Answers? You don't need no stinking answers!

That seems to be what everyone is telling me these days.
Since May 9, 2008 I have been dealing with this on a daily basis, and not one single answer.
Today, I saw the kidney doc, and got a whole bunch of nothing.
I mean, I was diagnosed with kidney disease, and now they can't even tell me what stage I am in? How screwy does that sound to anyone else, because it sounds really damn screwy to me.

Let's backtrack for a sec.
~On 5.9.08, I weighed 165lbs, possibly 170lbs, due to the broken toes on both feet.
~Later in the day on 5.9.08, I weighed 200lbs, was breathing funny, and had no ankles.
~Was told by the hospital it was in my head, given an Ativan and sent home.
~Went to 2nd hospital on 5.11.08 and was given oxygen and told that since I am "not dying right now, we can't help you" and sent home.
~Hospitalized on 1.20.09 with a hugh fever, vomiting, shaking, the works. Inpatient for a week, not allowed to eat or drink and losing all matter of fluids in all manner of ways, yet still swelled up 15 more lbs overnight and nobody cared.
~Echos have been normal
~Leg US have been normal
~Stress test was normal
~MRI revealed benign tumor on my liver, and was ordered off of birth control in 7/08.
~Random episodes of swelling do not seem to be in correlation with any specific event/food/drink and have gotten me to 263lbs max.
~Meds being switched constantly, including today.

Med list:
Lantus insulin
Humalog insulin
Metolazone 2.5mg
Bumex 2mg (starting tomorrow or whenever I can pick it up- this is replacing the 80mg/Lasix)
Levoxyl 100mcg
Diovan 80mg (my BP doesn't tend to be all that high, this is for kidney protection, but now they are talking about how I should be on a higher dose, but I STARTED on a higher does and almost fainted straight away)
Zyrtect 10mg
Vitamin D 800mg/daily & 50,000mg/weekly
Omega 3 Fish Oil which is for cholesterol, but it is not covered, so I don't know how long I will be able to take it if I can't afford it. I have been DEATHLY allergic to every "medicinal" cholesterol med I have tried, so the nurse wrote for this. Insurance will pay $300/month for something that will kill me, but they won't pay $10/month for something that could very well help me. Go figure.
As needed: Proventil, Ranitadine, Flonase
Unsure: Topamax- was on this for years, taken off of it for a medical study I was in. Am done with the study and unsure as to weather or not I should go back on it or not. Kidney doc refused to say, have left message with my PCP.

Recent test results (rec'd 1.8.10):
Chemistries
Na 139
K 4.9
Cl 101
co2 28.1
Ca 9.3
Mg 2.2
PO4 4.5

Kidney tests: "Your kidney function is stable. Creatinine has improved since last check."

Glucose: "Your blood sugar is stable."

Liver tests
Protein 6.7
Alb 3.9
AST 16
ALT 20
ALP 153
T Bili 0.2
D Bili 0.1

Cholesterol "Slightly better than last time, except triglycerides, but this is not a fasting and this affects the results."
Cholesterol total 245
Bad Cholesterol (LDL) 143
Good Cholesterol (HDL) 51
Triglycerides 256

Thyroid Tests: "Your thyroid tests are normal."
TSH 1.67

So yeah, that's about it. I don't know what all of the tests/results mean, but I don't get answers when I ask. I have been told by my kidney doc that she has no other ideas, no other tests, no suggestions of another sort of specialist to seek out answers from.

I asked about natural suggestions and was told only that they are dangerous. (Right, so like, I have low potassium and I eat a banana and it will kill me? Bananas are natural and contain potassium. Please explain to me how this will hurt me? All I wanted was maybe a list of food that might AIDE in the getting rid of fluids...)

I am so lost. Please make it stop. I am begging, if any random person who reads this happens to know someone, some way who can help, I would be eternally grateful.

...

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.

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.

Okay because my life needs more confusion...

I don't think I mentioned that on my most recent appointment wit my PCP (April 27th) my mother had to take me what with the being very swollen and the eye surgery 2 days prior and the still being in pain from the car accident where the airbags didn't deploy.... anyway, some other people also came along because they didn't really have a choice.
The nurse/secretary was NOT happy about this and was rude and nasty and allowed me in for my noon appointment at nearly 2pm (while keeping a 10 month old and a woman with MS waiting with me) The PCP supposedly swabbed me to check for MRSA, but I have not received any results, nor have I been able to get taken off hold to get any answers (this woman is the only person who handles anything, it seems)
So on the 12th of May, I got a piece of mail from a collection agency supposedly about a bill for $34 from the PCP. I had never gotten a bill, nor should I, because I am insured, and disabled. There was no "date of service" on the bill and the agency did not answer, and had a fake v oicemail. Ironically enough, the agency number and the PCP number are only one digit off...hrmmmm....
Anyway, on the 13th of May, I got a hand-addressed envelope from the Dr.;s office and inside was a bright orange paper that said it was a notice of small claims trial to be filed within 30 days if I didn't pay the $34. Let me tell you, I am NOT paying the money. I do not owe it, and I was never sent an actual BILL, so they can spend the well-more-than-34-dollars it will cost them to take my disabled ass to court so I can watch them lose.
I called and had the doctor paged and asked him what was going on, and he stated that he would find out and let me know what was going on tomorrow, which would be today, and given that it is 7:11pm now I am fairly certain he isn't going to do jack shit.
I am going to have to type up a letter and send it certified and get this matter addressed. The whole thing is just ridiculous.

On Tuesday (I think) I get to travel for like 5 hours on public transit to pee in a cup and come back home. Such a good use of my time...

I would really like to know what is going on with the tests that they took while I was at my appointment on the 5th of May. Nothing accute doesn't mean nothing to report. I need to know what is going on and it is my damn right to know what is going on.

I actually left a voicemail with Johns Hopkins Hospital at 12:48am last night/this morning because I am that damn desperate for answers. I left another one today. How would I get to Baltimore if they thought they could actually do something? I have no idea, but I will cross that bridge if and when I ever get to it.

I don't even know what to say.

I was diagnosed over the phone by some "renal fellow" with Lupus a couple of weeks ago (oh, and this was five minute before going on stage for a final dress rehearsal- nice huh?) After many back and forth phone calls, I spoke to my actual renal specialist who said that I do still have a positive ANA, but that it was not a Lupus diagnosis.
She'd tested for many things, and after having me off of the Actos and the Diovan for a month or so, there was protein and blood in the urine (24 hour) and it was still there when she tested it when I had an office visit on the 5th of May. I had more blood work done, including a repeat of the ANA and I have to go back next week for another urine test.
She did tell me to go back on the Diovan and Actos to see if that would remove the protein from the urine, as this is a sign of diabetic kidney failure, apparently. Great.
She wants me to see an Endocrinologist, and since being seen (in renal) on the 5th I have not heard from them or been able to get through to get an appointment.
I did try to get one schedule while I was there, as the doctor said that he secretaries were SUPPOSED to do that, but they are actually all very rude, nasty women and just said "they'll call you!" and shoved me out the door almost literally.
I have been very, very swollen and in a lot of pain.
I have maintained at about 248lbs for a while now, but that is still terrible and painful and the breathing has been not so great too.
I need a DIAGNOSIS, not treatment of symptoms. I have had little to no treatment anyway, but the treatment I have had has done nothing. I need real help, and I do not know where to turn.

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.