Decision about tracheostomy

[GregK]

To quote Max: Ditto! Thnx Diane.

 

[Dave K]

Dave do u know if your wifes secretions were mostly mucus, or saliva?

Copious amounts of both, but the mucus caused the most discomfort.

Are u happy with the trache, did it help?

It has helped a lot. The first 2-3 months were more difficult as we dialed in the suctioning and trach care. The initial training we received was only partially adequate, and the nurses had widely varying levels of skill and experience, but over time we figured out what techniques worked and didn't work. I imagine every patient is unique and therefore should expect a "dialing in" period of at least several weeks before maximum comfort is attained.

how many hours per day do u receive help that can care for the trache?

16 hours per day of skilled nursing.

through Hospice?

Yes

 

[patoyeah]

Thank u Dave... since your wife had copious secretions, i would gues she needs to be suctioned frequently... may I ask how often, her trach needs suction?

Thanks,

Pat

 

[jennyinfrance]

Dear @Alex123 I remember chatting to you some time ago regarding the mucus problem. I have bulbar ALS and I have reached that decision you are now facing. The difference between us is that I live in Europe and my healthcare is free. I feel for you but I would just like to say that I have been in contact with many PALS and CALS and I have not had any negative feedback regarding the tracheostomy. I am having mine done at the beginning of November. I still have 100% use of my legs and 80% use of my arms so I'm not ready to go yet! I see that some of the 'advice ' you have been getting on this forum is very depressing. This is not what I have been getting here in Europe. Of course, i am not looking at this through rose tinted glasses and I have been told the facts. Having a trache is absolutely the best decision for me and my family. However, every case is individual and I feel that, in the USA, the decision, all boils down to money which is a terrible shame. Could you start a go fund me campaign? Wishing you all the best, warm regards Jenny

 

[DrFab]

Jenny, i'm also french. Do you speak french ? Could you send me PM ?

 

[Dave K]

since your wife had copious secretions, i would gues she needs to be suctioned frequently... may I ask how often, her trach needs suction?

It varies. Most days maybe a dozen times. Some days it can be a lot more, say, during allergy season when the rest of us are blowing our noses.

 

[patoyeah]

Thank u Dave, before the trach, what was happening with her secretions? what were the secretions doing to her?

 

[Dave K]

before the trach, what was happening with her secretions? what were the secretions doing to her?

She had lost the ability to cough productively, so the secretions would remain in her airway instead of being expelled, and the cough assist machine was not working well with the mask and was blowing air into her abdomen instead of her lungs. She was miserable. She had decided she did not want invasive ventilation to extend her life, but her clinicians explained the trach would provide comfort by allowing us to suction the secretions and use the cough assist machine without involving the nose or esophagus. They were right. She is still able to breathe (albeit weakly) without a vent, but she is kept comfortable with the suctioning and cough assist machine. We have learned to recognize when she needs light suctioning before she experiences any discomfort from secretions, and so it has been a total success.

 

[affected]

Alex, may I ask if you are talking about a trach only, or a trach and vent?

How are you going mate? The OP has not posted on this thread since July.

 

[patoyeah]

Dear @Alex123 I remember chatting to you some time ago regarding the mucus problem. I have bulbar ALS and I have reached that decision you are now facing. The difference between us is that I live in Europe and my healthcare is free. I feel for you but I would just like to say that I have been in contact with many PALS and CALS and I have not had any negative feedback regarding the tracheostomy. I am having mine done at the beginning of November. I still have 100% use of my legs and 80% use of my arms so I'm not ready to go yet! I see that some of the 'advice ' you have been getting on this forum is very depressing. This is not what I have been getting here in Europe. Of course, i am not looking at this through rose tinted glasses and I have been told the facts. Having a trache is absolutely the best decision for me and my family. However, every case is individual and I feel that, in the USA, the decision, all boils down to money which is a terrible shame. Could you start a go fund me campaign? Wishing you all the best, warm regards Jenny

Hi Jenny, I remember reading about your secretions, and they were very difficult. I just read in another thread, I think, u have taken RCH4, for 6 months; and have stabilized.... did RCH4 have an effect on your secretions, if yes, what did it do?

Thanks,

Pat

 

[gerrie]

My mom was diagnosed in 2013 and at the same time got her trak put in.she stayed 10 mo th in a nursing home and at that time lost all use of her legs.we took her home in oct 2014.we learned how to suction her and now struggle with all her wounds and wound vac machine and jtube.in Dec 2015 she lost all use of her hands and the ability to move at all.life is a struggle with caregivers and working full time and caring for her.but she is stable with her vent.hardly any issues.very easy to use.she has a closed circuit one.

 

[gerrie]

Hi Jenny, I remember reading about your secretions, and they were very difficult. I just read in another thread, I think, u have taken RCH4, for 6 months; and have stabilized.... did RCH4 have an effect on your secretions, if yes, what did it do?

Thanks,

Pat

My mom takes glycoprotein 1 mg twice a day for secretions it works great

 

[patoyeah]

My mom takes glycoprotein 1 mg twice a day for secretions it works great

Thank u Gerrie. Can u get the name of that medication?

Glycoprotein is a type of protein, not the name of the medication

Thanks,

Pat

 

[vw-fl]

Hi Gerrie. My husband is taking Glycopyrrolate (otherwise known as Robinul) 1 mg twice a day for his excessive secretions. Did you mean to say Glycopyrrolate?

Thanks,

vw-fl

 

[patoyeah]

Hi Gerrie. My husband is taking Glycopyrrolate (otherwise known as Robinul) 1 mg twice a day for his excessive secretions. Did you mean to say Glycopyrrolate?

Thanks,

vw-fl

Hi, how is the Robinul working for Y'all?

Thanks,

Pat