So much happening, and so little time/strength to write!

I don't even know where to begin anymore. I guess I can start back up sort of where I left off...
The ENT doc in the ER sent me to a specialist. (or rather, told me to go to one, so I found one, and I did) The specialist agreed that Sjogren's Syndrome was a possibility and that my endocrinologist should order tests.
She did. I do have a positive ANA (Anti-Nuclear Antibody), which had been shown before, but whatever. She says its a "low- positive" or something like that, but she talked to my kidney doc, and he told her to run the test for the Sjogren's antibody. After waiting anxiously for over a month, we found out that I do NOT have said antibody, which is great on one hand, but on the other hand, it kind of puts us back at square one.

The throat doc ordered a neck CT with contrast, and also a vocal therapy evaluation. My next appointment with him was right after my vocal therapy evaluation (at which the vocal therapist said that she would be recommending vocal therapy because I have scarring on my vocal chords) The throat doc said that they found that I have stones in my salivary gland. IN ALL OF MY SALIVARY GLANDS. I didn't even know this was a thing. He said to go see another particular doctor as soon as possible, and he said that only a few people in the world do this surgery, and she is one of them. That was a scary thought. I saw her, and she said that the stone on the left is HUGE and that it is in the duct, completely blocking up the gland. She said that the surgery would be hard, and that she couldn't book me then because despite having been on high dose liquid antibiotics for 10 days, it was massively infected, so she prescribed more.

I went back today, and she said that it is much less swollen, so that is good, but the closest surgery date available is in the middle of December,  so judging by how often this thing has been causing over the past however long its been, I am in for a very long couple of months. Ugh. I am scared out of my mind.

I can not even BEGIN to explain all of the GI stuff, eye stuff, and migraines that are going on at the same time as this. I can't try to tell you why I have gained 15 or so pounds in the past month despite the fact that I am eating relatively well, and exercising a LOT, but I have. I don't get it, and it scares the living daylights out if me. I have been swelling up again too. Nobody can tell me what the heck is going on.
I will try to update more later, but I am freezing, so I need to go try to warm up.

Oops?

It seems that the reason my blood sugars were so high (and therefore my A1C took a hike) is that I was given the wrong chart of how much Humalog to take, and therefore was taking an insufficient amount several times a day.
I am on a more accurate scale now, and the sugars are on their way to the right place now. Yay!

I have stayed under 230lbs for a couple of months now. I am happy with that, in that it isn't 265lbs, but very frustrated that I am not losing more, since I don't eat very much, and I exercise a LOT. There is still a lot more edema than there is fat. Like, I am so swollen that I can't put my arms all the way down- they just pop outward and it makes me VERY self-conscious.

I have been taking Turmeric supplements to see if that would help. I don't know yet if it is.

My sleep schedule is still basically non-existent. That bothers me. I basically don't use my CPAP machine because it really seems to make matters much, much worse.

I am at a loss. At the same time, I keep trying. I gave my endocrinologist a form to apply to a program in Maryland that deals with un-diagnosed diseases. It is a long-shot, but I figure it is worth a try. The worst they can do is not accept me, and I'd be no different than I am now. If t hey do accept me, MAYBE I can get some answers. Til then, I will keep searching.

I am supposed to see a Neurologist sometime soon. I should check on when that is...

Catching up a bit

I went to meet with a nutritionist on Thursday. He had me in for a pretty big test (full body bone density test) immediately, but then told me that it "never happened" because my insurance won't cover it. He said that he can tell my body fat percentage by my bone density, but it came back as 51%. Now, I don't know what the "normal" percentage is, but I am thinking that in my case, this test is not all that accurate. I am NOT saying that I am not fat, what I am saying is that this is not ALL fat. 100lbs in about 3 days, remember. 100lbs of fluid. Anyway, I don't really know what to think right now, but I am trying to keep an open mind becuase he seems like he wants to know what is going on and help me. He was not given any medical history on me, so I stopped him and filled him in a bit before anything else. I have an appointment with him in a month, and he asked "How much do you think you can lose in a month?" and I said "I really don't know, I could lose 20 in a week and gain 30 in an hour- there is no rhyme or reason to any of this." We shall see, I guess. (I think my weigh-in at that appointment was 244lbs.)


Later that day, I got a call DIRECTLY from my endocrinologist regarding some blood work that "should have been flagged a couple of weeks ago" and got some good advice for the follow-up with my PCP. What she said was that my white count is high. It has been consistently high for a while. She understands why some doctors would blow this off as being nothing to worry, but given the circumstances, she feels it needs to be investigated. She also said that I should not discuss my diabetes with my PCP at my appointment, because I need to focus on why I was hospitalized and such. She said to bring up the white count, and that we'd deal with moving forward with diabetes things the next time I see her (which is relatively soon).

Also later that day, I was at a rehearsal and I was overcome with extreme sharp pain again. I could not hold back the tears. It was brutal. I hadn't been taking my pain medicine (I tend to try to not take anything extra on top of the huge cocktail of stuff I am required to take..) and I didn't have any with me. Luckily, one of my friends gave me a ride home. I took pain medicine and slept for a short while before it was time to get going to see the PCP.

The PCP took blood for a potassium level check, since it had been low at the hospital. She also wants me to see a hematologist. I have to check with her and see if that will be set up through her office or if she has someone that she wants me to call.

Still moving along...

I always think that I should be updating this thing more often, but then I stop and think "Well, what is the point, its the same old story again" which os pretty much the case right now.

I continue to walk. Quite a bit, actually. In fact, just this weekend I walked around for an hour and a half, looking for a group of people I was supposed to meet up with for a random, unknown spontaneous event.

Once I finally found them, it turns out that there would be more "walking" involved- a la Society of Silly Walks. Basically, I was walking around in one way or another from 1pm- 6pm. Man, did my body ever hate me for that!! Still, it was fun.

I also walked about 2 miles on Friday, and have been pretty active all week thus far. Oh, did I mention that I may or may not have a break in my left ankle/heel? Yeah, so a lot of this was with an air cast on or just having taken it off.

As far as doctors are concerned, I see both the kidney specialist and the endocrinologist next week. I don't really know what to expect. I wish I could get moving toward the pump. I mean, I am definitely making progress, but I wonder when they will actually start me on it...

I don't really know what else to say that isn't totally stale. I am still sick to death of being swollen and in pain, but I am doing the very best I can to avoid being negative and live my life to the fullest.

It has been a long couple of weeks.

Retina appointment on 12/16.
Improved 3 lines on the right and 2 lines on the left.
This is an improvement back toward my ORIGINAL crappy vision, not toward 20/20 or anything, but hey, progress is progress, right?
The bad news is that I do need more surgery on the left eye. Soon. "Before it starts bleeding again" sort of thing.
Also, the loss of peripheral vision is sort of a trade-off to keeping/fixing my central vision. It will not come back. That saying about how "you don't know what you've got til its gone" is so very true. I had no idea how useful it actually was. I mean.. I know its useful, but like... I don't know how to word it, do you know what I mean??

The next day.. I had 3 appointments right in a row: Nutritionist, Endocrinologist, and Echo-cardiogram. Was a full day. Pretty positive in most regards. I mean, the issues are still there, but we are working toward trying to figure out what is going on, get my appointments co-ordinated and such, and maybe get me working toward an insulin pump.

There is a LOT more to write, regarding more tests and more trips to the hospital, but I am still fighting off this bug, so I am going to stop for now and try to get some sleep.

...

I was diagnosed with kidney disease on Thursday.

I had seen it mentioned in passing before, but this was to-my-face confirmation.

Lovely.

Don't really have any details yet. I am supposed to see the kidney doc ASAP, and go to endocrine dept every 2 weeks.

On Saturday, I was on my feet for a very long time and went from being hot inside to getting stuck in a snowstorm with not very winter-y clothing for a couple of hours. I swelled up about 5lbs that night.

I woke up VERY sick on Sunday and went to the ER. I couldn't speak much, both ears hurt, I threw up 3 times, yellow sputum with chunks of blood, neck, back, shoulder & head pain... the works. They did a chest x-ray and took some blood, gave me IV fluids, and sent me home with a prescription for Tamiflu & Tessalon Perles. The Tessalon Perles were not covered and cost nearly thirty dollars. (plus three for the Tamiflu)

They don't seem to be working.

I went back to the ER today. Well, I started at urgent care and they sent me to register and since I couldn't talk at ALL, I was taken by wheelchair "STAT" to the ER... where I waited for about an hour to be seen- and all they did was take my vitals, do a strep test, and tell me to "grin & bear it unless it gets worse" which is why I went in in the first place...

My breathing is so bad. I get winded drinking water. I know.. that sounds really weird. I don't even know another way to describe it.

Here we go again...

On Monday night, I wound up going to the ER.
I was out of Lasix and didn't know it, but I was swollen like crazy BEFORE it was time to take the medicine. I swelled up about 10lbs over night.
The skin on my feet, calves and whatnot up to my knees.
My thighs won't even go together properly, and I can FEEL the water with my hands.
It is so painful.
A small rash type thing developed in my right ear and on the back of my neck when the swelling happened.
I was put next to a doctor who was doing dictations and I had a panic attack/PTSD episode because he was dictating some very graphic abuse.
They gave me an Ativan and IV Lasix and pretty much kicked me out the door.
The discharge sheet says that I swelled up because of my missed dose, even though I told them MANY times that I was swollen BEFORE missing my dose.
I am STILL swollen, even though I have had my Lasix as I normally do now.

I have an appointment with a sleep neurologist tomorrow, to follow-up about the CPAP machine, and an appointment with the diabetes nurse on Friday.
I also have a fibro-study visit on Tuesday and an appointment with my PCP on Wednesday. Here's hoping that I get some relief!

I am so swollen. My knees won't bend very much and it hurts so much.
I need a diagnostician. Immediately. I need to know what is going on.

As best I can...

I am fairly blind right now, so I apologize for the many typos that wull likely appear here. I had the vitrectomy on the 8th of September and am still recovering. I can not see text very well, though i can see other thoings a biot more clearly than I could on day one.
When I went in for my 24 hour follow-up, the docs had to put anestetic on my eye just to be able to open it because it hurt so nad. I'm not going to lie, I screamed. It was dreadful.
Now, it is itchy and painful, but a little clearer, and I am keeping up with my drops and not taking percocet as frequently as I originally needed to.
I had an endovrine appt o the 10th and teh doc saod she wanted to up my thyroid med because she though I need that, and also that I probably have gastroparesis (?) and she prescribed a med for that.
We shall see, I guess....
Well, this is taking a lot out of me, so I can't really type any mmore right now.
Just wanted to update briefly.

Apparently you need to highlight this to read it, my apologies.

Below is a letter to my PCP from my kidney doctor, with names, locations and such removed.

Kidney disease. They kind of left that out... like, ever.

Also, I don't eat a lot of salt. I don't eat a lot, period. I am very active, as I am able.

The weight went from 165/170 to 250 in a matter of THREE DAYS, not the course of a year. It has been over a year that I have been fighting to find out WHY. This is all fluid.

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Dear Dr. Xxxx,



I had the pleasure of seeing your patient today for follow up of edema,
weight gain, and chronic kidney disease. As you know, I saw her a few weeks
ago. Since then, the following events have been notable:

5/19: upro/cr 316/439, na 131, cr 1.0, gluc 366

Received echo report from OSH - normal

6/10 saw endo, dc'd actos. Considering metformin. antigad ab's 4.6 (high),
a1c 10.9. vit D 6, using insulin pens and finding that easier

Saw pcp who rx'd vitamin D. LDL 163. rx'd gemfibrozil which she stopped.
Planning to refer to lipid clinic

Had ucx positive for klebsiella. Rx'd cipro.



Renal history and history of edema: patient reports acute onset edema and
SOB on the evening of 5/9/08. She went to the ER and was told it was all in
her head and shortly thereafter was discharged home. SOB improved, and
edema somewhat improved, but since then, she has experienced recurrent
episodes of acute onset edema, as well as steady massive weight gain (170lb
> 250 lb per her report). She has been tried on diuretics, but this led to
increase in bun and creatinine (cr 0.9>1.3) and did not significantly help
her symptoms so it was discontinued. Work up to date has been significant
for the following tests:

- creatinine 0.9 on 3/11/09

- bun low teens > low 20's over past year (20 on 3/11/09)

- urine protein: no microalbumin 7/30/07, 24 hour urine protein 254 on
incomplete collection 3/11/09

- BNP 20

- Tsh 2.7 on 3/6/09, 3.0 on 2/23/09

- Ana positive 1:320 11/5/08, 1: 160 on repeat, then 1:80, then negative.
Esr 47 then 27, c3 169, c4 37.

- Cxr normal 3/11/09

- Ch7 3/11/09: na 137, k 4.3, cl 97, bicarb 31, bun 20, cr 0.92, gluc 146,
ca 9.1, phos 4.5, lft's normal, wbc 11.3, hb 12.8, plt 314.

- Abd ultrasound: liver coarse echogenicity, 24x16x23 mm echogenic lesion,
spleen normal, MRI recommended.

- labs 4/28/09: tsh 1.86, ESR 27, 24 hour urine 129 mmol Na, 1695 mg pro,
pro/cr ratio 1165/845, vol 1455, free cortisol 19.7 (normal). cr 1.13, IFES
no abnormal bands, rf neg, rpr neg, ana pos 1:80, nucleolar pattern, anti
centromere neg, anti histone neg, lyme neg, aldo 1, renin 1.

- labs 5/09: bnp 21 (normal), ds DNA neg, anti scl neg, anti rnp neg,
sjogren's neg, ana neg, c3 and c4 not low



PMHx:

- DM1 onset 1987. on insulin from outset. Retinopathy post laser rx x 2 so
far. A1c's have been 12 for years, though recently 9.5 per her report.

- Asthma

- Fibromyalgia

- Hypothyroidism

- No history hypertension (on diovan for proteinuria/DM)

- 2 LEEP's. ingrown toenails, cyst R thigh removed 6/99. no pregnancies.

- Pyelo 2/98

- C-scope 1.5 years ago normal

- Gastric ulcers

- Emotional lability

- (hospital) records (hosp for F/desat, MRN xxxxxxx, 000-000-0000): 1/23/09
CT: Effusions, several areas of patchy consolidation. Bronchial PNA and
likely also flash pulmonary edema. Irregularly enhancing liver lesions rec
MRI, and fatty infiltrate. Irregular lovulation of R kidney, kidneys
otherwise normal appearing. CT abd noncontrast otherwise unremarkable.



SocHx: no tob, rare ETOH, no drugs. On disability. Schooling: some college.
Lives alone (wi 3 cats), steady boyfriend, supportive family nearby.



Fam Hx: mat GM died of kidney failure onset after heart surgery. Mat uncle
kidney stones. Otherwise no renal history. Father had DM and stiff-persons
syndrome



ROS: says ballooned up again June 9th to >260 lb, shiny skin. Went to (hospital). Rx'd lasix 40' for a few weeks and wt came down to 243 and has
hovered there since then. Now on lasix 80'. Cough improved. Walking and
swimming. Says PO intake less secondary to n/v/diarrhea. Believes she has
a low sodium diet. No dysuria. Had hemorrhage in R eye (retina appt
tomorrow). No nsaid use. Chronic DOE (few stairs, not at rest), Chronic
pain - different kinds, throbbing and shooting in bilateral extremities,
also LLQ abd pain. Constant L subchondral (lateral) pain, worse with
valsalva. Acne neck, back and chest past year or so. Intermittent
headaches. Neuropathy hands and feet. Snores a lot and fatigued during the
day. Menstruates regularly. No dysuria, hematuria, urgency. ROS otherwise
negative or noncontributory.



Meds: per logician, is taking diovan. ranitidine prn, albuterol prn, flonase
prn, rare Tylenol, rare advil (not in some time), No herbal or other OTC
meds. Allergies: actos ? contributed to edema. lisinopril > cough, sob and
wheezing, sulfa, cephalasporins, statins, acyclovir, codeine, bactrim.



PE: 104/70, HR 100. wt 243 (from 248 at last visit, 248 prior). Alert and
oriented young woman, obese, in NAD. JVD difficult to assess secondary to
habitus. Lungs CTA bilaterally. H RRR, no MRG apprec. A soft, nontender.
nonpitting edema bilateral LE's, with 1+ pitting bilaterally.



Urine: Sed accidentally omitted today. Prior visit was: WBC's, +bl, rare
dysmorphia, no casts.



Labs: cr 1.18, k 4.2, upro/cr 60/641, microalb 43, ua 2+gluc, no pro, no bl,
no wbc. Ucx negative. Renin 54, aldo 8, wbc 14.9, hb and plt normal. Pth
36, vit D 17.



A/P: 30F, history poorly controlled DM1 with retinopathy, treated
hypothyroidism, fibromyalgia and obesity, following for edema, wt gain from
170>250 lb over the past year, in the context of near-normal creatinine,
minimal proteinuria, and dips positive for blood with relatively benign
sediment.



GFR: cr slightly elevated today 1.2 from baseline of 0.9-1. likely
intravascularly volume depleted. Elevated bun/cr ratio supports this, as
does elevated renin (though these both could also be effect of diovan).
Follow, and if increases further would consider cutting back on diuretics.
Review sediment next visit. Can have dysmorphic hematuria just from
diabetic nephropathy, and as long as creatinine and proteinuria stable
would not necessarily investigate further, but will follow. (flagged endo
and asked to get a ch7 when she is in on sept 10th)



Re: the weight gain and edema, likely multifactorial, endocrine following
and working on diet and insulin dosing. CHF, hypercortisolism, myxedema,
and secondary lymphedema from CTD have all been ruled out. Increased
dietary sodium intake likely playing a role, supported by fact that she had
modestly elevated 24 hour urine sodium on check 4/28/09 and suppressed
renin and aldo then (has since come up on lasix). Has been counseled on low
salt diet/ hidden salt. Classic edema from actos may also have been
contributing. Timing was not suggestive of edema from diovan. Primary
lymphedema hasn't been ruled out yet, though relatively rare. Will defer
to PCP to work up further if they feel indicated.



Re proteinuria: IFES no abnormal bands. Likely from poorly controlled
diabetes for many years (has other sequelae as well - ie: neuropathy,
retinopathy). At goal on diovan. Continue diovan and continue to avoid
nsaids (has been counseled on this).



Re: polydipsia/polyuria, intermittent nature of symptoms consistent with
effect of hyperglycemia. Not an issue on recent urine collection.



Misc: referred for sleep study last visit -scheduled but hasn't happened
yet. Will defer to PCP for MRI to follow up liver lesions.



HCM: recommend pneumovax. Will also need flu vax and H1N1 vax this season
when available.



Thank you for giving me the opportunity to participate in the care of this
patient. I look forward to seeing her back in 6 months, or sooner should
any acute issues arise.



Sincerely,



Xxxxx Xxxxxxxx, M.D.
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I am fairly certain that I am allergic to the pneumonia vaccine. I seem to recall having a pretty bad reaction to it a few years ago.

Not quite sure how I feel about this H1N1 thing. Seems to be jumping the gun a little bit. We don't know much about what I have OR about H1N1...why combine two mystery illnesses?

As for the MRI, I had that repeated a few months ago. I will have to see about getting the report to the new PCP and the kidney doc and see what they think about comparing the two studies.

Brief update

I never heard back about the MRSA swab, so I can only assume that either it wasn't MRSA, or the blood that they swabbed did not have anything in it (they weren't able to get any of the pus type stuff out of the mess on my back/neck/shoulders).
I have finished the Clindamycin and some of the rash does seem to have gone away, so that is good.
I saw the endocrinologist and she seems very nice.
She lowered my dose of Lantus by 10 untits and put me on plain Humalog as opposed to the 75/25 mix, and I am now taking that a few times a day. (with meals)
I have lost between 7-10lbs on the Lasix so far, so here's hoping that it continues to work...
I did see my old new PCP on Monday, so that was good, despite there being a crazy crowd at the office. She said that the bloodwork the endo took showed that my vitamin D was low, so she prescribed vitamin D, and she re-tested the Potassium level because Lasix can make thise levels low and I'd only just begun when I saw the endo. We shall see.
I am still swollen, still in pain, but I am still plugging along hoping, and searching for answers.

Floating away... if only...

So I swelled up some more, and it got so brutally painful.
The skin problem spead and worsened and became unbearable and I could barely even sit in a normal chair, let alone get up and down like a "normal person".
We'd gone to a show earlier in the day, and as I sat down in the seat, my calves brushed against the front of the seat and folded over themselves, in a sense, and just... I don't even know how to describe it, but it hurt like hell and for quite a long time.
I was much worse when we got back to my place and finally I gave in and said that I needed to go to the hospital.
They did seem to listen more than in the past, I will give them that. They also admitted that they could see and feel the fluid in me.
They took a urine sample and a chest x-ray. Taking blood was quite a fiasco. I was stuck 2 or 3 times in my left arm and they couldn't get anything. Same with the right. So they came back after my x-ray and went for the artery in my right wrist... fun, yes? Ugh. They tried a few times there and wriggled the thing about a bit while I was told to NOT MOVE WHATEVER YOU DO!!! and still nothing. Yes, I am that damn swollen. Then they tried the artery in the left wrist, and finally, after wriggling about and taking around 15 minutes or so for 3 vials of blood, they were done with it.
Nothing really came of it.
The doctor did try to swab the nastiness on my neck/back for MRSA. There was no pus or anything at this point, but he lanced one and is culturing the blood. That can take a couple of days, I am told.
I was given a prescription for Lasix (40mg) and Clindamicin (antibiotic) and sent home. What I don't understand is why they gave me only 15 days worth of Lasix and why they are using the same dosage which has proven useless in the past. Oh, and I also don't get why they didn't give me any while I was there... do they EXPECT me to live near a 24 hour phanrmacy?!

This morning, my old PCP called. (I had left her a voice mail last week after the new one screamed at me) I have an appointment with her on Monday morning, so here's hoping I can get there. (I left initially because I moved a fair distance from her office, but now that I can't walk the mile to my new, local, abusive PCP's office due to mobility deteriorating, I guess its kind of moot now, isn't it?) Here's hoping things get a bit more organized.

Tomorrow I see an endocrinologist for the first time in many, may years.
Thursday, more lasers.