It sure isn't easy being the patient

I haven't been around due to business in the birthing arena, and more recently, me being the patient.  It feels incredibly helpless being on the patient end of the care provider/patient relationship.

I have been having ongoing issues with abdominal pain over the past several months, and they have gotten worse as time goes by.  I finally sought care when the pain became too unbearable, visiting the ER twice in one week.  Then I had an EGD (upper GI scope) which revealed nothing.  That was followed by exploratory surgery, which did find some abnormalities.

Here's where it gets frustrating -- the surgeon didn't tell me the findings face to face.  He took the easy way out and told me over the phone.  His recommendations were to undergo more surgery, where my entire large intestine is to be removed.  Let me back up.....it was not a recommendation, it was more of a "you need more surgery", and no other options given.  Does that sound like informed consent for a major surgical procedure?  No.  Does that even sound kosher that he did this over the PHONE?  Hell NO!!

As I struggled through the tears of an unanticipated open exploratory laparotomy (with a big ass incision from just under my breast bone, down to my pelvis), the pain of said surgery, and then the devastating news that I need to have my entire large intestine removed, I cried.  I cried tears of sadness (Loss of bodily integrity, How was I going to eat???  What could I eat?  What about malnutrition, which I already have post gastric bypass surgery??).  I cried tears of loss....a major portion of my GI tract is going to be removed, and I will never get it back again!  I cried tears then of anger --- how could he give this info on the phone?  Why not face to face?  Major abdominal surgery?!  I don't want to undergo that again!

I channeled my anger, after hashing it out with a very empathetic RN who was caring for me in the hospital.  She reminded me of my rights as a patient.  A right to self determination, a right to bodily integrity, a right for a second opinion!!!!  The lack of control was now turned back into self empowerment.  Thanks very much to a wonderful and caring nurse!  (PS - she received a huge, hand written thank you card from me.  She deserves so much more than just a thank you card!)

So a second opinion was obtained while I was post op in the hospital.  The GI doctor was such a pleasant, caring, sensitive provider.  He took the time and listened to me.  He asked more questions about not only my medical history, but also my family history.  He didn't brush off my concerns or suggestions.  Thank God I found (or perhaps it was fate?) a caring physician versus a cut-happy surgeon.  This physician agrees that we need to figure out why the surgical finding were what they were, and the etiology, as well as more conservative and bowel-sparing treatments.

I'm only one week post op, and we still don't have a medical etiology for what is going on, but at least we're moving in the right direction.

I lodged a letter of complaint with the hospital CEO (who I happen to also know from outside of the hospital), and voiced my dire concern about a surgeon who is cut-happy, and yet at the same time, doesn't have the guts to talk to his patient face to face to deliver bad news.  In fact, this surgeon didn't even visit me ONCE while I was post op at the hospital for 3 days.  Instead, one of his partners came on post op day 1, and wouldn't even talk to me about what was found and what the plan of care would be.  He deferred back to the surgeon who operated on me......who said he would round on me on day 2 post op, but sent yet another colleague instead. Who was a complete and utter jackass.

What has being a patient taught me?  Be sensitive to your patient's concerns.  Take the time to listen.  Answer questions as thoroughly as possible.  Talk about alternatives for treatment plans.  Encourage a second opinion if the patient doesn't like the options.  Refer patients to appropriate specialists.  Involve the patient in their care plan!  Be nice, always be considerate, and listen to the nurse's concerns regarding a patient's care.

Don't be a patient who is: powerless, defenseless, without an advocate on their side.