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TPALS Home Stories: Diagnosis Stopping driving Going to a wheelchair Positioning in Bed Feeding tubes Using a BiPAP Getting a trach Life on a Vent Power outages Resources: Communication Aids ALS Links.com ALS Survival Guide ALS Links More Links ALS Association MDA Misc. Issues: My Meds My Treatment Dr. Meagher & Pergonal Ron Leeb & ricin |
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Life on a Vent: David's Story Three months ago I admitted myself into the hospital for a procedure I had feared since my diagnosis of ALS ten years ago. The procedure was a tracheotomy and using a ventilator. The thought of being tied to a machine and dependent upon it for my existence was my worst nightmare of ALS. I had fought and postponed this decision almost to the point of no return. Like every change associated with this cursed disease, I resisted it, leg braces, wheelchair, g-tube, communication system, and now the vent. But with every reluctant change came welcomed results. The leg braces for awhile prevented falls that had become too common. The scooter then wheelchair conserved my energy and provided mobility to do the things important in my life. The g-tube ended countless hours of consuming meager amounts of food while desperately trying not to choke. The communication system restored my link to the outside world, and I regained a great deal of the independence ALS had stolen away. The vent, well let me explain. I was using a BI-pap machine for the last three years when sleeping. As the muscles in my neck and around my throat weakened, maintaining an airway became increasingly difficult. I had increased the pressures of the forced air so high that my sinuses were a wreck, and sinus infections were regular. I must say this, during the three years on the BI-pap I never had a chest infection. Every year prior to the BI-pap and since my diagnosis, I had at least one chest infection and one year I had pneumonia. The progression of the illness had exceeded the usefulness of the BI-pap machine, but still I put off venting. I began having episodes of waking during the night and gasping for air. One particular time I am sure I came very close to death. I was dreaming and in my dream a dear friend of mine was shaking me and shouting ''BREATHE BREATHE''. I awoke from the dream gasping for breath and I was chilled with uncontrollable shakes. During the six months before the tracheotomy I was bedridden, except for showering which exhausted me completely. When I would sit up in my chair I had difficulty breathing while trying to manage excessive sinus drainage. My SATs [ed: oxygen saturation of the blood] were always fair, but my respiratory system and heart were using all of my energy just to maintain. I knew it was time for the vent. I had decided years ago that I would use a ventilator if I reached that point. I love life and I have two young children to live for. My wife did not share my opinion on venting, but she is entitled to her opinion. I feel this is a very personal decision, yes, using a vent requires the assistance of others, but I want to live and others around me wanted that too. The procedure was simple and relatively painless. My hospital stay was several days primarily so my caregivers could become comfortable with trach care and suctioning. Going home was a bit overwhelming with all the equipment and supplies. I had an onslaught of nurses and aides from my home health company the first few days. They were becoming familiar with the equipment and new procedures. The first two weeks I needed a lot of suctioning. All of my caregivers were uptight and nervous; this didn't make for the best environment. I even questioned my decision to vent. By three weeks things began to settle into a routine, I needed less suctioning, everyone was becoming more comfortable with my care, and I began getting out of bed. My children asked me different questions. Hunter asked me if I would be able to get out of bed and go outside and play. Hannah asked me if I would make it to her softball game. I am extremely happy to report I did both. My first outing was to attend her game on opening day. We were all a little nervous, but it went well. Hannah was already at the ballpark when I arrived, when her eyes met mine and the huge smile that was on her face, I knew in my heart that I had made the right decision! Now, three months on the vent, I am continuing to gain strength. My appetite has increased and I have put on at least five pounds. I do not fatigue like I use to, and my tolerance to heat has increased significantly. I have a suntan, first one in a few years! Everyone remarks how much better I look, that is something I have not heard in sometime. I do not even think about the vent any longer, it has become another piece of equipment that aids in maximizing my enjoyment of life. The need for suctioning is slowly reducing; I have days that are better than others. Suctioning for me is not unpleasant; it isn't something I would do for fun though. I am up and out again, I am living life. Most importantly, I am outside playing basketball with my son! More thoughts from David The vent was the change I feared most of all. I suppose it was a combination of losing independence and the stigma of a vent. Society is so quick to write off the terminally ill. In these days of Dr. Kevorkian and assisted suicide, the press coverage makes this seem like the logical solution. So little is written about the celebration of life. I was so shocked and amazed, how the vent improved the quality of my life. I know I would not be here today without the vent, but it has far exceeded my expectations. It would have been reassuring to read other positive vent experiences. Life on the ventilator has given me a second chance at living, an opportunity to help and encourage others. I have had the chance to help a gentleman in Panama acquire a communication system, a wonderful lady in Washington access her computer, and encourage a friend in California to accept his situation and live life. Maybe this would have all taken place without me, but it has made my life very rich and worthwhile. In making my decision to go on the ventilator, I considered many things. I tried very hard to make a rational decision vs. an emotional one. On a rational level, I knew my mind would remain lucid, therefore viable life exists. I knew I still had much to offer my children and others. I have experiences to share and new ones to make. Emotional thoughts I considered were, being trapped inside a useless body, also becoming more of a burden to my family. I realized that purely emotional decisions often had fatalistic results. As a Christian, I know God loves me and gave me life, I also know He gave me a will to do as I choose with this life. I choose to live life for the experiences, the good with the bad. I pray for the strength not to regret the past, or fret the future, but to rejoice and live in the present. Who knows, tomorrow there might be a cure, or you could teach someone, how to appreciate the things that really matter in life, but you will never know, unless you continue to fight, and live out the life you have been given.
God bless and keep fighting, David Life on a Vent: Maribeth's dad David's story is quite similar to my father's. I'd like to pass on Dad's experiences. Dad was diagnosed with ALS about 21 years ago. He was 43. Much like David, as his disease progressed, he resisted using adaptive equipment. Once he realized the benefits of using each piece, he began to view the devices as tools to make his life easier instead of symbols of declining health. When the time came for Dad to opt for mechanical ventilation, the decision was easy. believing that he was his brain and not his body, he knew he had a lot of living to do. That was 13 years ago. Today Dad continues to live successfully with his vent. He uses it 24/7. The last time he required suctioning was approximately 8 weeks after having his trach performed. Nothing since. Although his only voluntary motion is a shoulder shrug and facial movements, he continues to function and interact on a daily basis.
Maribeth Salge of Cocoa, FL. I am a physical therapist who coordinates
an ALS support group in Brevard County, FL. I would be more than happy
to correspond with anyone.
msalge@cfl.rr.com Life on a Vent: Speaking and smelling I once thought that having a trach and not being able to talk would be horrible but actually it's been a blessing for me. Before I had the trach, I was terribly bothered by all sorts of odors; so much so that it interfered with my ability to go out. Now that I have the trach and can't smell that's no longer a problem. My speech had been significantly impaired for years so I don't mind not being able to talk. Most people read my lips and we also have a letter board given to us by the ALS Association.
Meredith |