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Feel like I am going to die

Feb 03, 2010 - 2 comments
Tags:

die

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pneumonia

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BOOP

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Kidney infection

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Severe pain

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depressed



I have had Pneumonia for five weeks and a serious kidney infection in my nephrostomy! Well I have back and forth to a PCP and Mercy Hospital. The PCP has been prescribing me dilaudid for two years. The PCP has now denied me my pain medication and I have Pneumonia and it may be BOOP. I have a lesion on my right lung I have had nebulizer treatments, all of the Mycin antibiotics,Tussinex, and Bensonatate Cough medication. My chest has been so tight that not only can I not breath I have felt like I am having a heart attack. My pressure has been through the roof and I have had tachycardia it feels like nobody is listening or paying attention to what is happening. I was told by an ER doctor because my lungs are hurting it is putting a strain on all my other organs to increase my dilaudid for pain I was taking five dilaudids a day with Gabapentin. I was instructed to get a Cat-Scan repeated in two weeks. Every time I would go back to my PCP with the discharge instructions and the medication that the ER was prescribing she would disagree with everything they prescribed and change everything.She did not believe me about the increase in taking more pain medication. In fact when I sent my mom to get my Cat-Scan referral and a new script for my diluadid she refused to give me a new pain script she said I should have 23 pills instead of 18 pills and all I wanted is to get the script because I knew by the time the weekend was over I would be down to three or four pain pills. She advised I needed a new pain management doctor because the one  I was seeing does not prescribe narcotics and because the PCP had been prescribing the pain meds for two years he felt that it should stay under my PCP. He sent a letter expressing this and for a year or two years everything was fine.  The PCP disclosed my information without my permission to my mother and got my mother very upset. The next day I wrote a letter to the office manager to try to get this resolved I went in and talked to the office manager and she had a copy of my letter. She looked in my folder and found all the records in my file from the PM. She advised she would go to the doctor that was in charge of the practice and get this resolved later on that day they called to say my script was ready. I thought this was over and resolved so I wanted to change my appointment to another doctor in the practice I had been seeing because I was no longer comfortable with the other dr speaking to my mother and basically thinking I was an addict of the pain medication when I was taking them according to what the ER dr had said and also what the bottle said on it 1 to 2 pills 2mgs every 4 to 6 hours I was taking five pills a day. When I changed my appointment I was in Mercy Hospital I had been admitted for five days. The PCP called while I was in the hospital and advised the other drs in the practice refused to see me. I called back and stated I needed follow up care when I get discharged for the pneumonia and I was instructed that I needed to see a pulmonologist as soon as possible. I told them it was not about the pain medication but I had a lesion on my lung and I needed a referral every doctor in the practice refused to see me. They advised the only way they would see me is if I would go to a PM doctor they suggested. Well I called that PM doctor they do not deal with the care of nephrostomy's. I tried to call back to convey that they would not listen. So while in the hospital I believe they conveyed to the hospital that I was there to get drugs and not for the Pneumonia. In spite of the fact I had two surgeries in one day the lesion came up on a Cat-Scan and I had a nasty cough they still discharged me because of this. The hospital doctor initially wanted me to take a TB and HIV test I felt I did not need it because I had been tested. But on the day of discharge I asked to have the test and a repeat Cat-Scan because it was due they said the HIV, TB were no longer needed. I believe the day of surgery they took my blood and tested me anyway without my permission and that is why those test were no longer needed. So now I have no PCP to go to get a referral I had to locate a new PCP they say that I still have Pneumonia they are putting me on the most powerful antibiotic that can be given by pill if it does not work they want me to go to St Agnes Hospital. My chest is still tight my kidney was hurting so bad I got light headed and also nausea and almost passed out. My pressure was up and when I cough up cold it is green and it has blood in it and dark spots. Now it is a waiting game for the new PCP to get my records from Mercy Hospital. While in the hospital the nurses tried to fight the doctors to keep me in the hospital they knew that I was truly sick and that I wasn't there to get drugs. They called Patient Advocate and Risk Management into my room they followed the doctors recommendation.At the time of discharge my pressure was through the roof they still discharged me. I am still not better it is worse at night I have a nebulizer and Pro Air and things are just getting worse. I have filed with the Maryland Health Commission against the hospital filed a complaint with HIPAA for the violation of my information being disclosed without my permission against the doctors written my Congressman and Senator and asked my friends to write and fax letters on my behalf I want to go to a congressional hearing and be heard about this pain management issue as well as the poor care and treatment that people receive when on strong pain medication and that not everyone is abusing prescription drugs and now that I have lung problems my pain is so much greater then it has ever been in my life. I have woke up choking and can not go back to sleep. My mom contacted a dr who specializes in Pneumonia but it is BOOP and how they find out if you have it is to take a piece of the lesion and test it. And if they find that you have it the treatment is different and if left untreated it is fatal. I feel like time is running out and nobody is seeing that this is getting more serious each day. But because I never get fevers they do not think it is major. I have had Staph Pseudomonis and Major infections and not ran a temp.So this is all very scary to me. I can not sleep at night my chest is so tight I just stay up most of the night and when the sun comes out I am so tired I sleep during the day.When I wake up it feels like I was in a car accident and the steering wheel hit my chest my husband gets my nebulizer and gets my panic attack medication to calm me down because of my pressure. I never even had pressure until all of this started. I go from hot to cold and I sweat a lot. The doctors in the hospital admitted that none of the medication that they gave me actually got rid of the Pneumonia so they were not sure what I had. But my mom forced them to do the initial Cat-Scan due to the second X-Ray did not show Pneumonia but yet I was coughing up so much cold that something was going on. When they did the Cat-Scan they said it showed Pneumonia and a lesion that needed to be monitored and they began to administer antibiotics by IV. Five weeks later I am worse my hearing is off I get headaches all the time. My voice goes in and out my tongue is swollen I get weak if I walk to much. I also get dizzy and my balance has been off. The worst part is this thing with my PCP really hurt because I trusted this doctor and she totally violated my trust. And she left me out there because if she had not done all of this I would have been seen by a lung doctor by now. As it stands I just feel like any day something really bad is going to happen because the Pneumonia is not gone the new PCP today confirmed that and he said I was also dehydrated which I do not understand because I have been drinking Gatorade by the buckets I was drinking a lot of water but I was told I needed to stop I could get water poisoning right now due to the pneumonia. I am truly at such a loss as to what to do. Everything I knew up to this point was always about  KD. I have always known what to do as far as KD is concerned but this whole Pneumonia coughing up blood and cold thing has totally thrown me and I have no clue how to fight or where to begin to unravel this mess. ON Facebook under Anna Johnson I have started a cause it is The National Pain Management Crisis/Kidney Disease if you are on there please join my cause I journal all that I have gone through from start to finish plus how I got kidney disease and just about Pain Management the Prescription drug hassle just everything. Many people are joining and writing letters for me to speak at a congressional hearing I am trying everything this can and does happen to a lot of people across the country. My brother died on 0101 he died because something was going on with his lung just like what is going on with me. He was misdiagnosed. They did a biopsy and thought he had cancer but it came back he did not. He was celebrating because he did not have cancer. But his chest got tight and they advised him to take pain medication to allow him some comfort and for him to go to sleep. He took the medication and he never woke up. The day he died the next day I was told I had Pneumonia and I had talked to him prior and what he was going through is what I am going through right now. I feel like something has to happen for me soon or else this is not going to end well. I have no clue what to do how to fight the powers that be that have left me out here coughing up blood and not being able to touch my kids because of germs. Not being able to drive or leave out the house because my immune system is not good. My eyes are dark underneath. One night the pain in my kidney was so severe I almost passed out. Between that and my chest. I have no idea how long I can keep any of this up someone needs to give me answers. My husband watches me while I sleep he is so afraid for me. My family are so afraid and I am so afraid. I have two small children and I do not want to die over something that somewhere somebody has the answer. I have told the new doctor that because of the stigma attached to dilaudid I am willing to get off of it and get on something else that I do not have to ever worry about being accused of abusing medication. I get 50 pills and they last me a month. the pills are 2mgs and the instructions say I can take it every four hours before I got the kidney infection and pneumonia I was taking three a day I feel like five is still not a lot. In the hospital they were giving me IV 2mgs every four hours. I just do not understand how anyone could say I was abusing this drug or any drug for that matter. I thought that the PCP I was seeing knew me much better then that. between that and the fact that I have had 13 years at the same hospital and how they treated me like this was a joke I would not treat my dog how they treated me. I have never been so hurt in all my days and never ever been this mistreated and I have never felt this sick in all my life. I  thought I knew sick until this happened. This is a whole other level of illness. I was so sick I was told I could not attend my brothers funeral it was devastating to me. I took so many blows since 2010 started that I thing my emotions are raw but almost numb or stunned by the lack of compassion that I have been given. And it is not just happening to me it is happening everywhere!!

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by Tuckamore, Feb 03, 2010
God Bless and Keep You through this horrible ordeal. I am going to respond to your PM. Thank you for directing me here. so I have more information, sad, very sad information.  I'll be chatting with you soon. We are all here for you.

HUGE L-O-N-G Gentle (((HUGS)))
Peace & Love,
Tuck.

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by moosie_whatever, Feb 04, 2011
Hi,
I also have BOOP. Diagnosis just confirmed a few days ago.

Started with a chest cold around Thanksgiving, which was pneumonia within a week. Antibiotics improved that, but the cough never went away. Coughing my brains out. Pulmonologist diagnosed BOOP via XRay, then CT scan to rule out cancer, then confirmed with bronchoscopy / biopsy.

Steroids are by far the lung doc's favorite treatment for BOOP. But I cannot take Prednisone due to neurological complications (I have chronic lyme disease).  Instead, he started me on Biaxin (generic: clarithromycin), a macrolide antibiotic. Apparently the macrolide's anti-imflammatory properties will help. Like with Prednisone, the plan is to be on abx for at least six months, and if I stop too soon, I'll relapse. The doc says I should see rapid improvement in the coughing and shortness of breath. I've only been on the abx for a couple days, and no improvement yet.

I've been through a LOT of doctors since the lyme disease began nearly four years ago. In my experience, it really pays to keep trying new doctors until you have one that works well with you.

Regarding narcotic pain meds, here in Connecticut most docs are very wary of prescribing them, except for very short periods. I was referred to a pain specialist, which worked well because that doc didn't treat me like a drug-seeker, and I didn't alienate, or make uneasy, my other docs.

Good luck with your treatment and eventual recovery. Seems like it takes a while. Hang in there.

-joe

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