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hboyajian

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My dad is having further difficulty breathing, down to 56% lung capacity form 70% six weeks ago. This was not quite enough to qualify for a bi-pap, but when they did a blood test, they discovered that his blood oxygen level is low enough that he should be on a bi-pap plus oxygen. Hopefully he can get the equipment soon. His energy level is very low. He frequently sits with his eyes closed to rest during the day when just a few weeks ago he was able to read the paper, do his sudoku puzzles, and participate in discussion groups and gentle exercise classes. My mom is really concerned about the decline in his quality of life. When she mentioned to the doctor that his breathing seemed labored and that he was fatigued, a prescription for Ms-contin was suggested. My mom is concerned that a morphine based medication might make him feel even less enegetic. He was very sensitive to the pain medication given when he had PEG tube surgery just a couple of weeks ago. If anyone has experience or thoughts about bi-pap, fatigue, and medications of one kind or another, please let me know. Thanks.
 

Al

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Hi there. This is just an opinion and I'm no doctor but until your dad gets the Bipap I'd be really careful and keep an eye on him with taking strong drugs and sleeping. I'm just read the product monograph for this drug and it warns that older people may experience shallow breathing and drowsiness. Now not everyone will get the same side effects from this but I wonder why a strong pain reliever was prescribed for laboured breathing and fatigue when that is what the drug will give you. Was this a GP that gave him the drug or his Pulmonologist? If the GP I'd be calling the other guy. Sometimes the GP is not aware of the problems associated with ALS and certain medications that would be fine for someone else. Just my opinion. Hope it helps. AL.
 

hboyajian

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Thanks so much for looking up this drug. I need to learn how to do that. My sister, mom, and I have been burning up the airwaves with each other questioning why he would be prescribed a drug which, as you mention, would possibly exacerbate some of the symptoms he already has. He has no pain right now, just the exhaustion and trouble breathing. The reason given for the medication was "to relax him" but it seems to us it isn't tension that is the problemIt was his ALS specialist who prescribed it, after talking to the clininc coordinator who had spoken with my mom on the phone. This just seems too convoluted to me. I suggested to my mom that the doctor shouldn't prescribe such heavy duty medications without examining the patient in person. I think the ALS doctor has little experience working with older patients. I don't think my dad is planning to take this drug until the reason for it is explained to him more fully and even then only if he agrees that it would be helpful to him. His bi-pap machine arrived today,and he is going to try that first to see if it will help him without needing to resort to drugs.
 

Al

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Did they just send the machine and say put it on and try it? Or did some one come with it to explain it or did he go to a sleep lab and get set up? Just curious because of the way you worded it that it came today like UPS delivered it.
As for the drug lookup, this is one site I use. Click on the site and type in the name of the drug and then click on the name of the one in the list (sometimes there are more than one type) and read the side effects, precautions etc. AL.
http://www.rxlist.com/
 

quadbliss

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I agree with Al, and I see another problem. Unless your father had previous lung problems that inhibited his metabolizing O2, oxygen it not usually prescribed for neuro-muscular disease. My understanding is that the body uses O2 saturation to regulate breathing. If O2 sats are kept artificially high, the breathing rate is reduced, and CO2 builds up in the blood. Not good. Does anyone agree or disagree?
 

Al

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I agree. I knew that but missed it. Usually the Bipap will bring up the O2 levels. Glad some of you are paying attention LOL. AL.
 

hboyajian

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The bipap machine was brought to my dad's home by a therapist of some kind from the medical supply company. She showed my parents how to operate it. She also brought an oxygen tank. The doctor's instructions (He's an ALS and MND specialist) were to use the oxygen during the day and the bipap at night. My mom called me because she'd had a bad experience with the woman. Mom was trying to write down all the instructions for the care of the machine and the therapist told her nobady else took all those notes, they just remembered it. Well for God's sake, my mom is 78 years old. Let her do what she needs to do. Consequently, after the woman left, Mom was trying to figure out where to hook up the face mask tube and couldn't remember how to do it. The woman had showed her how, but did not have her practice it with guidance. My dad was exhauseted after this visit and a physical therapy appointment. He lay down to rest. I don't know if he had the oxygen on or not. Mom at first said he'd had it and later said he was just resting without it. She called me again a few hours later quite concerned that she couldn't rouse him to get him to come to dinner. I told her to call 911, which she did. They came and took him to the hospital. He had highly elevated co2 levels and was slipping away from us. When I arrived at the hospital several hours later (as soon as I could catch a ferry and drive 50 miles) Dad was on oxygen, but still out of it. They then made the decision to use the bipap machine. I had read something about oxygen being bad for ALS patients, but I couldn't remember what it was. I tried to ask, but was assured that the oxygen was helping because his oxygen levels had been low. The bipap machine was attempted for several hours, but it was having no effect on lowering his co2 levels. We had to make a choice. Dad had never told me if he wanted the traceostomy or not. He was intubated and put on a ventilator to allow him to become conscious enough to make his own decision. The next day he was sedated, and came out of it enough to communicate in the afternoon. We explained the situation. I can only imagine how hard a decision this was for him. The doctors said his lungs were not strong enough to function even with the help of a bipap machine. He said he needed to think about his options (we were using yes/no questions and he was able to respond by wiggling his eyebrows up and down or shaking his head slightly). IWe spent some time telling him our memories, rubbing his legs when they hurt, gently patting his forhead and chest. My brother was on the way from San Diego by plane. He went to the airport and the airline helped him patch together a series of flights. Dad needed to be sedated again a little later because he was in pain. It was a lower dose this time. When he came out of it again the whole family was with him. Th pulmonologist explained his choices. He again said he needed to think about it. he did not want to die, but I also know he did not want to be on a ventilator in a nursing home. My mom could not have done all the care herself, and while dad was sedated we had investigated 24 hour home nursing care (so expensive as to be prohibitive) and the care centers that would take patients on ventilators. For the next several hours, we sang for dad, we told him more memories of his life, we showed him photographs, we hugged him as well as we could with all those tubes on. He began to be in more pain. he said he was ready to make a decision. The hardest thing I have ever done in my life is to ask him the questions he could answer yes or no to. One of them:"Do you want the ventilator tubes removed and be allowed to die naturally?" He wiggled his eyebrows "Yes" When the ventilator was removed, he was able to speak to us for a short while. Then the co2 levels began to rise, and he became less rational. He was on oxygen at this time. They told us it would help him go more comfortably without struggling for air. They also periodically put him back on the bipap, but it was not making a difference. I do not know if administering the oxygen had a deleterious effect. I had to make a chioce to trust what the doctor was saying. My heart was begging them to try the bipap longer, but it was clearly uncomfortable for him, and I did not want to torture my dad in his last hours.20 hours later, my beloved father passed away with all of us around him. My sister and I bathed him and dressed him. My nephew (8 years old) said he looked like Grandpa again in his own clothes. I realize this is an extremely long post. I only hope our experience helps someone else be more informed of the issues and ask critical questions before an emergency. We tried our best to be knowlegdeble, but somtimes you don't know the right question to ask until you are in the moment. My best to everyone here.
 

Pearl

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Really sorry to hear about your dad's passing. How wonderful, though, that your family was able to be with him and share so many memories.




For others, although I am not a doctor by any means (just a nurse and with limited experience at that) - I can't fathom why the first doc would perscribe a pain killer that - I believe - is known to decrease respirations (unless his aim was to help this gentleman die in peace - but that should have been clear to the family).
And, I also thought 02 was contraindicated since the real problem is blowing off the build up of CO2...so also perplexed by the O2 order.... any other thoughts on that from other medical people or those w/experience?
 

Pearl

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This from a website about MS-Contin:


"As with other narcotics, the most hazardous potential side effect of MS Contin is respiratory depression (dangerously slow breathing). If you are older or in a weakened condition, you are particularly vulnerable to respiratory depression; you may be at special risk at any age if you have a lung or breathing problem.

More common side effects may include:
Anxiety, constipation, depressed or irritable mood, dizziness, drowsiness, exaggerated sense of well-being, light-headedness, nausea, sedation, sweating, vomiting "
 

Al

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I am so sorry to hear of your dad's passing. At this time of year it is especially difficult. I am not a doctor either but there was someone here recently in the same situation and I questioned the treatment. Possibly as Pearl suggested the doctor was just trying to help your father to end his difficult journey. O2 is not generally given to ALS patients unless they have pneumonia. My thoughts are with you and your family. AL.
 

BWk

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Sorry to hear of your Dads passing and may peace come into your souls during this difficult grieving period for your family. Barry
 

trustinggod

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My condolences to you and your family as you morn the passing of your father. Thankfully time permitted you all to be with him and your mother in the final hours. May you find peace in knowing you were there for them both.
God Bless you.
Jeanne
 

hboyajian

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Thank you all for your kind thoughts. I miss my father terribly. It is possible that the various doctors made errors in judgment in prescribing ms-contin and oxygen treatments. My mother certainly questioned the drug, and he was never given it as there was no time left anyway. I will never know about the oxygen treatment. I have tortured myself with the possibility that things might have been different if I had questioned it more strongly, but here is a pulmonologist and an ALS doctor telling me this is normal procedure under the circumstances. I think in his final hours, the oxygen was helping ease his passing, as the bipap treatment had failed. My father was not wanting to say goodbye to life. In his last conscious moments, while his brain was affected by the co2 build-up, he was asking for his walker so he could get up and walk out of there. This was extremely painful for us, as we would have loved to honor that request, but in reality his breathing and his heart were soon to end. I sang this song with my mother in some of his last moments: Peace I ask of thee oh river, peace peace peace. When I learn to live serenely cares will cease. From the hills I gather courage, visions of the day to be. Strength to lead and faith to follow all are given unto me. Peace I ask of thee oh river, peace peace peace.
 

liz

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Thank you for sharing your experience with us. I don't think you failed your father in any way. You respected his wishes and provided comfort and company to him as he passed. None of us could ask for more. I'm sorry for your loss and wish you and your mother peace as you grieve.

Liz
 

hboyajian

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Liz, Thank you from the bottom of my heart. I have been saying your words to myself frequently this week to keep out of despair. You are right, I did not fail my father, and I honored him as he left us. I am grateful I had the opportunity to ask him what was his choice. I would be having a much harder time if the decision whether or not to remove the respirator had to be made for him.

I encourage all people here to have this discussion with your loved ones before an emergency occurs. I had talked with my dad just a few weeks before about options for when his breathing failed, but he'd said he needed to think about it. He always was a person who had to think awhile on things before he made up his mind. I was planning to resume the conversation over the Christmas holiday when I could spend a week with him. That was never to be. My mother was having a hard time bringing up the subject of dying with him. All her energy was going to taking care of his day to day needs, and I think she could not imagine the idea of him being gone after 51 years of marriage. Find someone in the family who can talk about it, and find out about the real options so you are dealing with reality. I thought I had more time, and I didn't.
 
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