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This and That and Talk - My Transplant
Transplants | Last Active: Aug 14 9:57pm | Replies (1677)Comment receiving replies
@rosemarya @jeanne5009 Day 8 still in hospital. They placed a drain for the bile into my side. I've been on clear fluids for all this time. Tea, juice, jello, gingerale 3x day every day. Still suffering from severe/chronic pancreatitis which is very painful. On morphine and tremadol every 2 hours. They are opting for a 3rd try at an ERCP once I recover from this last attempt. Diet has critically lowered my potassium magnesium and phosphate levels. Getting supplements through IV. Not sure when I'll get to go home. Floor I'm on is not conducive to transplant patients. Feel like I'm wasting away. They seem to have finally broken my spirit. Managing day-to-day.
Replies to "@rosemarya @jeanne5009 Day 8 still in hospital. They placed a drain for the bile into my..."
@gaylea1. I can understand how discouraged you must be, but please don’t let them break your spirit. I’m curious too about what @rosemarya asked - is your transplant team working on this with this with your other doctors? When I was in the hospital with legionnaires disease they put me right on the transplant floor.
JK
@gaylea,
My friend Gary is in the hospital 14 days now. He Had a blockage/stonei n the main bile duct. They tried the ERCP twice before they sent him to specialist that is basically the same procedure but with ultra sound and the ability to get further down the esophagus. They found a 9mm stone embedded on the wall of the main bile duct. He had his gall bladder removed 1 yr. Ago. I don't know why they didn't go for the ultra sound one immediately..must be an insurance issue..
He has a drain and has been on 4 different antibiotics to get wide spread coverage. Now he had a HIDA scan and 2 CT Scans to make sure everything is ok. They found a cyst on his panceas..that's the next project.
I'm thinking some of this sounds familiar to you.
You have been through so much. Continue to question your docs as to why they are doing tests.
I hope your care in the hospital is better than Gary's. I caught the nurse telling him she was giving him lasix...it was mucinex! She even had to look up Mucinex on Google. Dumb as Box of rocks!.
Finally Gary is getting better and you will too.Thanks for sharing your story..it is so helpful for me and I am sure others. Keep up your great spirit and thank God every day for all the good people you have surrounding you.
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Gaylea, I am so sorry to hear about what you are experiencing. I do not know anything from my experienced to say to you about all of this. I imagine that you must be fearing another attempt at the ERCP, but I do think I understand the medical necessity to wait until you are recovered enough before that attempt.
Being on a floor like that concerns me for you. Where is your transplant team in this? Are they checking and making sure that you get what you need? I was hospitalizd after my first year. I had a blockage it was pretty severe situation. I needed surgery (they called it a hernia repair) to fix a kink in my roux en limb connection which is in place of a bile duct for me.
I was on the transplant floor and my transoplant nurse coordinator came by to see me. That meant a lot to me.
Do they know why your duct is clogged?
I send a hug and prayers that you will continue to keep pushing ahead. Even a slow pace, a day to day is for some kind of resolution.