This and That and Talk - My Transplant

@gaylea1
Sounds like you are doing everything you can. Keep thinking good thoughts. Ask to speak to the Patient's Advocate in the hospital. Sometimes hospitals need a push to do the right thing.

@gaylea1 You have been staying positive, I have been very impressed by how much so. Keep that positive attitude.

I presume if you got bumped from the transplant floor it was because it was full of people just having had transplants. I would ask them to put you back there as soon as there is a vacancy. Like @jodeej I am concerned about your roommate.

At least your nurses are great. Nurses can make or break you when you are hospitalized. Some of them truly are angels.
JK

@gaylea1 could you request to be back on the transplant floor? I would be concerned with that roommate! I'm glad you have great nurses and doctors.
Hang in there. I can understand the difficulty in staying positive. Know you have a lot of people that care.
Blessings,
JoDee

@ contentandwell @rosemarya @jeanne5009 My direct team consists of my transplant hepatologists no other docters per se. I was on the transplant floor but was bumped to general surgery floor. I have been very concerned about this floor. I share a room with an older gentleman who has no control of his bowels and regularly soils his bed and himself. My CT Scans and ultra sounds show no signs of stones or blockages just narrowing. I talk to my doctors regularly and they are not sure why this is happening. My nurses are A One and we discuss each and every medication I take. I have a history of depression and have been trying so hard to keep positive.

@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.

@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, 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.

@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.

@rosemarya
Hopefully Gary will be discharged on Monday. Poor guy has been through it! 2 ERCP then one with ultra sound that produced a 9mm stone. He also has a cyst on his pancreas that will have to be addressed soon. The plan is to find the right doctors, hospital, and insurance. The local hospital is a disaster as are the group of gastros he got stuck with! All lessons learned tie into my issues so it was good I could help.
Had my own 6 mo. Ct scan..waiting for results. One of the residents was sick and needed to NOT be in the hospital. Hoping I don't get it.Im taking extra Vit C as a precaution.
Itchy rash still around. Met a guy in the hospital with Cirrohsis and we compared notes. Lots going on around here.
I'm thinking of Gaylea and all the strength she must have. God is watching over her I am sure.We all need his help.

Jeanne, How is your friend getting along? I hope that he has found a gastro who can make a diagnosis and treatment.
How about you? Were you able to avoid picking up bothersome germs while hanging out at the hospital? I hope that you are getting some rest during all of this.