Going for the Vent

[DreamsEnd]

Hey Max and Mike,
My PALS (submariner) called you guys "targets".

S.

 

[lgelb]

Re Diane, venting and QoL, it should not be overlooked that she still has enough hand movement to use a computer, and the ability to speak. The same is true for GB.

I admire Diane and her husband's adaptations tremendously, but as she points out, she has relatively slow progression, a retired spouse and an additional in-home caregiver, and breathing is not the only measure of quality of life. Each person and loved ones has a unique decision based on what life is like when breathing begins to require more than NIV. The decision is, in part, whether it is desirable to continue that life for the time being, though the commitment to do so can be ended later.

So yes, some PALS do have good quality of life on vents, but there is a whole range of variables going into that, far more than the vent itself.

 

[Grumpy'sWife]

GB, hope you are doing well. Just wanted to check in on you and let you know you are in our thoughts!
~Kaye and Grumpy

 

[AKjo]

Getting a little better each day. Still takes two people to get me out of bed. Bed sores always a threat.

Am in pwc for first time in 3 days.

Thinking about you, Graybeard - hoping things are getting easier.

Hospital policy probably dictates that two people be present when moving someone with a hoyer or overhead lift or whatever. When Gary was in the hospital there were 3 to 4 people in the room during transfers, and I was not allowed to help. I learned a lot about what NOT to do by observing! At home it is just me and the Voyager overhead lift (we have a hoyer also, but it is not nearly so user friendly) that I found on craigslist. The key for me is to never be in a hurry and to be aware of the ventilator circuit at all times.

Also wondering if you have an inline "closed suction system" in your circuit. They call it a Ballard here. Makes the job a lot easier for the caregiver.

Keep getting up in that chair! It makes you feel less sick and more normal to be out of the bed, even if it is exhausting. Hang in there!

 

[Graybeard]

been a miserable week. BP out of control.

 

[MaxEidswick]

ALS sucks.

 

[4tloml]

Hi there, GB. Just letting you know we're thinking about you. I so hope the BP gets under control, as well as all the other parts of this transition into venting.

Hugs.

 

[swalker]

You are in my thoughts and prayers Graybeard.

Steve

 

[Diane H]

been a miserable week. BP out of control.

Sorry to hear that you are having such blood pressure problems. A little something to distract you from the real purpose of you hospital stay? I am concerned that the they may be so fixated on blaming the trach/vent for the problem that they may not be evaluating the problem objectively. Perhaps your breathing problems were marking a blood pressure problem for quite a while. Several categories of BP meds to try. Even a scan for a small benign tumor in one adrenal gland might be in order. A pheochondrocytoma is rare but it will cause intervals of very high blood pressure.

 

[AKjo]

Thinking about you, Graybeard, wishing you could see the glorious sunny day outside the window. The leaves are just beginning to swell in their little buds, and in a couple of weeks we'll be seeing tiny green leaflets covering the trees. Hope your blood pressure is under control and you can get out of the hospital soon. They are a great place to get sick. Keep us updated.

 

[Diane H]

surgery was easy; recivery is hell, suctioning the tube is like water boarding torture, but quickly not getting so bad. va has been great. Two days ago I was regretting vent. Now better.
Vented emergenct surgery 25th.

Air hunger was the main discomfort the first 8 days, until I realized what it was, and complained.

It doesn't sound to me as though the trach and vent plays into Greybeard's decision as much as his out of control blood pressure that kept him in the hospital for so long. The hospital is just not conducive to recovery much less getting back to normal. I am so sorry that the whole experience has been so overwhelmingly miserable for him but so thankful that he has the choice to stop the vent and be able to slide away without pain or anxiety or air hunger. Greybeard, you gave it your best efforts and you will be missed but free.