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393986 tn?1303825975

Hi Everyone!!!!

Hi!!!!  I just want to say thank you for all the support, prayers, well wishes and all the love I have received this past week.  It has been appreciated so much!!!  Well the Dr's I seen minus the Oncologist were awful, they kept looking at the wrong chart and labs and they made me feel like a bug needing to be squashed.  The so called big wig professor blatantly told me I don't have Still's or any other rheumatological process going on and even for matter of factly told his students I didn't have any swelling going on in any of my joints when he didn't even look at me.  He made me feel absolutely awful and I bawled my eyes out.  I called my rheumy and cried and cried to him about how I was getting treated there.  It didn't matter much though to him.

The Oncologist was great!!!  He made me feel like a person again with real health problems and he voiced his concerns about how long I had waited to have the bone marrow biopsy.  I should of had it done months ago.  I got his notes and his working dx is leukemia but he had to put something down right?  His differential dx's include myeloproliferative, TRAPS formerly known as Hibernian fever (this only occurs in people of Irish descent-I'm 1/2 Irish), hyper IGD syndrome.  Although it is going to take 5-7 days to get the genetic mapping and the bacterial, fungal, and infectious smears back, I am remaining hopeful that this is not Leukemia.  Other than my labs being off for so long, I really feel like this can't be it,  there are things that just don't add up for it and I will continue to deny it until told otherwise.

My last nurse refused to document my fevers, she said she wouldn't write anything down in my chart unless my fever went over 101.  I had a fever of 100.7 yesterday and felt awful, I was throwing up and she would not help me one bit.  She refused to give me my pain medication and thankfully I had all my meds with me and I took them.  I should of called an authorative figure and got her in trouble but I just wanted to get out of there.  I felt like a caged animal.  

I had my ultrasound done again yesterday morning and I won't know anything from that until I have my follow up with my IM.  They should of biopsied the mass on my kidney and the nodes in my lungs, I have an appt now with the Pulmonologist on the 17th.  Funny how Rena and I have the same date for the same kind of Dr. :)  But I am still mad as he** about this not being done inpatient and how the lack of communication between all my Dr's were.  I still think that no wonder why there are so many wrong dx given, or people remain in limbo for sooo long and it is uncalled for.  I feel another mission coming on.

Again thank you for all the love and support, it truly made a big difference in my life :)

Love You All,

Ada
12 Responses
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465975 tn?1224231635
  I am so sorry for the way you have been treated. I would without a doubt make reports to any and everyone about the poor treatment and utter disrespect you experienced.
  I pray everyday that the good Lord will watch over you and all my friends that are here on the group.
God Bless you Ada,
Mike  
Helpful - 0
147426 tn?1317265632
Hey, I can't tell from here if you had an episode of true vertigo, a severe vaso-vagal thing (though you're blood pressure would have been too low) or if this is a problem with the steroids again.  It would happen "again" because you are likely still under physical stress and you will need extra steroids whenever you're stressed.  The bone marrow biopsy is a stressor, pain is a stressor, the fever is a stressor, and your illness is a stressor.  The heat can be a stressor,if you got overheated.

If the nausea, dizziness, confusion and vomiting keep happening, call 911 or your paramedic friends.  Are you still only on 5mg of prednisone?  Until you get into the hands of someone competent in managing adrenal suppression I remain worried about you.  If you can't tell what is casuing it, but cooling down and resting don't solve the problems, then you are safest to assume it is the adrenal crisis reappearing and act on that presumption.

Do you read me?

Have you really been OFF the steroids for two weeks?  I understood that you were to be on 5mg as recently as last Saturday.  Did I lose a week again?  Even if you have been completely off for two weeks, you should still assume that you need more steroid when stressed.  You are at risk for symptoms of adrenal crisis anytime you are stressed physically.

Quix
Helpful - 0
393986 tn?1303825975
Good Evening Everyone, well now that I am home and getting back in the normal groove of things again, I can't say it enough how much I appreciate all the support.  Today has been filled with a lot of research and dizziness.  The heat is making things tough and add a fever to the mix it makes things a little unbearable.  I don't understand, I have been off the steroids now for almost two weeks and I figured the heat intolerance would go away but it hasn't and more than a few times today I have reached for my bottle of prednisone and then put them down.  But I want the Dr's ok to do so.  

I made supper tonite and the kitchen was really hot, I was having waves of dizziness and nausea.  I sat down at the table and took a few bites of food and this time my heart started pounding, the world was going counter clockwise, my ears felt full of hot water, I could not move my head or open my eyes up at all.  My hubby finally got me to the couch, after I lost my supper :( he turned the ac vents towards me and put a fan on me, he took my blood pressure, it was fine for a change.  I don't understand what this is and why the hell it couldn't happen while I was at the hospital, oh wait, they probably would put it on somebody else's chart, lol.  Or tell me well we see no swelling of your pinky finger so it can't be an episode of vertigo. :)

So tell me guys, does this sound like a true episode of vertigo or something else?  Am I still having effects from quitting the steroids?  If so, why so late in the game?

Love You All So Berry, Berry Much
Ada
Helpful - 0
293157 tn?1285873439
that is just horrible what you have gone through and I know it happens way to many times.  

I wish you all the best and hope all works out for you.... try to rest and not worry to much....

take care

andie
Helpful - 0
338416 tn?1420045702
Ada, they *are* doing the biopsy on the kidney and lungs, right?  Sounds like that's the next step.  I'm astonished that your nurse wouldn't even record your low-grade fever on the chart.  WTF?
Helpful - 0
220917 tn?1309784481
Hey, Sweet Thing!

I just wanted to pop in and let you know I was thinking of you.  I know you're scared, and that's OK.  We are all very worried about you, and are keeping you close to our hearts this week.

Hang in there, and know you are loved.

Hugs,

Zilla*
Helpful - 0
458072 tn?1291415186
I would definitely call and report that nurse, and the dr too. It is just like wishforchange said. If you don't want to do it for yourself, then do it to make them aware of this so she won't be allowed to treat anyone else like this.  You do feel vulnerable while in a hospital, and sometimes you have to throw a good fit. Talk lawsuit, calling in the local newspapers. The patient has the right to be treated with respect. Its not like we are beeing treated for free or anything....

Being nice, unfortunately doesn't always work.
Helpful - 0
506846 tn?1217265961
I am so sorry for your experience.  I can relate I have had some real winners myself!  The first Emergency room I went to, (when my Symptoms started) The ER Doc just stared at me!  I had to ask for labs. What kind of Cr** is that!!  Then I received the bill for $700.  And I am supposed to pay for that kind of service! So I know what you are going through, as well as so many others on this Forum.

Although my issues are no where as serious as yours!  
You are and have been in my thoughts and Prayers.

God Bless,
Aura
Helpful - 0
Avatar universal
I would be kicking and screaming until they took notice. What happened to the co-ordinated plan of diagnosis? The "team" of doctors have let you and the whole profession down. Maybe a call to your insurance representative would help get their behinds moving!  Try to stay focused, and strong within yourself. The Spirit of the Lord will be with you and keep you save.

Hugs & Prayers Maggie
Helpful - 0
429949 tn?1224691579
Just checking in with you, and letting you know that I am still thinking about you and praying for you!  How much longer do you have to stay inpatient there?  I know all to well, how hard it is to wait for results like this.  I had to be checked for PML, because the Radiologist said that he thought I had this at the start. It is usually fatal within a year, but my neuro said I didn't have it, because I wasn't sick enough!!  He done the Polyomerace Chain Reaction test on my spinal fluid to make sure and this test took three weeks to come back.   I almost worried myself to death during those three weeks, but the results finally came back and they were negative, just like my neuro thought they would be.

I guess what I am saying is when you have all of these doctors, radiologist, ect..  speculating on what you have, and throwing in scary possibilities, it is hard to remain calm.  I understand how you are feeling right now and wish I could help you in some way!

All I can offer is the advise that just because they are including it in the differental dx, doesn't mean that is what you have!  Truth is they don't know what is going on right now and these test are just a part of weeding through the many possibilities.  

I am praying for you that God will give you comfort and peace of mind while you are waiting on these results!!

Big Hugs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

~Santana~
Helpful - 0
Avatar universal
I am so sorry you were treated this way by people who are suppose to be professionals.  It seems to be the norm these days.  My father had heart disease and eventually it effected his mind and I had to deal with many drs like you are describing.  It is very upsetting and equally frustrating.

You do sound like you are hanging in there though.  You be tough and demand to be treated fairly.  I don't know that it will work, but at least it should make you feel better....ha.....ha.....

I am one of the limbolanders that has pretty much given up on getting any dr to listen to me, I've tried for many years without success.  I will probably try again in the future, but right now I don't have the energy.

You take care of yourself and know you are in my thoughts and prayers.

Love & Hugs
doni
Helpful - 0
488264 tn?1226520307
For what it's worth Ada I have worked as a nurse, be it in the UK, and there are some real anal orifice holes in the profession, seems the world over.  I would report her.  I was an inpatient once and spent one night howling in agony with bladder spasms.  After about two hours a reluctant nurse came in and said she'd call the doctor, who prescribed morphine.  She then reappeared with an injection which she didn't identify to me or mark up in my chart, and was about to give it without even washing her hands or cleaning the area.  I pushed the syringe away and told her to get out.  Kicking up a fuss worked, I was assigned another competent nurse for the night who gave me identifiablel morphine, plus great care, and for the rest of the stay this other nurse was never allowed to dispense medicine without another being present, and checking with me.  Believe me, once qualified there are many nurses who don't give a toss for their patients and will watch you suffer, not keep accurate records, etc.  You HAVE to make the senior staff aware of this.  
I worry I have offended people on this forum somehow and for that I am sorry.  But I can only talk from what I have experienced.  There are some people in medicine who will not treat you as a person, and get away with it because as patients we are vulnerable and scared to complain as these people have so much power over us.  Even the compassionate staff get caught up in the system, they too are often afraid of confronting their superiors.  Ada if it is at all possible to have all these tests done as an outpatient, or to stay for example in a nearby hotel and just come in for tests, could that be a way forward?  They are not treating you well here and along with poor practice comes all sorts of other issues like poor hygeine etc.  Your hospital may be fine, but it is ALWAYS better not to be in hospital unless you have to be.  If they are doing 24 hour monitoring, fair enough.  If you are only being kept in for one test then another etc. rethink this.  Don't just discharge yourself though, talk this through with the sympathetic staff.  They may have a better solution such as being moved to another ward, or you being given a different nurse.  You are clearly very in need of medical help at the moment, and you are not getting it.  Sick as you are, you have to tell them what is happening.  
If anyone on this forum is really annoyed with me just please let me know and I can take a break from here.  I am very depressed right now, and kicking out in all directions.  I don't want to break all the goodwill and support I have had to date.  I'm just not right at the moment.  When I get my energy back will seek the help I need, am only out of bed at the moment because have beeh harrassed awake.
Sorry Ada, this is supposed to be about you.
I want you to be well, to get the answers you need, and not to be in some alien hospital environment crying and helpless.  Most of us as patients have experienced this, and it is the worst feeling in the world, but you have a voice, and more power to change how you are being treated than you think.  Give them hell.
Helpful - 0
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