Forum Style

Hello allIt has been over 4 months when I first experienced this horrendous pain! I have had an ultrasound and MRI and it has shown no pointers to my pain.Life has become depressing and quite debilitating with this pain. It is usually there the whole day but at times the pain will start in my upper abdomen and travels to my chest and back. The pain can be so bad that I have stopped going out etc. I've cut out a lot of food like caffeine which I hardly used to have much anyway. Eggs, milk, spicy food, fruits, some vegetables. I don't eat junk food either.The last time I saw my doctor I had lost weight and the liver doctor thought it was anxiety pain. I saw the mental health nurse who saw me crying and listened to me and said it sounds nothing like anxiety pain.I've tried tramadol for the pain but nothing takes it away.I went for a weekend away with my friend. We spent most of the time in the hotel as I was in pain.Sometimes hot compress helps and sometimes I end up having a bowel motion or vomit.Last night at 2am I was awoken by this rude pain. It was HELL. I was all over the place crying and the last place I wanted to go was the hospital as they do not do anything. I'm fed up of people looking at me as a hypochondriac when I'm actually on genuine pain. I have two small children to look after too.The pain subsided after an hour and I managed to get some sleep but today it is coming and going.It can't be GERD as I take lanzaprazole for that and I had an endoscopy which was also clear.Any ideas? So the pain starts in the upper abdomen and travels to the chest at times and radiates through the back.I'm so fed up that when the pain comes, death seems attractive.I have a family holiday booked and I'm thinking of cancelling it!I'm on 3mg prograf x2 a day and lanzaprazole.It will be nearly 2 years of my liver transplant.Thank you

You need to be a member of to add comments!


Email me when people reply –


  • I have experienced the pain you are talking about only one time and that was enough!!! I was transported by ambulance to ER. I really thought I was having a heart attack it hurt so much. I was in AFIB and they administered some typr of medicine. I have been okay since. Went to heart doctor and he gave me two pills to take if it happened again. Hope this helps.

  • The pain you describe is exactly what I had prior to transplant.  I was transplanted because I had PSC - a progressive bile duct disease.  I am not suggesting that you have the disease, but the bile duct connections may have narrowed from scarring.  It is a long shot.  An endoscopy, unless it was an ERCP, would not have found this.  

    What is your current labs, particularly bilirubin?

    Sending prayers your way.  I understand the pain, and it is truly dominating.

    • That sounds painful. I am glad you're better. During the ultrasound they checked some of those issues and it was OK. My bilirubin is 10. In fact my labs are fine from a few weeks ago!
  • Hi Monira,

    I do not know if what I am going to say will be of any help. I started to experience pain such as you describe. I could not eat. It felt like the food did not want to go down and such pain that I did not know should I stand, sit, walk or lay down. When we went to the doctor for my husband' schedule blood tests, I spoke to him. He said during my husband's illness and transplant, I carried all the stress and that caused an reaction such as heartburn. It causes my esophagus to swell which caused the pain and the food could not go down. I am taking Pantoprazol 40mg daily. 

    • Thank you for your reply. Oh gosh I can only imagine the pain. How are you doing now?

      Well the endoscopy I had showed everything clear. My duodenal and oesophagus were good and healthy. That time I had heartburn but it has gone away now.

      So I'm not sure what this pain is. I take lanzaprazole anyway but that doesn't really help with the pain.
      • I did not experience heartburn, only the pain. When the doctor said it is cause by heartburn, I was sceptical. But since I am taking the meds, I did not have that pain again. The doctor said in a couple of months, I can stop taking the meds.

      • As long as I take my meds, I am okay. Both my husband and I are well. 

        • I wish this was the case for me. I really do wish. I have even taken 30mg of lanzaprazole x2 a day which did nothing.

          Can you describe the pain to me if you don't mind? I just want my life back. I feel like I will never recover

          They were meant to do a test for h.pylori but where I live no place does testing on faeces. They said the breathing test is innacurate as I take lanzaprazole.

          Life has started to feel like a burden honestly. At times I wish to die than experience this terrible pain.
          • Have you ever had a 24 hour pH monitoring test? The reason I ask is I have experienced pain that would feel like it would start in my stomach and then go into my back. I have a gj-tube for feeding, and the only way I can get relief when it gets unbearable is by draining my stomach, and the pain makes it very hard to take in more nutrition. I thought it was due to acid reflux, but the acid medication was not helping enough. I had the pH monitoring test, and it showed that my acid was being kept under control. Most of my recorded symptoms correlated with incidents of non-acid reflux. A different medication is used to treat this. I was put on Baclofen, and it seems to be helping me. I think it can help prevent the lower esophageal sphincter from letting non-acid material back into the esophagus, but it is not completely understood how it works according to my doctor. I mention this just in case it might be helpful. I truly hope you are able to get some relief soon from this.

            Best of wishes and many hugs,



This reply was deleted.

Transplant Stories

Members Stories

Transplant News


                      Transplant News



Purolator Air Filters

Thank You

Each month, it costs $60.00 to operate We greatly appreciate your support.

Facebook & instagram

Planetary Biosciences for Cystic Fibrosis

Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need of a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at Thank You So Much!

Latest Activity

Steve Pearson replied to Steve Pearson's discussion Transition from Prograf to Sirolimus
15 minutes ago
Joan_GOL and Mike windish are now friends
1 hour ago
Pamela Brown replied to Steve Pearson's discussion Transition from Prograf to Sirolimus
2 hours ago
Michelle Z replied to Russell Rogers's discussion Thanks for the add.
3 hours ago
Michelle Z posted a discussion
3 hours ago
WBC Drops! via Kidney-Pancreas - Forum Style -
3 hours ago
Michelle Z replied to Kidneyboy's discussion Thanksgiving!
3 hours ago
Joan_GOL replied to Kidneyboy's discussion Thanksgiving!
6 hours ago

Lung Transplant Foundation

Contact Us