Tuesday, January 26, 2010


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.


Marie said...

And this is where I start my trip to see you so I can bop you in the head. You will continue to see her. She is actually getting tests done for you. That is more than any other doc has done. So she may not be the nicest person but you do not always want nice. Shoot...House is a complete ass but good. (Yes I know he is fake but you know what I mean). You are stronger than you give yourself credit for. I would be scared if I had to do all of this too but it has to be done to find out what is wrong so they can fix it. And fix it may mean taking a pill forever. If you found out you had diabetes you would take insulin no questions asked right? And that is awesome she is going to have you see a neurologist and endo doc. They can rule some other things out. And you need to keep seeing her just for the fact that she is going to test for celiac disease. So if you stopped seeing her I would conclude that you do not want to get better and you just like feeling like shit all the time. Which we all know is not true. So stick with it and by summer you will all better and you go outside and play and have fun and go to the beach. :) Also, everytime I go to the gyno she asks if I want to take a HIV test. So I do not think she asked because you are gay. Oh and also, I have heartburn from time to time and the only thing i will take in Zantac (the store brand is what I get). And i love it. I would not take Prevacid since it is so much stronger and Zantac works wonders. :)

Brian Underwood said...

What I mean is I plan on sticking with her and getting all these tests done. What I am not comfortable with is two different procedures, on two different days and I would like to know why with general anesthesia, which makes it more risky. Not only is general anesthesia more risky than sedation, which is why I rather not go under twice (not to mention the stress of having to go back to do something again) is because when you are sedated you can talk and be directed. You just don't remember. It is more likely to have a colon perforation during general anesthesia because you are unable to communicate discomfort, so they keep going, when they would have backed off..this is why sedation is used almost always for both of these procedures. So the only thing I am not sure about is if I want her to be the one actually doing the scopes.

Taking a PPI drug and risking a heart attack and going bald to stop stomach acid is not the same as having diabetes. That diabetes question is a straw man argument. There is no comparing. With insulin you are replacing something that is lost. With acid reflux the issues are so different and not caused by too much stomach acid in most cases, though that is what is thrown at us as the reason. In many cases diet adjustments can correct many of the issues. The insulin argument is also used for antidepressants. "Well if you had diabetes you would...." However anti-depressants are not replacing what is lost. There is no test for a serotonin deficiency or a norepinephrine deficiency. It is all guess work based on theories that are slowly falling apart. So then it turns to "But if it makes you feel better why not take it?" Because I could drink beer and feel better...it doesn't make it ok and if I have learned one thing out of all of this is there is no free ride, you will always have to pay a price. So you can take a PPI drug and have your stomach feel good and then end up with a heart attack, neuropathy (which they also cause) or a list of other side effects, that you will be given more drugs to cover those side effect, which themselves will have more side effects. (The drug will never be pointed to as the problem as you slowly fall apart). You could say "I have been taking this drug for 10 years and I know it can cause neuropathy and now I have that in my feet and hands." and the doctor will say "Yea sometimes it can, but in your case it is not from that." I really hope everyone who reads this blog or thinks I am silly or paranoid never actually has a damaging, lasting reaction to a drug, because if you are smart enough to know the drug did it, no one else will believe you and you will just be labeled as neurotic, even if you can show them 1000s of people with the same damage. It is amazing how it is never the drug.

To answer the question I think you are posing, if it is discovered I have a heart condition (for example) that I will die from if I do not take a pill, then yes I would, because death out weighs side effects, it is an easy choice. If however it is for comfort and indeed "the easiest thing" when other options are available, then no I will not be swallowing a pill for life.

"So if you stopped seeing her I would conclude that you do not want to get better." I don't see how, if I get all these tests run and decide not to have her do the scopes in the way she wants, (because after all it is my life and my body, and me who could die on the table and not her), so I see another doctor and have him or her do the scopes that does not equal me wanting to stay sick. I never said I don't want the scopes. I question the way it will be done.

Anonymous said...

I've gotta say.. i'm with ya on the whole blood drawing thing. Needles are/were one of my bigger phobias. I just cringe at the sight of one.

This is something i had to deal with head-on during my week in the hospital. At one point i had 3 IV's sticking into my arms- 2 on the left and 1 on the right. They can only pump so many meds thru one at a time so that's how by the end of the week- i had three. Nightmare for me- but i just tried to not dwell on it. Which isnt easy- at worst times i felt crucified by the damned things LOL. Well- that's my over-active imaginations take on it anyway. To top that off- they drew blood from me every morning and every evening. Twice a day. Eeek! I felt like a pin cushion by the time i got home and not in the nice way.

When i have to get blood labs done- which i dread like hell, i always put it off til the last minute so the lab results will end up with my Docs before i see them. And then when i DO finally go to get it drawn.. i make them use what they call a "Baby Needle" or a "Butterfly Needle" and i make them take it from the back of my hands- which are somewhat veiny. You cant find a vein on my uppper arm so it's easier for all if they take it from my hand. The little tiny needle (call it what you may) cuts down on my anxiety factor a great deal. I'm not sayin' you won't feel it- but it's far less invasive feeling than taking blood from my upper arm. If you have not allready (and i figure you probably have) ask them to use the butterfly needle on you and ask them to take it from the back of your hand if you've got good veins there. I'm sure you've allready gone that route though. At first i was a bit sheepish about asking for that but they don't even bat an eye before they say "Sure! However you like it" so it's not a big whoop.

Cheers, Bri. Take care.

Brian Underwood said...

cool :) For me its not so much the needle as it is the gross factor. I have a major phobia of fainting and the word major does not even come close to how I feel about it. It started back in 1994 soon after a draw I fainted. My mind made a very strong connection between to too and now it goes into hyper drive when I have to have it done. The needle is more feared because that is the device which will be used to do it.

Oddly when I was recovering from lung surgery like you I had it taken every morning, 2 IVs and a chest tube. I was not bothered, but I was also heavily doped up on meds which could be the reason :)