Trach when?

[Cherry]

Hubby was diagnosed about six weeks ago, P.B.P, and since I've read several posts and bits off the internet regarding getting a trach. I wondered if anyone could enlighten me? Hubby thinks his breathing is o.k although the neoro said it wasn't too good. What he actually meant by that I don't know, as he didn't give hubby any indication of what it was. I know Joel c has written a few posts on the subject and says how pleased he is with his trach, but when I brought it up with the Macmillan nurse she wasn't very positive about it. I understand it is normal for the medical profession to be so negative. Can anyone tell me when he should get a trach? I know this might be a loaded question and difficult to answer but we don't want to wait too long and I must sort my head out, and also be prepared instead of wishing we'd done things sooner rather than later.

Cherry.

 

[icecreamlady]

Cherry-

I have been wondering about them myself.. I sent Joel and email reguarding getting one too. I think everyone is different in their beliefs, and at what stage they are at in this life. I am 45 and have two daughters (20 and 11). I have weakness in arms, throat weakness and breathing problems. At this time, I am on Bipap/ Avap at night and 4 hours during the day. I am tired of feeling like a scuba diver or an astronaunt with the face masks. My doctor has ordered a new machine called Trilogy 100 its a Avap/ vent..its only 11 lbs and a lot more portable...I am planning on asking him about a trache. I am still mobile, but the breathing problems limit me... I want to enjoy my girls, watch them graduate, get married and have kids...I want to see my grandkids...I want to spend time with my man, and live , love and laugh.

I know that I am not the normal case. My disease has hit my resportory muscle, and stomach muscles 1st. I am going to get information from a lawyer about pulling the plug on myself when I am ready. I want everything in writing, I am going to have my wishes written down and know by my family. I believe that having things done and ready prior to need, is really a huge help to our families. This disease is harder on our family and the people we love than us.... I am going to make it as easy for my family as I can. I know when my time comes, I will be going to see The Lord....I may be held up at the door, to answer soem questions, but he is a forgiving God. That is a comfort, in it's self..

Nurses and doctors are hear to help us, and answer questions. The nurse you spoke about, my have a different opinion if it was her husband...

I may have a disease, but it doesn't have me... I LUGG....I do..

Lora

No Fear --Just Faith

 

[joelc]

One of my greatest pet peeves are the people in the medical profession who tell everyone that having a trache and vent is not a desirable thing and try to discourage people from getting one. They have never had one so should not be giving advice on them.

In the UK there seems to a particularly bad attitude towards them, it seems to be a bit better in North America. But I still ran into this negative attitude and had to fight to find a doctor who would do the trache. It have since found a group of wonderful medical people.

When to get the trache? Quite simply - when you get tired of using a bipap and putting up with a mask. I recommended to Lora that she start to make arrangement to get a trache and vent. She does not like the mask and has to use it several hours during to day as well as all night. A trache and vent is so convenient in comparison and highly portable. It is great not having to wear a mask.

If you want something more tangible then when your FVC hits 30% it is time. The trache and vent is easy, don't believe your medical people. It gave me my life back - Literally!

 

[Cherry]

Thanks Lora and Joel. I've read that assisted ventilation (N.I.V.) isn't always possible for a person with progressive bulbar palsy due to secretions etc. At the moment my husband's breathing seems fine, and he still plays a spot of football! I've brought the subject of a trache up a couple of times, but don't really know if he'll have one when the time comes. One thing the nurse mentioned was when someone has a trache they can get 'locked in.' I've read this as well. Any advice on this?
He does fall over, but not often. His hands have been getting weaker but he has pruned all the trees and bushes, which he burned on Bonfire night (Nov. 5th). He does get tired but the poor thing only got cleared of throat Cancer a year ago so it seems like he's been ill for ever. He's managed to put on a few pounds-up to 137lbs, but he's six foot tall.

Best wishes, Cherry.

 

[Cherry]

By the way we were also told that only hospitals have bipap!

 

[joelc]

You don't have to worry about being locked in, with the technology available to us today that is not an issue. I don't know what the policy is in the UK but here you can have a bipap or a vent at home.

 

[Cherry]

There is ventilation here but not bipap for home use, or so we've been told. Just been on your website and read out to hubby about traches-he gave me a kiss! Think It's a WONDERFUL site and I'll refer to it often to give me hope. I was feeling so ill today due to worry but you always cheer me up. Don't know how much opposition I'll get, a lot I can imagine, but now I'm prepared for a fight! Won't get any (or much) family help as my sisters don't live nearby, but hoping when the time comes the N/H/S will be able to provide a carer for at least the first few weeks until I get used to the trache. We can't afford to buy it though so hoping it will come free.

Thanks, Cherry.

 

[Cherry]

Just found this on N.H.S. website. A snippet.

Treatment choices

For some medical complaints a doctor will recommend a single straightforward treatment. A course of antibiotics for an inner-ear infection, for example.

But for many conditions there is no single treatment. Instead, you and your doctor will have a range of options to choose from. In this case, what's best for you will be influenced by a number of factors, some medical, others more personal.

For example, you may need to consider the benefits of one or more drugs against their side effects, or choose between having an operation that has serious risks and living with the discomfort of the condition.

When faced with complicated and often frightening health issues, it can be difficult to remember that we have a right to be involved in decisions about our treatment and care. NHS doctors have a duty to inform us about the options available and will advise us what they think is best. But it's you, the patient, who must decide whether a treatment is right for you.

Making the most of treatment choices requires careful thought and research. You're more likely to make the right decision if you learn more about the options available to you and the experiences of others.

Sounds promising, let's see if they keep to it.

God bless, Cherry.

 

[joelc]

I wish you good luck!

Please keep us informed as you “fight" the opposition you will face.

Let us know how we can pray for you guys!

How can we help?

 

[Danijela]

NIVs are available in the uk for home use and I know of many uk pals who have one. Provision can be patchy, so dependant on your pct.

As for trach/vent scanario you will find the situation very different in the uk. I have only come accross two uk pals on the past year who have trach/vent. Practice differs greatly to that in the States so I suggest you bring
the subject up earlier rather than later with your healthcare providers. And keep us posted. Good luck. Dani

 

[joelc]

NIVs are available in the uk for home use and I know of many uk pals who have one. Provision can be patchy, so dependant on your pct.

As for trach/vent scanario you will find the situation very different in the uk. I have only come accross two uk pals on the past year who have trach/vent. Practice differs greatly to that in the States so I suggest you bring
the subject up earlier rather than later with your healthcare providers. And keep us posted. Good luck. Dani

Practice differs greatly between the US and Canada as well. And it varies greatly between Canadian Provinces too. I am fortunate living in British Columbia as they have a few programs that are unique which makes having a trache and vent easier to have.

 

[ctk56]

If your husband is still playing a "spot of football", then maybe the need for a trach is not immediate. My FVC is 30% AND I get short of breath putting a shirt on, but I don't have a trach or use any breathing assistance during the day. That is just me and I respect that ALS is different in every patient. I have had ALS since 1995 and worry about whether to trach or not. It is a major concern for many ALS patients but no need to get too far ahead of the disease. (smile)
Perhaps get a Pulmonary Function Test from a pulmonologist who knows about breathing issues caused by neuromuscular diseases (vs. a pulmonologist specializing in lung diseases). That way you will have a baseline to see how your husband's lung capacity is progressing. In the US, the first step in addressing breathing issues is typically using a Bi-PAP machine at night in the home.

Respiratory issues are discussed at this web site:

Chapter 3 - Respiratory Issues - ALS (Amyotrophic Lateral Sclerosis) Caregivers' Guide| MDA's ALS Division

I agree that the medical profession is unnecessarily down on trachs. From what I know and read, many PALS have a high quality of life. In the US, an issue is the cost of home health care needed when you are on a trach.

I am currently learning about non-invasive ventilation that seems another option that is not widely known in the US.
For a long video on the topic, see: UWTV Program: Non-Invasive Assisted Breathing

hope this helps and good luck

 

[Cherry]

Thanks everyone for your responses. I looked at the website on respiratory issues, which was very informative.

Best to all, Cherry.