I am really irritated with my pulmonologist. I have always loved him, but have now learned that it is best to not have him involved in anything other than my lungs.
Let me backtrack just for a second…
When I saw him last, when he sent me to the endocrinologist, I was discussing my concerns with my weight. One of the things I brought up was pressure sores because I am so thin. I have two. BUT… they do not have broken skin, never have (until recently—will explain in a minute), and I am VERY proactive and am having nurses from home health come in a dress them in DuoDerm dressings to keep them from getting worse and promote healing.
After seeing the endocrinologist and me calling Barbara, my doctor’s PA to vent about the experience. She tells me Dr. S (we will call him) wanted me to ALSO see another doctor regarding my pressure sores. I told her no, that they are being well taken care of by nurses and there is no need for that at this moment.
Let me explain the skin breakdown… I do have skin breakdown on ONE now because they sent in a new person that put the wrong covering on it and when I took a shower it got wet inside and caused breakdown. But it is well on its way to healing now and they are checking it every 3 days. <end of that>
So… his PA calls me today and said she had good news. That Dr. S was all for me trying Marinol. GREAT!! But…
He won’t write the script for it!
They want me to see the doctor they recommended for the pressure sores to write the script for Marinol! This doctor is a pain management and rehab doc and his office is in downtown Austin which is a NIGHTMARE to drive to. She said, “Dr. S wanted you to see this doctor anyway for your pressure sores.”
Ok, now I feel like they are trying to trick me into things. I am NOT STUPID… I know my body better than anyone and tend to be SLIGHTLY hypochondriac in nature. If I was worried about something, I do something about it!
So I put a call in to my Internal Medicine doc, my primary, and got an appointment for followup on the 7th of October. I am going to tell him my journey from when I first saw him about the feeding tube and where I have gone (EVERYWHERE YET NOWHERE) since then. I can bet you money he will prescribe me the Marinol. I shouldn’t have to go to a completely new doc, a pain management doc (which I will probably never see again—especially because I have my own already) just to get a damn script for Marinol! They are acting like I am asking for Heroin or something! They are all for it, yet won’t write it?? WTF? I know Dr. S is a pulmonologist, but he should be able to at least consult with another doc if needed and write the damn script!
Sorry, I am mad.
I also asked her if she read the article I sent about the RIG procedure. She claimed she did and discussed it with Dr. S also. My ass! She was saying that Dr. S said it would be no less risky that what the general surgeon was going to do. Ummm… (I say) “But it is done under local”
Barbara: “But it can’t be done because of your anatomy placement.”
Me: “But it was done in ALS patients with their stomachs behind their ribs like mine.”
Barbara: “But you still have to be cut open.”
Me: “But the incision is very very tiny just to get hemostats up there to grab the stomach and it is all visualized with radiography”
Barbara: “Oh well, but remember, Dr. S says a feeding tube won’t help you because of your sensation of feeling full”
Me: Sigh… “alright”
Barbara: “If you are dead set on getting a feeding tube…”
Me: “Wait a minute… I do not WANT a feeding tube! But if this medicine doesn’t work for me, I need a safer alternative because there is no denying I need to gain weight by some means.
Barbara: “Well then if it comes to that you will have to see if you can find an interventional radiologist and start all over.”
Duh?! Obviously they are not going to help me find one or help me in any way to find an alternative method (back up plan) if needed. There is NO back up plan other than this and it looks like I will have to do it all on my own. Thanks docs! I have already done most of my own leg work trying to find a solution for myself anyway, like trying Marinol. So whatever, I will be my own advocate as always. I am so disappointed in Dr. S.
Good grief. What is up with these docs??? 'Ethel' and her son are having a miserable time with no sleep. Kevin's BiPAP needs adjusting or fixing or SOMEthing, and they have now been waiting a MONTH for a return call from the doctor. The nurse has been useless.
ReplyDeleteI wish there were some way to clone my brother; he's one of only a few doctors we've really trusted since our Jeffrey assignment. The ER doc who kept working with Randy when he had the lung clots (tho we didn't know it) was excellent, but he's just in the ER. Bummer.
Sending prayers that you can find a good doctor SOON!!!
Helen/'Lucy'
PS - I noticed on your side bar that the last post of ours was supposedly a month ago - it's been almost daily, including last night!!! I don't know what is going on with the feed, but we need to find out, as you're not the only one having problems. I wonder if you might need to drop us and add us again, since there have been some 'tech' tweaks with the WordPress change. I don't know....