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tash32 In Hospital

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Posted 1/15/2008 11:14 PM (GMT 0)
Hi Everyone,

 

Maree (tash32) asked me to let you all  know she is in the hospital.  She went there a few days ago with bad chest pain and difficulty breathing.  At first they thought it may have been a blood clot but she sais they have ruled that out.  They have put her on a new medication called methylprednisolone.  From what I could understand she sais it may be the lupus attacking her lungs but i'm not sure.  They have her on oxygen and she doesnt think she will be out until Monday the 21st but she still isn't sure.  I called her at the hospital today and she seems to be in ok spirits but also seems a little down.  So let's all pray everything goes ok and she gets through this as soon as possible.  She sends her love to you all.  I will call her tomorrow and keep you all updated. 

 

Thanks,

 

Kacey

Posted 1/15/2008 11:39 PM (GMT 0)
Thanks so much for the update Kacey!! I hope you'll keep us posted. Hey Tash!! So sorry to learn you are having such trouble ((((((((((((Tash))))))))). Sending you a nice hot pot of tea and a big hug with a prayer for your quick recovery and guidance for you docs. Blessings!
Posted 1/16/2008 12:52 AM (GMT 0)

Hi Kacey, thank you so much for letting us know. If she has to be in long Please let us know if she is up to a phone call at the hospital. I know how lousey it can be. I just did two stence in there myself for my lungs.

Tash I'm so sorry you are having trouble. The drugs they have you on will really help with the breathing problem. It just takes a while to get them to work. The good news is that it isn't a blood clot! The bad news is that medicine will make you want to eat everything in sight. I used to have them bring me in crackers and tea at night it helped alot. Just hang in there and take it very easy. Being low on oxygen just wipes ya out. If ya need anything let Kacey know. I'm the queen of lousey lungs. We can compare notes. Try not to get to down and think of it as a time when all you have to do is push a button and somone will be there for ya. Of course the t.v. sets kind of stink!

lots of love and prayers

carol

Posted 1/16/2008 12:59 AM (GMT 0)
Thoughts are with you. Hang in.
Posted 1/16/2008 1:35 AM (GMT 0)
Tash, saying some prayers that you are feeling better, soon!
Posted 1/16/2008 2:52 AM (GMT 0)
Hi Tash:

I hope and pray you'll start feeling much better. I know you're in New Zealand and it's hard to call you. I've asked Kacey to give me your phone number at the hospital and I'll call you tomorrow. (((((((hugs)))))))) I'm so sorry you're feeling bad sweetie.

Love you,
Barb
Posted 1/16/2008 3:18 AM (GMT 0)
Hi Tash
I'm sorry to hear your having problems.I'll keep you in my prayers and hope you start feeling better real soon . Love you Tash

Kay
Posted 1/16/2008 3:28 AM (GMT 0)
Tash, I don't know you but I'm praying for you. Hang in there-I can't imagine how scaired you must be right now, but just remember that there are a lot of people thinking of you. Take care! Love Firebabe.
Posted 1/16/2008 11:09 PM (GMT 0)
Hi Everyone:

I just spoke with Tash. She said that all of her organs have inflammation around them. They are treating her with higher doses of prednisone and some pain killers. She now off of oxygen and they are moving her off the heart ward to one of the regular wards. She sounds like her spirits are up a bit better. Yesterday, she was quite upset, apparently her rheumy is out of town till next week. The doctors are throwing loads of tests they want to do at her. Her mitral valve is leaking more so they're worried about her heart. She doesn't want to agree to anything w/o talking to her rheumy. She hopes to be out of the hospital by next week. I'll call her again tomorrow and I'll keep you updated then.

Take care,
Barb
Posted 1/17/2008 2:33 AM (GMT 0)
Thanks so much for making the call and giving us an update, Barb. Tash, I hope you start getting better soon and can get back home. It sounds like you're having a rough time of it. Hopefully your rheumy will show up sooner than expected and help you out some. Thinking good thoughts and sending them your way,
Posted 1/17/2008 3:46 AM (GMT 0)
I don't really know her, but she will be in my prayers and thoughts. Judy
Posted 1/17/2008 5:14 PM (GMT 0)
(((((Tash))))) I'm so sorry you are so sick. You will be in my thoughts and prayers.
Posted 1/17/2008 10:30 PM (GMT 0)
(((Tash))),

   I'm sorry to hear you are so sick. I hope things turn around for you quickly. Hang in there! You are in my thoughts and prayers.

                                                       Love, Babs

Posted 1/18/2008 1:06 AM (GMT 0)

Tash,

You have a whole bunch of us praying for you.  So sorry you're going through so much.  We're glad to have the updates on how you're doing.  I hope your rheumy gets back soon to help you.

Blessings,

Ginny

Posted 1/18/2008 2:31 AM (GMT 0)
Evening Everyone:

I spoke with Tash today and she sounded in good spirits. She said that she's on 60mg of Prednisone, they've got her on a water pills. She had put on 6lbs of water weight, so she needed the water pills a lot. Her inflammation markers are still high. She's have pain on and off they've got her pain under control. Over all she said it's basically a flare.

She says thanks for your prayers and well wishes. She's not sure when she'll be out of the hospital, probably next week like on Monday. I'll give her another call tomorrow and let you know how she's doing.

Love,
Barb
Posted 1/19/2008 8:43 AM (GMT 0)
Hi Everyone

Thanks you so much for your well wishes and prays.  They finally let me out yesterday after realising that putting me into a ward was not a good idea considering i could pick up another bug from other patients.  This time in hospital has been by far the scariest as the doctors who were trying to treat me knew nothing about lupus or had even heard of my medication, they didnt even have my medication in the hospital, lucky bacause I usually take my own anyway. I take arava along with other meds.

They were no older than I was and tried to tell me that they were going to put me on new meds and treat me with iv steriods because i didnt realise how sick I was.

I refused the iv becasue i have been a long time steriod user and my rhemmy dos not want me to have anymore than needed but they would not listen and tried to bully me into something which was truly terriffying.  After a long day of crying and argueing with them they finnally realised that i wasnt going to change my mind so they said that i could just take more pred (which I wanted to do from the very start and see how things went)

Thanks goodness for my mum otherwise i dont know what sort of mess I would be in right now

Anyway I managed to make an appt with my rhemmy for Monday and they were not happy about me being able to pre arrange that because I was the patient and they were the doctors.

So at the moment im just holding my own and on 55 mg pred plus antibiotics, water pills and cannot drink anymore than 1.5 litres a day plus all my other lupus meds, until I see my rhemmy, they still want to do a bronscopy plus a kidney biopsy but the will be up to my rhemmy now to decide thank goodness because he wont put me through any unneccessary trauma which he has often told me before.  I still have inflammation around my heart and lungs and my mitral valve is serverlly damageed but they did say my body has adapted to this and coping well with it so dont have to worry about a heart valve transplant at this point in time.

Im all ready for my appt on Monday and have a list of complaints about my treatment and also what actually what i think built up to this episode as i was put on clexane prior to a vulval grade 3 operation and that when  my problems all started, I will let you know how I get on when i see my rhemmy on Monday.

Just thank you so much for your thoughts once again and I will try and post more because we are the only ones that really understand. Just make sure you alway try and stay strong no matter who or what comes at you and hopefully things work out in the end.

Take care

Tash32 (Maree)

 

Posted 1/19/2008 6:46 PM (GMT 0)
((((((((((Maree))))))))))) Sounds like you've been through the ringer!!! I wonder if it would help if you admitted yourself to a hospital where your rheumy has privileges. That's always a good idea for someone with so many problems. Not sure it is practical . . . but might help next time you are in the hospital. Always call your rheumy before or asap when going to the ER or the hospital too, so he can communicate with them while you are there. Smartens them up a bit. Thanks for the update and SO glad you are home. I hope your rheumy makes a good game plan on Monday. Will be looking for your update!! Some hot tea and a big hug for you Maree!! Blessings!
Posted 1/19/2008 10:39 PM (GMT 0)
Hi Tash:

I'm so glad that you're home. I'm sorry that it was such a horrible experience. I had a horrid experience today with the doctors in the ER. I swear sometimes you just want to shoot them. Anyway, I'm very happy that you're home and I'll talk with you soon.

Love ya,
Barb
Posted 1/20/2008 4:53 AM (GMT 0)
Maree,

Good for you for hanging tough with your treatment while in the hospital. I'm glad you will see your rheumy on Monday. It sounds like you have great confidence in him and that is always good. Let us know the outcome.

emmie
Posted 1/20/2008 7:12 PM (GMT 0)

Tash,

   Bless your heart! ((Hugs))  I didn't know you were going through so much sweetie. I hope your appt with the rheumy goes well on Monday and this gets taken care of properly. Please take care and keep us updated. You are in my thoughts and prayers.

                                         Love, Babs

Posted 1/20/2008 7:55 PM (GMT 0)
Hi Maree.  I'm glad you're home.  It sound like you have a great rheumy and I'm sure he will take good care of you.  Hopefully he will get you feeling better soon!  Love, Butterflake (Donna)

Posted 1/22/2008 2:55 PM (GMT 0)

Thanks everyone for your support.   Our hospital system is free over here and my Rhemmy was away on holiday, because of my lupus and other medical conditions that I have developed over the years it is far to expensive to get medical insurance and no one seem keen to insure me anyway, gosh I can't be that scary can I? lol But he is going to write a letter to put in my file to make everyone aware that he is looking after me and that I need my lupus meds so there should be no problems from now on hopefully.

I saw him on Monday and things went very well I felt so relieved after seeing him my stresses eased up so much and i felt so much safer.  He did mention a kidney biopsy because he said my kidneys have been so up and down lately one test  they are good and the next they arent.  Has anyone ever had this with kidney problems before?

I am to see him again in a week to let things settle down a bit , Im glad the building is stable and i think i would have shaken it down I am so unsteady and the moment. He needs to study my notes and decide what plan of action to take and to get my lupus under control plus controlling all of the inflammation around my heart as he said this is very dangerous.  He wasnt keen on the iv steriods but did say that sometimes it is a must in theses circumstances. So this week I get more bloods done and just try and hold my own, I did try and cut down to 50mg pred but its just not a possibility at the moment as from all the stress about the hospital its made my lupus worse, even though I am quite sick at the moment im very happy that things are working out.  I will keep you updated on my next appointment.

take care
tash 32

Posted 1/22/2008 6:07 PM (GMT 0)
Hey Tash . . . thanks for the update sis . . . *sigh* . Always good to check in with your own rheumy eh?? Sorry about the kidney and heart issues. Thats gotta be scary. I hope you will start a new topic to ask about your kidney issues. Some of the members with chronic kidney issues watch for topics where they can help and they post mostly in those. Your question will get lost in this string. I hope your rheumy contacts you quickly with that game plan. Blessings!
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