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.

Previous post

I have no idea why the previous entry is not showing up as a normal entry.
If you just click on it to highlight the text, you can read 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.

```````````````````````````````````````````````````````````````````````````

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.
``````````````````````````````

```````````````````````````````````````````````````````````````````````````````````

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.

Pre-op

My pre-op appointment was pretty traumatic.
The doctor didn't even check for allergies. What the hell is that?
He also didn't know what I was coming in for, and was really nasty when I did not know what exactly was being done and every little detail about it. (In my defense, I asked, and was told that I would be informed AT THE PRE-OP)
my eye is still very bloody and gross-looking. It feels all scratchy and I am very stressed out. The appointments on Thursday and Friday were both just very, very bad.
I will elaborate more later. I don't have the strength at the moment, and I have things to do.

Doctor My Eyes....

So, the Avastin injections were scary and painful.
My right eye bled and the blood is still visible. I am still in pain, but it is not too bad, just rather annoying. I have to put antibiotic drops in four times a day through tomorrow.

I was able to see the show on Wednesday, so that was nice. It was not perfect vision, but it was MUCH better than I was expecting. I will take it, gladly.

Yesterday, I met with a Sleep Disorder Fellow. She was nice, but her superior... not so much.
The fellow mentioned that when I was in for the sleep study (which I had to inform her I had already had) the report showed that (besides the apnea) I cried in my sleep. I had no idea. Nobody ever told me that. I told her I wondered if that MIGHT have been an isolated incident, via a PTSD trigger. I remember VERY clearly that night that just as I was finally falling asleep, there was a HUGE trigger factor on a news broadcast and I woke up with a jerk-type motion and then it took me a while to get back to sleep. Maybe when I finally did, that is when it happened? I have no actual idea, I am just speculating.
The superior came in and said that he does want to fit me for a CPAP, but he also pretty much said that he thinks I am crazy and should be calling psych too. He pretty much laughed in my face when I said I wanted to try to stay clear of any anti-depressants that had a COMMON side effect of edema because of this whole situation. So what... I shouldn't be looking out for myself? Whatever, dude. Nice of you to introduce yourself too...

Today, I have a pre-op physical. I am going to have to get there on my own. I am kind of nervous about it. I got to yesterday's appointment on my own just fine, but today's is in an area that is a bit tricky to get to with compromised vision/mobility. Hopefully the assisstance I THINK I have set up is a sure thing.

Yeah, definitely not good...

So I went to the retina doc on Wednesday and I will be going back this Wednesday and having injections in BOTH of my eyes. If I recall correctly, it is called Avastin and I am not looking forward to it. I was supposed to see a show that I have been looking forward to for 14 years on Wednesday evening... and now, I don't know.
Obviously, my eyes are more important, but this isn't something that is going to be a thing I can "just catch another time" so I don't know.... argh.
Anyway, so then I get to go back 2 days later for a pre-op appointment for my INVASIVE surgery which I will have the following week. (because 3 needles in each eye in one day is not nearly invasive enough...)

Then I get to have the aforementioned invasive surgery and I am scared out of my mind. I will have to go back the following day for a follow-up too. I can't quite wrap my mind around all of this just yet. I really can't.

Not good.

On Friday, I was on my way to meet a friend and go on a cruise in the evening. While on the bus on the way in town, I got a HUGE hemorrhage in my left eye and a small one on the right. I knew that ios what they were because it had happened so many times. The doctor wanted me to let him know if anything happened between my last appointment and my next one, which was scheduled for late next week, so I called. I spoke to the retina fellow on-call and was told I would be safe to go on the boat, but to move my appointment to this week. So I moved it to Wednesday.
My body had other plans.
I woke up yestdrday, half blind. I had to keep checking to see if my eyes were really ioen is the best way I can think of it. I called the retina doc's office and was told to go to the ER and have the retina fellow in-call paged. I did this, and was told that I have new hemorrhages in both eyes and that the right one (usually the good eye) was worse and has "streaking" biut this was not really explained to me.
I was told to keep my appointment for Wednesday with my retina doc and that I may have to have invasive surgery on one or both of my eyes. This will be determined tomorrow, I guess.

Today, I went to the kidney doctor and she took more blood. Other than that, it was just basic discussion and my weight has dropped slughtly since the last time I saw her (which was in May)

I have lost about 18lbs since my last trip to the ER (early June) but have been at a standstill for the most part for a couple of months. I am doing the best I can to exercise as much as I can, like I said, and eat a fairly healthy diet when I do eat.

I apologize for the many typos that i am sure are in this entry. My vision is serevely impaired and I do not know if it will get better. I am trying to hard to remain hopeful, but I just keep gettning knocked down. I don't know how long I can keep this up.