Health- drained to the last drop
Today was my appointment with my new GI... I was already upset that they switched my appointment from next Friday to today, when I desperately needed to prepare for Hurricane Irene and it only got worse when the GI decided to inform me that "we do not treat Gastroparesis... there is only one drug to treat it, Domperidone, but it is not available in the US".
After I picked my jaw up off the floor, I filled him in on the other ways it is treated and explained that I am not able to get liquids in, or to get them to leave my stomach (I average only 20 ounces a day) and my dehydration is getting worse and worse and I wanted and needed at least an NJ-tube (the feeding tube that goes through the nose and into the small intestine) so I could get more fluids into my body and medications past my stomach.
I was then informed that "nobody puts those tubes in unless you are at a severely low Body Mass Index"... and despite the fact that I lost 14 pounds in the past week I am overweight and did not need a tube.
He then went on to say that he wanted me to stop TUMS and take Zantac... I informed him (for the third time in the appointment) that I cannot take pills. Pills... all pills... eat away at my stomach lining and lead to massive GI bleeding. He then informed me that Zantac would dissolve and would not do that. I told him it had in the past.... but, I am expected to 'give it another try."
He looked at my most recent blood work and was concerned by my level of Iron Deficient Anemia and asked if I knew why it was that way... (hello... GI bleeding... !) but by that time I was checking out mentally and just mumbled "I don't know and I don't care".
Then I was asked "are you depressed? Depression adds to delayed gastric emptying"...
The idiot of the day award as about to be given... "Yes, I am depressed... I have a chronic incurable condition, I am being offered OTC Zantac which I cannot take as my only choice of 'treatment', I am chronically dehydrated and it is getting more and more severe and I am told that I will not get what I need because I am fat... gee... I wonder why I am depressed?"
I was then told that I need to be treated for depression... I wonder how they are going to do that when I can't take friggin pills???? Magic Pixie Dust???
He finally decided to order a new endoscopy to check for physical blockages in my trachea and stomach, stretch my esophagus and then a upper GI follow-thru using IV contrast dye as the oral dye since I can't drink Barium (due to the artificial sweetener). Umm... hello... I am allergic to all MRI contrast dye... but he says it will not be a problem. (I guess they have crash carts in the MRI suite)
Let's just say today was not a good day... and after this I got to head home and finish preparing for the friggin Hurricane and discovered that it is 'recommended by the city' that I evacuate.
Sorry, but I can't evacuate... I am just too tired to care and do not have the money anymore to evacuate and since all hopes were dashed of getting any help for the dehydration which will eventually shut down my kidneys (my urine is the color of caramel) it is not like I have a whole heck of a lot to look forward to.
I will get over this by morning, I always bounce back... but for now I am firmly in the "giving up" stage.
I wish I could say I was shocked, but being overweight and having to push for tests to show I was malnourished, I have been there. Is there no one else in your area you can see? Doctors are often wrong so don't let it get you down too fast, you can only own what is yours. I wish there was a short letter from patients we could all hand to our doctors that cites examples of what we don't need to hear and some things they do need to hear. I'm so sorry you have to go through this. One of my goals in this life is to strike it rich and become a philanthropist, sending a team of the best docs to make house calls for all my friends who can't get decent healthcare. And yes I do play the lottery so it's always possible. Big hugs that don't end when you let go, much love and strength! Be safe!
ReplyDeletePenny, I don't know where to start. It's so very frustrating to have a doctor that you had hopes in dash them in the matter of one appointment...and it's sad when the patient has more knowledge. Obviously, he's not the doctor for you - or ANY GP patient when he stated that domperidone was the only treatment He obviously has not done any research, and the probability is because he really doesn't care.
ReplyDeleteI won't say my GI doctor is an expert in gastroparesis or motility disorders - because he's not. BUT his ability to listen, be flexible, research, and work with my primary make him an excellent doctor for my GI issues...he works with me - as a team. He's willing to take my suggestions (I even bring various literature from G-PACT and other GP sources) and work out treatment plans when others fail or may not work so well. As of this week, I will be the very first patient he has ever prescribed Marinol. I guess what I'm trying to say is there is hope. There are "diamonds-in-the-rough" out there...doctors willing to fight the good fight and try to actually help improve a patient's quality of life. Sometimes it's hard to find them. They aren't always from the big universities or teaching hospitals. I look for the ones that listen and that have an open mind. It's been a long, hard road.
Much love and hugs being sent your way...I know you'll find the right doctor for *you* ~Tina
That's do frustrating! I felt really angry when I read your post, I've been there too, I had some horrible doctors that treated like I was crazy and my sickness was due to anxiety and depression! I actually once wrote a formal complaint to the hospital about the way the doctor treated me during the appointment. I hope you find a doctor who listens and cares, they seem to be pretty difficult to find nowadays! Stay safe, hope Irdne doesn't cause too much damage
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