ARGH Hospital Stay Not Good

I am sending positive thoughts your way....I am so sorry you are experiencing this and it is shocking that they would treat you this way....why haven't they given you the shot? How long will you be there?

Hi Barbara! What you are experiencing is inexcusable and I am so sorry that you are having to go through it. Please see if they have Patient Advocates available at this hospital. I (and family members/friends) have used them before, and even though they work at the hospital, they will definitely 'advocate' for you! Of course your family or a close friend can help be your voice also, but a Patient Advocate has a lot more 'pull' and can get things done. That nurse (and I use that title loosely!) put your very life at risk - the same with delaying your blood thinner. You are in my thoughts - I hope everything goes flawlessly and you can get the heck out of there SOON!

omnibudsman...what is the difference vs nurse advocate? It is inexcusable!!!

We are praying for you.

That nurse needs to be repremanded. Request a nurse advocate now. Let us know what is going on.

Betsey

Hi Barb,

I can't believe they put you in a room with someone that has a fever and infection. Wait until Bill finds out, he will have a coronary then you two can share a room, lol. (((hugs))) Good thing you know your body and the proper procedures that must be carried out for your port. I hope you are getting some rest. I will phone you this morning.

Hugs,
Julia

I agree with the others in either get tha patient advocate or the hospital adminstrator, they need to be working with you and you need a private room.
Sure hope your doing better soon and I will be thinking of you.
Many many prayers and well wishes being sent to you, and I sure hope your doing better soon, and getting much better care.

Take care of yourself and hope you are better soon.
Do whatever you have to so to get in a private room away from germs,

Cutting and pasting the following post from Lupus for Barbara -- she's having trouble doing that from the iPad, so here is her post.
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Well it's been a stressful day for me and I'm functioning on about 3 hours of sleep.

I have to say I'm being very polite and not losing my temper. I still have a roommate and I've been assured that she does not have an infection that puts me at risk. Apparently, she has a very serious case of gout and it running the fever from it. The poor woman is in so much pain she cries out when they move her blanket. She has been here since Wednesday and can't even get up or move her legs.

She screams and cries as they attempt to put her on a bed pan. I fell asleep about 4:30 this morning and was awake 2 hours later. I did sleep for about 1 hour more this afternoon.

As to the issue of heploc of the port I've talked spoken to the Head Dr, the Charge Nurse and haven't succeeded in getting it. The Dr agreed that if my port cloths up I'm screwed. They say it's the medical centers policy that heprain isn't used on the medicine wards, period! That flushing it with saline is enough.

I have too many chefs in the kitchen and have been given various updates. I DIDN'T get another dose of the medication today as they said. If my kidney function is stable I will be discharged tomorrow sometime. Then I'm to see the specialist who ordered this treatment and if he feels I can get however many infusions I need outpatient. I just emailed my PCP at her personal email, I'm considering not allowing them to deaccess my port tomorrow and going directly to the military hospital to attempt to have it removed and heploc done on it before removing the needle.

It's a federal holiday on Monday and I don't even know if my Dr is even in town or if she'll even see my email. Just so so frustrated, I just hope my black cloud doesn't rain on me yet until I'm out of here.

Hugs,
Barbara

Hey Tina thanks for your post. Well I'm sitting in my dark room unable to sleep. My roommate is in SO much pain she yelps out in pain if she moves in her sleep. Plus bless her sole, she's worried what I'm thinking about her, they are giving her gout medication every two hours and it cause extreme diaherra. She can't get out of her bed to the bathroom. I told her to not worry, it's nothing you can control.

I hate to see others hurt that bad, as I've been in that spot many times. I'm hoping that once its time again for my morphine IV it will help me sleep.

I did bring my IPOD with me with my music I meditate to so, I'll put my earbuds in and try to sleep soon.

I hope you are doing a lot better, I know you're going through a lot right now.

Hugs,
Barbara

Thanks SB I appreciate your well wishes. I'm being discharged this morning, I asked to go home and since my kidney function is good they agreed.

I haven't heard from my Military Dr I was afraid of that I'm guessing she's away over the long weekend. I'm going to let them deaccess the port and I'll call the hem/onc ward at Bethesda. I'm sure they'll help in someway.

Just to share a bit, I know this seems extreme for warts, but I had a small wart on my left thumb in 2001 now my left thumb is totally deformed and unusable. It's painful and bleeds, my right thumb has now got a wart growing too it is now deformed too and unusable.

In the last month I have about a total of 20 or so growing along my incision from my C-section sight, my naval, my colon surgery scar that runs from breast bone to below my belly bottom.

As I have no immune system I can't fight these off, I'm also have them in other areas that are much more sensitive.

They have to do something to kill this virus, Ive asked for the past six months to have them amputate my thumbs. I'm embarrassed of my hands, it only adds to my self asteem issues, I've taken at minimum of 25mg daily of steroids or higher amounts sometimes as high of 80mg for some months for almost 12 years. I'm the poster child for what someone looks like with high dose and long term steroid use.

I've been assured that I can't spread these to others, but you know how some people can be. You'd think I was the elephant man at times.

Anyway, SB, just wanted you to know this isn't just "a simple wart issue". The Dr who ordered the drug is renowned, the Discovery Health channel did two programs on him treating Dede the tree man, and the Bubble Man, google it and you'll kinda get an idea of the stuff he deals with.

I am in NO means anywhere close to Dede's condition, however, if we can't control these on me I'm afraid I may end up that way. I'll see the Dr this week, I hope to work something out so that I can get treated but also be safe about it.

Thanks everyone for your support.

Barbara

Many prayers for you Barbara.

Hope your doing better, Barbara! Many prayers. How's Nikita doing? Does she like College? Many well wishes to you.

Hi everyone, thanks for your well wishes. YES, this was one of the worst hospital stays I've ever had.

I found out on Sunday morning that the night nurse, she started at 7pm Saturday night thru 7am Sunday, decided to play Dr. I have a killer case of pericarditis, the Dr had changed my oral BT meds to IV morphine. I was miserable all of Saturday night. The night nurse gave me my IV meds at 10pm and refused to give me my next dose until 5:30am Sunday morning. Needless to say when day shift came on I was sitting at a solid 9 on the pain scale.

The day nurse asked when I had had morphine last and I told her, and I remarked that I had to wait 6 hours before my next shot. She looked at me and said "NO" the Dr wrote the orders yesterday evening for you to get 4mgs of IV morphine every 3 hours. Boy did I get upset when I heard that. I have filed a report to the hospital patient advocate.

SB I'm sorry about being touchy about your post. I know unless you've seen my thumbs, it did sound like I was going to extreme and dangerous measures to treat warts. I really have asked several Drs to amputate them.

As to PM, my PCP admitted me in February 2011. She had asked PM to give me a ketamine drip. They refused and suggested to her that I go from OxyContin to methadone. At first I refused, but finally agreed, so we made the change and my PCP does the prescribing and follows me on my methadone.

The PM doctors are really busy with the wounded soldiers so they don't see dependents. Recently, my PCP sent me to a PM Dr on the ecomony. He has given me 2 epidural steroids shots in my back. I have had ZERO relief from them. The PM seems really, nice but my PCP only wants him to handle injections. I'm due for my 3rd injection next week. I'll discuss my pain issues with him.

Thank you for offering a referral to your PM to me. I may take you up on it at a later date if need be. You are correct that we're in the same area, maybe sometime once I feel some better, maybe we could meet for lunch somewhere in the middle.

Chart, my girl is doing well, she's been home since December 16th and she goes back to school on the 2nd. Her school has a really long winter break. She's been doing 2 online courses over winter semester.

Matt, I'm at least home, my pain is still very high in the chest from my pericarditis and my back pain is at a solid 8 I just don't know what I'm going to do. I'll see my dermatologist tomorrow, once I find out how often he wants to give me the drug, then my Rheumy can figure out often to give me my Benylsta. I'm going to be on 2 different potent drugs and they don't have any data as to how the 2 drugs will mix together.

I really want to say I really appreciate all the support each and everyone of you have offered to me. I hope that all of you have a low pain levels this week.

Hugs,
Barbara