Update – A Decline

Aug. 13, 2014

Sadly, I have hit a decline in my health. Have been very tired and weak the past few weeks. Dealing with starvation pain and muscle wasting in my legs. Very low energy levels. Low food/liquid intake, been vomiting and dehydrated. Saw dr yesterday and he said I am clearly very ill and our last option for me is TPN (liquid nutrition received by IV thru my port). We are hoping to start in a few days. Also ordered home health and daily home IV saline infusions. This means I will have a needle in my chest and be hooked up to IV bag everyday for most hours. TPN is used as a last resort because it can come with risks, like blood infection/sepsis, clots, organ failure, metabolic imbalances. The dr said since I have tried Meds and feeding tube in past, and pacer not an option for me, I am left with needing TPN to help get my nutritional state more stable and to give my GI track a rest. Sadly my progression is part of the complications of a devastating condition I have called gastroparesis. And also from not being able to absorb properly thru my GI track because of past abdominal surgeries. Luckily, there are some people who are on TPN for months and have no complications. I have been on TPN once in the past, and got sepsis after a week. Was not good. But I’m hoping this time around I will be better because it will be thru a port instead of a PICC line. And my port has been working great thus far for fluids. Hopefully the TPN will only be for a short period. We shall see what happens. I am feeling both scared and hopeful. Could use some good thoughts. and hopefully I will turn a corner for the better soon.

And please forgive me if I have not seemed like myself lately or if I am too tired to reply to comments or have conversation. My energy has been low and I have been resting often. Hopefully once I get some nutrition I will start to feel a bit better. Thanks for checking in on me and for taking time to read this. It is always a pleasure to hear from friends and family and I am thankful for all the encouraging words and support. I will keep fighting the best I can.

6 Responses to “Update – A Decline”

  1. Meghan Says:
    August 22nd, 2014 at 2:50 am

    Julie-

    Many prayers are with you and Julian. You are an amazing brave soul who deserves the very best. I feel so blessed that for a moment in time you were a huge part of my life. Please keep us posted on how TPN is going and if there is anything you need.

    Sending prayers and love,

    Meghan

  2. juliebernal Says:
    August 29th, 2014 at 3:39 pm

    Thank you Meghan. And I feel the same. That means so much to me.

  3. Vincent Fang Says:
    August 27th, 2014 at 11:41 am

    Hi Julie:
    I also got the chronic pancreatities ,this illness for 3 and half years. I read your blog , and I live in Taiwan . I take pain killer for past two years, dr. Said surgery is never an option for me. I think I might take pain killer for the rest of my life. Now I am around 42 years old. My English writing is not good , but I can feel your difficult since I got the same pain. Anyway, you are very positive, and a question is that I know you TP/AIT 3 years ago , however , at that time , u did not have this issue , gastroparesis. Why happened recently. Hope u can get rid of this issue ASAP.

    BR Vincent

  4. juliebernal Says:
    August 29th, 2014 at 3:37 pm

    Hi Vincent. Thank you for writing. So sorry to hear of your suffering. It is not an easy condition to be faced with. But thank you for reaching out and sharing with me, and know you are not alone. My thoughts are with you. To answer you question, to be honest looking back I believe I may have had gastroparesis before having my TP/AIT. I just was not tested until a few years after post surgery. Before having the TP/AIT I used to vomit bile and was unable to eat or keep food down. It is really hard to say for sure the when and how part of it. Not really sure. Maybe it happened from having a connective tissue disorder, or pancreatitis, or surgery on my stomach. Some people can even get it from a virus. I had mono once, so could have been from that. It is really hard to say for sure. Some people never find the reason of why it happened. Hope you are able to have some good days and hope your pain is able to get better as well.

  5. Vincent Fang Says:
    September 6th, 2014 at 3:37 pm

    Hi Julie:
    Got your answer. Thanks for reponse. Honestly speaking, I hope I can have the same surgery like you to get rid of pain. However, all of Dr. I met in Taiwan rejected me. I think it is very expensive for me to go to find a Dr. In U.S.
    Anyway, sometimes I feel hopeless, and I will read your blog and see that you are so brave to face this terrible disease. And then I feel I am not alone and there is someone like me. Sometimes , I ask God why give us so much pain in our life.

    Br. Vincent Fang

  6. juliebernal Says:
    September 16th, 2014 at 4:04 pm

    Hi Vincent. I am so sorry to hear about the surgery not being offered to you. I realize there are many countries not offering the surgery, and I have even seen many in the US even having a hard time getting approved as well. I have come to be very thankful for the fact that I was able to have this rare kind of surgery and transplant. Some days it still shocks me when I think back and remember how much I have been through. We learn how to cope with each passing day. Hopefully one day in the near future the surgery and transplant will become more known and more available around the world. It is a hard surgery and a long and never-ending recovery, and sadly it is not a cure. It comes with so many risks. And sadly at over 3 years out, I am having daily pain again. Still thankful for the surgery, but I still suffer a great deal. But everyone is different. So do amazing well. Some may end up in worse shape. I wish there was a true cure for chronic pancreatitis. Not an easy road for any of us. No matter what we do, there will always be a period of learning to adjust. It is so heartbreaking to see how many of us around the world are suffering day in and day out. Please know you are not alone in this fight. You my friend, are also very brave. My thoughts are with you. – Julie B.

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