Hi Linda,

 My name is Don Hartford.

 I am Debbie's Dad and my wife, Carlene, is the young lady that is afflicted with ARDS.  Or as I can now say, was severely stricken with ARDS.

Carlene had started having bad stomach and chest pains around the first part of March 1999.  I took her to her doctor who then ordered several tests, i.e., ultra sound scans, CT scans and X-rays.  She kept getting worse and they kept giving her medication for what they thought was wrong with her.  To make a long story much shorter, her doctor finally agreed to admit Carlene.  She was admitted on 04/12/99.  The tests revealed only pancreatitis.  This could have been the culprit, but it wasn't.  After two days in Maine Medical Center, an X-ray showed free air in the chest cavity.  This was not good.  This meant either a perforated ulcer or intestine perforation.  She had to go to O.R. right away.  It was 04/14/99.  After a three-hour surgery, the doctors came out and told us, (me and Bob, our son) the news.  Carlene had ARDS and her chances of making it were small, like 40%.  She had a perforated ulcer, which resulted in a very nasty case of peritonitis.  Either of these were capable of taking her from us.  The doctors, her surgeon, her lung specialist, and the S.C.U. chief explained what had happened and why she had ARDS.

They told us we would have to wait and see.  Meanwhile, I had been asking questions like, was she ever at any time without oxygen?  They said, no, not at all.  I also asked all the usual questions, too.  Then, Dr. Mette, Carlene's lung doctor said that he wanted to talk with me.  He told me about a study that was being conducted in the country and said that Carlene was considered to be a viable candidate.  He gave me all the details and then asked me to consider putting her on the program.  It is a nation wide study of the effects of "Liquid Ventilation".  Already in shock from the news of the severity of Carlene's condition and having prayed very deliberately for God to protect her and keep her from harm, I agreed to her being a candidate.

I can only tell you that she was the twelfth person in the country to participate in this program.  There will be many hundreds and thousands more.  I believe that it was the best thing that I could have done for her.  To be brief, Carlene started having fevers several days after the conclusion of the five-day program.  The doctors tested her for everything.  Finally, they went back in and found two "half dollar" size perforations in her small intestine.  Then after that was fixed, and another fever, they found what appeared to be a collection of fluid near the pancreas.  They wanted to aspirate it by needle.  They did and found that it was a small amount and it was not causing a problem.  It was inflamed and being treated with antibiotics, which she was on from her first operation.  That was operation no. 3.

Then after a few more CT scans, the surgical team started to get concerned about the area that they had aspirated.  It appeared to be still there and they were concerned that she may have twisted bowel or some other problem.  So they went in again through the original incision, which was not allowed to heal after the second surgery.  They thought they might be doing this again.  Now, Carlene had no fever, no blood tests indicated that there was a problem.  Hematacrit was good, blood gas tests-good, cultures-good, etc.

But here they go again, back in to see why she had this area of concern.  They got in all around her pancreas, they said, but found nothing.  The bowel was not twisted so they put everything back.  They also inserted a drain to remove any liquid that might accumulate.  At the same time, an X-ray revealed that a portion of one of her lungs had collapsed.  The doctors had to insert a positive pressure airway drain.  This is a needle inserted into the pleura that drains off any liquid that is preventing the lung from expanding while also maintaining a liquid barrier from air entering her chest cavity.

She required many units of blood for the surgery that soon followed.  I could not understand why.  Now, I do.  After a couple of weeks, Carlene began her high temperatures again and now she needed more blood.  The surgical team said they would have to go back in.  This time a different doctor performed the surgery.  He said that "She might not make it".  She had gotten ARDS each time, but to a lesser degree each time.  This time I was very worried.  The doctors gave us no hope at all.  To add to the grief, a friend of mine came into the hospital to see his son who had been in a motorcycle accident.  He had to have surgery because he was diagnosed with cancer.  He was operated on and the doctor took one look and closed him up and later told him he had about six to eight months left.  Meanwhile, his son, who was still in a coma, was having very high pressures in his head.  The doctors told my friend and his family that he would never be the same again.  He would be on life support and would not know anything.  They decided to let him go.  He passed on a few days later and my friend, Paul St. Laurent, had to go home without his son.  I started to know loss like you wouldn't believe.

Carlene had been on "pressure controlled Ventilation for most of her illness.  After her last operation, we maintained our vigil with God and many friends and relatives and church groups and a whole lot of wonderful people were praying for Carlene with us.  At one time when I was alone, late at night, in Carlene's room in SCU, I prayed quite intently.  I know I was in mild shock.  I haven't been able to put it out of my mind.  Tears come to my eyes at this very moment, just thinking about what Carlene went through and is going through as I write this.  God Bless her.  But, one night, while in her room, I sensed a very powerful presence that calmed me and moved me to feel that I need not worry.  I relished the feeling and I trusted in it too, but I just could not lose the fear or rather the pain that my family and I had endured.  It was embedded in our hearts forever.

 As the days went on, Carlene started to get better.  The respiratory therapists were trying new settings all the time.  I was asking them technical questions about the "vent" and they were telling me all the wonders of how the "vent" can be programmed to do all kinds of things.  I came to know the ventilator quite well.  I respect and trust it, too.  These people were programming the vent to help Carlene get more comfortable so that her body could focus on healing while the breathing became more natural.  Carlene was on the ventilator for 100 days to the date.  On 7/22/99, Thursday afternoon, she was taken off the ventilator.  She still had the trach tube and was receiving oxygen at a very low rate to wean her off.  She was handling this nicely.  She was in S.C.U. for 108 days.  She was in the Rehab section of the hospital for 14 days and she has been in New England Rehabilitation since Friday, the thirteenth.  After five operations, one hundred days on the ventilator and getting ARDS five times and each time at a much lesser intensity, she is now in a rehabilitation hospital without any oxygen, no tubes, no feeding tubes, no IVs.  Nothing except a Foley catheter that she requires because she also has a Spinal Bifida.

Linda, I hope I have provided some of my experiences that will give hope to those who chose to learn and know that we must face each challenge, one at a time and sometimes more.  It is difficult and the hurt goes deep in the ones who have to stand watch over their loved ones.  For them, you have my deepest understanding and respect.  To the loved one who is ill, my prayers are for you and your family as well.  Do not hesitate to tell your friends and relatives.  They will be there to help pray with you and help to give you peace.

Never give up hope and trust in the Lord.  Seek Him, and make a personal sacrifice in His name.  Nothing enormous, but give up something that is difficult for you to stop.  This shows your sincerity and is enormously appreciated.  You will find that it means more to you, too.  I just think it adds meaning to your prayer when you care that much about someone.

My wife doesn't know that I have done this.  She also just found out that I have created a journal in her name.  It is an account of every day of her illness up to the day after she went to the New England Rehabilitation Hospital.  It includes pictures of her and others.  Oh yes, I had to take her Dad to the doctors during all of this.  He had to have a double bypass surgery.  Dad was hospitalized from 6/17/99 to 7/6/99, 19 days.  He did well, but he is not his old self, for sure.  Carlene found out about it just a few days ago.  As the nurses told us when we were in SCU, she will not remember it, at all.  She doesn't, either.

My daughter, Debbie helped me a lot.  She searched the Internet and found many resource tools that have helped me to understand my wife's illness.  I was able to see others who were going through the same thing and in some cases, much worse off, and still did well.  Your web page has been an inspiration to me, too.  I never jumped in because my hands have been full.  I am telling you a little about Carlene and what she has endured because Debbie suggested that I look at your e-mail.  She sent it on to me.  I hope and pray that this will help someone in crisis to find peace of mind.  I haven't given you all the details for it would take hours to write.  I think that what I have said thus far will provide some useful information that will give someone the hope and courage they need to face what lies ahead.  You have my permission to add Carlene's name to you site and I am sure Deb will give it to you also.

 

God Bless all of you

Don Hartford