Docs, Docs, and More Docs

I know it has been a while. You will soon see how crazy things have been.

Since my last post back on the 20th of August, I have seen a general surgeon, my pulmonologist, and an endocrinologist that wanted me to see a nutritionist. Mixed with going back to the ENT for followup on my ear ulcer.

So the surgeon was VERY nice. He did say that he could do the feeding tube surgery, however, it would be very high risk because he would essentially cut me open to do it, and that would entail using general anesthesia with a paralytic agent. For those that don’t know, a paralytic would completely paralyze all of my organs and I would be completely dependant on a ventilator. This is not good for someone with a weakened immune system and poor lung function like myself. I brought up the RIG procedure that I read about in the article http://radiology.rsna.org/content/233/2/392.full. He was not aware of doing it this way. He told me that I needed to get clearance from my pulmonologist, Dr. S.

Needless to say, Dr. S freaked when he heard about the paralytic. He told me quite bluntly that he did NOT believe I would make it through the surgery and did not want it to be done. So here I go again.

He told me I need to try EVERYTHING else first… which I thought I had done. He said he wanted me to see an endocrinologist and said there are drugs that could maybe help me and that he wanted the opinion of an endocrinologist. He threw out drug names like Megace (appetite stimulant) and HGH (Human Growth Hormone AKA: Anabolic steroids) to maybe help me put some padding on me. Dr. S doesn’t think a feeding tube will work for me anyway because I get “full” so easily. Whatever… I don’t agree with that because I feel I would be able to do a slow drip for a while until I prep my stomach to hold more contents and calories. But what do I know right?

So the next week I go to the endocrinologist. What a waste of time! Her bedside manner was that of a rock first of all. The whole time she is asking me questions, she is looking at my mom! As if to see if my mom would give her some kind of “signal.”

Then she said, “Have you seen a psychiatrist?”

Me: “Um… no… why?”

Her: “Well just to make sure you WANT to gain weight.”

ARE YOU KIDDING ME?????????!!!!!!!!!!!!

I was so shocked that I really said nothing until I got out of the office. I brought up the drugs and she didn’t want to try anything on me because the side effects were so bad. On my own, and from some recommendations from friends in the medical field, I did my own research on Marinol which is a synthetic prescription pill of THC. THC is the active ingredient in Marijuana. She brushed me off on that also. Wanted me to do MORE blood work (I have been stuck already 12 times during all of this), and see a Nutritionist. Why??? So I can be told what I need to eat? So I can have a schedule made for me? So someone can count my calories? Duh?! I can do that on my own, and HAVE! I KNOW I need to eat more, but when I get “full” I can’t bring myself to eat any more.

When I left, mom and I looked at each other at the same exact time and I said to her, “I am SO DONE".

She was thinking the exact same thing.

So since Dr. S said he wanted me to try EVERYTHING… well guess what I did… ONLY as a test people! I smoked some Marijuana! Yep, I said it! I ate a full dinner to truly test it to see if it would still make me hungry after being “full”. About an hour and a half after smoking it, I ate a beef jerky, a whole package of individual size Pringles, and drank an Ensure! I didn’t FEEL hungry per se, but when I would see the snacks sitting around, they were so appealing that I wanted to eat them, and did.

So my theory is, this is based on my appetite for the most part. What I think feels “full” may not really be as much as I can eat, my appetite shuts off and the desire to each anything else is totally gone.

Now, I cannot pick up Marijuana as a solution because I was so high I couldn’t function well and I cannot do that with being in school and my future career as a medical transcriptionist. Not to mention, it is bad for my lungs and illegal.

So I called Dr. S assistant, Barbara. I sure as hell told her what I did. She said, “and it didn’t work because you were full.” I said, “WRONG! It DID work!” I told her I knew Dr. S would probably keel over when he heard what I did… I mean for crying out loud, he’s a lung doctor! LOL! But she said she understood and that it wasn’t like I was going to make it a habit. So she is going to talk to him about prescribing me Marinol. ANDDDDDD…..  I e-mailed her the article about the RIG procedure because that is done under LOCAL anesthesia, with an interventional radiologist, and was done with ALS patients with “high” stomachs (behind the rib cage). Specifically because they could not handle general anesthesia or paralytics. I had a friend of mine that is an OB/GYN surgeon at Brackenridge hospital look at the article and she said it would be minimally invasive and sounds like it would work for me. IF we can find an interventional radiologist that knows about it, and knows how to do it. She said she would ask around the hospital.

So now I am just waiting until Monday when Barbara sees Dr. S to let me know what he says about trying Marinol, and what he thinks about the article I sent.

So as of right now my options are this: Try Marinol if I can get a doc to prescribe it, and/or the only surgical option that may be possible is the RIG. Otherwise, I am just going to keep living life and not obsess any more about my weight. Life is good and I cannot worry myself to death over it. If I get sick at this weight, I will deal with that as needed. If it means I have to have a nose tube or something in the hospital, then oh well, guess that is how it has to be. The major surgery is totally ruled out… that is not a risk I am willing to take when really life is pretty good.

I am drinking an Ensure in the mornings, snacking in the afternoon, eating large dinners, then drinking another Ensure at night. I have gained 1 pound in a week. I am not expecting a whole lot more just because of my disease and I am not sure even THAT regimen is ENOUGH. But, at least I am trying like I always have been and not losing.

I am in my LAST semester in medical transcription school. We are doing the Practicum which is like an internship program. It is a crazy amount of work, but I am loving it like always. It is good that I don’t have to face a surgery in the middle of it like I thought I may have to. Everything happens for a reason!