If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

James and Stomach Issues

Collapse

About the Author

Collapse

Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • James and Stomach Issues

    So James and I went to Egleston in Atlanta on Thursday for a gastric emptying study. We took a Chic Fil A sandwich and sprite. They took his food to the back and put radioactive stuff on it. He ate it and then laid on the table for an hour. After and hour the food should pretty much be moved out of his stomach.

    After an hour, all of the food was still there. So they had us leave and come back an hour later. An hour later the food was still all in his stomach. So food apparently is not moving out of his stomach.

    We had an appointment next with his Gastro dr afterwards. We went and saw him and told him how the test went. He said he believed the delayed gastric emptying was from his heart failure and his intestines not getting enough blood to work properly. But he said when he called the transplant doctor that he did not think it was his heart because his EF is not as low as 30. The gastro doctor said he could have a small blockage in his intestines to or it could be like he said earlier his heart failure keeping his intestine from working properly.

    Then he told me that he got the Upper GI report and it showed he had refux up to the third level of his esophagus and a small hiatal hernia as well as some type of "polypoid like growth at the base of the esophagus. He is not sure what it is and said he will do an endoscopy to get a biopsy of that area as well as the lining of his stomach and also take a look at it.

    So that adds more stress to what is already going on. Does anyone have any opinions as to if you think it is heart failure or something else?

    On another note, Dr. Maron called James the other night and James did tell him he has agreed to pursue the transplant. Of course we have to get this stomach and throat issue resolved. We have an appointment with the transplant center again on January 4 and the endoscopy is scheduled for January 12.

    Thanks for your input!
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    Re: James and Stomach Issues

    It sounds like James is making good decisions and I'm glad your addressing this troubling stomach problem. I know its been asked, but is he on any pain meds? I know they slow the system down, but wasn't sure if he's taking anything.
    Hoping for the best for you & him.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

    Comment


    • #3
      Re: James and Stomach Issues

      Janet .. so sorry for James and all these difficulties.. I just had a partial colectomy end of September which became complicated and also have gastric ulcers as a result of gastric surgery done 5 years ago. Dr Maron feels the heart failure and all my HCM problems ( very stiff heart) directly relate to my digestive issues and led to me having surgeries. .. and the complications. It is important for James to get the workup for transplant to try and thwart other issues from becoming a huge issue. Because he is young they may consider other factors differently for a transplant for him... which is good.( so hopefully he will be a priority). Some of us will never be candidates because of the strict criteria used, low number of available organs... . age and co-morbidities that have come about with a struggling HCM heart also will influence decisions for transplant as these other issues can chip away at the overall health of the individual.

      Best wishes and do keep us posted.

      Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment


      • #4
        Re: James and Stomach Issues

        Janet,
        I'm sorry to hear about James' stomach issues. Hoping that you can get some answers. Wishing you peace as you muddle through this.
        Theresa
        Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

        Comment


        • #5
          Re: James and Stomach Issues

          I have this issue too. It takes me four times longer to empty my intestines than the average person. Ironically, I always have diarrhea. I was on Reglan to speed things up and that helped. Now I really don't have to many symptoms with it so we just let it be. No one has ever related it to my HCM or heart failure. I do know that pain meds will slow things way down too.

          mary S.

          Comment

          Working...
          X