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My new health problems grrrrrr

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Hi everyone,

Here is the latest in my health saga…..

Okay went and had surgery Wednesday, spent 5 ½ hours in

recovery due to my oxygen level – I was suppose to be admitted but they

felt I was good enough to go home (BOY where they wrong!)

So went home to mom’s house and tried to get some

sleep. I noticed my breathing wasn’t right but knew my mom had to go to

work Thursday morning and I knew she was exhausted so I didn’t want to

bother her – I let her sleep, and let her go to work Thursday, she also

had to go over to Strong Hospital for my aunt and get her all settled for a

nursing home and such since having the bypass surgery. So when mom had called

to check on me I mumbled I was ok. (Remember I was not allowed to be able to

speak for a minimum of 5 days)

Well Mom came home, made dinner for her and soup for me then

we went down to the family room to watch Big Brother. Well after BB she said I

just didn’t look right and did not like the way I was sounding with my

breathing. She went up and got her stethoscope (mom’s a nurse) listened

to me and said to me “How long have you been breathing like this?” “I

said well since yesterday but I didn’t want to bother you because I knew

you had to work and such and I knew how tired you were” She said “Oh

no I have got to get you to the hospital” So off we went. (and many of

you know how much I hate going but I knew there was no fighting mom on this

one)

We get to the hospital; my oxygen level at the time during

triage was 94 so they made me sit in the waiting room for two hours. (Got to

see my niece since it was her last night at general,

and also got to see Mike’s cousin Barbara and we chatted for a bit) They

finally called me back and placed me in the ortho section of the ER – my mom

walked up to the nurse and said – “my daughter is having a real

hard time breathing over there – look at her” she glanced over at

me and next thing I know here comes the nurse with the oxygen meter thing

placed it on my finger and my o2 stats were 78-80 somewhere around there –

BOY things went flying fast after that – They paged respiratory STAT,

moved me over to ACUTE and then all the doctors where flying in to check on me

and saying why did she sit in the waiting room, why wasn’t she brought

back immediately – MOM and I looked at each other and said “DUH”

they put me on the lovely heart monitor – buzzers going off galore, put

me on oxygen, started me on respiratory drugs, ran me over to get chest x-rays

and throat x-rays and then one of the doctors came back and said – “we

have to admit you, but we can’t take you up until you are stable.”

Now it is like 3am and I told my mom to go home that there wasn’t

anything for her to do but sit around and I would feel better if she were at

home in bed – she didn’t want to leave me – I finally talked

her into leaving at 4:30am – They finally took me up to my room at 6am

Friday morning. (Now I have had no sleep Tues, Weds, Thurs. Still on the heart

machine, oxygen, etc.) I am exhausted yet I had 3 more doctors to see plus more

respiratory treatments to go thru – Finally around 12pm Friday I am

finally left alone – (remember I am not suppose to be speaking but none

of the doctors, nurses, etc. care about that so make me talk) my throat is

killing me but hey apparently my throat surgery didn’t matter to them. So

as the day goes by and doctors come and go one doctor tells me I need a pace

maker that my heart rate is registering at 38 – 40 which is NOT good. Of

course I can’t get off the oxygen, trust me I tried just to go to the

bathroom and of course bells rang whenever I took the oxygen off because of all

the darn machines I was hooked up to. (At least I could move around with the

heart monitor on) So Saturday I was talking to my primary care doctors partner

and he said Between my pcp and my rheumy and my heart dr they would all be

keeping a close eye on me and that he knows they all feel it would be too much

of a risk to try and put me thru another surgery especially on my heart right

now so I will be monitored closely – He does not feel it is the lupus but

he feels it is the sarcoidosis which is treated the same way as my lupus. He

said he knows me, he knows I hate being in the hospital and if I can make it

thru 24 hrs of not being on oxygen I could go home – So I was able to

finally get off the oxygen Saturday afternoon and made it thru the night

without it – So when he came in Sunday he asked how I felt and if I would

obey his wishes if he were to let me go home J

He says my heart rate is fine while I am asleep it is when I

am awake that is goes wacky J He said but

you also don’t sleep too much – I was like – not like I don’t

try. But he says he wants me to try to rest as much as possible, when I get

lightheaded and dizzy I need to lay down bla bla bla I also need to talk with

my medical team about getting an oxygen thing here at home plus one of those O2

meters that will tell me what my stats are here at home to have as an

emergency. Of course I have a whole new regimen of meds I have to go on –

oh joy more freaking meds…..

So I was finally released and will be on the phone tomorrow

with the heart dr, lupus dr, and pcp to get things all set up. But looks like

my heart doesn’t want to co-operate. I guess I just don’t get to

have a break in this medical saga I call life. I can deal with what I have to

deal with – it is my family that I worry about – all my health

issues puts all of them in such a stressful state that I hate seeing them like

that – I mean I just wish no one had to see me go thru this – life

sucks! That is my new slogan J

So that’s my latest medical saga – sorry to have

bored you all and worried those that where worried – To my lupies group –

thank you all for being so concerned, filled me in

and thank you for all the well wishes – had I been able to have my cell

phone up on the floor I was on I would have gotten my numbers out to call but mom didn’t

pack the cell phone because almost everyone on my floor were all on heart

machines and well you know can’t have cells on with them.

Hugs to all and keep in touch.

Hugs,

Deanna

LUPUS Serenity

Prayer...

Lord, grant me the serenity to accept the things I cannot

change, the courage to change the things I can, and the wisdom to hide the

bodies of doctors I shot when they said, You're perfectly healthy, it's all in

your head "

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