Need advice on trache/Vent

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Jman37

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I have had ALS since 2009, and I am at the point of considering a trache and have a few questions. I have had a slow progressing umn dominant disease phentotype, however, I have been struggling with breathing problems for the last five years. I have weak but working arms, barely any bulbar issues, but my fvc is around 15 percent. My diaphragm isn't working much at all.I have been using a trilogy with niv for five years or so. I am now on it 24 hours a day, and I'm still struggling to breathe the last few months and it has been adjusted over and over again. I am barely holding adequate blood gases, co2 elevated, and sp02 on room air around 92-93percent. I have expressed this concern to several pulmonologist and even Emory ALS Clinic.

I want a planned trache as NIV is not adequately supporting my breathing anymore. Every doctor refuses planned trache until I go into respiratory failure, and I do not want to wait for this to occur. Is this normal? I believe I'm getting bad medical.advice, because one pulmo.even said I'm too weak for a invasive ventilation. I have studied the subject and read zero muscle is needed for invasive ventilation. What should I do, I can't get anyone to give me planned trache, and I'm not breathing adequately with low oxygen and raised CO2 levels. I have alot of brain fog in the mornings.

I have avoided clinics since diagnosis as to me they don't do much but monitor decline. Recently, went to Emory ALS C, and they didn't do s thing. I am tired of these neuros and pulmonologist. Anyone have any suggestions. I have planned to trache for years and I am not getting the care I need. Thanks, Jax new to forum not new to ALS.
 
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lgelb

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I'm sorry to hear of your progression. Of course, you are correct that a planned trach is best. I do not know what clinics are in your plan's network, but between Augusta University, Atrium, and Emory, it certainly would seem that a trach would be available to you, presuming you don't have any contraindications and have enough caregiver support. But there is always NC (Wake), TN (Vandy) and FL (lots), just to name other options.

Have you consulted the local ALSA? They should be familiar with who does what, and perhaps refer you to a trached PALS in the area who can advise you. What is your current tested CO2 level?

Best,
Laurie
 

Jman37

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I truly appreciate the reply Laurie. I have also been to Mayo, Clinic, Jacksonville, Florida. Honestly it was a horrible experience, the director Dr. Osscarson did not want to even discuss a trache and vent, just palliative care. Fortunately, and I am .not bragging I have really good medical insurance and can literally be seen anywhere, I wish all pals could be. I have a friend local who is trached and vented, but, done so when he went into respiratory failure. I have talked to many pals and it seems common in the southeast that most aren't trached until failure. In the Northeast it seems different to me. Seems like planned trache is common procedure. I have appointment with Shands ALS clinic later this week, I am hoping someone will do something. I have to look up c02 levels and I will.post, they aren't good though. If someone doesn't take action about this I don't know what I'm going to do.Sincerely J.
 

Jman37

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Hello, thanks for the replies, I appreciate it alot. I just had appointment with pulmo today, and once again no plan on how to help me. I had a blood gas draw and CO2 levels are too high, at 35, when maximum should have been 29. I am surely not getting the help I need. Pulmo suggestion is to use NIV until I go down. I cannot live this way, brain fog, horrible breathing, and feel terrible all day. On pulse oximeter, my sp02 is around 92-93 on room air, not very good to say the least. I know a trache is a big choice, but it's one I have accepted for years, I have been fighting ALS for well over a decade. I have been to Emory Clinic, Mayo Clinic, Jax, and a few months ago went to Duke Clinic. I have avoided ALS centers since diagnosis, as they seem to do absolutely nothing. I want a planned trache, not when I go down and am half dead. I have excellent insurance, and can go basically anywhere. It is so bad I may travel out of country to get trache. I am in a ridiculous situation. All I hear is that I wouldn't want to live with trache, etc., That is easy to say when your not the one dying of a terminal disease. I already have looked at costs, burden, etc. And feel up to the challenge. I would like to hear further suggestions. Thanks in advance
 

lgelb

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There are enough PALS trached in the US that I find it hard to believe you cannot get the procedure here if it would help. If you search here, you are able to identify PALS who have had it done and ask about their centers.
 

Jimi

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I was on niv 24/7 for 3.5 years and paralyzed from the shoulders down prior to getting a trach and feeding tube September '21. Got a referral to the a surgeon and it was done. I was in Los Angeles and with UCLA. Dr. Michael Holiday. Surgery went perfect with no issues. I would totally recommend him. I was in the hospital for two weeks. The pulmonologist at the hospital after the surgery was my problem. She refused to adjust the vent settings for the first five days. Once I got them to adjust it was fine. I'm not sure why nobody wants to do for you. You are absolutely right, they are not the ones facing death. Planning is much better than waiting for failure. Sorry for your suffering. Jim
 

A1faast

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I am currently sitting in ucsf icu with my wife who just had a trach installed last wednsday, they are great here and have a fantastic als program. She was diagnosed here, had a feeding tube installed here and now the trach, every single time weve been here they have treated us great i have nothing but good things to say about ucsf. Immediatly after her surgery the respiratory therapist was involved adjusting and changing settings until it was fine tuned better than when we came down with the mask,i guess what im saying is you shouldnt have to go out of country and you should not have to wait for a near death experience to have the procedure done,my wife was on niv for a few months until it turned 24-7 then they set it up and got us in with in a month, but like i said weve been dealing with them the whole time,im sorry you are not recieving the same level of care we recieve here,i wish you the best
 

Aziz_Khattak

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Has someone implanted Diaphragm pacing system for breathing difficulties. Is it working well. Can it be recommended for other ALS patients having breathing difficulties.
 

lgelb

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It was a failure, unfortunately. More often than not, their difficulties worsened. This goes back to the idea that you can push the muscles to work harder (e.g., with electrical current or overly-high BiPAP settings) but if there is not enough there to work with, you only accelerate their lack of usefulness. You can walk or jog for a lot longer than you can sprint.
 

KimT

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I have some PALS friends on Facebook who had trachs done. If you're on Facebook, PM me and I can give you some names to contact. I'm pretty sure they were all in CA or NY. If you have the money and support I'm not sure what the problem is. I know Mayo Clinic, Jax, and it doesn't surprise me. Dr. Boylan retired and the guy they have now is very different.

Did you see Dr. Bedlack at Duke? If you email him, he will answer. I can't imagine being refused for wanting to live. I know you've done your research so, frankly, I'm shocked at the responses you've received.
 

KimT

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OK, Go on Facebook and message Catherine Scott. She is in CA and was slow progressing but got trach a couple years ago. She's from a FALS family and her son, Anthony, also has ALS.
You can also try Mike Pulley - University of Florida in Jacksonville. He's part of the Shands system but runs the Jacksonville branch. He might know.
 

Jman37

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Thanks Kim, I knew Dr. Boylan very well, his replacement Dr. Osscarson is in my opinion a horrible clinician. Yes, I saw Bedlack at Duke and to be honest very disappointed, I thought he would be more aggressive then he was. I saw Dr.Pulley many years ago. It seems to me clinics in Northeast and out west handle trache better. I live in a Georgia but also have a place in Manhattan. I was diagnosed originally by Beth Israel in Manhattan. I called up Dr. Stephen Scelsa and he told me he would get me trached, it is just a long trip for me to make and very hard for me to do. I have Facebook but lost my password. I am not sure what to do. I have the necessary resources, and great insurance to trache, and planned to from the beginning. I will try to get back on favebook. Thanks for your suggestions. Things are getting so bad I may end up in emergency room again, which I want to avoid at all costs. My nurse has been doing blood gas draws, my c02 is the problem as it's been at 34-35, high normal on scale is 29. I'm just very frustrated to say the least. Mayo, Jax won't trache until failure, and neither will Emory. I wish Dr. boylan was still there, he would have handled this already. Appreciate replies.
 

KimT

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I'm so sorry you've been getting the runaround. I understand about the trip to NYC but, I'm assuming, the aftercare would be wonderful. It's not like you're moving forward without careful consideration. I wish you the best.
 

Jman37

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Thanks Kim, I got a scheduled appointment to see pulmo at Mount Sinai Beth Israel Clinic. They have seen records and stated they will plan scheduled trache very shortly after examination. Luckily, I got an appointment for next Wednesday. Traveling will be so hard, but, worth it in the end. I will keep everyone posted. Appreciate the help a ton. -J
 

wishmobbing

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Glad you can move toward with this in NY and got an appointment so soon!
 
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