I saw the gastroenterologist on Monday. I don't really like her, she came off cold to me and at times it seemed like she was having a hard time following what I was saying and she would put words in my mouth and I would have to keep correcting her. I also don't know what it is about doctors not being able to read a small amount of text that you write for them. For example I wrote in reference to my lung function test. "I had a lung function test, 80-120 is considered normal with 80 being the lower end of normal. I was 72." She says to me as she is reading "OK, so you lung test was normal." to which I had to correct her. Symptoms are breezed over and my constipation issue in her mind became my "chronic diarrhea issue". Then my 30 lbs weight loss last year was asked "Was that because of all the diarrhea?" No, I told her because I couldn't keep food down nor hardly any liquid. Again that was listed on a short list of symptoms. My burning throat became "So, you feel like something is stuck in your throat, like a lump?" No it burns. I was prescribed Prevacid because of "severe nausea" which I do not have and "so I can eat" which I already can. This of course was explained to her already, but people can't seem to follow. I think people hear what they want to hear. Sometimes I want to just says "Hey! WTF snap out of it, sit down, shut up and listen! and for god sakes read shit!" People are always told on TV to bring a list for the doctor, so it is clear and so you do not forget yourself some details. What is the point? It is not like they actually read it.
Anyway, what I did like about her is she seems like a perfectionist. So, I guess if I was going to have a procedure done I would want it done by a perfectionist. I don't know. I just typed that and somehow I am just not feeling comfortable about it now. I was emailing this girl on facebook earlier about my appointment and how I was going to stick with her, but the more I replay the events of this visit, I am starting to wonder what the right choice is now. Well, I don't have to decide right this second anyway and the stuff she wants tested I agree with anyway. So I will continue telling you more..
She wants to do a colonscopy and endoscopy under general anesthesia. Usually these tests are done under sedation. I am unsure why, because she didn't make it clear as to why she wants to do general anesthesia. My guess is because of the problems I had caused by benzos or because she could be concerned about my breathing, which I believe during general anesthesia your breathing is monitored...or because she thinks I am bat shit crazy and just wants me completely knocked out.
I have read that many people have the colonscopy and endoscopy at the same time. She does not want to do it that way. She wants them each done on different days, which means I will be put under general anesthesia twice. General anesthesia carries more risk than sedation and I am not so sure I am comfortable doing it twice. When I asked her why she wanted to do it two different times she said "Because most people can't take the amount of air pumped in for both procedures."
Regardless she will not run either of these tests till I have a full work up with cardiology, including a stress test and a tilt table test (I told her I had the EKG, Echo and 24 hour monitor in April, but I think she wants that repeated). These I want done anyway, even if often I feel to weak to do a stress test and the tilt table scares me because you can faint during it, which of course I have a major phobia of. She also wants me to see a neurologist and endocrinologist. I am not completely sure why, except I know to have my hormones tested by the endocrinologist. After all this she wants me to come back in two months to see her. Only thing is when I checked out they said she had nothing open for four months, but would have her personal secretary call me to schedule my appointment to see if she could get me in within two months.
She also has ordered blood work, which is a nightmare for me, blood, needles, fainting. I have a lab tech come to the apartment to draw it. That will be Feb 5th in the morning if everything was faxed correctly. To make it worse I have to fast for it because she wants to check my fasting blood sugar. Both her and my primary care doctor are concerned that my blood sugar at St. Peters Hospital back in March 2009 was 136. However I have explained to both of them I drank orange juice within 15 minutes of them running that test. From everything I have read after eating or drinking juice 136 is not out of the ordinary, but whatever. She is also going to do a liver panel, which was normal in March 2009, normal in Dec 2007 and normal in Feb 2006, so why I am doing this again, esp. since the bowel color change was there in 2007 and 2009 is beyond me. Also she is running a celiac disease test..thank God finally. I have been asking for that test for years. Other blood tests will be needed that she can not order, so I assume my primary care doctor. I honestly do not know how I will get through all this or if I even can without actually cracking. Sometimes I think people who talk to me online think I am stronger than I actually am.
I was giving a bowel sample test which I will have to do in a few days and return to the Albany Medical Centers lab. That test is to see if I still have H. Pylori or if the Prevpac I took back in July 2009 actually killed it.
I discovered a lump on my back a few days ago which I pointed out to her and she could feel it and said it was a fat tumor or a swollen lymph gland. If it was a fat tumor it would keep growing and I would have to get that removed.....great.
Something that left a bad taste was when she asked my sexual preference (it wasn't random is was in context), which was fine, but then after I told her she asked if I have tested for HIV. I guess it only bothers me because it was a quick jump...gay...HIV. I don't know.
I had mentioned that I didn't want to take Prevacid for rest of my life and she said "Why not?" I said "because all medications long term effect the body in a negative way, there is no long term studies on these drugs and the FDA never approved them for long term use." She said "Well if you have acid reflux its the easiest thing to do and they may have side effects, but you will have to make a trade." Ok I don't want to make a trade and who ever said I wanted to take the easy route of swallowing pills for the rest of my life. For those of you who don't know Prevacid and drugs in its class are called PPI's and they are now slowly being linked to heart attack (link vioxx was) and it is strongly suspected that long term use leads to baldness. Not to mention when you stop your stomach acid you can not take in the nutrients of food correctly, which is why anemia is linked to these drugs as well.
I will talk more about her later I am sure. Topic change:
My mother was very dizzy the other morning and was taken to the ER. The doctors did a CAT scan and found nothing, said she was dizzy from low potassium, however it was no lower that it normally is. Thankfully they admitted her and the next day did an MRI and discovered that she had a few mini strokes. I gather all in the same location of the brain and they happened over the past few weeks, with the last I gather causing the dizzy spells. However this explains her agitated behavior recently. Now I understand why she was maybe being so mean to me on the phone and not being as nice as she use to be towards me. That was taking a toll on me and I had been crying over that, because being this sick and for the most part very alone in all this....well it just made it harder. Thankfully it did not effect her memory or speak, she also has no weakness.
Her Iron is also way to low. She has been taking Iron since before she started chemo (she stopped chemo in Sept 2009) and continues too take Iron. However, it is not helping and so she is going to be having a blood transfusion to get Iron back in her system. This is a concern because getting blood in a weakened state like my mother is in is not easy on the body. They have to give benadryl with it and keep checking her for a fever.
Also they did an ultrasound of the arteries in her neck, which she will get the results to tomorrow. If they are clogged they will have to open them and clean them out. That of course has a risk of death and major stroke.
I was talking to her on the phone tonight and she seems ok over all. I think she is tired of everything, as I know by now I would be too. To be honest I don't think I could do that as gracefully as she has. I mean it must be very demeaning for her. She has been in diapers since July. She just had another colonscopy (same gastro doc I am now seeing is her doctor as well) they took biopsies, but I don't think the results from that are back yet. They removed the second polyp that they were not able to remove when they found the cancer the first time.
One last thing about the gastro doc I saw today. She thought POTs was tuberculosis of the bones. So anyone who reads my blog often by now knows what POTs is and that actually makes you know more than most doctors know about it.