Sunday, March 29, 2009

Yo-yo-ing again.

It seems to be the favourite game of the medical profession.
To use me as a yo yo and not give me any answers at all.

I had laser eye surgery on my left eye on Wednesday. They gave me percocet before the procedure this time to lessen the pain during the procedure, and the doctor did not wipe out the gel from my eye afterward to avoid me getting another corneal abrasion. I was also given a prescription for Acular just as a precautionary measure. I should be getting a phone call from the office about setting up one more surgery for the right eye, and then I will have to have an office visit because he is not sure if they will be able to treat 100% of the vessels due to the fact that I have cataratcs. I've had cataracts for over 10 years, mind you, and they do not affect my vision, according to the doctor, but it affects the laser's ability to get to the blood vessels, I guess, and I am assuming that is what has to be disgussed.

On Thursday, I had a regular gyn appointment and my doctor was shocked at my weight gain and inability to move and at the brief synopsis of what I have been through. He said when I was there 3 times ago, I was 170lbs, when I was there in October, I was 212 (this was when this was all starting to get really, really bad- it started on May 9th, 2008 to be precise) and he had me logged as 245lbs for that day, but that was being generous. I am more like 250lbs and it is scary as all get out. He did his exam and then told me that I should go to the urgent care walk-in because they would be able to send me to someone who could help, or at least point me in the right direction. Sadly, after waiting through registration, and then waiting again to be traiged and such, I was told to "go to the ER" even though I explained that I have in fact BEEn to the ER many times and I am always told that I need to leave because I "won't die today". Well excuse me if I'd like to get this taken care of BEFORE I get to the point of being at the day where I AM there because I am about to die...

I went home. Nothing more I can do. I have a nephrology appointment with an "associate"of the "colleague" of the nephrologist I saw a couple of weeks ago who wanted me to get the "second opinion" tomorrow morning. I don't know what to expect, but I hope for the best.

I also have an appointment with my PCP on Tuesday. I don't expect much from that at all. Here's hoping though.

Tuesday, March 24, 2009

ER again.

I went to the ER again on Saturday night.
The swelling and pain got out of hand. I was up to over 250lbs and felt like my skin was about to pop off. I can't even explain to you how bad the pain was.
I was dropped off at 9pm, taken in back at around 10pm, and told them I had to go to the bathroom so could they please give me a johnny and a cup right away because I knew they would want to do a UA and I couldn't get to the bathroom without a 2nd johnny on. I also asked for a blanket because it was freezing and they didn't give me so much as a SHEET.
Come 11pm, I still had no sheet, no blanket, no johnny, no cup. I was also in a stretcher that was made for someone over 6 feet tall. It was very difficult to get on and off of even with the step stool (the one of which they gave me didn't have the handle bar thing).
I hobbled over to the curtain and said excuse me about 3-5 times and finally someone noticed me and I asked about the johnny, cup, and blankets again and said that it was urgent and that I'd been waiting over an hour already, two if you count the time in the first waiting room. A page was made.

At 11:30pm, I, after sitting on the backless, rolly chair since the initial request because of the height of the stretcher, hobbled over to the curtain again. I said "excuse me" 3 more times and then I said "Hey, excuse me" and then I yelled "HI!" and the girl who had been twiddling her thumbs 3 feet from me and heard everything I said from the first "excuse me" said "Yeah?" and so I said "Johnny. Cup. Now." and she said "Well!" and I said "I've been waiting a long time, ts not like I'm rushing you on the doctor thing, I'm just asking to pee and you've made me wait two hours!" and some other girl came in and asked what was wrong and I told her and she got me set up and I went and came back and asked for blankets again, and got one.

Then I had a student come in, probably around 1am, and talk to me, maybe 1:30, and the nurse started an IV line and got blood after sticking me 3 times. She stuck me a total of about 6 times throughout the night. It was not fun. I had an EKG and a chest x-ray, which I am told were normal. The student measured my ankles.

They left and pretty much left me there listening to the vomiting, screaming, possible-MRSA patient in the curtain next door. Said patient's son kept poking his head in and looking at me, which was creepy enough as it is... and then kepy backing up enough to bump me through the curtain. Talk about scary.

My boyfriend arrived at around 4:30am and the lady in the next curtain, who I'd been putting up with for a couple of hours already, started screaming more and saying that she was going to scream more and more and "I don't care" and at that point, I said "I do" and her son SCREAMED "Shut the fuck up!" so I yelled back "Excuse me but I didn't do anything to you, that was fucking unnecessary!" and of course THEN I get some attention. They came in and said "We've got a very sick woman over here" and I said "I understand that and that's why I have been so patient with her noise and dramatics, but that was unnecessary. I didn't do anything to them." and they moved me to another, single room, with a TV.

So then I had my boyfriend go and remind them that I am a diabetic and hadn't had ANYTHING to eat or drink at ALL for over 13 hours and could they please fix that. They got me a box lunch and then the nurse came in and started putting something into my up-until-now empty IV line. I asked what it was and she said "pain medicine" and started asking me about allergies. (Mind you, she'd already started administering the drug) I told her and asked again "What IS that?" and she said "Pain medicine. I just told you, did you forget already?" and I said "No, I mean what is it called?" and she said "Oh. Dilaudid." and THEN she checked to make sure I wasn't driving... and then a few seconds later I felt really hot and dizzy and my heart felt like it was goinbg to pop out and I said "Oh my god oh my god what the heck?"and then I needed to lay down more than I was, and then I pretty much was knocked out, and less than 15 minutes later, I was told that even though they admit that I was even MORE swollen than when I came in, that since I wasn't going to die right then and there, I had to leave right then and there.

They told me to follow-up with my PCP, and I called him and I have an appointment for noon on Tuesday. Great. A whole week. More than a week after the ER visit. WHat the hell am I supposed to do? I have a gyn appointment on Thursday. I swear if he thinks I should be admitted, I'm just going to have him do it.

The ER refused to give me copies of my test results. I did officially request them, but they said I have to go through the records department. I know that is a load of crap because I have gotten the results before. They just gave me a bunch of letters and numbers in paragraph form which I am about to try to decipher.

Friday, March 20, 2009

I am so confused.

As previously noted, the allergist had his secretary call to cancel my appointment for today, even though I bent over backwards to make sure he had everything he "needs" after he threw me out without running the tests LAST WEEK when he was supposed to do them.

I showed up today and simply greeted the secretary politely and quietly and said that I wanted all of the records that I had brought in returned to me right then and there, and also the records of the tests he had done, since he had outright refused to tell me the results when they came in while I was in the office a week ago. (He actually claimed that they were not there, but I know that they were because my PCP said they were and teh secretary told me that those were what she brought in while I was in there.)

She said that she was told that all of the results were "normal" (mind you, I had to wait for these records to be faxed over because supposedly when they arrive (even though I had requested them the week before- copies for myself, that is) the doctor scans them into a computer and shreds the paper. Okay, except why didn't he just mail me the paper copy since I wanted them anyway?

Anyway, the results show a few flags for abnormality:
White Blood Count 11.1 Normal is 4.0-11.0 so that is not TOO bad and is certainly lower than I have been... but it is still flagged.
MPV is flagged because it is 12.2 and normal is 9.6-12.0, Carbon Dioxide is 32, normal is 20-31.
Total Bilirubin is 0.2 and normal is 0.3-1.2

Three things that stand out as BIG TIME NOT NORMAL are:
1~ Complement 3, Serum- 169- normal is 79-152
2~ My sedimentation rate is 47, and normal is 0-20.
3~ Anti Nuclear Antibody test was POSITIVE.
These are all a pretty big deal, from what I gather, and not only was I not contacted with the information, I was outright lied to in being told it was not there AND I was refused treatment due to a lack of paperwork that had nothing to do with the tests that (still) need to be done.

Now, moving on to the kidney doctor, I went on March 11th for an appointment, and the doctor said to come off of the Bumex. She said (in front of my mother) that if I was on diuretics that I "would wind up on dialysis and die" so I need to stop immediately. I'd already taken the Bumex for the day, so I stopped the next day. She also said that she wants me to see a colleague of hers at a major hospital and that it is urgent that I do so, but that I need to get some testing done, so she took blood and urine tests and said to come back in a week.

My WBC was 11.3- normal according to this one is 10.3- either way, still high.
Osmolality urine listed at 362 with normal being 500-800.

Now, she didn't mention anything about this to me, she just handed me my results after a very brief appointment in which she poked my ankles a little (without taking off my shoes or socks) and noted that it put me in agony, she noted that I gained weight and swelling while off the diuretic and suggested I go back on one, to which my boyfriend replied "but won't she wind up on dialysis and die from that?" and she said "Well that is why I really don't want her on them.."
but she just said she did... but now she doesn't... but she does... but she won't give me a prescription, and so I remain on nothing.

She had her secretary give me the number for her colleague and I called to try to make an appointment and was told that I couldn't have an appointment til May. I explained that my doctor considered this urgent due to the extremity of the situation and I really couldn't wait that long and that I have records and such and was not even allowed to take the May appointment as a holding spot for just in case, I was told to have the records faxed. I called my nephrologists' office and told them what was going on, I was told that they would call over and get things straightened out and call me back, but of course, I did not get a call and now it is 9pm on a Friday and I will have to wait til Monday.

Tuesday, March 17, 2009

Wow....

So my phone rang at around 11:15 this morning.
It was the secretary from the allergist's office, calling to let me know that I can start taking the Zyrtec again (which I stopped again yesterday so that I could get the "scratch test" on Friday) because they don't have the records from my hospital stay in January (which was referred to as an "ER visit") which my boyfriend and I went to my PCP's office to pick up yesterday, as we were instructed on Friday after we got every single other record over from office-to-office when they should not have been needed any way....because they won't do the test without the record.
Now, when we went to pick up the records yesterday, we were told that they were not ready but were being faxed YESTERDAY, DEFINITELY because my PCP is apparently out of town for 10 days now.
Now they say that they can't do the test without the records from that "ER visit" (yet they are supposed to be testing me to see what, if anything, I am allergic to, so really they should be able to do that even if he was the first doc I'd ever been to...)

I immediately called my PCP's office, since the allergist's secretary did tell me that the allergist and my PCP had JUST spoken to one another and I was told he was out...so I asked if he was on call, and he was, but they refused to take a message, so I will call and try to get him paged for an "emergency" tomorrow when they have forgotten my voice. I need to find out what is wrong.

I will still show up for my now-canceled appointment though. I will show up and I will demand my records, because that bitch allergist still hasn't told me my results and I have a right to them and I will take them somewhere else to have them deciphered.

I am weighing in at nearly 250lbs now and I can barely move. Getting around is getting harder and harder by the day, so I really need to stop being jerked around and find some answers.

It really shouldn't be my job to be doing all of this work.

Friday, March 13, 2009

I am dumbfounded right now.

I believe I have kept my language fairly clean in this so far, but I am absolutely livid right now, so that is out the window. Please pardon my expletives, thank you.
I was supposed to have the "scratch tests" done today at the allergists' office.
My boyfriend and I got there at 8:45am for my 9am appointment. Got called in around 9:33am.

The arrogant, condescending prick didn't do any testing because I didn't have any records with me. (He didn't tell me he needed records to do testing)
I asked what the results of the blood work (taken a week ago) and he said it wasn't ready and I said it was taken a week ago what were the results please and the secretary came in and handed him something and he said it takes 2 weeks for blood to come back and I know what they took and aside from one test I've never had (venom test of some sort) everything else was the same shit they always run so it'd be back in 48 hours or so.... oh yeah and PCP had it yesterday, so I that's another way I know he was lying out of his ass.

We kept saying he can do the test and I could bring the records next week, I hadn't been able to do anything because I'd had so much going on and he hadn't told me he needed them for the test and just do the test please because you made me stop taking my allergy meds a week ago and I'm itchy all over and suffering a lot.
He treated me like complete shit and told me to reschedule after I brought my records in.

So we left, we were out the door at 9:40am and I was spouting some cusswords on my way out of the waiting room, (I believe my exact words were "stupid cocksucking motherfucking piece of shit motherfucker" I was very angry and in pain, itchy and scared) legs shaking, barely able to walk and I said to my boyfriend "sorry honey, but we're going to PCP's office RIGHT THE FUCK NOW okay?" and he said "Okay" and when we got there the secretary/nurse knew something was wrong because I was panicked, crying and shaking and she got the story and she made copies of everything from May through yesterday except the inpatient records from January which she said I could pick up on Monday.

Now, we walked back into the allergist's office at 10:18am with those records, but he was somehow on a conference call and leaving for DC in 10 minutes so I have to go back NEXT Friday at 8:30am for the testing, without being on Zyrtec, which I just took because the secretary said I could take it for the weekend and then stop again and that after that if it got really bad I could take regular Sudafed but not allergy Sudafed. Oh, and also that thing she had handed the doctor- it was my complete blood results.

Happy Friday the 13th, huh? I hope this Zyrtec works soon. I need to lay down.

Thursday, March 12, 2009

Hmmm...

Okay, so I guess I should do a medicine update since it has changed a bit.

I went off the Maxzide and was put back on Lasix then I was taken off of those and but on Bumex after I'd been given Lasix by IV several times a day while I was in the hospital, but not discharged with anything...

Now the kidney doctor does not want me on any diuretics because she says that she has seen too may patients start on them as young as me and wind up n dialysis and doe because of it, so she sent me for the aforementioned tests and x-rays and wants me to return next week and she wants me to go see one of her colleagues and a major hospital.

My PCP seems a little miffed because he thinks I will be upset with him when I swell up again and have no diuretic to counteract it- but they aren't DOING anything, so what it the point? I mean, I was on the Bumex a couple of weeks ago when I went to the ER after gaining 10 pounds in 2 hours, so really... I'm mad that I am swollen, and scared... but I swelled up on May 9th, 2008, out of the blue before I ever met this doctor.
The PCP did say that I had a positive ANA a few times so that I might have lupus, but I have no idea.. I have heard that before. I don't know what to think. I need to ask around and find out what I need to do to get an answer on that one.

Tomorrow, I am having the scratch tests at the allergist office, and hopefully after that, I will be able to take my Zyrtec, because the last time I took it was last Friday morning and I am itchy as anything night now!!!

Anyway, the current meds:

Lantus
Humalog 75/25 (though I have lowered the dosage)
Topamax
Levoxyl
Diovan
Zyrtec (except for this week because of the allergy test)
Albuterol (as needed)
Ranitadine (as needed)

I think that is everything.

Getting difficult to keep up

It is very difficult to type. I do the best I can, but so much happens every day, that I just don't have the time or the energy to keep up with everything.
A couple of weeks ago, when I swelled up to 244lbs, they told me in the ER that I should be weighing myself daily on a digital scale.
Someone sent me a digital scale and I have been doing just that, and it is very depressing.
I need some diabetic socks because everything else squeezes the life out of me. My skin feels like it is going to explode off of my skin.
I need help putting my socks on and off and they HURT. That's just scratching the surface, too.
I saw an allergist last Friday and he told me to stop taking my Zyrtec for a week and come back this Friday (tomorrow) for allergy testing which will take a couple of ours.
I saw the kidney specialist yesterday and she took blood and urine and told me to come of the diuretic (which was just switched to Bumex less than a month ago) because she doesn't want me to wind up on dialysis... she sent me for a chest x-ray and wants me to come in again next week to follow-up.
I have stopped taking my HUmalog in the morning because I have had some very bad low evening bloodsugars, so I am just taking the Lantus and Actos for diabetes-stuffs and then I do the Humalog in the evening. Seems to be working much better.
Other than that, I have no idea.
I will update again when I am able.

Wednesday, March 4, 2009

Snippets

As previously mentioned, I had eye surgery on New Year's Eve.
I had a black spot in the middle of my left eye and it turned out it was from an anurysm that burst.
I wound up having laser surgery on my right eye and an invasive surgery on my left eye... ouch.... needles.... 3 of them... in my left eye. NOT FUN.
I had more laser done to the left shortly thereafter, and then the right was postponed due to the hospitalization in January. I had the right done this past Thursday and there was a minor complication (which did not seem so minor at the time) an abrasion from the lens which caused a lot of pain and leaking.... EW.
Drops (acular) took care of that, thankfully.
I swelled up during dinner on Monday night (went from 235lbs, which was already an increase- to 244lbs, in 2 hours) so I went to the ER and they told me that I was fine so they sent me home.
I am at a loss.
I am scheduled to see an allergist on Friday, my PCP on Thursday, and have more laser on the left on the 25th. Not to mention that I have to go see a headshrinker in a week to prove that I have medical issues to the Social Security Administration since apparently no doctors have sent my records even though I spent hours signing release forms for about 20 different locations..