The hospital and my PEG

[Jeanau]

I had my PEG inserted on Thursday morning and came home from the hospital the next day. That 30 hour stay taught me some important things and made me really wonder about and rethink my approach to my ALS.

First of all, no ALS patient should ever be in a hospital alone. We're simply too vulnerable. Though the staff was extremely kind (except for one respiratory therapist) they didn't have any understanding about my limitations and ALS in general!

I went in to get the PEG done now because my breathing is deteriorating rapidly. But, I'm still eating regular food (with some modifications). Immediately they wanted to arrange my 4 feedings a day. They ordered the kits to be delivered and then told me how much each feeding would be etc. etc. etc. Three times I tried to and my sister and caretaker explained my situation. I was getting the PEG for later use. We were getting nowhere. Finally, I did a time out motion with my hand and stopped everyone from talking. With my raspy,weak voice I reminded everyone that I was the patient and when I used the feeding tube was MY decision. I think I surprised them, but they agreed.

When I was laying in bed later and unable to get comfortable I had some disconcerting thoughts. Like a flash it hit me. Why was I doing things to prolong a life that I wasn't sure was worth living? I know many people on this forum won't agree with me about this, and I respect that fact. But when I need to be carried to and from the bathroom, in and out of bed, can't talk or eat, and can't breathe without machinery do I even want to live?

I'm a Christian and I've tried hard to live a good life but I'm struggling with this fundamental question. Is is ok for me to decide when I want to say "enough" and leave this earth for whatever is next? 30 hours in the hospital changed my life and I have a lot to think about.

As far as the surgery it went smoothly. I'm left with soreness and bruising, but not unmanageable pain. Thanks for your encouragement and support.
Audrey

 

[KimT]

Audrey,
I just want to say I understand your concerns and will give you my prayers and support whatever you decide whenever you decide it.
Kim

 

[Nikki J]

I am glad that you are home and safe. I agree hospitals are difficult places for PALS.

I have, as you may know, strong feelings about feeding tubes. Not necessarily as a life prolonging measure though they may be, but as a comfort/ quality of life issue. My mother's directive was no feeding tube. As her swallowing diminished feeding became more and more difficult and time consuming and was horrific to watch. My sister always intended to have a tube but delayed far too long and we went way down the choking agonizing feeding times before she finally consented.

You do not have to use your tube if you do not want to but having it there gives you the option of using it for meds, for fluids , for supplemental nutrition ( saving you energy for things that may be important for you) or maybe all your nutrition. You can also say no to any or all when you want.

 

[Scotiaspirit]

As I contemplate my future with the progression of this disease, I wrestle with the thoughts of how far I want to go along, such as the breathing tube and feeding tube. We have a support group at the local ALS Society office here in the city which I live, and after talking other PALS, and their spouses, they have actually put me more at ease about these things. The future is paved with so much uncertainty, and trying to think ahead to be prepared for what happens next is no easy exercise. Questions of rather to move to another home with everything on one floor or not etc. I have an occupational therapist from the ALS clinic scheduled to come to my home in the coming weeks, sometime in mid to late February to review options. Each PAL that I have met, their disease is different in the way to what parts of the body is disabled, the way the symptoms began etc. It was a real eye opener and each PAL that I met, is a beautiful soul.

Jeanau, thank you for sharing your experience, there is so much to learn and consider. I am still contemplating, just how far I want to carry on living with this disease, where is my line of wanting to continue fighting on, or give in and succumb to the disease. Thankfully, I have a very loving and understanding wife who gives me the will to keep fighting on and wanting to make the best of a situation whil e living with a terminal disease.

 

[Scotiaspirit]

i was unable to edit my last post, and wanted to correct something, which is in capitals: As i contemplate my future with the progression of this disease, i wrestle with the thoughts of how far i want to go along living with this disease to when the day comes when i will need the breathing tube and feeding tube. We have a support group at the local als society office here in the city which i live and during the january 2016 meeting, and while talking to other pals, and their spouses / caregivers, they have actually put me more at ease about these things (feeding and breathing tubes). The future is paved with so much uncertainty, and trying to think ahead to be prepared for what happens next is no easy exercise. Questions of rather to move to another home with everything on one floor or not etc. I have an occupational therapist from the als clinic scheduled to come to my home in the coming weeks, sometime in mid to late february to review options. Each pal that i have met, their disease is different in the way to what parts of the body is disabled, the way the symptoms began etc. It was a real eye opener and each pal that i met, is a beautiful soul.

When i was first diagnosed with this disease, i told my family members that i would not consider even having a feeding/breathing tube inserted. It was after talking to other pals who indeed have had these tubes now, that they put me at ease, and i would definately consider these options when the day comes as long as i feel i can have some meaningful quality of life. Fear is the biggest obstacle when facing uncertainties.

Jeanau, thank you for sharing your experience, there is so much to learn and consider. I am still contemplating, just how far i want to carry on living with this disease, where is my line of wanting to continue fighting on, or give in and succumb to the disease. Thankfully, i have a very loving and understanding wife who gives me the will to keep fighting on and wanting to make the best of a situation whil e living with a terminal disease.

as i am fairly new to this forum, i am still trying to find my way around this forum. Thanks y'all.

 

[ShiftKicker]

Audrey- I'm glad you are home and on your way to healing from the surgery. Thank you for your honesty and openness with regards to the PEG and your future expectations. I am glad you were able to advocate for yourself- that is an extremely important thing to remember. YOU are supposed to be in charge of your care, but others need to be reminded of that.

 

[affected]

Audrey, thank you for being so incredibly honest.

I would like to say a few words, just from my point of view after my experience with Chris.

When Chris was leading up to the peg insertion I examined myself as to what I would do in the same situation. I felt that if it were me I would not take a peg, for similar reasons to you - would I want to prolong this?

As the months passed, and Chris declined rapidly and his ability to swallow was extremely poor, the ability to get water and meds into him became a real eye opener for me as to the benefit of the peg. In his last weeks, in particular, that ability to get meds into him became so critical. By the time he passed, I had completely reviewed my personal position on the peg and realised that it had made the end of his life quality so much better I just can't describe it in words. His passing was so peaceful.

I don't think it prolonged his life by a huge amount of time, though it did prolong it some. (surely some weeks, maybe several months) I do wish he had gotten it earlier as he was so dehydrated and in terrible starvation mode that this caused it's own issues.

I'm not religious, but I would suggest this. Allowing a disease to take its course, and providing comfort to a person is humane. This is nothing like talking of suicide, even if you refuse any measures that could prolong life, that is nothing like saving a life when we are talking ALS. If a religious god were to demand 'life at all costs' this would be a cruel god indeed. I don't think you could possibly read this into your religious faith. You believe in a life afterwards, so this life is just a phase or stage you are passing through. No humane person could tell you that you must fight to live as long as possible regardless of how cruel that life is from ALS.

Please just rest a little now, let your stoma heal up, make sure you keep it flushed so that it is in great condition for when you do start using it. Then use it as you see fit, it is your right, and you have given yourself options here. Many hugs xxx

 

[scaredwifetx]

Audrey- You ask if it is ok for me to decide when I want to say "enough" and leave this earth for whatever is next"?

Right before I signed on and read your post I had some very sad and helpless hours with my mom and was in tears before even reading your thread. My mother took a turn for the worse yesterday and today. She can no longer walk, is able to remember very little and is having problems breathing. She broke my heart when she started crying and said she did not want anyone else to see her that way and was ready to go. I agree with her and would do what I could to help her go but trying to get her best friend and my sister here to see her one last time. Even then I am not sure how to help her and stay out of jail.

She does not have ALS and my husband is the one with that. My point to posting on your thread is that you do have the right to say when enough is enough. The family will be upset either way because of their loss. We have no idea how the victims of these diseases feel day to day and everyone is different with their choice of battling.

My heart breaks for all of you as it does for my mother and husband and I truly do not want to watch them suffer any longer than THEY want to. Before anyone thinks I am saying anything about PEGS or any other life substaining devices I want to make it very clear that I believe it's an individual choice and I respect that.

Prayers for you Audrey and your family. I am happy that you are recovering ok from the surgery.

 

[lgelb]

Deb,

You ask how you can help your mom and "stay out of jail" (for context, I will remind others that she has terminal cancer)-- and you mention she has trouble breathing. I believe you mentioned you were bringing her home?

If so, air hunger is a common indication for morphine, as we have discussed often, and if you treat her to her maximum comfort level after she has seen the people she wants to see, she should pass in peace. Of course, you should have a copy of her advance directive and health care power of attorney. PM me if you have any questions.

Best,
Laurie

 

[BlueandGold]

Audrey,
This is your journey and although all pals are taking that same journey, all of us are likely led down different roads that will lead to the same destination. I've gone back and read your previous posts, all the way back. I know that you have had very good days and you have also provided much support to others on this forum.

Inevitably, as our progression speeds up it is very difficult not to tend to want to begin making decisions based on what we know is "coming" rather than where we are right now. For me Audrey, my opinion only, right know I'm making my decisions based on where I am each day. I am not looking down the road. My breathing is rapidly declining, from 75 to 68 to 53 in 5 months. I have always said I would never opt for a ventilator, however today I am still mobile. I can still walk, still have use of my right hand and arm, can bathe myself and do my own tube feeds. Having said that, if my diaphragm would continue to rapidly deteriorate but my mobility remains decent, I will probably opt for the tracheotomy.

Life sustaining measures with ALS are so very personal and we all have to look at our individual situations. For me, too many things on my bucket list for me to just let nature take its course. I don't want this disease to make my decisions for me. Yes we get depressed. Yes we get despondent as we lose abilities. But we still have good days with friends and family. We still smile and laugh (sort of) at funny stories. Look for those Audrey. Seek them out.

I can tell you my hospital stay nearly took me out. Several times I was ready to call it quits. But I think it was the shear trauma that I went through. As my body began to recover, so too did my outlook. So you hang in there Audrey. I know you are spiritual. Seek guidance. There may very well be a whole list of things that he wants you to complete before your time here is done. It might take years!

My very best to you Audrey,

Vince

 

[tripete]

Audrey, this is a subject I have written on before - shortly after being diagnosed. Having said that my opinion has not changed. I will not have a PEG or Trach and I use my BiPap only to sleep (which I do not get much of). At my last clinic 4 months ago my MIP had dropped to "critical" according to the doctors but my FVC was not as bad. The doctor does not expect me to make it to the fall of 2016. I am fortunate that I can still walk and use my hands and voice (though it gets very weak due to the breathing problems). They suggested using my BiPap more. I asked if this would extend my life they said yes - some. So I choose not to.

I do not want to extend this way of living and I do not want to become one who needs everything done for him. This is not suicide or giving up - it is letting the natural progression progress.

I have had for over a year now, been in what I would call 7 out of 10 pain, like after to hard of a workout the pain you feel. It has been very trying and lately I have been considering some pain medicine (I currently take no meds) but am not sure, and probably will not - I want to keep my mental faculties as sharp as possible.

As you are aware I am also "religious". I believe the number one thing Christianity teaches is that our lives are about serving others. I will do my best in my life and death to try and serve my wife and kids. For me that means not prolonging the inevitable and making myself completely dependent upon them. I read the pain that CALS go through, I will try and minimize this as much as possible. I avoid complaining or talking about myself and my struggles. Instead my goal is to focus on them and their struggles and how I can help. This is how I choose to try and be remembered. Each of has a different path and different decisions.

I considered the PEG because of what Nikki said about not wanting my loved ones to see me choking etc.. I think that is a very valid reason and can be good. For me though in the end I have decided no. In the end it comes down to why you choose to do what you do. This is a personal choice, I have told you why I have made mine. Each of has to decide "why" we will do what we do.

 

[chally]

Hey Audrey, glad your peg went well and good on you for sticking up for yer self! Hope things settle down for ya and ya git into a rhythm.it's amazing how we all digress at different speeds and different ways. For me, I am not fighting a fatal disease I am dancing with it. I plan to live each day and live in the moment. I am in PWC 80/20 now but still git out and try to be of service to others and I do this for selfish reasons,( so l don't sit on the pity pot) . Some one else said it here " somebody else always has it worst off" . I am happy for Audrey. Love ya chally

 

[texastc]

Audrey
So glad your peg install went good. You will be glad for it after the soreness goes away...makes meds really easy. I decided after Tracy had had hers for a while, that we all should have one...kinda. Makes lots of things really easy. Really good if you like the effects of wine but not the taste!
Your story breaks my heart because I know what your are going thru...in your mind...kinda, as well as a CALS can from our viewpoint. To answer your question...YES, It is always your call...so long as you are capable of making the calls (Healthcare decisions). We hate it as CALS...that decision that we know is yours to make...because we know that it will mean you will be leaving us for a while...but we also understand what you are going thru, and how bad it stinks.
And yes...hospital stay for a PALS is totally different. You should never be alone if possible...without your CALS to run interference...and tell them what you want and need. I just took over when we went...they all kinda stood back in awe...because I gave the meds...I fed the meals...I spoke for her as well as making them all go thru me anytime they wanted to do anything, period. Once they figured out that I knew more than they did about caring for her...they supported me in every way.
Keep your head up. Hope this helps a little.

tc

 

[manding]

Can you explain why you got PEG when your most pressing problem was breathing? Or did I get it wrong?

 

[Jeanau]

Because my breathing has deteriorated to 50%, my doctor wanted me to get it installed while I could undergo a anesthetic procedure with less risk. I will need to begin using it soon. Right now, I'm using it mainly for water and flushing.
Audrey