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My name is also Robert but I go by Bob. I just want to chime in with some encouragement. First, let me say that it breaks my heart when a young person with a young family is diagnosed with this evil disease. My prayers are with you and your family.
I was diagnosed nearly fifteen years ago (Dec. 18) and even after surgey the prognosis was grim. They felt they bought me two to five years with surgery and chemo and radiation follow-up. By the grace and mercy of God, I survived. I was considered “cured”. Then a little over two years ago, I began having serious liver infections (cholangitis) caused by blockages and stones in the ducts in the liver. This was apparently a result of the radiation treatment. I was hopitalized many times with increased frequency and severity and was told by my Seattle docs that there wasn’t a good surgical solution. While in Phoenix for the winter, God led us to a remarkable surgeon who told me “I don’t know what it is going to look like yet, but I’m going to fix this”. I had surgery in March and haven’t been in the hospital with cholangitis since (knock on wood!!). There is always hope. Early on I had put my trust in the Living God to treat me mercifully and just without knowing the outcome. I too was prepared to see my Savior face to face but continued to pray for healing. It apparently pleased God to spare me and I am again enjoying good health. There is always hope…
Grace and peace to you,
Your story sounds just like mine right down to the location of the tumor. It is big surgery but you are young and that will be a big issue in your recovery. This is your best chance for beating it. Try not to expect a straight line recovery. You will have good days and bad days but it will get better. BTW, I had this surgery 14 years ago.
May God extend his grace and mercy to you,
bobAugust 1, 2011 at 3:49 pm in reply to: Will the gentleman with 9 years survivorship please respond to me? #51914
Yes, we are doing well. Life is good… with a few bumps in the road. We will certainly look you up when we return to the valley of the sun. Love and prayers to you.
I am indeed praying with you for divine healing and for peace in the process. No matter the outcome, if you seek Him He will be found of you.
I too want to add kudos to you for your caregiving commitment. During my ordeal of the last couple of years, my wife Donna became my caregiver and more – she became my advocate and protector. That has been difficult for me – I am supposed to be the protector. Now that I am again healthy I have much more appreciation for her and the wives on this forum who daily deal with the drama and the trauma of dealling with a life-threatening illness. Jesus said that there is “no greater love than this…”. My prayers continue for you and Tom.
bobJuly 30, 2011 at 2:45 pm in reply to: Will the gentleman with 9 years survivorship please respond to me? #51911
You may be referring to my story. I will have fifteen years Dec. 18. If you are looking for a magic bullet, I don’t know of one. I had my bile duct and gall bladder resected and my liver essentially connected directly to my jejunum. They were unable to get clear margins so I had radiation and chemo follow-up. The prognosis wasn’t good. The doctors felt that they were buying me time. As for me, I continued to live my life as if all was well. Six months became a year; a year became five and so on. I tried to eat a healthy but normal diet, kept active with exercise, tried to be aware of the daily gift of life, regularly expressed my thankfulness to God and made a point of enjoying the people I love. I am here today because of the grace and mercy of the Living God – nothing more – nothing less. For some reason unkown to me, it pleased Him to heal me. It’s all about Him not me…
May God favor you with His grace and mercy,
We celebrate with you! Two years can become three and so forth a day at a time… Lots of prayers back at you. BTW Jim, I like your new word too. We’ve all experinced “scanxiety.
Welcome to our ‘family’ forum. You are wise to seek multiple opinions. Particularly if treatment can lead to a resection. Resection seems to be the only long term solution. Praying for long term success for you.
First, you have a few things working for you. You are young and it appears that you have an early diagnosis. Second, try not to get ahead of the prognosis. Many people have done far better than the prognosis so try to avoid the ‘what if’ scenarios. You are an individual – not a statistic. I was given a poor prognosis and am still on the right side of the grass many years later. Prayers are coming your way…
Just in the last couple of days I was wondering why I hadn’t seen any posts from you. It’s good to hear from you though I understand your absence. For now, I’m just down the road a bit in Seattle so we’re kind of neighbors. I too try to see the hand of God in my circumstances and am so grateful for His grace and mercy. I pray that He will allow you many more milestones and memories. Grace and peace to you…
So sorry to hear about this latest developement. Praying that Tom can again get through this one. God bless the two of you…
Please accept my hearfelt condolences. I can imagine your sense of grief and loss. The “bride of my youth”, my wife of 46 years is the reason I get up every day. May God heal your broken heart.
Congratulations on reaching your goal. I’m sure your son’s graduation ceremony will be a joyful event. Now… on to the next goal. Prayers coming your direction.
Thanks for the well wishes. Well… I’m “tubeless” and bagless again! A week ago Thursday it came out with out much fanfare. I had several days of low grade fevers and generally feeling sick. Then, I awoke at about 3AM Monday morning all sweaty – pillow and sheets wet. I went back to sleep and when I awoke at 7 I felt like a switch had been turned on. For the first time since the surgery I felt like myself (albeit with the strength and stamina of a twelve year old girl) and since then I’ve only had two episodes of feeling a little unwell. So… as of Sunday morning we are off on a leisurely road trip back to Seattle for the annual ‘rain festival’. Donna’s not ready to leave sunny Maricopa knowing what the weather has been in Seattle but we are both missing family and friends. It’s time…
By the way, Lainy among others is always recommending second, third and even fourth opinions. My story has the good prospect that it does because we saw a third surgeon. The two best liver surgeons in Seattle had no real solution for my blocked duct. But the third “opinion” from Dr. Koep was that something had to be done. The greatest risk was in doing nothing so he and his staff put together a plan and did the surgery. He is convinced that I will have no more cholangitis infections. I pray that he is right.
I too am sending prayers and bed bugs – er, uh big hugs your way. God Bless!
Whooo. You are one tough ‘hombre’. A mere mortal couldn’t have pulled this off. I am so pleased that there is no recurrance, no organ failure and that you are again feeling better. It’s hard to remember that these drain bags drain off fluids which must be replaced. I feel like I’m ‘pushing’ fluids to keep hydrated and to keep from being light-headed and wobbly. May God continue to be your shield…