This month marks two years of me being diagnosed with Gastroparesis and my how things have changed. I had an appointment Wednesday with my gastroenterologist and on the way back Jacob and I stopped at Chili’s to eat. On the menu, there was a Caribbean Salad. Two years ago, I would have possibly eaten that. Today if I ate that, it would either have to be pumped out of me or the lettuce would have to rot in my stomach. It took me nineteen years to learn to like salads and now I can’t eat them. I should have listened to everyone; lettuce isn’t so bad after all. (I still have this itch inside to go back to Chili’s and suffer the consequences because some foods are worth it.)
My GI appointment was the most beneficial appointment I have ever had. We discussed how much stomach I have left which is lingering around 20 percent. Several months ago I was placed on a drug from Canada called Domperidone as a last attempt. The drug is not showing any improvement or help unfortunately. As for the feeding tube, I have dropped down a couple more pounds so I am not out of the feeding tube “zone”. He did reassure me that they are not as bad as they seem so I am becoming less stressed about the idea. As for my job, he told me he would help me in any way possible which was encouraging.
The best part came when he ask me if I was still interested in the gastric pacemaker. I told him that I was still interested. To fill in some gaps, the gastric pacemaker is similar to the cardiac pacemaker. It is inserted into a surgically made pouch on the stomach where two electrodes go into the stomach and help stimulate the stomach. It can help with nausea and stomach emptying. It is still experimental so to get an insurance company to pay for it can be a challenge. When we were talking about this, I was so relieved, if we’re talking about it, maybe? Guess what… I’m on the list for a gastric pacemaker!!!! All we are waiting on is for the insurance to approve.
I have thought about possible issues with the pacemaker. It’s a fifty percent chance it won’t work. Insurance may not approve the surgery. I have met with Human Resources several times about possible medical leaves. If I have the surgery, I am playing with my Gastroparesis; it could get worse and cause other motility issues. However, I am willing to take those risks. I am twenty-three and I can do this. I may end up with a temporary feeding tube before it’s all said and done but that is okay. Everything is working itself out. Yesterday I met with Human Resources and I will be able to take a medical leave when I need one. They even told me that if I have insurance approval issues to give them a call and they will get a representative to look into my case to help me get approval. How great is that? It will be okay. Sometimes things have to get worse before they can get better.
Jennifer, I just started reading your blog. I, too have gastroparesis and many problems that come along with it. I have had it since 2004. I see that you are trying to get the pacemaker put in. I hope that you have done alot of research on this because I know alot of people that have had problems with theirs,I have never heard of anyone that hasn't had problems with their pacemaker. Just think twice.ReplyDelete
Good luck....and good health
Thank you for reading. It always amazes me at how strong people are. I read that you have had Gastroparesis since 2004, you are one tough woman.
Yes, I have been doing some research on the gastric pacemaker for about a year now. I do agree that it is significant risk but I am out of medication options. My boyfriend (husband to be) and I have talked for hours about this and have decided this is the route we want to go. As for my career, I am at a stand still due to the Gastroparsis.
I know that my Gastroparesis could become worse. I am very confident however with the team of doctors that I will be working with should insurance approve.
Jennifer, I'm so happy for you! I hadn't heard of the pacemaker, but it sure sounds good! How awesome to get your tummy moving again, and back into as much of the things you love to do as possible.ReplyDelete
I'm dropping by today in the midst of a GP attack and wanted to connect with another GPer. Guess what caused this one...nice to giggle in the middle of GP pain (and feeling weird on the medicine to help it)... I ate salad! Two days ago I went into total denial, and had a bowl of salad. We really can't eat it...dog gone it.
Looking forward to following your process towards the pacemaker Jennifer and am glad you are in the hands of a doctor you trust! (It makes all the difference doesn't it?) Love, Kerry