Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Irene went to ER last night and this morning was waiting for the surgeon. No word on whether or not they were going to try again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Bruce.........well............this news satisfies curiosity anyway. Poor Irene. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Irene Irene went to ER last night and this morning was waiting for the surgeon. No word on whether or not they were going to try again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Irene, We have almost same date. I was Feb/2007. We know exactly when I did as far as month since I got it after hospital stay. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Questions Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Mayleen, I was rushed to ER with difficult breathing and high blood pressure 147/102. They did an emergency CT Scan because they thought I was having a blood clot, instead it turned out to be PF. They kept on telling me you cannot travel back home or get into a plane...I kept on asking why, with no answer...I told them well then I'm travelling. They gave me the discharge papers and CT Scan reports and that's how I learned I had PF. When I came back home, my dr's already had a referral for me with a lung dr. The lung dr, I was given in March/07, he was adding a lot of stress on me and not doing the tests properly etc... was ordering wrong tests, and sometimes he would forget that he didn't order tests, but in his mind he though he did and I would get in trouble for not having them done. One day, I told him straight out, if you would have ordered it, I would have done it. Since you didn't order it I didn't do it. The last time I saw him, he couldn't remember why I was seeing him. Now, I have a lung dr, who listens to any questions I might have, he will do the necessary follow-up tests in Oct/08 and will follow me closely. He even came a few times at my hospital room to check-up on me. Irene ---- Original Message ---- To: Breathe-Support Sent: Mon, 26 May 2008 12:17 pm Subject: Re: Irene Irene, We have almost same date. I was Feb/2007. We know exactly when I did as far as month since I got it after hospital stay. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Questions Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Irene, Wow, isn't it unbelievable how sometimes you end up with someone you wonder how they became a Doc. I was hospitalized GI bleed, they said did not know from what. I have just been diagnosed with MCS within the last 3 months. I advised my physician. I did not know I should not take celebrex. My physician apparently either. I gave them a protocol to follow, it is very specific for me including isolation room. They did most none of it. Everyday I had a problem with something. They did not post my chart latex allergy even. Everyday someone came in with latex, perfume, trying to clean, everyday I had to watch for myself. I did not know alt about MCS yet as it is a lot. But they had been given a protocol and my Doc to call for any questions. My physician ignored it all, I kept requesting the surgeon to come he never did. I was given a lot of wrong stuff. A lot. One unsuccessful GI only did upper came back to room with a fat lip. Attempt 2 Surgeon still no where, never came to any of my requests. They kept canceling me over and over, after six days they sent me for GI (lower for 2 time) When I got their no sheets, (supposed to be hypo) , no latex warning, and then had breathing problems told nurse she said she did not notice anything. Then surgeon walked in, it was him bathed in perfume when it was all over my chart, bed, hospital door, they refused me oxygen then my inhaler, I asked to be released. Thy were treating me for breathing problems while I was there. Blow this plastic, the other, steroids, none of which should have been used on me. When I left I got ILD. There is only 2 ways I got this. They damaged me or suppressed my already damaged immune system and got it when I got back to moldy house. All of things I still did not know then. My physician would not speak to my Doc. at all. The physician when questioned how I got ILD never saw me again. He sent me a letter after I left saying no longer seeing me. That I did not follow his instructions. B After that drama ongoing. After hospital no one wanted to do lower GI, pulmo would not do biopsy after he had me decide if he could do it. It has been difficult getting help, they are too scared to touch me now. My physician had been warned about doing some things, he did anyway. Very little cooperation at hospital. I got a room by myself however what I needed was an isolation room, it has it's own air return so I do not breathe others stuff and hypoallergenic room. It is a clean room in a hospital. Hospitals not my friend . God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Questions Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11.. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Irene, MCS is chemical Intolerance. A slow poisoning of your organs. Your immune system becomes so damaged it stops eliminating toxins. There is about 15 % of the population that has it and the numbers are growing. About 6% is severe, I am in the 6%. Your body losses it's ability to eliminate toxins which are in just about everything. The Hospitals are not prepared for any patient with this condition. I know of 1 in NM has 2 rooms. Reason why I now have letters explaining my condition which I introduce to the hospitals in advance to advise them of my condition and for them to put me in contact with someone at their facility who would work with me on coordinating care. What happened to me was the doctors do not know of it, I was just diagnosed so I was short on education catching up is at least 1 year. The information for this is extensive more than most, and not diminishing any one medical condition by any means, there is no aspect of your life it does not affect.. I had just been diagnosed. I did not know of all the blocks in the middle of the road. I had a guideline and it was not enough for me, because of their refusal to follow things, it was hard, keep reading and you will see. I was not at the level of knowledge yet, been when it happened it was just too recent after diagnosis. I react to .0001% of something. It could be anything. Medication, the air (full of VOC's) , cleaners, sheets, syringes, plastic, soap, shampoo, cream, lotion , food, additives, preservatives, paint, mold, fumes of any kind, perfume, hair spray, gel, toothpaste, clothing, copiers, print material, the list goes on. The hospitals are full of all of these. They are not going to remove them for any of us. Isolation rooms are the best because they are hypoallergenic, usually with silk sheets, (I do not tolerate polyester) (or cotton grown with or treated with chemicals) it has it own air return so I do not share the air with others. In addition I can clean that space more with one of my special air filtering machines, none of which I had at the time. The reason why I did not go back to the pulmonologist was that he changed his mind after he was going to do a biopsy, 2. he wanted me to go blow threw plastic which I cannot do after knowing what I had. The medical equipment is just not here for us. A hospital must order some equipment in advance, reason for the letter. It is ordered from a special place in a package. And I must have an emergency kit available myself (which I also did not have since just being diagnosed and still don't have) however my Physician had something he had my Doctor who he never spoke to. A person who could have guided him , for what to give me, what not to give me. He never spoke to him. I tried so many times to talk to the Surgeon he would not come, hence the perfume in the OR. Plus I changed his disclosure form he would not sign it afterward. The hospital had no food for me, no needles, no glass bottles, or glasses, not a shower filter , they did not even have my regular medicine. I had to bring it from home. My fiancee brought me food when I was allowed to eat. I can only eat organic, so I do not react to dyes, preservatives, chemicals, which are in all foods, like MSG, Phosphates, nitrates, sodium, the hospital would try to give me jello which has yellow # , red # , artificial colorants, things like that. I kept a great deal of things away from me while conscious, while I could make the nurse bring it or get it out of my room in most cases. My respiratory nurse (they were treating my lungs I did not have ILD yet, they were clear) came with perfume from detergent, I sent her away, as I did the surgeon after I was in OR. I went home. Forget this. It is a job for me to be there amongst all these people who would just not listen, whom I also could not control, how can I tell you to come to the hospital scentless, wth no chemicals, or VOC'S . I did not let the cleaners in the room, however they are cleaning the room next door. Those are VOC's in my air space and all I need is .0001% to react or store in my organs because that is what my body does. It stores what it eats, breathes and is applied to my skin or absorbed threw it that is a VOC or chemical, or that sort of thing. What I need in a hospital is a "Clean Room", that is what it is called. Then a lot of listening and consulting. A lot of understanding because some of it we guess. With caution a lot of caution. I hope this helps. The only Hospital I know that has a protocol for us is Mercy Hospital in Iowa. Which they share with all of us. It involves entire hospital from, pharmacy, food, cleaning, supplies, environmental and so on. I know how much human contact means in a hospital setting however I cannot. You are absolutely right, we should be vocal and not allow ourselves to be abused or mistreated. I really jump on them now. All I needed was that one time in the hospital to be even bolder. I was as vocal as I could be actually there. Sometimes they lie to you however I can notice it immediately as soon as my body says OH NO !!!! XXXOOOXXXX Thank you for your support it means a lot to me and you kind words about your experiences all is really appreciated !!!!!!!!! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Mayleen Mayleen, what is MCS? A few suggestions and my own personal experience. In my recent admission to hospital, I've met a few patientsand they had invited me to their room several times, so I won't be in my room all by myself with the tv on lol!So one day I took them up on their offer and I visited them. One of them let me sit on their bed because I was about to fall on the floor. I had a pole with 3 pumping machines and about 4 IV lines running through it. We chatted for a long time and we discussed our medical problems and we exchanged ideas on how to deal with an NG tube in the nose for the next 2 weeks, the fluids that they were suctioning from our stomach's... .chatted about life in general, we got tolaugh and use our sense of humours.What I'm trying to say, as I was telling my story and how I ended up in the hospital, one of the patient told me "I will never complain again in my life, Irene you've been worse than me and I'm here complaining for nothing.. I told him,you have every right to complain about and vent.....Honestly Mayleen, I cannot imagine what you're going through...I Hope soon you'll find the right dr's and receive the best medical attention you deserve. One thing I also learned in my experience, is research about my illnesses and learn everything possible. I have found what works and doesn't work in medications, etc...In my experience, I have learned to speak up my mind and if something is going wrong with my treatment, I will definitely say something. I carry a medic alert bracelet, a printed copy of all my allergies, medications, illnessesand surgeries.I can tell you also, that I have gotten in a lot arguments with dr's over the years for the poor treatment etc, I wasreceiving. Mayleen you need to stand up and tell the dr's that you're in need of serious medical attention. You haveto keep fighting for yourself and for your health. Over the years I've learned to talk medical terminology or in there medical language with my dr's....When and if I present myself to emergency room they make a copy of the list and they follow protocol until I'm discharged.This year, I contacted Patient's Advocate department 3 times about the treatment (within 3 weeks apart) I received in ER...can you do the same for the hospital you received the treatment.I'm only asking because their might be other patients in the same situation as you, that are getting the same rude, attitudetreatment etc...from the medical professionals.Over the years, I have changed so many dr's because they weren't willing to help at all. Right now my dr's are fine. Are there any foundations that deal with the illnesses you have? Can you change hospitals, to a hospital that specialize with what you have?Can you find specialists in your area, or if you can travel to another hospital in your area...that have dr's that specialize in MCSwrite them a letter about your health, explaining what you're going through on a daily basis, meds, treatments you have tried, andhow it's affecting you....A few years ago, I did write a letter to a dr....and I can tell you his still my dr! Mayleen once you find the right dr's, you'll see it will make a big difference.A few years ago, over here in the newspaper... .there was a story in need of a family drA patient had a hard time getting an appointment or they were not acceptingnew patients.... she decided to run an add in the newspaper about her needing help and medical attention, that soonafter the ad was run...there were so many calls she received from the local dr's willing to help.HugsIrene Meet the new AOL.ca. 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