Still In Limbo

Well, at the risk of making my entries all about me and my health, all the time, we still don't know where we are.  I am still on a pill month, still supposed to start Lupron on 11/10, and I am no closer to any answers than I was before.

I mentioned that I went to the well-respected university hospital internist, and he said that they just don't remove asymptomatic gallbladders, even if there is a planned pregnancy.  And, while I might be having a gallbladder problem, it really sounded like something else.  He guessed that it could be a possible hiatal hernia and asked that I have an upper G.I.  He also recommended that I talk with a general surgeon from the university.  The person that he recommended didn't have an opening until December(!), so we took another surgeon at the same center who had a more reasonable schedule, Dr. B.

I had the upper G.I. last Wednesday, and it really wasn't so bad.  I hated swallowing the Alka Seltzer type thing that they made me drink to put some air in my stomach more than I disliked the barium.  It wasn't a treat, but it wasn't bad.  The technician was really nice, as was the radiologist.  Really, really nice.

Yet, might I say how much I am beginning to hate all medical facilities and most of their personnel?  I had the upper G.I. at a (large) local, non-university hospital, and the check-in person didn't even bother to ask if I wanted the results to go to anyone else.  I wanted them to go to the prescribing physician, Dr. B, and to me.  My state has a law that requires that health care providers give you a copy of your medical record on written request.  Your state probably does too (and HIPAA also gives you that right).  Now, "give" is a bad word; they can charge for the record, and I do take exception to the charges, but at least it's a recognition that it's your f*cking record.

So, after the check-in person stood up to herd me back to the testing area (I wasn't even aware that she was finished with her intake), I told her that I needed the results to go elsewhere.  She didn't seem very cheerful about that, because that required that she get back into the computer and actually enter the information.  I gave her Dr. B's name and address, and I told her that I would like a copy sent to me as well under the blah blah blah Act.  Well, they just didn't do that.  If I wanted a copy, I could wait until the results were in (whenever that was) and make a special trip back to the hospital to get it from the medical records department.  What an ass she was. 

I complained to the receptionist in radiology, and I told her that I thought it was an odd way to respond to a request under the state law.  She said that customarily, patients do come back to get their records, but if I really wanted a copy, they could send one to me if I signed their form and let them copy my driver's license.  No charge.  Easy peasy.  Except that in the end, they didn't bother to send the record.  And, the reason that I asked for it is that my doctor won't call unless there's a problem, and if there isn't a problem, he will send you a copy of the report -- in two weeks.  Not acceptable.  After I called to complain that they'd ignored my request made under the blah blah blah Act, I was told that they would immediately send the results to me.  And they did.  And it was negative.

And that was the most positive experience that I've had so far.  Because Dr. B?  Well, she is a beyotch.  My husband doesn't think so, so perhaps I'm overreacting.  On the positive side, at least she will answer questions.  On the negative side, she is an authoritative, directive jackass.  How do you think a patient who believes that her body belongs to her, that nothing will happen without her wholehearted consent, and that every decision along the way will be explained to her reacts to such a person?  Not well, let me tell you.

We drove a long way to see her.  And I didn't even see her for the first hour, because I had to meet with her physician's assistant.  She was very thorough gathering background information and doing an exam.  Except I had to repeat a lot of the same information to the surgeon, who also did her own exam.  I'm sure my bill will be reflective of all of this double effort.  (I am really blessed to have health insurance.)

The bottom line?  She doesn't have a clue either.  But, like the other three doctors, none of whom could find any gallbladder symptoms, I think she thought it was an easy out to say that it was a possibility that the problems were caused by my gallbladder.  (Honestly, it seems like there is a whole lot of lazy thinking going on.)  But, if it's not my gallbladder, then she also wouldn't take it out, even knowing that I plan a pregnancy.

She did have some other thoughts.  She thought it could be a diaphragmatic or paraesophageal henia.  When I later used the words "hiatal hernia," she quickly, and I think snottily, corrected me and said that she had never said that.  I admitted that she hadn't; the internist had used that term.  (Except when I went home and did some research, I learned that there are two types of hiatal hernias -- diaphragmatic and paraesophageal.  So, even though I was inadvertently correct, apparently, she thought I would be impressed with big words.  Distancing -- keeping herself on a pedestal while trying to minimize me -- that was all that was about.)  And, of course, she would recommend surgery for that (surprise!) before getting pregnant.  Having researched this, I learned that if it is a paraesophageal hernia (and only 1% of the hiatal hernias are this type), then surgery is the recommended approach, even if the person is asymptomatic.  The risk is that the stomach might twist and require emergency surgery.  The mortality risk is 1% for surgery in the normal course; it is 15% if done on an emergency basis.  Diaphragmatic hernias (99% of the hiatal hernias) are usually just managed for symptoms unless the patient gets really uncomfortable.

She wanted a CT scan in addition to the upper G.I. I already had.  Here's the "best" part -- if it is a hiatal hernia, the tests might not show it -- and they would have to do exploratory surgery to figure it out.  She asked some questions that I couldn't answer, such as was there undigested food more than three hours after eating when I made myself sick to get rid of the stomach pain.  I just couldn't remember.  She said that she would like to be sure before she proceeded to take out my gallbladder, because she would feel so silly taking out an asymptomatic gallbladder.  I told her that she might feel "silly," but I would be pissed.

Or, she thought it could be a diaphragmatic tear.  She asked if I'd ever been in an auto accident before the symptoms started, and I had.  She asked what I was treated for, if anything, and I told her that I just had some back problems that resolved within a few months with some physical therapy.  (I researched this as well when I got home -- diaphragmatic tears occur 4-7% of the time in an auto accident, but it requires abdominal trauma.  I didn't have that -- but she didn't ask.  Nor did she ask me how long it was before the symptoms started.  In fact, it was four years.  Most of what I read suggested that the symptoms started at least within a year or so.)  And, of course, I should just go ahead and get this fixed too (surprise!).

I reminded her that the only reason that I was there was because we were trying to get pregnant, and I didn't want to have a medical condition that would be problematic.  As for the stomach problem, I'd lived with it for 20 years, and frankly, I was not interested in unnecessary surgery, thankyouverymuch.  And now, we get to the best part.  Read the following and imagine a loud, authoritative, somewhat sarcastic voice:

Well, if it's OK with YOU to risk developing problems with your gallbladder in the first trimester and subject your unborn child to the risks that could occur from anesthesia, then go ahead.

Or, if it's OK with YOU to develop problems with your gallbladder in the second trimester and expose yourself to the risk of preterm labor, then go ahead (but she added that the second trimester is the absolute safest time to have the surgery, they have good results, and preterm labor is a general risk for anyone).

Or, if it's OK with YOU to develop problems with your gallbladder in the third trimester and risk of injuring the child when we have to do the surgery, then go ahead.

I was really pissed.  And my feelings were hurt.  Here I was, going through all of this for the sole reason that I was worried about a pregnancy, and I get a snarky lecture suggesting that it might possibly be OK with me to deliberately risk hurting my unborn child.  Never mind that I walked through the gates of infertility hell almost ten years ago and I now fully appreciate the gift of life in a way that, quite frankly, I never did before.

I wanted to tell her to go straight to hell.  What I told her instead was I was confused.  How could she say, on the one hand, that if there were no symptoms, these potential problems were non-issues, yet on the other hand, suggest that I was taking a large risk when she wasn't sure that I even had a gallbladder problem?  She said that she thought it was a gallbladder problem, but while they were in there removing it (with the many attendant risks in doing that, which she explained), they could "take a look" and see if I have other problems with my stomach.  (Cha-ching!  Two potential surgeries.)  I asked her what she would do if she were me, and she said she would have the CT scan and then have her gallbladder removed (apparently it doesn't matter what the results are?).

So, I'm scheduled for a CT scan on Sunday (she insisted that I have it at the university hospital, for no better reason than it was more convenient for her -- I kid you not).  Another "no eating" test, but it's not that onerous.  I do hope that if I have a hiatal hernia (and I'm inclined to think I do), that it shows up.  I had another "incident" with my stomach last week, and I noticed that there was undigested food nine hours after my last meal (sorry if that's TMI).  My husband, who is usually pretty conservative and who has had the opportunity to sit and listen to me answer all of these questions and do his own research also doesn't think it's my gallbladder.  Obviously, neither one of us is a doctor.  But when you don't have even one typical symptom of an active gallbladder problem, it really does seem like a convenient excuse.  I would prefer to keep my gallbladder if I could, because some of the potential side effects from the surgery are not good.  Not to mention that one of the side effects is DEATH, and I have a little girl to think about.  Most importantly, I strongly suspect that having it removed would not resolve the stomach problem.  And, even if I decide on a surgery, unless I see an attitude change, Dr. B will not be laying a f*cking glove on me (and I will be sharing my delightful experience when I get the survey that they always send).

So, there we are.  I am supposed to see Dr. B(eyotch) again next Thursday, 11/6.  That gives me four days to think about what I want to do before I am supposed to start Lupron. 

Hope springs eternal about this cycle, I guess.  If I say that I'm depressed about all this, that would be an understatement.

Comments

[Lorraine]

What a frustrating position to be put in! I say, time for a second opinion...

I can't sleep very well now that I am on the dexamethasone, so I am always up at weird hours watching bad TV. I saw one show about a mysterious stomachy problem which ended up being a loose tiny sphincter that almost nobody even bothers thinking about. That poor woman had gallbladder surgery, an apendectomy and a colostomy. Yikes!

Hope this can be resolved SOON!

[Anjali]

Beyotch, indeed. Sorry you have to deal with her!

[Kami]

1) I want credit for reading the whole thing. I suspect people sometimes skim my long posts so I want to let you know I didn't skim.

2) That doctor would make me crazy too. ARRRRRRG

3) I hope the health issues all work out for the best soon.