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mannco74

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As i am sure most of you know i have refused a trach however my reasoning or lack of same is not meant to influence. I have just read a wonderful post on BT by Harry AZ and he said i could share it;

Noodle, I had a trach installed last June. Since this was an unexpected event, it was quite an adjustment to my lifestyle. I went to the hospital with a suspected mild-case of pneumonia and came out with a trach and feeding tube. The feeding tube was something I was planning on, but the trach was a huge shock.

Although the trach was a huge surprise, I want to state up front that the trach has turned out to be a blessing in my life. I am on the ventilator only when I am in bed. During the day I am in my wheelchair without the vent, doing business as usual. I have found the ventilator to improve my energy level, and, perhaps, has helped slowed the progression of the disease. I can detect very little loss of strength in the past ten months.

Initially, the adjustment was a difficult one, but my family has been wonderful in helping me make this adjustment. I have taken Zoloff, an antidepressant, since being trached. I have no idea how I would now fare without Zoloff, but I tend to leave things alone while doing well. I have not experienced any depression, other than the first few weeks.

The tracheotomy procedure calls for a general anesthesia, while the surgeon cuts a wound large enough to allow the installation of the trach, which has a curved tubular structure inserted into the trachea with an opening pointing downward toward the lungs and a second opening outside the stoma. Most trachs have an inflatable cuff which restricts the flow of air upwards into the mouth and sinus cavities.

The wound is painful and sensitive for about 3-4 weeks until it heals. I had some stitches which were removed after the first week. After the wound or stoma has healed, it is relatively pain free; I have my trach yanked on all the time without experiencing any pain.

The most frightening part was losing my voice. My operation was not anticipated, so I did not know what to expect. About two weeks following the operation, a nurse walked in and said we are going to let you talk today and introduced me to the speaking valve. The speaking valve is a one way valve which allows air to be inhaled but not exhaled through the trach, and, by deflating the cuff, the patient can force air over his vocal chords. This was a most encouraging event in my life and left me in tears, knowing I was able to talk. The vent is disconnected while the speaking valve is in place.

Noodle, the primary difference in trachs is whether they have the inflatable cuff. I know of one patient who claimed he could not adjust to the cuff and, therefore, he uses a trach without the cuff. I would definitely recommend you try and adjust to the cuff, and I am sure your surgeon will insist on the same. The program works better with the inflatable cuff. The trach is something I know is there, but does not cause me any discomfort.

The trach and associated equipment does require daily maintenance, but can easily be done by a member of the family, and we find that caregivers are easily be trained to perform this maintenance. It needs daily cleaning and dressing, which takes about 5-10 minutes. I need suctioning a few times a day, which probably takes another 15 minutes total. I highly recommend the Ballard suctioning system, as it will save a lot of time.

Although the demands on the caregiver are not intensive, it is recommended you have a caregiver present at all times because of the critical nature of the ventilator system. I can count on one hand the number of times I have aroused my caregiver from a good nights sleep.

I want to close by stating my tracheotomy has overall been a very positive experience. The ventilator provides my body with a very restful night’s sleep and keeps my body well oxygenated. The trach also allows suctioning of the trachea which keeps it clear of mucous, fluids, and food particles, which helps ward off pneumonia and other infections.

I feel PALS are being misled when they are encouraged to not have a tracheotomy and ventilator because death is a better alternative. Prior to my operation, my ALS representative told me not to have a trach, because I would regret it. I recommend a trach for PALS and to allow an adjustment period of at least one month and then decide if this is the wrong choice. I have never understood the logic that a SCI patient is expected to be trached and cared for while PALS are expected to roll over and die.

You can read more about a tracheotomy at the following site:

http://www.nursing-standard.co.uk/a...fs/p4552w42.pdf
 

Al

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Thanks for the post Chris. I'm thinking along your lines as well and it is good to hear a good report from someone else. Maybe in time I might change my opinion. Who knows?
 

Mike27

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That was a very helpful post, Chris. I too am on the fence as to a trach, but your post makes excellent points!

Cheers!
 

stanly

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Hi ,my dad had the trach done in october of 1998 after his lungs collapsed,he had to be on the ventillator in jan of 1999,he is able to speak and swollow and is home since .I am glad we made the decision to have the trach for him because if we didnt ,according to the doctors he couldnt have made it in october of 1998.Good luck and all the best. :wink:
 

Al

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Thanks Stanly for putting this post back at the top of the list. I remember reading it a few months ago but had forgotton Chris's good report of someone on the trach. Sometimes some of the good information gets buried and it takes someone new on the forum to read back and bring pertinent information back up to read at the top of the list.
 

Brentt

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desperate need of help

My husband is in the hospital right now,he has the trach and the ventilator now,and now the doctors tell us the is not way he can go home with the ventilator because only rich people can afforded,he can't be in the trach because his lungs are too weak and a ventilator facility only would take care of him for short period of time,I'm the one who has take care of him since hi was diagnose 4 years ago,they told me the only opcion we have is to take him to and hospice and then they would take the ventilator off and give him some medicine to help him die in peace,that is the most cruel thingh I ever hear,and then people talk about they have take a family member home with a ventilator,and I can't understand why can we do the same thing,is anybody here the can help me,I don't know what to do,now I'm getting sick just to think about it,please help me.

Sandy.
 

Al

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Hi Sandy. I am so sorry that you are being treated so badly. The person on a vent/trach needs 24 hour care but it is done at home by lots of people. They get trained by the people at the hospital and usually have to get people in in shifts to allow you to sleep etc. Have you been in touch with ALSA/MDA? They usually can help arrange things with you. Some of the others from the US will jump in and offer other Organizations that can help you.
AL.
 

joelc

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Sandy, I am so sorry you have been treated this way and told this. I too was told the same thing so after researching it a bit and finding out things were different in another part of our province - we are moving. Tough decision, but if I stay here I will die, so we have made arrangements to move where we can get the support we need. Keep fighting, there is no reason you can't take your husband home and look after him!

I hope someone in your area can reply with a positive result.

God Bless!
 

quadbliss

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Hi Sandy,

Because I am a quadriplegic and on a vent, I require 24 hour care. If my vent were to fail, I wouldn't be able to help myself.

Medicaid pays for 24/7 in-home care. California has a program called the “Waiver Program”. Because I am on a vent and a quadriplegic, I would otherwise be in a care facility. Medicaid establishes a budget for me based on the amount they would have to
pay that facility. They will pay in-home un-licensed workers, CNAs, LVNs, and RNs. with a different hourly wage for each being deducted from my budget. I believe some states have similar programs. If your husband qualifies for Medicaid and is disabled enough to be institutionalized, you may be able to get into a similar program.

Mike
 

CindyM

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Sandy-I hope you decide to fight for your rights. I cannott imagine how these the callous people sleep at night. they could at least give you options like moving to a different area, trying to find funding for the help - anyhting! this whole thing makes me mad!:evil: I hope you advocate for yourself and your husband. Don't give up! Cindy
 
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