Sarah Emery footiemak@aol.com

My husband is doing quite well considering the damage done at that (CMMC) hospital. Through Megaheart.com, a low sodium diet, a new cardiologist associated with Southern Maine Medical, Mark can climb stairs, has been snorkeling in the Caribbean and is not on oxygen at all. I was told he could never climb stairs and he can do two to three flights. It does take a bit out of him. I have made it clear in Advance Directive where to take me in the event I have to have the same operation if possible. Considering the bad care Mark got at CMMC things have turned out better than we hoped. So fight for your loved ones. If I had known better I would have got an attorney and forced the transfer to Mass General. Surgeons said Mark's bypass operation went well. They put Mark on vent because of agitation, etc. They did not continue to give him his Xanax but according to a consulting psychiatrist called in by me after much begging and pleading with surgeons, Mark was mega dosed with Ativan which had a paradoxical effect. Mark had a 45% ejection fraction before bypass and now has 15% This is a new cardio unit where the bypass was done and had no psychiatrist on staff. Could this agitation have damaged the graft? I believe if that doctor had not been called in, Mark would be dead. He had him off the vent in 2 days after changing medications. He was walking around the CCU fine with no oxygen. Then he was sent to rehab unit where there was no rehab, but more inappropriate meds given at the wrong time of day and pulmonary edema attributed to panic attacks. He was always in a wheelchair or sleeping. I tried to see cardio surgeons and they never responded to my messages and left him to the rehab unit doctor who released him with no oxygen to climb two flights of stairs. That night he was in another ER with pulmonary edema and now has congestive heart failure. He was sent back to the bypass hospital and I arranged for a transfer to Mass General Hospital, which the cardiologist blocked. He wouldn't arrange a doctor to doctor transfer. My insurance had okayed this transfer! Have there been any studies done on sudden withdrawal and over-medication of anti-anxiety drugs regarding damage to graft and heart? Where could I get any info on this?

posted 7/18/2010

Jay jananney@yahoo.com

My mother developed ARDS and was on a vent for nearly 2 months. During this time she developed severe complications including heart rhythm issues, several severe infections, blood clots, and ultimately a serious stroke. However, she is now RAPIDLY recovering. How the body can take this punishment and come back this quickly, I will never understand.

posted 3/28/2010

Arlene Susman kn_arlenesusman@webtv.net

My son had double pneumonia last December, which developed into ARDS. He spent 3 weeks in the ICU at the hospital with 12 days on a respirator. He is also a pancreatic cancer survivor of almost 5 years. Both times he was given a death sentence, but somehow has survived both illnesses so far. He is now suffering from lack of short term memory.

posted 12/5/2009

Peta p.coulston@y7mail.com

My 9 year-old daughter got ARDS from swine flu.

posted 10/22/2009

Jennifer Herbert jenh511@hotmail.com

My Mom developed ARDS in May 2009. She originally went into the hospital with shortness of breath and within 12 hours, she was completely sedated and on 100% oxygen on a ventilator. The doctors told us that she probably wouldn't make it through the night. They wanted to try this new treatment called the RotoProne, which is a special bed that allows patients to lay in the prone position and clear up their lungs. My Mom was in the RotoProne machine for 12 days, which is longer than anyone else who has been in it at her hospital. We had to have a trach and feeding tube put in to keep my Mom alive but it was all worth it when she came off the sedation and started to get better. She stayed in intensive care for only a few more days before she was transported to a rehabilitation center. She was at the rehab center for about 10 days and was sent home. The doctors say my Mom is a true miracle and still to this day don't know how she developed ARDS, but we are all so thankful that she was able to survive it. Having a family member with ARDS can be one of the most difficult things to handle, but it can be survived. I hope that this helps those families that are going through tough times with ARDS.

posted 9/5/2009

Debbie Burgin twogreymom@yahoo.com

My mother suffered a stroke and aneurysm in July of 2006. When the doctor inserted the central line, he punctured her lung. She was in ICU for 4 months and on the hospital floor for a bit over 1 month. We were told she had ARDS. The hole in her lung was difficult to heal due to the amount of air needed to keep her lung inflated. She had a tracheotomy and the doctors told us her chance of survival was slight at most. Pneumonia set in and she was immobile for almost a year. Family and friends prayed for her. My dad prayed for her lungs to be like new. She has been in and out of the hospital several times with pneumonia and has coded 3 times. Her last hospital visit was March of this year for 1 1/2 weeks. Today, she is home, talking, beginning to walk using her walker and her oxygen is set on 2. Her lungs seem to be stronger, but her resistance to infections is low. I have to wonder if her lung had not been punctured if she would have struggled so long. But, she is still with us and still fighting to overcome her many obstacles after almost 2 years. Her experience is much more than I've put here, but the doctors all say she is a miracle.

posted 4/18/2008

Janet Collins rcollins010@woh.rr.com

My husband developed ARDS on the fourth day after hip surgery. He was scheduled to go home the next morning. He was suddenly unable to breathe and rang for nurse. He doesn't remember any more until wakened four days later in ICU. We were not given much hope the first night, he had stopped breathing and his eyes had rolled back. He was lucky it happened while he was still at the hospital. The doctor said we would not have gotten him back in time to save him. We still don't have any answers as to why this happened. He is making a good recovery and is now in rehab at the hospital where he has been for the last 3 weeks. I think this is going to be a long recovery.

posted 3/22/2008

Eileen Hoffman emh55@aol.com

My daughter was diagnosed with ARDS in July of 2005. She has been in and out of hospitals since then. Though she has improved, I am wondering if we has reached the end of her recovery. Krystle had CP, seizures and mild mental retardation all prior to ARDS. I would really love to connect with others who have been caring for someone recovering. I have nurse helping, but no one really knows how much Krys will get back and she is very depressed because of all the loss of strength. She is now in a wheelchair, on oxygen and tube fed, none of which she needed before. Please feel free to contact me with stories, suggestions, books or even doctors that you have found helpful. I am losing hope for her recovery!

posted 3/13/2008

Julie juliebutt1@yahoo.com

I'm writing this for my daughter, in hope that maybe she will take interest, and to know she is not alone. She has been so traumatized by this whole ordeal. She has had really bad asthma, and she was 7 months pregnant when she had an attack. They had to intubate her, and she was in a coma for 19 days when her left lung collapsed. They had to take the baby via c-section. She weighed 3 1/2 pounds and is beautiful and so smart. Thank you Jesus. But Rachel on the other hand is still haunted by her dreams. She is tired most of the time. and is afraid of dying, and she has panic attacks. It has been one year and two months and she still hasn't had any counseling or even anybody to talk to about any of this. She is afraid to talk to me; I think she thinks it would scare me or something. There is so much more to our story, I think I have to write a book. If there are any other women that were pregnant and went through the same thing, please write us back. Thank you, Julie
 

posted 1/23/2008

Bunny Prather flughoffdia@hotmail.com

Bill was hospitalized in September 2006 for knee replacement surgery. Shortly after the surgery, he developed pneumonia. He was transferred to critical care, intubated, cored, had bleeding from the lungs and went into system failure. After fifteen days, he was transferred to recovery and placed on 10 liters of oxygen. After 2 months, he was transferred to rehabilitation and lowered to 3-5 liters of oxygen per day. He was released from rehabilitation therapy on December 21, 2006 and went home with a diagnosis of COPD. He was diagnosed with ARDS three months later. He began therapy and was doing well until August 31st,  when he developed a fast moving pneumonia. He cored and was again intubated and spent 2 weeks in a medical coma. After being in intensive care for 2 months, he returned to a rehabilitation facility. He is on 3 liters of oxygen at rest and 10 liters of oxygen when standing and walking. He has always loved to sing and started singing while in rehabilitation. His lungs have improved slightly and he is now able to get around a little better. He will always be on medication and oxygen. If anyone out there has any suggestions about improving his situation, I would like to hear from you. He has "recovered" from death twice and I am grateful to all the doctors and therapists who have helped this far. But, I feel there is more to be done to help the medical profession to diagnose this illness faster and more comprehensively. As his spouse, I have watched everything that was medically done to save Bill. I spent days and nights at his side and have learned as much as I can about this illness, mostly from computer studies and computer research. The only "experts" on this illness seem to be the persons who have survived and have had to learn to live with the illness. I need all the help and suggestions I can get from survivors to help my spouse. Thank you.
 

posted 1/21/2008

Betsy betsmac@charter.net

My 26 year-old daughter Ashley is recovering from ARDS. I would like suggestions for helping her cope. Please send me any suggestions for hobbies or activities while bed bound, or hints for strengthening and exercises to lift her spirits and motivate healing. Thanks.
 

posted 7/21/2007

Charlotte Straub charlottestraub@comcast.net

My nineteen year-old daughter was admitted into the hospital with aspiration induced pneumonia that resulted in ARDS on January 23, 2007. She was in the ICU and on a ventilator for two months before being transferred to a rehabilitation hospital for an additional month of vent weaning and physical therapy. Our time in the ICU at Memorial Hospital was extremely rocky for quite a long time. She was too frail to transfer to Stanford Medical Center when we were at wits end. I have journaled the whole experience and I am available to share with anyone who has/is also living this experience. My daughter is doing well. She has been home with us for three weeks now. She has oxygen at home for exercising and sleep, but we are confident that this will be a temporary measure, perhaps three months while the lungs are reconditioning. I know that everyone's process and experience (both as loved ones and as survivors) is different but if sharing mine will ease just one other persons experience, please, let us talk. If you are not ready to talk, may I please recommend that you be strong as your loved ones advocate, don't be afraid to ask questions, and have faith. Faith . . . being sure of what you hope for and certain of what you do not see.
 

posted 5/9/2007

Sue srsd123@bellsouth.net

I have had contact with a mother whose son is an ARDS survivor and is a college student. We are trying to located anyone in their 20`s or anyone in college that has had ARDS. I am a 49 year-old female that is an ARDS survivor. I had ARDS three years ago. I would like to find someone close to this young man's age or someone in college that he can get in contact with to help him readjust to life. His mother is a principal at a Christian school in Tennessee.
 

posted 5/8/2007

Gloria Angel7167@aol.com

On January 31st, my 14 year-old son Justin suffered a seizure at home and three more in the hospital. While he was getting a CT scan he aspirated and two days later was diagnosed with severe ARDS. Both lungs were completely whited out and as the doctors put it "like cement". After a week in one hospital, the doctors told us he may not survive, and shipped him to Boston Children's for possible ECMO. He never ended up needing ECMO, but was put on a Hi-Fi vent for two weeks, which seemed to do the trick. We returned to Worcester on March 6th, and he was extubated on March 8th. He is doing well respiratory wise; however, because of the length of time and amount of medications he was on, he has yet to fully awaken. His cough is still weak, and he gets very wheezy. But he is doing well. I am very hopeful that he will be a survivor. He has a long way to go, but he is a hero, and a very brave little boy, as is his 10 year-old brother Chris.
 

posted 3/11/2007

John Schmidt johnnyapple@mac.com

My Mom developed ARDS on March 4, 2006 following knee replacement surgery, which may have caused sepsis and resulted in ARDS. She was on a ventilator for 63 days and spent most of that time in a drug induced coma. We had a lot of close calls during those two months. She went home on Memorial Day, and today you'd have a hard time believing she was ever sick. The St. Cloud hospital staff was phenomenal!!! God and family, and of course a strong willed woman, got us here today. Click on the link below if you would like to read a nice story about her in the local paper.

"Beating the Breathing Odds"

Please contact me if you need a friend to talk to about your ARDS situation.
 

posted 2/8/2007

Pat mlpj@iowatelecom.net

My husband had an acute case of ARDS six years ago last August. From the information I have, I believe many survivors die within the first couple of years due to other lungs problems caused because of the ARDS. We feel very fortunate that he is going on seven years of survival. He usually has pneumonia a couple times a year. Last year he didn't get it once. Now he is in the hospital with low oxygen saturation, so he is on oxygen. The doctor says he will need to be on oxygen all of the time to keep his oxygen level up. I am wondering if this is also a result of the ARDS. He does have a lot of scarring in his lungs. He did survive but his life is not the same. Due to the lack of oxygen, he has some brain damage. He was on a respirator for six weeks and continued to have his trach in for another month with oxygen. I wonder if there are any other ARDS survivors who have had a long life after ARDS.
 

posted 1/28/2007

Shandra shammonds62@yahoo.com

Four years ago, my husband had a massive heart attack. He had 3 bypasses. two front arteries - one 100% blocked, one 99%, one on back of heart 50% blocked. Five hours after open heart surgery, my husband developed ARDS. He didn't open his eyes until 2 weeks later. The doctors said that most of the time ARDS shows up days after surgery, and they had never seen a case 5 hours after surgery. He did recover some, but the damage is done. He is not the same person. He finds it hard to breathe, and by noon he has to lay down to recuperate. He never feels good. The doctors say that he only has 40% lung function from the result of ARDS.
 

posted 12/28/2006

Theresa Hufford takfroggy@atlanticbb.net

My 4 year-old daughter was admitted to our city hospital on Christmas Eve 2005 w/ sats of 85% and her CXR was almost white on both sides. She was admitted, but then transferred to Children's in Pittsburgh on Christmas day. She was put on a ventilator for 12 days with high settings, 3 antibiotics,2 diuretics, and 2doses of lung surfactant (a drug usually given to premature infants to help the flexibility of their lungs), & numerous other meds to help her fight. The doctors told us to expect to be there at least 3 weeks and that we got her there just in time. Her pco2 was 290 and near respiratory failure. She only spent a total of 18 days in the hosp the first time, but has since been back in the hospital 3 times since then. One time requiring intubation for 2.5 days and cpap for 5 days. She was a perfectly healthy child up to this point, but now must remain on antibiotics & low dose steroids to prevent pneumonia. At one point she required 1-3 lpm of o2 at night to sleep & during the day or she would de-sat. She receives supplements ,neb tx, & chest PT twice a day. She now has bronchiectasis to both sides of her lungs and scarring making it hard for her to clear her own airways. It's really hard for us to deal with since we have to worry about every virus that comes around.
 

posted 12/21/2006

Frank Gonzales rfmax@bacavalley.com

My name is Frank Gonzales, and my wife Rita was diagnosed with ARDS on November 18, 2006 after a right leg amputation. After her surgery, she was rushed to the ICU unit and she has been there for the past two weeks. The doctors told me that she had a 50% chance of survival. She had tubes, blood transfusions and much more. While she was still on a ventilator, she couldn't talk or move. I think she didn't know where she was or what was going on. I have a lot of faith that she is going to live a full life.
 

posted 12/1/2006

Patsy leasman@sbcglobal.net

In 2004, my daughter Jody had ARDS, and now has had many problems as well as with her heart. But can we say these are all from ARDS??????
 

posted 11/27/2006

Wendy wendyhjames@yahoo.com

On June 9, 2006 my Dad was taken to the hospital with severe stomach pain. He had a perforated ulcer and had to have emergency surgery. He made it through the surgery and was immediately placed on a ventilator and was sedated and given a paralytic drug (he was kept paralyzed for two weeks). Within a couple of days, we were told he had ARDS due to severe sepsis. He had to be on a ventilator for over 4 weeks and also had to have dialysis for kidney failure within about 10 days of his hospitalization. He spent 7 weeks in ICU and another 4 weeks in a regular room. He went home for 10 days on August 28th and then developed another infection and had to be hospitalized for another 2 weeks (he doesn't have a spleen due to an injury
12 years ago and is very susceptible to infection to his body being so weakened). He is home now and is recovering well. The doctor is still concerned about his stomach healing properly and the only other major side effect is he is suffering from severe short term memory loss. But my Dad is lucky to be alive and to have survived ARDS. There were several times when he was very close to death, including a day when they decided to put him on an oscillator. But this was a day when they had him on 100% O2 and had to do something. He hovered at 70 to 80% for a lot of days. It has been a long process and sometimes I wonder how we made it through it, but we are just thankful that he had the will to live and God protected him. I am still worried about his body being so weak and him being asplenic but hopefully with time he will grow stronger.
 

posted 9/23/2006

Jennifer jmince@dpvco.com

My Dad had knee replacement surgery on June 12. Two days later, he had blood clots in his lungs. Before we knew it, he was diagnosed with ARDS. It wasn't long before he was placed on the ventilator. After many life threatening events, he was finally able to come off the ventilator and is now recovering in an acute care facility. He still has a long way to go with rehab; however, we are grateful that he is still with us today. God still has big plans for my Dad.
 

posted 8/24/2006

Connie tcbnca@yahoo.com

My sister was just diagnosed with ARDS. I am trying to understand how she is feeling, as well as deal with my own emotions while helping her and her two children, a grandfather newly diagnosed with lung cancer and dealing with my own thyroid cancer. Any suggestions would be helpful.
 

posted 8/20/2006

Melinda Taylor melmarknic@yahoo.com

My daughter, Nicole, then age 4, was admitted on a Friday with respiratory distress in May 2003. She was in our local children's hospital on a regular floor, until Monday early morning when she was transferred to the PICU. We were told she had pneumonia but then Wednesday morning came and during rounds, the PICU doctor said this is not pneumonia, Nicole has ARDS. Not knowing what this was the writing was on the wall and I just knew Nicole was not going to live. Someone from the floors whom came regularly to see Nicole, a true way back, veteran of doctor's, made the sign of the cross and put his hand on my shoulder and said "all we can do is pray". I cried all day knowing she was not coming home this time. She had already had a rough road for the 4 year's with her health and a rare syndrome. But behold!!!! Many, many prayer's being said all over, Thursday morning there was a little sign of improvement, but she was not out of the woods. Friday morning was very positive, and she was turning for the better but still a very sick little girl. Nicole was in the hospital for approximately 2 1/2 months, and most of that time was spent on the vent and sedated. She was sent home for 2 nights where she could hardly breathe, she went back to the ER, and admitted back She was on the vent, and a trach was placed and she also developed pulmonary hypertension. I believe it was Nicole's left lung that saved her life as the left lung had just a little capacity left for oxygen to get through before the turning point began on Thursday morning. It was much later when various professionals commented "here's the little girl who almost did not make it" and "it was said she was not going to survive". So a real whirlwind of ups and downs, baby steps forward and huge steps backwards, but she is here. Many doctors, nurses, professionals and us as families know Nicole is truly a miracle over and over again!!!!! WE praise GOD, and the awesome caring doctors and nurses at our children's hospital, where we nearly lived there as a home away from home for nearly 3 years.
 

posted 8/7/2006

Jackie dsprint@meltel.net

I can't believe it to this day when I look at my mom, she is here. Her chances of survival on March 4th, 2006 were slim. Today, with much doubt hanging overhead for 4 months, she is practically back to total normal. She even ditched the portable oxygen. She has been called a miracle by her doctors, family and peers. No one thought she would pull through and every be "normal" again. She did and she is. We truly believe that God had a huge part in her recovery, especially the speed of it. She is back to work just like she was never gone, back to doing just about everything she did before. She had a knee replacement before developing ARDS, and thankfully walks better than before. Just know there is hope.
 

posted 7/6/2006

Tammy Adams eadams66@netzeo.com

I would like to offer encouragement and comfort to all those who are either in an ARDS crisis or have lost a loved one to ARDS. My mother had triple bypass surgery in 1998. About 4 days after her surgery she could not breathe and was placed on a ventilator. We were told she had ARDS. She was ventilated for 3 weeks and I started my research into ARDS. I searched for all the info I could get my hands on. In July 2001 she was hospitalized for pneumonia and I was on guard as I knew that pneumonia could lead to ARDS.
She went downhill very quickly was put on a ventilator. After being on a ventilator for 3 weeks she was given a tracheotomy and the doctor asked us which hospital we would like her sent to. During the first 3 weeks we could still communicate with her and they were still able to turn down the sedation. We had her airlifted to Johns Hopkins where she stayed on a ventilator for a total of 4 months. She was very sick and completely sedated at that time. She was able to get well and start rehab but then suffered a stroke. She was completely paralyzed on her left side. She left Johns Hopkins on the day before Thanksgiving in 2001 in a wheelchair unable to walk and care for herself. My mother went to rehab daily and faithfully for 3 years and she is now able to walk and she lives on her own. She has not been without a few setbacks including another minor heart attack and COPD. Every now and then she is hospitalized for her breathing problems. My mother smoked 2 packs a day for 30 years. She no longer smokes but will have health problems for the rest of her life because of it. I believe that my mother is a true miracle. I remember asking God to do his will with my mother as she already had ARDS once and was not likely to survive it the second time. As I read your posts, I ask why do some survive and others don't? It can happen; people do survive this, some even twice. It takes a toll on those of us who feel helpless or don't have the answers from the medical staff we need. I remember asking for the doctors 2 and 3 times during a shift. I wasn't going to drive the 2 hours home from Baltimore without the answers I needed. Many of us have never even heard of ARDS until our loved one has it. I pray that all of you will find the answers and hope that you need. This website is wonderful and I have spent a lot of time here in the past 8 years.. But as I read the posts I can say "Yes, it was a roller coaster and yes, I felt that way too." Please contact me if I can be of any further help.
 

posted 7/4/2006

Stephanie sjhnurse1@yahoo.com

My mom has a rare form of angiosarcoma in her left chest wall and had surgery for the second time in 2 years on Wednesday March 1, 2006 at MD Anderson in Houston, TX. The surgery went well, but by Friday she was having trouble breathing. By Saturday, she was placed in the ICU and by Tuesday she had thrown blood clots, some of which went to her lungs causing a pulmonary embolism and she coded. She was placed on a ventilator for a couple of days. The doctors took her off the vent and she developed a hematoma in her back. She had to be sedated again to have the hematoma removed and had trouble coming off the vent again. Basically she was on and off the vent several times and then the doctors finally diagnosed her with having ARDS. She developed MRSA, C-Diff, ended up with a trach and was in the ICU in Houston for 1 1/2 months and then was medflighted back to Ohio where she lives and was in the ICU there for another 2 months. At one point her blood pressure was all over the board and the doctors thought a couple of times she wouldn't make it through the night. They said if she did she only had about a 10%-25% chance of making it. But because of the care of the doctors, nurses and especially God she made it through. She was finally released from the hospital on June 23, 2006 and is home recovering. She had developed ICU neuropathy (femoral neuropathy) in her left leg, is weak and has to walk with a walker. My family and I have noticed a slight change in her cognition and she is still on oxygen and we are dealing with C-Diff again. This has definitely been a rollercoaster ride for all of us over the past 4 months. I'm a nurse, as is my mom, so everyone looked to me for answers and explanations of what was going on. I didn't always have an answer and I couldn't ask her to explain. I got to the point where I didn't want to talk to anyone because I didn't want to answer any questions. There were times too when I knew things were not going well and I didn't want to alarm my family but it was hard to stay composed. Its definitely not over for her...she still has a long road ahead of her. The best thing that has come out of all this is the doctors in Houston said there is absolutely no trace of her cancer.
 

posted 6/26/2006

Diana Rodriguez sardonic14@yahoo.com

Scott is my fianc�e and an ARDS survivor. He is currently sick with pneumonia and we were told the chances for recurrence are high.
 

posted 6/1/2006

Shirley Weeks ssweeks6@sbcglobal.net

My daughter Denise was in the ICU for the month of November, 2004 with ARDS, then back in the hospital in February and March for 3 more weeks. She had done really well until last week; now she was put back in the ICU on April 9, 2006. She has survived again through the will of God. The trauma to her mind and body are becoming very hard on her because of the pure oxygen for so many days. The scary part is we know it is going to happen again and it is becoming harder and harder to watch her suffer so much. Thank you very much for your prayers.
 

posted 4/27/2006

Wendy Washburn kwashburn@comcast.net

My mom Peggy, entered the hospital on March 3 for a probable thoracotamy for a large lesion on her left lower lung. She had smoked a pack a day up until a couple of weeks prior to the surgery, so we knew it probably wouldn't be good news. The surgery went as well as could be expected, and the cancerous lesion and left lower lobe were removed. A small metastasis was noted on the bronchus in the hilar area, and Mom was sent into SICU to recover. She did have a large air leak in her chest tube, but did well and was sent out to the floor within a couple of days. After only half a day on the ward, she was back in SICU with ARDS. I am an RN, and going thru this with her (also an RN) has been a life changing thing for me. She is 75 and really has been a fighter. I have been keeping a log, but mainly of the medical aspects of her care so I know what's going on. I'm so glad there is support out there. We have no idea what the future (or even tomorrow!) will bring; she's still in ICU, but now her chest x-ray is starting to clear up. She was already weak; now what?
 

posted 3/19/2006

Tina West bigheart31@hotmail.com

On May 17th, 2005 my husband fell 28 feet onto his head. He had severe brain trauma, 20 fractures in his back, 7 broken ribs, a punctured lung, a broken collarbone and a  shattered shoulder joint. He was in a coma for over 6 weeks. One week after being in ICU, they told us he had ARDS, something I had never heard of. They didn't give us much hope, in fact no hope, because his lungs were in terrible shape. They said he was the worst case they had ever seen. He was proned (turned) onto his stomach every 12 hours for almost 5 weeks. Today he is a miracle!!!!!
 

posted 2/21/2006

Cherie cheriewallis@yahoo.com

My mother (55) went into the hospital several months ago. Her whole body shut down and she had lost a lot of oxygen. The doctors believe it was an infection somewhere in her body that caused this. She was in the ICU for over two weeks and it was touch and go. When she came home, I (24) was the only one to care for her. I had to leave both my work school. I helped her through a lot of emotional turmoil and tried to give her all the support she needed. Three months later, I find myself becoming easily angered or agitated around her. I have now returned both to school and my job, but it does not help the friction. I love her with all my heart and I don't know why I have become so closed to her needs. She is still very weepy and anxious, yet I can't seem to help her anymore. I feel like an awful person. I know she still needs to talk to someone (my father and sister are not very understanding) and I still become so frustrated. I don't know what to do. I know this is pulling us apart, but I still find myself struggling with being her sole companion.
 

posted 1/27/2006

Lee Shults hissyfit99@aol.com

My husband, Ronny Shults, went into the hospital on May 13, 2002, with a heart attack. He underwent a bypass and was fine for the first 24 hours. When I saw him in the ICU, he was sitting up drinking a Dr. Pepper and teasing the nurses who were getting ready to move him to a room. 12 hours later he was on a ventilator and we learned he had ARDS. 5 months (4 in a coma), 8 chest tubes, 1 lung biopsy, 2 blood transfusions, 2 different trachs, and a difibulator/pacemaker later, I brought him home in a wheelchair and on oxygen. We had used up a million dollar insurance policy after only 4 months and had no resources left for rehab. We moved in with his sister and her husband leaving our home of 15 years and 2 pets alone. Since I was left for our sole support, it was such a blessing to have his sister to care for him during the day so I could still work. I know there are others like me out there....please write...I know what you are going through! 4 years later Ronny is off of oxygen and walks on his own. He is not the same man, but he is here with me and that is the most important thing. We will celebrate our 36th wedding anniversary in May, but our lives will never be the same. It truly is "for better or for worse, through sickness and health". There is hope and life after ARDS for all of us.....God Bless you all.
 

posted 1/7/2006

Jamie Adair twoof@hotmail.com

My mother has had ARDS twice. The first time was in 1996 following a knee replacement. She suffered ARDS a second time in November 2004 following the replacement of her other knee. The second occurrence was far more severe than the first and she nearly didn't make it. Thankfully, she did survive. However, it's been 3 months post-surgery and she is still extremely weak. I wanted to join this forum to see how others are doing 1+ years post-ARDS.
 

posted 12/21/2005

Jess jjcsvp@aol.com

Hello, I am the wife of an ARDS survivor. My husband was hospitalized from June 4th until the end of August. He is home now after being in a coma with a tracheotomy, a feeding tube and 2 chest tubes and I am so proud of him. My question is this: does anyone have any advice for me on how to deal with all the emotional issues running rampant in our lives over this? I love my husband so much, but this illness left a huge hole in our lives when it came barreling through. I am trying to pick up the pieces...any advice Thanks.
 

posted 12/14/2005

Valerie Merchant valeriem@townisp.com

I would like to know if anyone has a family member with ARDS that is having stomach problems. My mother has had a Cat Scan, ultrasound, sample tests, etc. but none of these tests show any problem. She cannot even digest the tube feedings. Does anyone have a suggestion as to what may be causing this? Her lungs are actually clearing up, but this problem remains.
 

posted 12/5/2005

Stephanie Ashlock gusafaync@aol.com

My mother Gail Bryan was bit by a tick on a church youth camp and was infected by Rocky Mountain Spotted fever. She was in the hospital a week and a half before ARDS set in. She developed pneumonia and sepsis. The doctors did not give her much hope. She was placed on a mask, the vent, and then an oscillator. Thank God she survived. Her body was shutting down, but the good Lord stepped in. Mom was on the oscillator for 4 days and the vent for 5 weeks, for a total hospital stay of 2 months. She now is receiving outpatient physical therapy and on 2 liters of oxygen. It looks like her lungs were damaged about 50%. It is very important for family members and loved ones to stay positive around the patient. Things may look bad but there is always hope. Just thinking back to August 1, 2005 when her condition deteriorated makes me cry. Thank God she is now recovering at home with her family.
 

posted 11/9/2005

Arul Kandhan arulkandhan@gmail.com

Firstly, let me add a few inputs that have not been requisitioned in the above form. The patient in question is my mother of 58 years. During the course of being on a ventilator, she had contracted HAP and she had spent about 58 days on the vent before she was extubated. On regaining consciousness, we observed weakness in her complete left side. A quick CT and MRI angiograph revealed following:- (a) An infarct on the right parietal and left occipital lobes; (b) Stenosis of the distal M1 segment in the right cerebral artery. At this juncture, I have been told that the condition is called hemiplagia and there is no active medication involved except those that would reduce risk of a stroke and exhaustive physiotherapy. I would most grateful if you could kindly advice us if in your experience such cases have come and if any remedies exist. Mother is 58 years old, has been active throughout her life (walking about 6-7 kilometers a day), has diabetic tendency and is an extremely cooperative and positive lady.
 

posted 10/17/2005

Julie Wilds wilds4@cox.net

My 4.5 year-old daughter had "a virus" per the ER doctors on Tuesday. I was told to keep her fever down and keep her hydrated. On Friday, she was admitted w/ sats in 80's and she was intubated. She was flown on Sunday to Children's Hospital of Philadelphia (350 miles). They put her on an oscillator and was one blood gas away from ECMO by day 7. Miraculously, her bg went up. She had a total of 5 chest tubes, spent 28 days intubated (7 days while awake, wow!) 5.5 weeks in PICU, and 4 weeks of inpatient rehab. She is now home without oxygen, and on a feeding tube with horrible feeding issues. We used hypnotherapy to reduce vomiting and feeding issues. 7 months after extubation, she has only chest tube scars and some stamina issues. Prayers from around the world saved her, as well as her doctor Daddy who rounded every day with the docs. He became her personal doctor, and knew every lab value and every change. The doctors and staff at CHOP call her "their Spring Miracle". She never should have made it, and she did. I (mom) had serious PTSD about 3 months after she got home. I managed to keep my cool during everything, but after I was a basket case. I didn't know about this site during this ordeal...it should be given to all ICUs and PICU's to inform.
 

posted 10/4/2005

Tara taramortimer@hotmail.com

My mother experienced a whirlwind of issues while in the hospital. Just as one thing was cured, something no one ever even considered came knocking. This all occurred in the fall/winter of 2000. I am able to relate not only to the medical issues of ARDS, but also to the emotional struggles I went through while my mother was recovering (the divorce of my parents, the amputation of my mothers fingers, her struggle with smoking, bone infections). I was a high school student and athlete at the time and can relate and give advice to others about how I managed throughout her illness. Please email me for support, information, or just to chat.
 

posted 8/4/2005

Maggie Keogh mag_keogh@yahoo.com

I am not alone. My husband had a lung removed (cancer) and after surgery went into ARDS. It's been 3 months now, and they are weaning him off the ventilator. They did the trach collar for 6 days, but they had a set back. His worst enemy now it seems is panic attacks. He is on an antidepressant and anti-anxiety and Adivan as needed, but he still has panic attacks. Is there some other drug that works better for these respiratory ailments and panic? I would love to know or be referred to someplace that might know.

Thank you a hundred times,
Maggie Keogh
 

posted 7/28/2005

Tina West craig.west@sympatico.ca

On May 17, 2005 my husband had a terrible accident. He was working on a commercial garage door when something that no one has been able to determine happened, causing him to fly 24 feet from a ladder, to be found 8-12 feet from the base. His injuries consisted of severe brain injury, 7 broken ribs, punctured lung, broken clavicle and shoulder blade and 20 fractures in his back. One week after being in ICU he got ARDS, something I've never heard of before, and he also had pneumonia. My husband was on death's door for such a long time. They spent weeks proning him to get his lungs to work, and finally 9 weeks later he is now out of ICU and in his own room. The ICU staff is calling him their biggest miracle in over 15 years. I've never been so scared in all my life. He still has so many obstacles against him, but he survived ARDS...that in itself is a HARD thing to do!

posted 7/20/2005

Sarah Emery footiemak@aol.com

Surgeons said Mark's bypass operation went well. They put Mark on vent because of agitation, etc. They did not continue to give him his Xanax but according to a consulting psychiatrist called in by me after much begging and pleading with surgeons, Mark was mega dosed with Ativan which had a paradoxical effect. Mark had a 45% ejection fraction before bypass and now has 15% This is a new cardio unit where the bypass was done and had no psychiatrist on staff. Could this agitation have damaged the graft? I believe if that doctor had not been called in, Mark would be dead. He had him off the vent in 2 days after changing medications. He was walking around the CCU fine with no oxygen. Then he was sent to rehab unit where there was no rehab, but more inappropriate meds given at the wrong time of day and pulmonary edema attributed to panic attacks. He was always in a wheelchair or sleeping. I tried to see cardio surgeons and they never responded to my messages and left him to the rehab unit doctor who released him with no oxygen to climb two flights of stairs. That night he was in another ER with pulmonary edema and now has congestive heart failure. He was sent back to the  bypass hospital and I arranged for a transfer to Mass General Hospital, which the cardiologist blocked. He wouldn't arrange a doctor to doctor transfer. My insurance had okayed this transfer! Have there been any studies done on sudden withdrawal and overmedication of anti-anxiety drugs regarding damage to graft and heart? Where could I get any info on this?

Thanks,
Sarah E.

posted 6/9/2005

Tracy tlpinto@yahoo.com

My father is 68 years old. He was a life-long smoker and quit two years ago. He had been on oxygen for the last 6 months due to his lung disease. He was admitted to the hospital on May 1, 2005 for shortness of breath. He "crashed" while getting a CAT scan of his chest to test for a pulmonary embolism. The doctors were unable to ventilate him above 50mm of oxygen for about 6 hours. (Don't ask me why). They are now saying that my father is "brain-dead" and cannot be weaned from the ventilator. When I talk to him, his eyes flutter, and I swear that he hears me, but the doctors all believe that I am incorrect. They have him HEAVILY seated so it's hard for me to even believe that it's not the drugs that are making him so non-responsive. He has an open-eyed, fixated look all day long. They are now classifying him as an end-stage, vegetable with no chance of survival off the vent. My father walked into that hospital with pneumonia feeling a little ill. It is short of impossible for me to believe that he was that sick. And now, to know that he went from a vibrant, intelligent man to this shell of a person is absolutely devastating. Does anyone out there feel like the doctors are/were pressuring them to end ventilation? Our doctors act like they are upset that we want them to aggressively continue to fight for our dad. Any communication with me would be greatly appreciated.

posted 6/8/2005

Dan Grim grims@yahoo.com

Unbelievably, my father Vinal Grim is also John Grim's father. As noted, John was one of the original founders of this support network.  My father developed ARDS after colon surgery.

posted 3/6/2005

Cammie Benson camiam777@aol.com

My husband Lynn had a pain in his side and felt like he couldn't get enough oxygen. I thought he just had pleurisy. He spent a whole day in the hospital and they found nothing. 3 days later he was in the ICU. Every test came back negative. He spent 2 weeks on a respirator. The doctor said we should call a priest to have him blessed. He's a very strong and tough guy and I think that's why he survived. He's now home but very tired. He seemed to be doing so well yesterday, today he hasn't gotten out of bed. He's normally on the go all the time. Only time will tell how he will get through this.

posted 2/6/2005

Melissa j.quintanilla@comcast.net

A good friend, Megan, went into the hospital on 12/13/04 to deliver her third child, a healthy and beautiful baby boy. Megan was very weak and sick upon entering the hospital and while in labor had vomited. In the days to follow, Megan's health became worse. It was believed that when she had vomited, she had aspirated into her lungs and developed pneumonia. The family, wanting the best care for her, moved her to the Fairview- University Medical Center in Minneapolis, MN on 12/18/04. It was there that she was diagnosed with ARDS. Megan has been on a ventilator now for one week. She is 27 years old and is very strong. We continue to pray that she will recover from this very quickly. Megan and her husband Wes were unable to decide on a name for the baby before Megan went into the ICU. Wes says "We had this baby together and we will name this baby together." So "Baby T" will wait to be named until Megan is well again. I would like to talk to anyone who has/had a loved one that is in crises with ARDS. I believe that it will help me stay strong for my "family" if I can continue to talk about this with someone who is going or has gone through the same thing. Also, everyone that reads this please say a little prayer for Megan. For the power of prayer can move mountains!!!

posted 12/25/2004

Deb rphdmr@yahoo.com

My husband Kevin had bariatric surgery on 6/28/04.  7 weeks later he developed an internal hernia.  He went to the ER and had a gastrograffin swallow. He had the hernia repaired, and 2 hours after surgery, he desaturated into the 70's.  He was re-intubated, with one infiltrate showing on the x-ray. 24 hours later, he was diagnosed with ARDS.  His paO2's were in the 40's. Kevin was transferred to a major medical center, where he went on ECMO for 7 days.  He had many, many complications, but they saved his life.

posted 12/20/2004

Pam Montgomery pam256@charter.net

On December 8, 2003, my husband, Chris was having chest pains. I took him to the hospital and within the next 72 hours or so, he underwent open heart surgery (5 bypasses). This surgery was very successful. However, within 24 hours of this surgery, Chris developed ARDS and was placed in an induced coma with a ventilator and feeding tube. His lung doctor was very clear with me that it was going to get worse before it got better. He was so right. We had Chris's son brought home from Iraq, I had to explain to our then 6 and 8 year old where their dad was. Chris was in that state for close to three weeks. Although his lungs were beginning to show some sign of improvement, he still continued to run a fever. Infectious Disease was called in and it was determined that his gall bladder had become infected due to inactivity and a drain had to be inserted. After a month, Chris was able to come home but it has taken nearly a year for us to work through not only physical issues, but moreover the emotional baggage taken away from such an experience, not only on his part but mine as well.

posted 12/19/2004

Trish tlhhh@aol.com

My husband Bob was scheduled for surgery on June 10, 2004. Within 15 hours after surgery, which appeared successful at first, he was admitted into the ICU for severe sepsis. He was immediately intubated, placed on 9 different medications, and various IVs were surgically placed in his body to monitor body fluids. After the first 3 days, it was confirmed that he also had ARDS. Through the next 90 days, he was intubated for 60 of them. For those 60 days he fought one bout of sepsis, ARDS, peritonitis, and a second bout of sepsis. After the 3rd week I consented to a tracheotomy, in hopes of reducing chance of infection and to enhance the life support system. On the first day, he was also placed on a Roto-Rest bed that as best as I can describe, looks like a Frankenstein bed that he was strapped into on his back, which then rotated him 60 degrees from side to side. The bed was used to help keep the fluids circulating in his lungs and body. He was on paralytic medication, pain killers, and heavy doses of versed. He remained unconscious, from the drugs, during 6 of the 8 weeks of the time in ICU. Eventually, as the sepsis infections were under control, he was able to get stronger and get off the life support. The fight to beat ARDS was not accomplished by one treatment. He survived because of the lower settings of PEEP on the ventilator, the use of steroids, the paralytics, and the Roto-Rest. Today he continues to fight mycobacterium infections that have set in the suture site, BUT he's able to breathe on his own and in fact, has done so since August. The infections are probably due to the autoimmune system being compromised by the months of antibiotics and the steroids. But those decisions were made at the time, knowing there were risks, in order to save his life then. Stay strong and make the decisions you have to make at the time, to get your loved one through that day. Talk to your loved one. Play music he loves. Be there when he's bathed and take part in his daily care, as much as you can tolerate.

posted 12/7/2004

Elizabeth ejhenn@earthlink.net

My son Joe became suddenly very ill and within hours was on a ventilator. He remained medically paralyzed & sedated for 4 days, in ICU for 6 days and was discharged out of the hospital after 10 days. This occurred from October 10-20, 2004.

posted 12/1/2004

Patrick pdwitham@aol.com

It started in Washington DC two weeks before Christmas in 2001. I was in a class when I received a cell phone call that my pregnant wife was in the hospital and needed to have surgery. Needless to say, I asked for what, I had just left her 4 hours earlier and she was fine. I traveled the 50 miles back to Fredericksburg, VA on the train wondering what was going on. Once I got to the hospital I found out that my wife had a massive kidney infection and bladder infection. I took our 10 month old home and my mother came down. The next morning I was informed that she had sepsis of the blood, and that most of her digestive track was infected (small intestine, large intestine, gall bladder, and colon). She had many antibiotics going into her through IV. Thursday morning, my mom and I went to see her and she could not breathe well at all. The nurse on call was constantly in her room, due to her blood sats down to 80-85. That was when they called a pulmonary doctor who almost immediately placed her in the ICU and told me that she had ARDS. The next time I spoke to my wife, she had been on the respirator for a week. My wife�s condition deteriorated over the next 5 days while on the ventilator. After a week in the hospital she began to get better. On the 8th day she was taken off the ventilator and allowed to go home three days later. She came home on 24 December to spend the first Christmas with our daughter, and she was still pregnant. Thanks to the many doctors, 6 or 7 that I met, and especially the nurses in the ICU. Our second child came 4 � weeks early, but our miracle girl is fine, and I�m happy to say so is my wife, and our third little girl.

posted 10/30/2004

Gayle glierd@yahoo.com

Richard is my brother-in-law, diagnosed with ARDS status post "CABG" in August, 2004. Currently there is medical insurance coverage, but that status may change in the near future. I want to research other medical insurance avenues for ARDS patients. Where do I begin?

Thanks,

Gayle

posted 10/10/2004

Tammy Treiber TammyTreiber@maritz.com

The doctors feel the first sign of onset was around 9/1, but my mom went in for back surgery on 9/18 for a spinal fusion. When the doctor had her closed up, a nurse noticed one of the instruments was missing a screw and a piece was broken off from it. They x-rayed my moms back and found the pieces behind the fusion. He had decided to open her back up to retrieve the pieces. During this time she lost a lot of blood (words of the anesthesiologist) and suffered a mild heart attack. I noticed within the first couple days that she started wheezing and had difficulty breathing. So, I'm not sure if the ARDS went undiagnosed for awhile, or if something else happened to cause the ARDS. Today is day 50 in the ICU. A CAT scan showed significant fibrosis. My question is this: Are there any survivors out there that also had fibrosis from the ARDS, and what is your current quality of life like? Are you still on a ventilator?

posted 10/6/2004

Bekki Sanchez bsanchez@fnf.com

My husband's grandmother was complaining of unbearable stomach pain. She was taken to the ER at Los Banos Memorial Hospital. They could not determined what was wrong. She was released home after a few hours with Vicodin. The same night, her stomach began to compress and made her very uncomfortable. We decided to rush her to San Jose, where her actual doctors are located. This is about 75 miles from our home. The doctors at Kaiser ran tests and found that she had an obstruction from a "kink" in her intestines. The doctors decided to put a tube through her nose to try and suction it out. After two days, the doctors decided that was not working and that they would need to go into her stomach and "unkink" her intestines. The procedure was successful. After the surgery, the doctors said that her breathing was not normal. They decided to give her oxygen.  with the little tube that sits in the nostrils. When her breathing started to get worse, they decided to intubate her.  Apparently, our grandmother suffered a "mild" heart attack after the surgery, which is why she was having trouble breathing. She was ventilated about 10 days, and she was doing more then 50% of the breathing herself. While she was on the ventilator, we were told that she has ARDS. ARDS was explained to the family, but we did not really understand the extremity of this syndrome. Grandma was released from ICU and extubated. She has spent about 4 days in an actual room and is still having a hard time breathing.  She was able to talk and let us know she loves us.

posted 7/12/2004

Marni honibear28@yahoo.com
My sister-in-law is in a battle for her life. This is the second time that she has been struck with ARDS. The first time she was told that if she didn't change her alcoholic/drug abusing way of life, she may not get a second chance. It was this first bout that we also found out that she was also diagnosed w/ Hepatitis C. About 3 years ago, she came through it, although she still continued to drink and smoke. And here we are, about the same time of year, and Nadine is in the ICU fighting for her life. Not only is she fighting off the ARDS, but she now has MRSA too. We are devastated, as a family, and also very hopeful. Yet we all know that the end is near. I am so saddened by this; I feel as an RN that I didn't do my part in helping her to avoid this, and as a sister-in-law, I feel that I failed her by not being there for her. I am dealing with a lot of guilt right now. I am so glad that I found this site and I hope that I can be of assistance to anyone else, as you all will be for me in the upcoming rough days/weeks.

posted 12/4/2003

Karla Dailey kardailey@mchsi.com
My husband Joe was in a car accident 1 year ago resulting in a spinal cord injury. The surgery to stabilize his neck led to ARDS and pneumonia. He spent 2 months in ICU and another 7 months in a rehab hospital with breathing problems. He has been home for 2 months with pneumonia twice and now ARDS again, although this one seems less serious.

posted 11/17/2003

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posted 12/30/2001