End stage of liver disease and Pancreatitus

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jaajnh
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/30/2008 9:46 AM (GMT -7)   
Hello. I have been diagnosed with end stage liver disease and Chronic Pancreatitus. I was diagnosed a year ago. I had to have a j-peg put in as I am no longer able to eat any foods whatsoever. The pain and discomfort are horrible. I just got out of the hospital after another stint in intensive care for about a week. My gastroenterologist replaced my j-peg and did an ERCP, he said the ERCP was unsuccesful. My pancreas is completely calcified. I am not sure where i go from here...I keep getting bacterial infections in the blood and they say I have numerous gastric varices. I feel so sick all the time. I cannot seem to sleep more than an hour at a time. Could someone please offer any advise or possibly insight. I feel scared and very alone. Not sure where all of this is going. Thanks for your time. I appreciate it.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/30/2008 1:25 PM (GMT -7)   
Dear Jaajnh,
First, let me welcome you to the Chronic Pain forum of Healing Well. We aren't doctors, though, and probably can't give you the medical information you may be seeking. We can give you support, and share our experiences.

What kind of a support system - both family, friends, as well as medical professionals - do you have? It sounds like you need some comfort around you, and maybe someone to help you find local resources. I know this is a difficult topic, but have the doctors given you a prognosis for the future? Is there a pain management specialist on your team of doctors? If not, definitely ask for one, or for a referral to one.

You mention you're alone - do you live alone, or just feel alone? We can provide some support from a distance, but your physical condition sounds serious and if you don't have someone living with you who can help, maybe you need to be somewhere there is some help available.

Don't know if any of this helps. Again, welcome.

PaLady

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/1/2009 2:31 AM (GMT -7)   
jaajnh, were here if you want to vent too. This is a great site for that. We all have pain from different diseases and conditions...but many times, the pain is the thing that can frustrate and bring even Goliath down.(kinda why I'm up at 2 am my time writing this)

Along with PAlady (a very smart lady at that...always with good advice), welcome.

jaajnh
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 1/1/2009 7:26 AM (GMT -7)   

Thank you for the responses. I truly appreciate the consideration. I do not live alone, I have a partner of over twenty five years. Thank God for that blessing. My gastro doctor has said that the damage is irreversable and they have placed me on a transplant list. I have gone through the vetting process. I guess now it is just wait and see. I have a primary doctor that is a DO and she is fantastic. I guess I am just a little scared and not knowing what is going on with all the wierd symptoms that seem to come and go. I have adjusted to the feeding tube. I just cannot seem to gain any wieght and the nausea and pain sometimes is just impossible to deal with. What is really wierd is that there are some periods during the day/night, where i feel so loopy and cannot concentrate. I am not sure if it is the medication or just me. I am finding my memory is faultering. I used to be able to have like a photographic recall ability. I was lucky with that in school. I could remember everything that I was taught or read, ect... Now, there are times when I cannot remember why I tried to get up out of bed, or I am talking on the phone and everything goes blank. This scares me! I am a very private person thus I dont share well with my friends, I do not want to be a whiner or anything. However, I have come to the point of needing to know that I am not alone with this and that there are others who are dealing with things like this succesfully and are still living a good life and thriving. I just do not want to give up. I feel like I am losing ground on that front. Anyway, thank you again for the suggestions. I truly am thankful to know that there are good caring people out there willing to listen and help. It is very encouraging. God Bless and Gods speed to all. Happy New Year!

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/1/2009 1:50 PM (GMT -7)   
Dear Jaajnh,
I'm glad to hear from you again, and very glad to learn you're in line for a transplant. I have no idea how that feels to be waiting in line for something like that, but the fact your doctors have all cleared you must mean they think you have a good shot at it being successful. It's got to be terribly frustrating and scary to wait, though.

And I'm also glad you have a partner. I live alone and wish I didn't. But sometimes family and friends can't understand everything we go through, so we are definitely here for that. I'm not sure how many of your symptoms are from medications or your condition, but I do know I (and many others here) have had to adjust to the side effects of meds, and to changes in our lives. We often have to grieve the life we once had, and put together a new one. I'm still doing that and can say it's not easy and I'm not there yet. There are others on this forum way ahead of me, but that's good because it gives me hope.

I suggest asking your doctors (take a list with you to your next appointment!) about all your symptoms - what may be due to medications, which ones may be temporary and improve with a transplant, and which ones you'll need to adjust to. And make sure you've got a good pain management specialist, and maybe a therapist who can help you and your partner navigate this whole process, on your team. But we're on it, too!

Just remember I need you on my team, too! :-)

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 1/2/2009 7:54 PM (GMT -7)   
Just wanted to say, you can have as many soft hugz as you need and
that I'll says a prayer for you, sure hope they can move you up on the transplant list..
Godspeed back to you...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********

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