Hi everybody!

This is going to be rather short because I am reaaaaally tired and have a Nephrologist apointment that I have to leave my house for at like, 8-something tomorrow morning.  So I will DEFINATELY give a more detailed info listing when I get in tomorrow morning from the Doc's!

 

First and foremost- THANK YOU ALL SO MUCH for your prayers and kind words and funnys (yes you too, TexasJack -it's all ur fault!) - they are much appreciated and Lizzy did an excellent job at passing along everyone's messages to me!

 

They released me tonight (11/11/08) after telling me that they STILL don't know what's wrong with me.  And that my body isn't making red blood cells right now.  Go figure.  I also am now on oxygen at home.  They came around 11pm tonight and set up my home oxygen machine system thingy.  I have a 50 foot cord so I have it in the living room and am going to try to sleep in my room tonight but I don't know how that's going to work since I haven't laid flat in over a week!

I PROMISE to give a much more detailed "what's up" post tomorrow when I get back from seeing the Doc - right now I'm just really tired and exhausted, but I wanted to let everyone know I am home now and I wanted to thank everyone :-)

I'll write more when I get back...

 

Write as much or as little as you want to, but be assured that you and your family are in our thoughts and prayers whether or not you have the energy to post or reply to our posts.

Now get some sleep.

We are so glad you are home Rae, even if I think they shoulda kept you if they dont know what is wrong!  I hope you get a good nights sleep.  It is so much nicer to go to sleep in your own bed with your honey than in a hospital with all the beeping and nurses coming in all night wanting to poke you with something.  Sleep well and I hope they have some answers  for you tomorrow.   Goodnight, Shelly

I hope you were able to get some good rest, Rae....

we'd love to hear more, of course, but do wait until it is comfortable for you to get back on here...

Dear Rae, 

While you are sleeping know that there are a lot of kind thoughts and prayers out here.

Rest as much as you can tomorrow and the days to come. We will be pulling for you whether you write or not.

I wish you and your family well,
Dianne

Rae,

I am sooooo glad you are home. Be sure to keep us posted as to what the doctor says.

Hugs,

So glad you are home, Miss Rae!

Now take good care of you, ok?

Hugs!

Take care Lady

I am so glad that you are well enough to come home but sad that you still don't have a dx. Please reconsider getting a consult from JHU. I just finished replying to Lizzylou on the http://community.diabetes.org/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=adatype2&tid=27333 thread with the reason why I feel so strongly about this. Please read it and think about it.

Hi Rae!

While I'm glad you're back home, I'm also concerned that they  let you out because they don't know what to do with you.

fyre522 said...

Nephrologist apointment that I have to leave my house for at like, 8-something tomorrow morning. 

I'm very glad you're getting in to see the nephrologist right away.  

fyre522 said...

And that my body isn't making red blood cells right now. 

This is more likely a kidney problem.  One function of kidneys is to make a hormone called erythropoietin (epo) which lets the bone marrow make your red blood cells.  When the damaged kidneys are no longer producing epo, you may have to have epo injections. 

fyre522 said...

I PROMISE to give a much more detailed "what's up" post tomorrow when I get back from seeing the Doc - right now I'm just really tired and exhausted,

Rae, your body is going through the wringer right now  YOU REST AND I MEAN REST.  Take care of your health first before you do anything else, including writing to all of us.  

I'm keeping you in my thoughts in prayers. 

- teapot

Morning Rae...I hope you got some rest last night and that the visit with the doctor this morning went well.  My sister has volunteered to loan me her broom so I can fly in and light a fire under everyone's a**es if need be.  Mine is in the shop right now for the annual after Halloween tune-up!  I guess everyone on these boards is in agreement that this has gone on far too long.  You especially!  I imagine by now you're getting tired of all the very well-meaning advice, but I'm leaning toward a trip to Johns Hopkins too.  May not do you a bit of good, but who knows...maybe there will be some obscure doctor from another planet there on sabbatical who holds the key (and cure) to your problem.  Stranger things have been known to happen......may be worth thinking about.  My thoughts and prayers are with you kiddo.  Keep us posted as you feel up to it.

 

This is what I was thinking too...hopefully, since the doc today is a nephrologist, he/she will rule this in/out. 

I can't say that I understand how/why they are doing things, but hope you get some answers soon. 

Miss you,

Although I have not been on the board very long, I feel like you are a dear friend and I want you to know that I am asking God to give your doctor the wisdom to figure out what is wrong and how to treat you effectively. Please get all the rest you can and know that we are all here for you.

That's a very interesting fact!  It does help explain some of the things she said they told her. 

Did you have that problem?

Lizzy

Hi - Rae - welcome home!  I  hope this is a new doctor you are going to.  And I hope you don't have to go back to that hospital.  If they can't even control your diabetes, I doubt if they are experts in other diseases also.  Good luck to you and you are in my prayers.

Janet (born on the 4th of July)

Welcome home Miss Rae.Sure hope you get some answers from the doctor today.Like everyone else has said GET SOME WELL NEEDED REST and feel better soon.

 

 

Judy

I've never been this out of energy!

I came back from the Nephrologist - made it to the sofa and asked Joe's Mom to turn on my oxygen machine for me.  That was an hour and a half ago.  I just woke up to Joe talking to me about some Blood Gas Test that the Hospital forgot to do WITH the O2 before they released me so now I have to get it done with my reg. doctor this afternoon.  Oy vet!

I HAVE ANKLES!  I don't know how I have them, but I doooo! 

They don't know what caused the edema - the Nephrologist says it definately wasn't the kidneys and that she thinks it's the RIGHT side of the heart - apparently when they look at your heart they mainly just look at the left side because that's where everybody and their mama has heart issues.  Well, everybody but me, I suppose!  She said either that or my lungs but since I had the edema WELL before the lung issues, she's laying her $$ on the heart.

But I have ankles!  WOO-HOOOOO! 

The White Blood Cell count reached 21,000 and they still don't know why.  Everyone still agrees that there's some sort of infection.   Everyone still agrees that this is what caused the edema and probably the breathing problems that came on so suddenly.  Everyone still can't find where this damn infection is.  Good news?  At least I'm not contagious!!!

The Red Blood Cell count kind of stopped.   <---Don't they look like fruit loops!?

My body used all of its iron and the iron it had in reserve and now I have like, no iron in my body so they have me taking iron pills and the Nephrologist hit me up with a shot of iron in the office this morning.  But somehow no iron is making my body cease production of red blood cells.  Not cool.  I don't exactly understand how it all meshes together and I'm sure she probably explained it to me but I am so darn tired today that I probably just don't remember.

I lost 37 lbs. of fluid since last Wednesday!   Only 9,543,212 more to go, LOL!

I go see my PCP in about an hour and a half - I hope she has some happy stuff to say!  Poor Joe was all worried he was going to kill me accidentally if he stepped on the oxygen line running from the machine to my head, LOL!  He's so sweet but so naiive sometimes.  I really don't like being on O2 but hey if it keeps me breathing it can't be that bad, right??  Hopefully it's only a temporary set-up.  It gets annoying trying not to step on my own cord, hehe!

Thank you again to everyone for all your kind thoughts, words, prayers, etc.  It really meant/means a lot to me.  Hopefully I'll get some more strength up here soon and be able to respond more properly to everyone.  Right now I'm about to catch another 1/2 hour nap or so before going to see the Doc. 

Take care everyone!  :-) 

 

Ankles are a good thing!  So, off to a good cardiologist?  To check the right and correct side of your heart?  I sure hope so.  Keep resting.  Take care.

Hey Rae, when you get a chance later, check out the post by teapot.  That sounds like what they told you.  I did a further search on the net.  Might be worth doing.

I'll talk with you later on tonight.  Tell happy feet to stay away from the tube LOL.

Lizzy