hi all,
i m still on my two legs, difficultly and breathing ok
but i m slowly convinced in 10 15 YEARS replacement will be possible
before i refuse this idea abd though if i must be thraked to follow Mike
now i want to wait the longest possible and would accept trach if regeneration become possible in some year.
i red you can be tracheo for unlimited time, is it really possible? limitless?
how long with trach can we survive?
thanks
er

danke ENV
I wish very much you will have replacement and regeneration soon
will take some years but it isnt utopy no more, question of time!
it would be like rebirth!

Ask and ye shall receive.

I am 4 years into using a trake. Aside from the expense of hiring glorified babysitters (not to diminish the task, just to remove the fear) it's not difficult. A few simple rules about maintaining clean hands and daily cleansing of the stoma and you can go indefinitely.

I wasn't originally going to post my blog here but this seems relevant.
Nothing Vented, Nothing Gained.

---

-- Le Meilleur Vin Avec Les Meilleurs Amis --

The comment above is my personal opinion. I do not represent ALS-TDI

Brave people ro say the least.

We spoke to the very nice folks in Cleveland yesterday and the procedure -- including screening tests and surgery -- totals (wait for it) $55,300. Insurance companies are a little behind in understanding the purpose and the benefit to them to cover the procedure, but it sounds like some are coming around and starting to cover it. You just have to lobby REALLY hard sometimes, which is nothing new, I suppose. It does sound like a DPS could help a PALS retain a bit more function until other treatments come on-line.

My sister's just been trached three days ago. That or death. She's spent a horrific month at hospital waiting for the surgery while she was breathing heavily 24/24 with a lot of O2 on her vent. We all the family thought it was the end since it was her desire. "Please let me die peacefully, I can't stand this no more" said with the help of her IPad while one of us held the only hand she's able to slightly move. Besides she had a big sore on her nose beacuse of the mask. We all were afraid of the anesthesia because she was too weak, and the moment when they took her to the operating room was awful as she wanted a relative to stay with her wich is absolutely forbidden.

But three hours later they allowed some of us to visit her at the ICU where she was sleeping peacefully without the nasty mask. It was so long we couldn't contemplate my sister's face that we felt so happy (I have to say that my sister is quite beautiful, and it's not "sister's love". One of her hospital nurse, when he lifted the mask to wash her mouth said "damn! what a pretty face!").

Now, three days after surgery she's much more happy and calm. She's still at hospital and we hope next week she can go home. Meanwhile, her hospital room sometimes reminds me this since we are three sisters, two brothers, a pair of parents, four children, lots of cousins, aunts, uncles, nefews and friends, an only husband plus nurses and carers. Our hope, of course, is she can bear the illness till they found a cure and in the meantime making her impossible to desire death again.

Cristina

as i was in the Murcia hospital, for ten days during my stem cell trial, one thing impressed me in particular. i was in the neurosurgery service. my room neighbours, where all very well supported by familyy and friends, making rulment, turning for care, all ill man was all the day with at least five people in the room;
of course i never slept !
i hope courage to your sister and successfully recover one day;
i return tomorrow in spain Criscapelo
where do you live ther?

Hi Elysee, welcome to Spain. I live closer to France than to Murcia. I live in Basque Country, about 850 Km from Murcia and only 100 Km from Hendaye. My sister lives in Madrid, about 450 Km from my home and I drive a lot from here to there and back. On summer she likes to come to the north because weather is cooler, and we use to spend all summer together with our familys. I hope next summer she can come, because Madrid is too warm.

My sister in hospital has a room only for her even when it's a public one. If it didn't we of course would take much more care with the other patient.

Good journey and good luck. Keep us updated with the trail.

Cristina

My PALS been on Trech for three years. Prior to the Trech, she had lost lot of weight and struggled to breath. She looked ill. After Trech, she gained her weight back, and looks wonderful. ALS did didn't stop but trech made life a little easier. Mouth Suctioning (20-30 min) and Phlegm (30-60 min) removal is done as needed. If too much Phlegm builds up the ventilator alarm will go off. But, we can usually sense the need for suction long before alarm goes off. She is not able to signal so we look at her every fifteen minuet or so. It only requires suctioning two or three times at night. She sleeps well at night. Stays up all day. Yes, she loves watching movies. The portable vents allow visiting families etc. as needed.

Obviously, it’s not easy but over time one can get used to it. Everyone at home is trained in handling the vent, suctioning, cough assist, oxygen, etc. One person is always in-charge per shift. It is around the clock care with people assigned different shifts. Yes, communication is difficult but she talked with her eye movement and eye board. So, she gets her point across well. And, life goes on with everybody doing their normal activities as much as possible.

Mornings are a challenge but the best time for her. It takes two people to pick up from bed and put on chair for rest, bathroom, and shower. Man, that shower must feel good. We do it daily.

Body is an amazing thing. It reluctantly gets used to new things. In beginning it’s scary. But, it will get easier. We accept that we are fighting a horrible disease. We collectively intend to prevail.

If you have specific question about Trech, feel free to ask. Someone here has experienced the same and can share experience to solve the problem.
Warrior

Hi Warrior.

Seems my sister and your PALS are in the same phase. No movements at all, no eating (PEG fed), trached, no speech at all. But do you know what? it's not the worse phase. ALS can't steal her anymore. Life? yes she could die beacause of a cold or so, not because of her ALS. Her husband and her carer are trained to clean her trach. I'm still not but I'd like to.
She likes also the shower all mornings. Two people to lift her up. It's not easy because her home isn't converted yet. Her husband, an architect like her, by the way, hasn't enough time to work in it. They have four children and now my sister is like three babies more. Though they have people who help them it's never enough.
And you are right, it's a matter of being used. People get stunned whe they see their children asking her mother "can I use the Nintendo, mum? close your eyes if Yes"

John, I've got OSC, but I still daren't to administer it to her. Perhaps whe she gets stronger and completely used to her trach.

Cristina