lost a lot of my muscle mass in my arms, chest, back and legs.

Intellectually, I'd like to go back to the gym, but I just can't seem to muster the energy.  I had started walking again, mostly because my doctor told me to get to exercising to deal with my blood pressure, but my left heel kills me after walking a bit, and I end up limping.  So, I'm at a loss as to what to do.  I could use a work-out partner, but am not sure how to make that happen, given where I live, etc.

The last doctor I saw was my HIV doctor, and this is what came out of that meeting:

1.  She is putting me on a low dosage of Prozac because the interferon, etc. tends to cause depression, and since I kinda battle it anyway, it's not a bad idea.

2.  She cautioned me that I might find myself using again due to the emotional stuff that comes up on treatment.  I was a bit taken back, but rather than defend myself and my sobriety, I merely nodded and listened.  Honestly, I've got 8 years of continuous sobriety under my belt, along with a support system to go to in case of emergency, and using is just not one of my options.  It was very sweet of her to say that if I did find myself using, not to worry, she would still take care of me.

3.  She's taking me off Trizivir for HIV (which contains AZT) because it is contra-indicative to the interferon that I'll be taking.  She's replacing it with two meds, Viread and Epzicom.  Those meds have been ordered from the mail pharmacy (along withe Prozac), and I'm just waiting for them to show up.  They're late, and I'm starting to get worried, but I'll wait 'til Monday, and then call and find out how to deal with missing meds.

*UPDATE*  My meds showed up in the mail today!!  Woohoo!!

4.  She wants me to see her every month while I'm on treatment for Hep C.  So, I'll have two doctors keeping an eye out for me.

5.  My blood pressure was high again.  Rather than throw more pills at me, she asked me to look at my diet and exercise program.  Both are out of whack, so I'll have to figure it out again.  On the food front, buying good quality food is a bit impossible at the moment, given food prices and my general lack of funds, so I've been relying on pastas and lunch meat, etc.  Will have to rectify that very soon.  The target blood pressure is less than 130 over 85.  I'm normally at about 140 over 90.  When I had it taken at the doctor's office, it was 151 over 101.

6.  She suggested that I find out about FMLA, if I need to take some leave from work due to treatment.  I'll have to check it out, but I seem to recall that FMLA only applies for a firm that's got a certain amount of employees, which my firm does not. Plus, me being out of the office for an extended period of time will be detrimental to their business, and the security of my job ... would really rather not do that.  Having said all of that, it would be good to at least know what's out there.

7.  She also suggested a support group at UCLA for Hep C, at least once.  I'll check it out, as soon as I find out the when and what of the nurse practitioner lesson about managing the medication and the side effects.

Alright, end of wankage.

Monday, March 7, 2011

Doctor appointment stuff ...

I just got back from my appointment with the Dr. D (the liver specialist).

-- The liver biopsy showed signs of significant damage, almost cirrhosis, but not quite.  He recommended starting treatment.  Not to be snarky, but I told him a month ago we should treat, and that I'd like to get started NOW.

-- He mentioned a new medication that was coming out, but when I reminded him that he had told me that medication was not used to treat the Hep C genome that I had, he said that we should start with the old-fashioned treatment.

-- This clears the way to start a 24 week course of treatment with pegylated interferon and ribavarin.  (Something about Alpha 2 vs. Alpha 1 ... I didn't know what that meant).  This all could be MUCH worse.  For instance, if I had genome 1, rather than genome 3, I'd have to do a year's course of it.  Ouch.

-- His office will handle the pre-authorization process with my insurance.

-- They will call me to set up another appointment with Dr. D in 8 weeks.

-- About a week and a half before my next appointment with Dr. D, I need to have more blood drawn.

-- As soon as I jump through all the hoops and get the meds, I need to make an appointment with a nurse practitioner at UCLA so she (or he) can show me how to administer the meds, and give me pointers on coping with side-effects, etc.

-- Since AZT is part of my HIV regimen and shouldn't be taken with the Hep C meds I'm going on, I need to make an appointment with Dr. M, (the HIV specialist) to shift my HIV meds around.

Basically it looks like I could be rocking and rolling in 2 weeks to a month.

Liver biopsy done ...

I have decided that if given the opportunity to choose between an upper endoscopy and a liver biopsy, I'll take the upper endoscopy every time.

Liver biopsies?  They tend to hurt. 

Think of it like this.  A very nice nurse gives you just enough sedation to keep you from bitching too loudly, and then a doctor tells you to exhale for ten seconds, while he shoves a knife in your side and removes part of your liver.  Then you're told to breathe normally.

You are then wheeled back to your little curtain-enclosed area, and asked how you're doing.  In answering, I used the term "uncomfortable" while rubbing my shoulder which had inexplicably started to hurt.  The doctor noticed that I was rubbing my shoulder, and said that pain was from my liver as they had to go through my diaphragm to get the liver tissue.  I asked if my liver had moved.  I thought I was joking; he did not.  The doctor said I should take deep breaths.  Easier said than done.

The nurse then brings me some percocet, which eventually allows me to breathe fairly freely.

While grateful that the percocet took away the pain, I wasn't too happy that it knocked me on my proverbial ass for two days.  I ended up calling in sick to work the next day because I just didn't feel comfortable enough to drive.  And then I slept.  And slept.  And slept some more.

I think next time I'll just ask for Extra-Strength Tylenol and grit my teeth and bear it.

Today I find out the results of the biopsy, and then hopefully get this merry go round to start it's next revolution.

Between the doctor appointments, the interminable waiting, financial worries, and my natural insanity, I am not sleeping well, which means I'm sitting here at work today, not having slept more than a couple of hours last night, and trying not to lose my temper over the loud noises and the general stupidity of life, love and the pursuit of happiness, or lack thereof. 

Whew!!!  It's Monday, y'all!