Hep C and Faith

2011-04-17T17:59:00.000-07:00

It's been 3 1/2 months since I finished treatment and thought that I'd have this head of glowing hair. Well, I didn't wake up and feel like it was blowing in the wind. Not quite yet. I was expecting too much too soon. My physician assistant said it will come back. I was using extenstions, but was getting to the point that it was more of a challenge than I wanted any longer. Hanging on to my hair in the wind was a bit unnerving. Fortunately, they never left my head! Yeah! So I finally bought a human hair fall and looks great. It's wonderful to throw on and go on! Someone had told they heard of a woman who stopped treatment because she was losing her hair. I have no idea what happened to her and this was such an easy fix. This past week I gave 10 - 1/2 vials of blood. Can anyone say vampire?! April 25, which happens to be my birthday, will be my 3 month check up. Like I've said before, the Lord has taken me through this health journey will relative ease. I have read about, spoken to and heard about numerous people who have gone through the interferon treatment with horrible side effects. The Lord has for whatever reason allowed me to get me through this with relative ease. I am extremely greatful for this and believing that my check up will be a positive one showing that my levels are still coming down. This has been the never ending winter with the never ending cold in central New York. One day the sun will shine in the land of dreariness and plan on a really beautiful day on my birthday. I'll let you know the good news...

2011-03-12T08:11:00.000-08:00

Feb. 12, 2011

So, as you can see with God's unmerited favo,r I excaped the side effects of the dreaded interferon. I had the nurses at work do my injections for about 7 weeks and and then figured it is about time that I do it myself at home. I was a bit nervous the first injection and went off with no problems.

When I first started my levels were around 4.5 million and in three months had dropped to 10,000! Oh, was I doing a dance of joy. On my next 6 week visit they were undetectable!! This was such great news. I was shouting with a very thankful heart.

I was still feeling well, tho I was loosing some of my hair, especially around the front area of my face. Thank God my daughter is a hair stylist and she made great extensions for me that were totally unnoticeable to anyone. I am still wearing them as my hair is sill thin.

Over the summer I did have about 6 weeks of fatigue. It was not to the point of being unable to work just enough to take the wind out of me doing stairs and doing much that was anything exerting. I would climb the stairs at home and at half way have to stop and rest and then when I got upstairs would go right to my bed to lay down for 5 minutes and then was fine and would get up.

I know a few people who have hep C and of all that I have read or spoken to I am the only one who has skated through this was relative ease. My Physician Asst. said that it does happen, but is rare. Why the Lord has let this happen to me and not to others is a question that I don't have an answer for. Of course, I am greatful that I am that rare individual, yet it breaks my heart and have shed many tears for others. All I can do is pray and let them know that no matter what our eye sees God is in control and He has a specific plan for each of us. He is never surprised by things that happen in our lives. We are and must learn to trust Him no matter what each situation looks like in our lives. I hope that even if the levels did not come down I would still testify of Jesus's unfailing work in my life.

There is much to share more on my continued journey with hep C and until next time....still standing on still waters

2011-01-02T12:48:00.000-08:00

If you have never read my blog before please start at the bottom and work your way up.

2011-01-02T12:45:00.001-08:00

Well, it certainly has been far too long since I’ve blogged and have much to share. So, I started taking the celexa 3 weeks prior to starting the interferon to help with the onset of possible depression and had no side effects from it. Now the three weeks have passed and it is the week to begin treatment. I wasn’t depressed before I took this so guess I’m really not depressed by taking the celexa.To say I was scared was putting it mildly. How will I function? Will I go to work every day? How exactly will I feel? I had the house cleaned, groceries bought and was as ready as I could be. I am blessed by wonderful friends and family who were all offering to bring meals, clean my house or meet whatever need I had. I almost felt as if they thought I was dying.
I have a clerical position in a doctor’s office and everyone was so supportive to me. I was nervous about giving myself the Friday injections and all the nurses were so willing to give it to me. That was at least one relief. Ok, now it is Friday night Feb. 5, 2010 and I take a sleeping pill in the hopes that perhaps I sleep longer and feel the effects a bit later. Sat. morning I wake up and lay there and evaluate myself. Hmmm, I don’t feel anything. I waited all day for something to come on me. Now, it is Sun. and again lying in bed evaluated myself and still nothing. Everyone at church was surprised to see there and least of all me! I’m thinking is this stuff really working on me? I had prayed that God would spare me from the dreaded and grueling side effects and thus He did. I called my NP on Monday that nothing had happened and she said you are probably very lucky. She said I could still get anemia, rash and irritability. I’m blessed by trusting the Lord with my life and looking to Him for strength. He will never leave or forsake me.
I have no side effects at all. I felt fatigued for about 6 weeks over the summer and that is it! Never got the opportunity to take advantage of the offering of meals and cleaning my house! Oh that part would have been the only good thing.
Much more to come….still standing on the still water

2010-07-10T15:44:00.000-07:00

I couldn’t go through with the treatment. I was too afraid of the all the side effects. I decided at that time that I was going to alter my eating and approach things in an extremely healthy thought along with taking vitamin supplements. I was basically going back to the garden.
I did this until Nov. 2009 and then felt it was time for me to go to see the Physicians Asst. at the Gastro office. I wanted to know how I was doing and thinking about have the liver biopsy to see. I told her with absolute certainty that I was not doing the interferon treatment. We talked about scheduling the biopsy and I left. I started thinking that I really do need to start treatment and trust God that he will get me through the next 48 weeks. I have read and spoken to people who have done treatment and had nothing good to say about it.
I went to the hospital for a liver ultra sound and then the biopsy. The nurse who was with me said I see on your chart that you do not want to do the treatment. Again I said how afraid I was of it. She told me that her husband had hep C and was sick from the treatment. They had an appt. later in the day to see how his viral load was at 12 weeks and then decide if he should continue the treatment if it is not dropping.
I had the ultra sound and was told that it looked normal. Well for sure I was expecting great results from the biopsy. I had this done on a Friday and my PA called me Tues.and the results were not what I was expecting to hear. She said that I had Stage 3 Fibrosis and Stage 4 is Cirrhosis.
I told her that I wanted to start the treatment and wanted to start the antidepressants before I started the interferon. I had heard that depression was a huge side effect and thought that if I got this into my system before then perhaps I could possibly nip this in the bud. She said she wished other patients would do this. She put me on Celexa for 3 weeks to see how I’d react to it.

Thanks for stopping by and until next time….I stand still on the still waters. Diane

2010-06-30T17:45:00.000-07:00

Are you kidding me? I'm the perfect candidate. I'm no. 1. Don't you get rid of 201 not 01? She said she was sorry and I could participate with the practice but the cost would be up to me. I had a schedule of all the times I'd me meeting with the study and the co-pays would cost me a fortune along with the cost of the meds.
I must be strong in my faith with Jesus. I try not to wear my emotions on my sleeve. I must trust and believe God has a plan, purpose and reason for this dreaded disease. I was surprised. He was not. He hasn’t kicked me to the curb. He has sent me on a different path. Oh that I may be pleasing to Him. The Lord was speaking to my heart about not having a defeatist attitude. My anger has finally left me. Still having anxiety, though. I thought God had opened a door for me by going to the study and trial and now the door just slammed in my face. I once again know that God is in control of my life. What is the definition of faith? Hebrews 11:1 defines it as “the assurance of things hoped for, the evidence of things not seen.” We may not understand the way something really works. How can a computer or phone for that matter transfer our voices and information via unseen lines or by a satellite up in the sky and across the ocean? I know it just works. It’s the same way with the Lord. He is working on our behalf even though we don’t understand or see what He is doing.
I must praise Him in the midst of what seems to be madness. I must stand in the gap for others and not continually have a woe is me attitude or be cynical toward everyone else’s life or comparing my life to theirs. God is working in my life. Yes, I don’t see it. Philippians 2:13 states “For it is God who is continually working in you. He is interceding to the Father on my behalf”. Don’t be discouraged!
Thanks for stopping by and until next time….I stand still on the still waters. Diane

2010-06-02T17:29:00.001-07:00

I had gone to the practice doing the study and was given a 22 page packet of what to expect each week and the office visits. Yikes!! I was scheduled for a liver biopsy the end of March 2009. I was called and told that the pharm. company wanted me to move it up sooner, as they were anxious to have everyone get started. We would only be known as a number by the pharm. company, as no names would be mentioned. And my number happened to be 0001dwc. I'm no. 1, numero uno, I am the first on the list! There are 199 more people on this list after me. So now I am scheduled for March 27,2009 for the liver biopsy.
I got a call from the office telling me that the pharm. company is anxious to get everyone started and to have me move my biopsy up 2 weeks. It is a week before and my anxiety is kicking in high gear knowing in 2 days after the biopsy I'd be starting the interferon and the side effects would be attacking me 1 or 2 days after my injection.
A week before the scheduled biopsy I get a message on my cell phone that they had over enrolled and that I was being dropped from the study! I was totally freaked out and hysterical as soon as I got off the phone….
Thanks for stopping by and until next time….I stand still on the still waters. Diane

2010-05-22T08:19:00.001-07:00

Ever since I found out I have Hep C it’s amazing the amount of people I have spoken to who have it. An old friend heard about it and called me. I never knew he had the disease. He was diagnosed in l992. He was on the interferon for 3 months and took himself off of it because of the awful side effects. He said it was altering his personality and couldn’t function at work. This is not encouraging!
I am a very rich woman. I am rich in the fullness of wonderful family, friends and incredible Pastoral leadership. He and his wife are 2 of the most amazing, accessible and loving people to enrich my life. They all are there for me night and day. All would help me no matter what my need is. I have an email list of numerous friends who I periodically update on what is happening and are standing by me with prayers and encouragement.
I love to watch Extreme Makeover and don’t you know the family they were building for had lost their husband and father to Hep C. He was just skin and bones before he passed away. That put me in whirlwind and a pile of tears yet again.
I was scheduled for an ultra sound of my liver on 12/9 and called and asked to have it moved up to 12/3. I had to know the results asap. When I did go as soon as the tech started I started to cry. I have never cried so much as I have over all of this. I was notified that it came back normal. Hmm, this seemed encouraging, or so I thought.
I had told my family and friends, but not my co-workers. I'm not quite sure why I was apprehensive about telling them. I internalized all of this at work and could think of little else. How am I going to work? How much work would I miss? I was petrified of the side effects and being single and dealing with this alone was over whelming me.
Psalm 77:14 “You are the God of miracles and wonders! You still demonstrate your awesome power”. I have always been remarkably healthy. Please God let not these meds make me sick. Let not this awful disease rob me of my life.
I told my supervisor that I had this disease and we talked about me filling out the paper work for the Family Medical Leave (FMLA) which would secure my job for a year. At least that gave me some sense of security. She gave me the papers to take home and fill out and as I was reading, it jumped out at me that you were eligible if you had been employed for the minimum of 1 year. I had been there 3 months and therefore it was not for me. Now the fear was getting a tighter grip on me….
Thanks for stopping by and until next time….I stand still on the still waters. Diane

April 24,2010

2010-04-24T13:44:00.000-07:00

The gastro doc said I had 2 options. One would be to stay with him knowing that this whole process would be costly with many office visits. Two, was he would refer me to a hospital that was doing a study on Hep C and all costs would be consumed by them. Hello, no brainer here. See ya doc!
This is now Jan. 2009 and I met with the provider for the study. I did extensive blood work and they had to send all the information to a pharmaceutical company that is doing a clinical trial in conjunction with the study to see if I would be accepted. I’m thinking, I am the perfect candidate for this study and trial. I’m not taking any medications other than vitamins. The interferon and the trial drug would have nothing to interact with. I’m exactly what they are looking for. The pharm. company was very excited about this new medication and we would not know if we were getting the actual drug or the placebo. They called me and said that I needed to go and have yet more blood work done! I have so much blood work taken I feel like I could date a vampire!
This pharm. company wanted to select 200 people to participate from 200 location sites that would be found in the US, Europe and Argentina. I am having terrible anxiety and fear of taking the interferon. Everyone I had spoken to and read about had horror stories. I had at one time gone to a Hep C chat line and everyone there scared me so badly with the grueling side effects I exited right away. I just wanted to lie on my bed and crawl into a hole. Oh God, how am I going to get through this? I was held captured in fear.
Thanks for stopping by and until next time….I stand still on the still waters. Diane

2010-04-12T18:51:00.001-07:00

Oct. of 2008 I went to the doctor for what appeared to be cellulitis from a blister that I had gotten from a pair of new shoes. My doc said I should throw the shoes out. Nope, I don’t think so. I loved them and am still wearing them today. She asked me to do blood work. Two days later she called me and told me that my liver enzymes were elevated and wanted to have me be retested for Hep B and Hep C. I was shocked beyond measure. I went and retested the blood work and she called me and said I was positive for Hep C.
I had gone back to the dr for a Hep B vaccine and the nurse was telling me that I basically could write a year of my life off! I don’t want to write a year off. She made me feel as if I was wearing the Scarlett Letter of A for afflicted.
Now I'm really freaked out. WHAT??!! She told me that I needed to see a Gastro doc for this and set me up for an appointment. How could this be? It had been over 30 years since I was living that life style. What was going to happen to my life? I did a great deal of crying and screaming at God “WHY?” This is so surreal.
I had gone online for information on Hep C and read several sites with much information. I had also spoken to people who have Hep C and tried to educate myself. I went to the doctor and was told this has probably been lying in my system for many years. He had me do more blood work to see if I could possibly be just a carrier vs. actually having the virus. Well, of course, I thought I was a carrier. Unfortunately, it was not the case. When I went to see him for the results he told me that I did in fact have the virus. I have genoa 1A. I'm shaking and crying and taking notes as he is speaking, knowing that I'd never remember what he was telling me. My life was about to take a dramatic change….
Thanks for stopping by and until next time….I stand still on the still waters. Diane

2010-04-12T18:49:00.000-07:00