HCV Avoidance Disorder

[sunqueen]

So I finally had the courage to find you guys yesterday. After I was dx last fall, I dutifully did the trillion other tests and procedures that my GI put me through before she could (would) treat. Every time I tried to find out more about Hep C and treatment, the things I read scared the b'jeeez out of me, so I stopped doing it and resolved to hang tough and do whatever it takes.  Before I started tx, I asked my GI to give me a note for work, just in case it got bad. She said I would be fine. She also said she was going away for the month (India) and that if I had any problems to contact my PCP.

I started tx on July 4 (it seemed like a good date!). I .. erm ... I work for hospice. In the field. Making home visits. In South Florida. I spend a lot of time getting in and out of my car and in homes where they won't use a/c.

Once a month, I have to be on-call for the entire weekend (and work the week before, and the week after). I do my shot after work on Fridays. Sometimes I can be called out for an entire day or night and all I want to do on the weekend is sleep! I have a horrible feeling that this is going to put a crimp in my work. The heat kills me. I carry a billion water bottle because I notice that I feel more dehydrated with each day on the Ribavirin. I'm like a camel!  Then I notice that I'm soaked with sweat and the room is spinning. I get motion sick in my car on the road, and *I work out of my car* I drive all day.

I called my PCP and asked for a note so that I won't get fired if I start missing work. He refused and said I need to get it from my GI, who is out of the country.

I can cope when I'm in dark cool places, but the heat is really kicking my butt!  

I don't really know what the question is. I'm resolved to stay positive and do this but I feel like I'm not getting the support I need from the people charged with my care. I'm supposed to be on-call next weekend and my employer has said I'll need documentation to have it waived while I'm doing the tx, or to not be in jeopardy if I miss regular work.  

Any thoughts or suggestions appreciated!

[CMcH]

First it sounds like you need some new doctors if that is an option. It also sounds like you work in the health care field so I am surprised no one is showing you compassion. You do need to advocate for yourself! I decided to TX because of my joint pain (RA factor in blood but Rheumy wouldn't TX because of the HCV) and other autoimmune problems that were interfering with my life. Now that I am on TX I can't go out in the sun anymore. I am fair skinned to start with but live in CA and always enjoyed the outdoors. I feel like I am allergic to the sun now. I can't open my eyes outside and it feels like it is scalding my skin. It really aggravates my Riba rash and puts me in a panic like I have to flee ASAP.
I work at a hospital and initially before TX my boss seemed to be cool about it and agreed to let me have Saturdays off after the Fri PM shot. Then he changed his mind and his boss that agreed also is retiring. I tried changing my shot night and working a Sat. to comply but it just didn't work. I am now considering dropping my hours and I told him I could not work Sat. at all and would get an MD note for that. Luckily I have good
Docs that listen to me.
Fight for your rights and try to protect yourself while on TX. The sun can become your enemy. See if you can reduce hours so you can rest. Use your STD if you have to. The priority has to be killing this monster while keeping yourself in one piece. If you don't have the energy to fight or brain fog makes it hard see if a coworker that is also a pt. advocate can advocate for you. Remember you and your health are important!

[sunqueen]

I will get to that straight away if I can't get anywhere with my GI's office this week.

[sunqueen]

Thank you for your remarks!

Work is an imperative for me too. I can do a reduced week or a few weeks missed, but other than that, I really have to keep going. I love my job. I love what I do. I need the pay and the insurance.

I got a call from a woman who identified herself as a RN case manager from the lab that supplies my medications a few days ago. She did say that for many, the sx really ease up after 12 weeks, so that gave me something else to feel hopeful about.

So far I've only had to give up my Saturday at the beach, which is a regular ritual for me. I'm way too tired to drag myself there and I'd rather stay right here in the a/c. I'd be afraid to get in the ocean feeling like this!

[sunqueen]

Heh, I lived in TX for two years and the only thing worse than FL heat is TX heat. I did not leave the house once yesterday because I was off and boy did it make a difference in how I feel. My greatest hope is that I can go down to 24 hours a week during these peak heat months.

Congrats on SVR!  That gives me so much hope.

[sunqueen]

They sent me off with a month's worth of lab scripts, so I'm guessing that someone is going to be looking at them while GI is gone.

I can see that a lot of people here struggle with work. For me, complete cessation is not an option.I do have both short and long term disability plans at work, so I'll be able to get by if I have to stop a bit.

For my work, I act as a patient advocate. Oh, the irony. I'm very good at advising patients and families and with working to ensure that their needs are being met. This Hep C has just overwhelmed me right from the start. I originally went to the doctor a year ago because I was exhausted all of the time and my joints were killing me. I had just lost my mother and my friends and coworkers said it was grief. I had enough sense to push my doctors to find out what's really wrong. Since the dx, I feel like silly putty. I reckon I'm going to have to buck up a little more and start to ensure that they hear me when I ask for something I need.

I'm not liking what this is doing to my mood so far. One minute I'm feeling weepy and the next I'm irritable and grumbling. I had a good cry in bed yesterday after we argued over corn muffins or corn bread with dinner.

Yeah, the next 23 weeks are going to be a riot!

[lionesse]

hi yes docs are terrible about putting you off work for this  its your treatment your life insist on it! i carry through work 2 short term disabilitys that i pay for just for this  so i can live through txs and not have to work  been through txs once going again  i will not work this time  had to quit tx last time because of side effects i was trying to work  i drive a city bus not safe for anyone so has anyone heard of the tx with a shot a day?48 wks? be happy

[sunqueen]

Thank you for that!

I know that they'll be looking at my bloodwork and have cautioned that it can become perilous at points, which is why I don't get why I couldn't have the note up front. I have a weekly productivity quota and I'm hoping that my employer will adjust mine to something more manageable during tx and make the on-call go away for awhile. This way, I can try to see a few patients without killing myself for 8  hours a day. Still, I worry that I'm going to end up doing a nosedive onto the couch one day and staying there indefinitely.

Take care.

[sunqueen]

The rheumatologist my PCP sent me to last fall is the one who dx the Hep C after I was referred b/c of constant joint pain and fatigue. They took me off of all joint pain meds immediately after the second test test confirmed active HCV. Since tx, I have flaming joint pain and was told to take a tylenol if I have any pain. I seriously want to slap someone. But dude, that seriously bites! How could they have put you on meds and then not monitor? I was handed a stack of scripts for baseline and F/U labs. They made sure the bloodwork is going to be done, but I have no idea who will be looking at the results!

[sunqueen]

Plan B was to go back to my GI's office for help. I called after my PCP declined my request for help. It was about 2 pm Friday and I got "the machine" saying to call back during regular hours M-F 9-4. I tried a few times, and no luck. I'll try again Monday.

I work for nurses who all gave me the gloom and doom perspective prior to my decision to treat. They know what I'm up against but HR still requires that darn doctor's note. I will not give up on this!

[sunqueen]

Waving back from PBC.

[sunqueen]

Thank you for the welcome. So far I'm not feeling entirely like a lucky one, but doing my best. Thank you for the kind words!

[alagirl]

I would call your insurance company and they will help you find another PCP.  I make my insurance company do all kinds of things like that for me.  Get a PCP who really seems invested in your welfare.  Ask friends and other docs for the name of someone good.

[alagirl]

Your PCP is a jerk not to do that for you.  Can you get another PCP since your specialist is gone?  Because you may need to invoke FMLA or something and that note is necessary.

[Trinity4]

It's very difficult to work on tx.  There have been times I thought I was going to lose my mind but I have to work because I need the money and the health insurance.  I've given up many things I used to enjoy, long walks, swimming laps in the morning, jazzercise class just so I can focus on getting through my day at work.  It takes all my energy and there isn't much left at the end of the day.  It's not loyalty to my company, it's a matter of economics.  The only other positive is it forces me to take my mind off of myself.  After week 12 I have started to feel a bit better physically so hopefully it will improve as tx continues.  Everyone is different and 16 wks ago I could not imagine saying this -  but it's getting more tolerable.  Good Luck
Trinity

[goldyn]

You just watch yourself cause your hemo can drop pretty quick!..I live  in Texas and the summer heat just about floored me i just couldnt hardly function in the heat , i kept working  about 28 hours a week teaching preschool ,  and took care of my five children, it was the hardest year of my life.....im Thankful im S.V.R...Please just try to take it easy as much as you can and stay out of heat  as much as possible, you will feel alot better when the weather turns cool......

[willows]

So you can tell from a lot of the posts that a majority of folks here have a darn hard time keeping up with work.  I know I did.  I treated the first time in 2002 and at that time, the fatigue from interferon and riba was not documented, so my GI told me it was "all in my head".  When my tx was over, I fired him and looked and looked and finally found a great doctor about 4 hours away.  The drive was and is worth it, he acknowledges the fatigue, the crazy attitudes from co workers, etc.  So, no surprise, I am not working any more.

A lot of folks here are applying for SSS disability...the fatigue is so bad for some folks that it IS a condition that keeps them from working.  But the journey is so individual for us....you will have to hammer out what works for you.  When I read your GI was out of town..I wondered if he had someone taking care of his patients while he was gone?  Riba can whack your blood count in dangerous ways...so this GI BETTER have someone looking after you!

To not be a victim...to be strong and demand what you need is probably the one behavior that will serve you the best during your tx.  Your symptoms may get better, but they may not and however you progress...IT IS OKAY.  So give yourself permission to feel however crazy you feel and when you share it with your docs...make them acknowledge it and give you what you need.  If they won't..well, some of us find different doctors.  Being successful this time on treatment is more important that I can tell you..and a big part of it relies on you getting the support you HAVE TO HAVE.  

I guess I'm a girly girl...I wanted to cry when I couldn't get my doc to validate how truly bad I was feeling.  But I eventually learned that I was the one going thru the treatment, no one else, and I was the one who was going to make it, one way or the other.  So ask for what you need, over and over again until someone helps you.  Be strong.  Which is not that easy when you feel like ****.  Good luck!!

Willow

[pigeonca]

I began treatment with a totally positive, upbeat attitude: I wasn't going to let this get me down.  Well, guess what!  Within weeks, I could barely move.  My hemoglobin dropped 4 points in 2 weeks, which left me holding onto walls to stay upright.  

I have a sit-down job, yet it finally came to the point where my physical condition, along with a considerable amount of brain fog, left me unable to even do that work.  Fortunately my doctor prescribed Procrit immediately, even though my hgb was above 10, because of the precipitous drop, but this was only sufficient to enable me to continue with treatment.  I had to quit working full-time for the duration.

I think it's unconscionable that your PCP won't write you a note.  I like the idea of bringing the package insert to your boss, explaining that your doctor is out of town and this is all you can do for now.  You might also print out some of the threads on this forum about continuing work.  Almost all of us have had to make some adjustments in our schedule, from reducing the number of days/hours we work to quitting our jobs entirely.  

I hope you're feeling better soon.  A lot of people are run over by treatment initially and then, as they go on, they level out and manage to do most, if not all, of their daily tasks.  Be well.
pigeon

[btsmith]

   If it makes you feel any better, my Rhem Art doc gave me some pills for joint pain (hep C) and was suppose to have my blood checked everyweek.  He took off on a 2 mo. vacation and I found out later nobody was monitoring the blood.
Sounds like your doing better than most.  Keep it up
btsmith

[orphanedhawk]

I was the queen of denial when first diagnosed. The info. online scared me too.

Now for that GI of yours: it is good to have a positive attitude but the truth is some can work and go through tx with few sxs, others have a very difficult time. I suggest you phone your GI, ask to speak to a nurse there and/or the replacement GI and tell them your problem. If that doesn't work take the insert (from interfron) with possible side effects to your PCP or your boss and insist that you get what you need.

Personally, I don't know how people manage to keep working during tx, but many do.
Good luck

[FloridaMouse]

gettings to you from the Vero Beach area.

Mouse

[R Glass]

Welcome to the Forum. We all pretty much went through the same thing when we first were diagnosed. This place has been a lifesaver for most of us. You have found the place where people world wide meet, that HCV has affected their lives.
As far as what you can and cannot do, time will only tell. The side effects are different for everyone.
I hope you are one of the “Lucky Ones” that have mild side effects.
The weekends can be slow here sometimes. Welcome, R. Glass