Followers

Showing posts with label hepatitis C. Show all posts
Showing posts with label hepatitis C. Show all posts

Thursday, December 20, 2012

Blessings abound!

In checking the website that updates us on what drug trials are available, we have discovered that our doctor is finally approved to do a trial with the drug combo we have been waiting for! It is an all-oral treatment (no miserable shots) and Interferon-free (nasty drug with particularly bad side effects, both while in treatment and long-term afterward). And it is exciting to see that so far, it looks like the treatment will only be 24 weeks, instead of the 48 weeks that is mandatory with all drugs presently available (which would mean Alan feeling like he had the flu for almost an entire year).

The website also listed qualifications to be included in the study, and based on everything listed, it looks like Alan will qualify for the treatment. We are afraid to get excited yet...but cautiously speaking, it looks like great news! :)

So, we don't know when yet, but it looks like we will be able to start the treatments soon (likely January or February). Alan will have appointments with two specialists in Atlanta on January 2, so we should know more after that.

Also, my friend Susanne Vyhmeister has been working diligently on getting approval for nonprofit status for the ministry she is setting up to help us and others like us who are in ministry and are unexpectedly bombarded with treatment expenses. Immediate, huge expenses for the MRI, biopsy and other things are past for right now, and so far Susanne's huge efforts have helped raise $1,125, for which we are immensely grateful! Things like eating organic food, juicing, and child care while we are gone to appointments in Atlanta add up bit by bit, but if Alan is able to get accepted into the drug trial, that will help with at least some of the costs regarding drugs.

So, thank you all for your prayers and support! I can't tell you how much they mean to us. Over and over I am learning that when we invest in loving others, the investment comes back to us with great returns, just when we need it most.

Blessings and merry Christmas to you all!

Nicole

Friday, October 12, 2012

Blessings and miracles

Two weeks ago today Alan was anointed by several close friends within his pastoral circle. We all prayed together for God's will, and if it be for the glory of God, for Alan's healing. Many of you joined us from afar, and we sensed the presence of the Lord with us powerfully.

I am delighted to report that while we have evidences that Alan is not completely healed, he does have significantly more energy than he had for some months prior to the anointing. We observed this immediately. Alan has not needed a nap every day when he came home for lunch, something that has been nearly indispensable for some time. And he has been able to get by on 8 hours of sleep or less per night. This was an immediate answer to prayer, and nothing short of miraculous.

I have total faith that God can heal my husband, and that if He does not, it is because He has something better in store through this situation. But it has been a great boost of faith even for me, to see that God has done something miraculous to intervene in our situation already.

Whether this is a temporary miracle to enable Alan to accomplish the many extra responsibilities heaped upon him right now, or a permanent blessing, we do not know. We are simply grateful for the blessings as they come.

We are also very grateful for the prayers that so many are sending up in our behalf. Thank you all, so much! We know that prayer does not change the heart of God, but it changes us. It enables Him to pour out blessings that will make a difference for good in our lives and the lives of others in our support network. If we do not pray, we are likely to take for granted whatever blessings are given to us.

Please pray for us specifically this week, that our appointment with the specialist on Wednesday the 17th will go well. If possible, we hope that Alan can qualify for a new drug combination that may have a trial in Atlanta starting in January. We are afraid to get our hopes up, but if he qualifies, it would make it possible for Alan to finish treatment in only 24 weeks, instead of 48. He also might escape some of the terrible side effects of other drugs, and have a higher likelihood of recovery.

Thank you all again. We are so, so grateful for all of you, and most of all, grateful to God for sustaining us through everything.

Friday, September 21, 2012

A different kind of blog post from the usual

Years ago, I started this blog as a way to keep my mom updated on the amusing happenings in our household (since I couldn't remember them all well enough to tell her on the phone). Over time, she and I told other people about it and it metamorphosed into a window into the Parker household.

Well, it's still a window into our household, but some of the goings-on are likely to surprise you this time. They've certainly surprised us.

So...this post is an update on a new beginning in our lives. Not one we anticipated or would have chosen, but apparently one that God sees can bring blessings to our lives. Trusting that God is a God of love, we believe this new journey will teach us many precious lessons about the character of our faithful God.

Alan decided to write this update in his own words.

Dear Friends,

A number of you have been asking about my health, and we wanted to share publicly what has been happening so we can clarify the rumors and also solicit your prayers.
During the summer, we followed up on some routine blood work that had indicated elevated liver enzymes. The result was shocking. I have hepatitis C, and have likely had it for several decades. For those of you who don’t know much about the disease (as we didn’t), it is a virus that attacks the liver, slowly causing inflammation and scarring. Most people who have it show little to no symptoms and are unaware of the disease for 20 to 30 years. It is not easily transmitted, except through infectious needles or blood. We are not sure exactly when I caught it, as I had both blood transfusions and surgery during my childhood and youth in Africa. Since the virus was only discovered in 1989, transmission through blood transfusions was common.

At the end of the summer, I got a biopsy to determine how far the disease had progressed. Unfortunately, I have stage four liver disease, known as cirrhosis. A normal liver is stage one; an inflamed liver is stage two; a hardening or mild scarring of the liver (known as fibrosis) is stage three. Stage four is when there has been permanent, irreversible scarring of the liver and is the last stage before liver failure. While there are many potential complications, the greatest risk is the development of liver cancer, which occurs in 20% of all cirrhotic patients. Even without cancer, if the virus remains in my system, the condition will likely worsen and I will need a liver transplant.

I don't feel sick. Like most patients with hepatitis C, I don't experience many symptoms. Other than some mild fatigue and insomnia (that we had initially put down to the stress of my accident in March), I feel fine. I have continued to engage in my regular teaching and evangelistic ministry and we could almost fool ourselves that I do not have a potentially life-threatening disease. But the biopsy and test results are clear. Unless we do something, as our specialist put it, there will likely be severe liver complications within five years.

We have been through the cycles of good and bad news. First, we found out that there was medical treatment available that was able to clear the virus from over 80% of patients.  Then we got the bad news that I have the worst type of virus (known as Type 1), which has traditionally only had a 35% success rate. Then there was more good news. In the last two years, new drugs have been made available which have doubled the rate of success for Type 1 patients. Then more bad news, as we found out the potential side effects of treatment were severe, including fevers, fatigue, rashes, anemia, a lowered immunity, depression, nausea and a host of other unpleasant possibilities. About 15% of patients have to stop treatment because they can’t tolerate the side effects.

We have visited three liver specialists and talked to numerous doctors in our friendship network such as Neil Nedley, Mike Hollie and John Chung. It is clear that there are no natural remedies that will kill the virus. While we are taking steps to be as natural and healthy in our diet as possible (and fortunately, we had already been eating a healthy diet), we have no other recourse but to pursue treatment. There’s a danger in posting this publicly, as every person who has found a natural remedy to work for them will try to persuade us to adopt it so that we can fight this disease. We’ve looked into this extensively and we have not found a single person who has been cured of Hepatitis C by natural means.

So while we are convinced that we will do treatment, we are still finalizing what that treatment will be. In October we will see a fourth specialist to consider a clinical trial. There are several new treatments that claim to have better efficacy and less side effects. However, they are not publicly available as they are still being approved by the FDA. We are going to be carefully looking at our options before making a final decision and we hope to start treatment by January. My treatment is expected to last a full year and we will not be able to do any significant travelling or speaking during that time. Our hope is that I will clear the virus within the next year and then begin restoring my liver. We are hopeful that with natural remedies and a healthy lifestyle we can avoid a liver transplant.
  
We would appreciate your prayers as we move ahead. With three young children (who vaguely understand what is happening) and a burgeoning ministry, it is a little scary to face our own mortality. We are planning on an anointing in the next couple of weeks and believe in God’s restorative power (whether by medicine or more miraculous means!) Regardless of the future, we are grateful for your support, and most of all to our loving God, who never allows more than we can bear. We are confident that even though He has not ordained suffering, He uses it as part of His great plan to change us into His image, and to reveal to the universe that sin (not pain) is the enemy. Whatever is ahead, His hand is over our lives, and we trust His loving care.
Alan and Nicole