After 18 days in the hospital I am finally out...But....

[mngirl]

I may be going back! Here is the long story...Friday the 28th I was put in for dehydration. We expected it to be a 48 hours thing, even my dr thought so. But things just started to get worse. I couldn't stand the smell of ANYTHING! My DH couldn't even have a life saver in his mouth, I made him leve the room with it to throw it away. according to everything I had lost 16lbs from all this the day I checked in. We tried EVERYTHING to stop the nausea...even merinol (pill form of pot!)...I was given 3 BAGS of fuilds the 1st day I was in there I was so dehydrated. Overall, I think that I got about 12 bags or so of fluids.

I had an allergic reaction to one of the anti-nausea meds...my face and jaw started to tighten up so much that it was being pulled in different directions, I thought I heard muscle tear. The nurse had never seen it before. Something like this happened one other time to me and benedryl helped. I got VERY LUCKY...my dr was in the next room. The nurse ran next door and he came in right after her. He had to figure out the antidote...I was crying so hard because of how much it hurt. I would get enough of a relaxtion to allow me to swallow and it would start all over. My dr figured out the antidote and cthey called it to the pharamacy. They had to sit there and watchme and couldn't do a thing...I was crying so hard. The med WASN'T COMING and my dr was getting mad. He stepped outside my room and I heard him call the pharamacy and ask where the **** it was. They said that it was on it's way up. So my dr had a nurse waiting at the tube to get it quickly. Once they injected it it took about 3 minutes and it COMPLETLY dissolved and my muscles loosened up. Then as I was talking with him it started again. Luckily they sent up several doses and the 2nd one was the last I needed. So, now I cannot take any anti-nausea meds in this family, which basically is all the ones the give out.

They even tired out a anti-nausea bracelet on my wrist - didn'y work. We tried tons of other meds, nothing worked. I didn't eat for about 2 weeks and was only surviving on the fluids.

A few days ago they FINALLY found a med that worked. It is one that they give to cancer patients before they have the chemo treatments. I have to take it an hour or 2 before getting up ottherwise I have throw up or hav the dry heaves. Then I have to have it an hour before every meal, or else I cannot eat. We are still not sure why.

We have also been trying to calm down my headaches...we found a med to help with that, but I can't work being on this stuff...a narcotic...They found me a new sleeping pill that I actually wake up RESTED from. I was having issues walking...the dizzies were so bad...I couldn't get to the bathroom myself or even shower myself! DH gladly volunteered though LOL!

They had put in about 12 IVs...I had finally had enough. I requested that a pic line or port be placed. So yesterday morning, I had minor surgery and they placed a port on my left side. So, no more IVs or blood draws through my arms...The port is sticking out a LOT more than they thought. You can definitely see it...We got to use it last night for the 1st time. We did a mini lidocaine infusion (100 mg) in the ICU. We started it at 10 pm last night and it was done at 2 am this morning. But, I didn't feel anything when the put the needle in! And it is an INCH LONG needle! I am SO HAPPY that they put it in. I am a little made that we didn't do it sooner.

My dr and I had a GREAT talk this morning about everything. I talked to him about getting a counselor. I have to get a list of the in service providers and then we are going to talk to see who may be the best fit for me. We talked about the meds (I am adding 4 MORE to all the ones I already take - this is all so I can just eat and liveright now!)...We talked about work and the lump I still have in the left side. He said that if it is still there in 3 more months they will aspirate it and make sure it isn't anything (that would put it at it being there for 6 months!)...We talked about the Botox injections the insurance won't cover...he told me that he is just going to do it and not charge me for it (A $1000 treatment!) It was just a GREAT conversation. We talked about my infusions...I felt so great after talking with him this morning....We went to the hospital gift store the night before and I asked them about the medical alert bracelet chains and if they would be interested in them, they said they would be! So I made a business connection there!

Then the day got worse...

We left the hospital...had to go to Target to get my new meds. Well...we get to the pharamacy and they tell us that one of the meds(the pain med), they don't have. But here is the KICKER!!!!...The ONE medication I NEED to be able to EAT is NOT COVERED by insurance and it is, get this $6000 for the prescription!!!!!!!!! $6000!!!!!!!!!!!! He called the oncall doc who just doubled one of the other doses of meds and guess what, it isn't working. I came home to quicl to make sure to eat. Then the stomach cramps started and now I am feeling sick. I was taking this on a schedule in the hospital. So, now I am supposed to wait until MONDAY when I go in for my infusion in the a.m....And then HOPE that the insurance co approves it Monday! I could cry right now...something FINALLY works and then I can't get it or afford it! So, unfortunately, if this continues to tomorrow morning, I am checking myself BACK into the hospital until the insuance company approves the meds! I so don't want to go back. I just got out!

Owen just smiled at me today and whispered "You came HOME! I love you!" I feel so awful that I had to leave my boys like that. Luckily my mom came up from Texas to help out again. A TOTAL saving grace!

People at work have been GREAT! I never heard of this person, but my DH's work got us a chef for 2 weeks! So, all meals are taken care of (never even knew there was someone around here to do that!). My co-workers have been good, my boss is another story though. I guess he has been rolling his eyes when my name is brought up, etc....

Right now the port hurts...and my beck on that side hurts too, my dr was afraid of that...but hopes it goes away. But, I am just so afraid of having to go back in. I am getting the watery mouth (my pre-throw-up warning) - sorry about that gross picture....Why does this ALWAYS happen to me! $6000!!!! What the ****!!!!!!! So, if you don't hear from me tomorrow...I will be back in the hospital just to be able to eat.

I was hoping that I this was coming to a close...I have an infusion on Monday morning which will be interesting. I usually have itover 4 hours, but this one will have to be over 8 since the port is so close to my heart. I hope that nothing happens then too.

He added some Florinef (which we tried once before and it didn't work very well)...but it seems to help this time. We added 4 more drugs, but without the one to help me eat, I am not feeling too hot!

So...Brownies to all for reading the post this far....Cross your fingers..

Lisa

[Gena]

You have been through the ringer Lisa, and yet you continue to have a fighting spirit. Keep it up! I will pray that your insurance will cover that costly med so you can eat properly. My heart goes out to you and I hope that they will find the right treatments to help you recover quickly. Sounds like you have a great doc who is very understanding and I'm glad your co-workers and family are supportive too. Think positive, healthy thoughts. Think about your body being re-balanced and finding it's natural equilibrium again, where everything is working in harmony. I will keep you in my thoughts and prayers.

Gena

[mom4cem]

wow, you certainly have been through alot and I hope that is the worst that it was and it is only positive from here on in. Your post certainly helps to put some things into perspective for me. I just hate that we all are having some degree of difficulty and sometimes it is even harder to find the right person to help us, the right meds to help us etc....Thank goodness for your Dr., he really seems he is trying hard to help you. Sounds like a keeper.

The chef idea is great. How nice of them to think of you and do that. Don't worry about your work though, there are always crumbs like that unless they are in the position themselves think that we are overexaggerating our illness epsecially if we by appearance don't look sick.

Well wishes your way on your road to recovery.

[morgan617]

So sorry to hear about all you are going through. It sounds like the reaction was to compazine. It causes almost a tenus type reaction. It's really awful, I'm sorry you had to go through it.

I'm pretty sure an insurance will have to approve the med if you have tried all those others. Typically, once they've proven the others don't work, they have to pay to pay for the one that does. It's unfortunate your doctor didn't get a pre auth for it, before you got discharged.

I hope things get better, it sounds like that's all they do right now! Also glad you are seeing a couselor, as this is a big load to haul. I think you will find it very useful. Best to you, morgan

[Ernie]

When I went to Vandy they tried that cancer med on me and it worked.

Then I found out that it is not available in Canada.

I heard that it is 80$ per pill.

I hope your insurance will smarten up.

[dizzygirl]

WOW! I really hope that you start to feel better... and that you can get your med covered by insurance asap..

good luck to you!

[MightyMouse]

Lisa, wow, you've sure been through a lot. I'm thankful though, to hear that your doctor is such a good advocate on your behalf. Here's to the insurance company smartening up that it's cheaper to give you the meds than it is to keep you in the hospital.

nina

[lalalisa]

Lisa-

You sure have been through a lot! I'm glad to hear that you are finally home. Keep us posted about the med -- I really hope this all works out for you and gets covered by insurance!

Hang in here,

Lisa

I'm also impressed about the chef!!

[DSM3KIDZ]

I haven't been posting in awhile and just read your post. Wow! my heart goes out to you. I hope the insurance company comes through for you because if you found something that helps that's amazing.

I've been through all that anti nausea drugs and I might even sell my right arm to pay 6,000 if it gave me the opportunity to have no nausea for a month

What is the name of the med?

I wish you luck and I'm glad you have a doctor and family support in your corner.

Do you have gastroparesis?

I haven't been around so I'm lost. I've been riding the couch and caring for my 3 kids from the couch (it's getting tricky).

Good Luck , if you do botox let me know how it goes.

Dayna

[Poohbear]

Lisa,

I hate that you are going through all of this!!!!!!

I wish I had some great words of advice; please know you will be in my thoughts and I hope you get some improvement with your treatments tomorrow.

Keep us posted as you are able.

Sending (((((HUGS)))) your way!!!

[Dizzy Dame]

Lisa,

I'm so sorry you're going through such a rough time. Hopefully your insurance will wise up and start paying for your nausea med. I really hope you don't have to go back to the hospital, they're yucky places!

It sounds like you have a great doctor though, who'se willing to advocate for you

Keep us posted as you recover (hopefully sooner rather than later)

((((hugs))))

- lauren

[mngirl]

Thank you all so much for the well wishes...I still have not gotten the meds approved through insurance. My dr was able to get his hand on 2 sample tablets. So I have to take them right before lunch and hope it holds out until dinner so I can eat. The drug rep comes in on Wed and they are going to ask him for some add'l samples. Then they will call me in to give them to me. I have another infusion on Thurs, so I hoe it is approved by then. They put a rush on it and told them if they don't approve it I will be admited to the hospital to get the medication, so they will be stuck with that bill instead!

Today was actually a good day...My infusion went well...they gave me some pain meds,,,my port is working GREAT...I would recommend it to anyone who has to get pricked as much as I do. They told me to take 4 times my pain meds and double a dose of another to reduce the headache pain I am having.

Anyway...I just wanted to tell you it was a good day...I never thought I would say that any day soon.

Thanks again for the well wishes...they are definitely working!

~Lisa

[Evie]

Im glad that you had a good day $6000? thats rediculous! good luck with getting the samples, your dr sounds wonderfully supportive

[MightyMouse]

Oh, Lisa, I forgot to add that I had a similar terrible reaction to compazine, and unfortunately, I was at work when it happened. I could no longer focus my eyes, I couldn't speak properly, and light and sound were practically painful. Hard to describe. A coworker drove me home because at the time no one realized it was a medication reaction; thankfully my spouse figured it out, but I did have to tough it out for about 3 hours before we got the right meds on board and my body calmed down. Wouldn't wish that ordeal on anyone and sorry to hear you lived through it too. Yuck.

Here's to your insurance company pulling their collective heads out of the sand (I was nice, as I had other thoughts about the location of their heads...) and pay for the meds. Goodness gracious, wouldn't it be nice if common sense prevailed?

nina

[steph37822]

oops

[calypso]

Oh my gosh, Lisa, I am so sorry to hear of all your troubles and having to be in the hospital! I don't know much about CVS or the nausea end of dysautonomia, but I have heard plenty from others here and can imagine it is just awful. I hope the med you need gets covered, that the chef is able to make some things that you enjoy, and that you can gain a few pounds and get back on your feet.

amy