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5 days ago · June, 2020. Time to get on with life? in Transplants

@rosemarya hi Rosemary. As you know I went in for an ERCP on Mon 22nd to remove the stent from my bile duct. I was praying not to get pancreatitis (like the first 4 times) but no such luck. I got a double whammy and have been in Hospital since Mon morning. Back on hydromorphine, morphine, demerol and T3s for the pain. Plus strong anti-nauseants. I can't seem to get a break lol…at least the stent was successfully removed. Not sure when I'll be released, its been 6 days already.

Sat, Jun 20 8:47pm · Restless Leg Syndrome in Sleep Health

@bill54321 the dill pickle juice worked realky well for me and also settled my stomach.

Sat, Jun 20 8:40pm · Transplant Evaluation - What to expect in Transplants

Rosemary, sorry to jump in but I felt I had to add as to the "wait" for the "call". I waited 18 months and my decline was rapid. The symptoms got worse every day. I was just praying for it all to end. The wait was incredibly hard. I remember writing to you in despair many times. You kept me going and helped and mentored me through very difficult times. If it weren't for you and others on this page I don't know how I would have persevered. I can only say to anyone else waiting for a transplant to seek advice, ask for help and talk to others who have experienced this or are currently going through this. ❤

Sat, Jun 20 2:50pm · Restless Leg Syndrome in Sleep Health

Just a quick note. My personal experience with clonazepam….a very addiictive drug and bad for your liver. You zone out and it make you lethargic and fuzzy. I was on it for quite a wile and it was very counterproductive. It proved to be a detriment to me.

Thu, Jun 18 9:19pm · Transplant Evaluation - What to expect in Transplants

@rosemarya Hi! Im so hapoy to connect with you! I think that the stent is to be removed but they won't know until I get there. They can promise me nothing as to the outcome whether I get pancreatitis or not. I'm praying that I don't get it yet again. It is so unbelievably painful. I don't want another extended hospital stay as I'm put into a room to recover not necessarily transplant friendly. The surgeon doing the ERCP is the head of his department and works mainly on transplant patients. Thus said, there are no guarantees. I just pray they give me enough sedation so I don't had to go through the nightmare that I've been through before…being awake and feeling everything. 🙏🙏🙏

Wed, Jun 17 1:25pm · Transplant Evaluation - What to expect in Transplants

I had my evaluation via telephone the beginning of June. All seems to be OK. I'm still having blood drawn once a month though. My ERCP is scheduled for June 22nd so I'll be in hospital for that. I don't have too many worries about Covid at University Hospital but rather the outcome of the ERCP. Praying I won't have pancreatitis again. I don't want to spend a week in hospital.

Mon, Jun 15 7:54am · Post Transplant Surgery and Early Recovery: What's normal? in Transplants

@mpow00 hi there! Congratulations on your surgery! I am 18 months post liver transplant. Everyone "recovers" at different times. You may get impatient but go slow and let your body guide you. After my initial surgery they had to open me back up. I had just had the staples removed and then I had to be stapled back up again.
I think I was ready to drive about 6-7 months post surgery. I still have numbness across my abdomen and don't expect to ever get any feeling back. I still get a sharp pain every now and then when I twist my abs. (pain on the right side on the incision site) even though I have been at the gym working out since Jan 2020 then at home. I found sleeping on my back painful and am a side sleeper. In hospital I was in agony with back pain. I started experimenting on my side after the staples were taken out. I would prop my pillows behind my back and lie half on my side leaning back onto the pillows. A long body pillow would work great. As for the bile duct..well..mine was blocked and I've had 4 ERCPs (procedure to insert stent). 2 failed and 1 they inserted a plastic tube which led to the 4th procedure when a metal stent was inserted. I contracted pancreatitis all 4 times which is debilitatingly painful. Each ended in a week + hospital stay. I'm booked to have this metal stent removed June 22nd. I'm praying for a successful outcome without pancreatitis. Unfortunately these procedures held my recovery back by at least 6 months.
My story is just that, my story. Some people recover at a faster rate others slower. Praying that your recovery is a speedy one.

Sun, May 31 1:30pm · Post Transplant Surgery and Early Recovery: What's normal? in Transplants

@loungingsofa70 hi there! I am 18 months post transplant (liver). It took me a year to start to feel relatively "normal". I joined a gym at 13 months post transplant as that is when I felt able to do more. Prior to that I had fatigue, loss of appetite, insomnia and sore joints. I'm now stronger and much more confident. I thought I would never get better. If I had not been proactive and just waited I may not have had any progression. My mantra..You can do this…and I did. After all we've been through we must continue to fight for our well being. I still have complications (I'm due for surgery ERCP again June 15). But I'll go into this prepared. It takes everyone to know their own bodies and what they're capable of. We all recover at our own pace in our own time. Chin up!!