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Getting my throat cut


Deb

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It's Friday here, too, now ... but if the doc wasn't going to get back into the office until yesterday afternoon, maybe it will take some time for her to catch up on calls? <drumming fingers and giving her a little slack, but not much>

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I spent yesterday drumming my nails on the desk waiting for her to call too. And she didn't. I just called and got the receptionist to text the dr with a red flag about calling me as soon as possible. Hopefully she will soon because I've gone from drumming my fingernails on the desk to banging my head on it.

Deb

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She called with official diagnosis from the pulmonary tests. I'm fat.

That's it. The technical term is "body habitus" but it translates to "you're so overweight that it's interfering with your breathing".

I'm pretty much in shock over this. They said that there's no obstruction alto one test did show "DLCO" which has something to do with the diffusion of air into the blood system, but they're saying that's only "possible" and that their official diagnosis is that I'm fat.

Yes, I'm overweight *but* this was happening before I gained weight. I gained weight because I take the maximum dosage of Lyrica and it's like a steroid. I wore a size 14 jeans when I started taking it and now I wear a 20. But I was having problems breathing and with my heart long before I gained weight.

The doctor was just going to leave it at that diagnosis. She told me to see my primary for help losing weight and she was getting ready to hang up! I pushed back about the size of my thyroid and the pain in my collarbone and we even argued because she said that she'd looked at my ultrasound reports and saw that there was no change in my thyroid over the past two years so she didn't think it would ever change again. Look again lady! There's a nodule on my isthmus that wasn't there two years ago. She went back and read the report again and said she might have overlooked that but the report was badly written. I also pointed out that I lose consciousness if I turn my head too far in either direction and if I look at my feet, I almost strangle myself. She agreed to send my case to the surgery department to see if they would take it. She thinks they might grant me an evaluation because the size alone justifies surgery. HUH??? If the size alone justifies surgery, why hasn't it been removed by now????

She was ready to hang up again when I stopped her and asked if she was going to refer me to someone in the pulmonary department. She was surprised and didn't understand why. <shaking head> Um, if the tests showed a marker that there is a possible air diffusion issue it makes sense that I'd follow up on that. In fact, I'm more worried about following up on that than the surgery. There are a lot of things that can cause restricted air flow and since my chest xray didn't show any signs of emphysema I think we need to dig deeper, especially since one of the things that could cause it is fibroids caused by rheumatoid arthritis. And since I've had that ongoing debate about one doctor saying I have RA and another saying I don't, I want some more tests done to make sure that's not it. In fact, I want more tests done to find out exactly what it is regardless of the RA.

I've been crying all day, mostly out of shame that I'm so overweight that they would immediately jump to a diagnosis that being fat is my worst problem. I'm also very angry about that discrimination. I'd like to see anyone on 450mg of lyrica not gain weight.........or someone who's oxygen saturation drops to 80% walking from the living room to the kitchen be able to exercise enough to lose weight...........or someone who's in this much pain be able to exercise at all. If I do three minutes on the treadmill and not be able to move for the next three days. They just don't understand that I gained weight *after* all this started. It's a symptom, not a cause.

I'm most upset that they would ignore the test marker about the air diffusion into my blood stream and are willing to completely disregard that in favor of a diagnosis that I'm just fat. Does that make me not worth the time to resolve a potentially serious medical problem?

If I'm quiet for awhile it's because this has really hit me hard. I'm a former anorexic and right now I feel like I've been hit by a tidal wave of emotions.

Deb

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I have tears in my eyes reading this and feel very angry too. Why don't they listen?? Sending many hugs your way Deb and just hope you don't give up pushing the doctors (though you really shouldn't have to) Sending lots of love

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Deb, I am totally blown away by this! I feel for you and am so sorry you have to deal with this. It seems like each doctor comes back with a lame excuse worse than the prior doctor. I told you how my endo toldme j need to push away from the table and that was why I gained weight. I haven't seen an endo since and everytime I hear this mess you are going through only makes me feel stronger that doctors just don't care anymore. It's only money to them. If the case is challeging they try to take the quickest way out they can find and it's usually at the patients exspense. You don't fit their categories so it must be your fault and you must be doing something wrong.

The good thing is only becausethey offer you their opinion, it does nit mean you have to take it and label yourself with their labels! You are a strong woman who has been through and endured lots of things. You will beat this and come out on top!! You know you have a lot of cheer leaders right here cheering you on!

Sending Hugs to you my friend.

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Also crying here, Deb ... I can hardly believe this latest development. I thought for sure this doctor would be *the* one to pull you out of this difficult situation. Keep pushing her - she will soon realise that you know more of what's going on with your body than any white-coated "professional". I'm so, so sorry - and I wish there was a magic solution to all this.

We understand if you're quiet here ... take all the time you need to lick the wound, absorb the shock ... and then come back out fighting. You have nothing at all - nothing! - to feel ashamed about. All those negligent, arrogant, inept doctors are the ones who should be ashamed. Don't give them that power over you.

{{{{{{{{{{BIG BEAR HUGS}}}}}}}}}}

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Debs

Wishing you strength, fortitude and a medic who takes his or her oaths seriously. I'm sorry that the response you have been given is so unsympathetic. I was in the same place once with my daughter and took her to the doctor so many times that he threatened to send us both for counselling as he said there was nothing wrong with her. He was so very wrong. Medical professionals do not know everything, you live in your body and know when something is wrong, please don't give up - make them listen.

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I'm so sorry, Deb - this makes me spitting mad and I'm only standing on the sidelines. I know it has to be worse since you got the feeling this doctor was listening and then ended up bowling you over like the rest. What a bunch of BS! Sending you positive thoughts and hope you can get someone to truly help you. Keep pushing...there has to be help available somewhere out there for you. Hugs....

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Good God Almighty! Is there not even ONE of these "oath-taking" buffoons left on the planet who care about the patient anymore??!! :pcwhack: This is just heartbreaking news Deb. :p

I will continue to keep you in my thoughts and prayers, and I pray for your strength to keep on fighting these incredibly insensitive and apparently incompetent b*stards...don't give up Deb!! The setbacks have been numerous for sure, but the fight is far from over. YOU are made of tough stuff...don't let them off the hook!

Sending you HUGE {{{hugs}}}

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I can't tell you all how much your encouragement means to me. Over the past few days when I've felt overwhelmed by this, I've come here to read your posts and it never fails to make me feel better. I'm gradually moving from a blue funk to being pissed off which is good. If I've got to fight some more then being mad will get me moving again. But I have to admit that this last blow was almost the one that knocked me out. It was a sucker punch that I didn't see coming and I've come very close to just giving up. I'm too stubborn to do that so I'm up again, bruised but only semi-bowed. <insert Rocky theme here>

Deb

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You go girl!! Keep thinking those thoughts the next time you visit the dr. You won't need Bruce's authority voice, you'll have your own.

Please don't be depressed, your clothing size doesn't determine who you are, it's what's inside that counts. You're an inspiration to a lot of the members, myself included. Don't let that doctor get the better of you either. Just remind her that the medication you're on is the cause of the problem, she may have forgotten when she looked at the test results. I'm not defending her, just stating that sometimes unless the information isn't in front of them in written form, they don't remember.

My own dr isn't any better and I've been with him since my pre-teen years. I had an infection and DH took me to the ER because all I was running a fever and all I wanted to do was sleep. When the dr. asked me if I was allergic to any medication, I told him and also informed him of the antibiotics that didn't work for me. He gave me a prescription and told me to visit his office the next week. I took the medication and did the follow up. There was no improvement. He admitted to me that he didn't believe what I had told him about the antibiotics. He had to give me a new prescription. Instead of being sick for one week, I had to endure it for 2 weeks because he wouldn't listen. I guess my point is: keep talking, they will eventually listen.

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WOW I feel like a terrible friend...as I read this I went through all these emotions only to find out your fat???

WTH???

oh kid! I think if I had been you I would have hit someone or something!

being over weight CAN create some of these issues but OMGAWD!!!

when I was over 500lbs I couldnt breathe while walking....or much else...but this all started at a size 14 GIVE ME A BREAK!

where do I sign up for the road trip??

but Im bringing the tie dye duct tape to tape some butt cheeks together untill they help you!

I tired for 5 yrs to have wls and it felt hopeless each trip to any dr.

dont give in to it!

We are here and we support you!!

you are always in my thoughts!!

nutti :D

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Sheesh and sweet mother of pearls, now these docs have no idea what they are doing to anyone as it seems, I cried, got goose bumps and then got mad so I'll sign up for a really fast and furious broom ride to come over and kick some butt.

Seriously, I am sending hugs and strenght your way and an evil spell some one else's way that is for sure! Never ever give up sis' get mad and even and we'll all back you up!!!

HUGSS

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  • 3 weeks later...

I thought I'd better update y'all on the latest. The endo at University "forgot" to call the surgeon so after three weeks I threw a fit and finally talked the recep into transferring me directly to the surgeon's office and got an appointment. That's on the 29th. I had an appointment with the pulmonologist on the 6th but they called and rescheduled it for the 27th. Oh well, what's another month.

The good news is that I saw my rheumatologist on Friday (I've been with her for two years and she's the one doctor who helps me) and when she saw I still had my thyroid, she flipped. She was aghast that the endo brushed off the cancer concerns and said, "Everyone knows those biopsies are notoriously inaccurate and they've only biopsied ONE nodule over and over. The danger of cancer is very, very real". After I told her about the discovery that my thyroid is under my collarbone she was pretty unhappy that they didn't do an MRI to find out how deep it goes and how big it really is. She also said that the location of it would be putting pressure on a fibro trigger point which would contribute to my fibro being in constant flare. She told me to make sure the thyroid surgeon calls her for a consult immediately after I see him.

What really upset her.........and actually made her mad enough to raise her voice was when I told her about the "You're just fat" diagnosis from the pulmonary tests. She said they might as well have slapped me in the face. I really appreciated that she took the time to talk to me about why I can't exercise and how this is out of my control right now. She reminded me of the long term goals she and I have set about adding exercise into my fibro treatment when my body can handle it. We even tried physical therapy and it only caused more damage so she said we both know that exercise isn't an option and won't be until they get the oxygen saturation issue resolved so my muscles aren't starved for oxygen. Not only does that prevent me from exercising, but she said that the lack of oxygen makes the neurotransmitters in the myofascia go into more of a "panic" mode which causes the myofascia to tighten up even worse which starts the cycle all over again. She was just furious that they would even consider using my weight as an excuse to deny further testing and treatment and she wants the pulmonologist to call and consult with her too. I get the feeling that she's going to give him an earful.

The most interesting part of our visit was about my back tho. Last November I had talked the quack internist's PA into doing an MRI on my lower back. When she got the results back she told me, "It's just mild degenerative disc disease. Everything else looks just fine. You just need to learn to live with it". Since that's all the xrays had ever shown I figured that it was right and just try to deal with the back pain. Anyway, I got copies of all my records when I fired the quack and it included the results of the MRI. I was surprised to see that they found a 3.4cm cyst on my right kidney since the PA sure never mentioned that but I have cysts everywhere and this one seems to be under the size limit for causing trouble. The rest of it was all greek to me and I just set a copy back to take to my rheumatologist on the next appointment simply so she'd have a copy of it. (I'd already told her the PA said there wasn't anything on it)

I handed it to her on Friday and she said, "Wow! There's a lot going on here!!" Huh??? Turns out that I have discs bulging all the way from L3 to S1 and moderate facet arthropathy on the right side in the same areas. That means that when I told them the pain in my back feels like bone-grinding-on-bone, I was right. That could explain why I can't stand or walk for more than three minutes at a time without excruciating pain that no pain killer will touch. I've been using a cane to get around for the past three months now so it's definitely been getting worse. Dr. H immediately said that she's going to get me into a spinal pain specialist and faxed my MRI results over to him before I left the office. His office called me first thing this morning and said that he'd reviewed my results and wants to see me ASAP so I have an appointment with him next week. He's the kind of doctor who does the spinal epidural shots (he used to be the back specialist for the Broncos and the Nuggets which I suppose means he's good at what he does) and hopefully he can help with my back.

My back is definitely a lesser priority than not being able to breathe and the threat of cancer, but at this point, I'm almost giddy at the thought of getting some pain relief. Any kind of pain relief!!! I'm trying not to think about the risks of the shots because I'm willing to take any risk to get some relief and there's no point in worrying about the needles. There's a good chance that the epidural steroid shots will work because cortisone works for my hands so we know my body will accept it. I'll keep y'all updated next week after the appointment. That one is just the initial evaluation so there shouldn't be any needles involved this time.

Anyway, that's where we're at now. Most of all, I'm comforted by all the things the rheumatologist said and did to help me. At the end of the appointment she said, "I know it's frustrating to get so much resistance and to have to keep searching for doctors that will help you, but don't give up hope. No matter what happens, you have to keep hoping and keep pushing forward." And then she hugged me. That helped more than anything any other doctor has done in a long time.

Deb

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