Wellness: Patience or Passionate?
The below is an occasionally updated special area about my health.
22 November 2016: Last night, air pressure behind my right eye
Here is the latest news about challenges fitting my bi-pap mask without a leak. Most nights the mask fit lasts about three or maybe four hours, and then a leak begins.
We have had two knowledgeable folks from our medical supply company, Quest, over this past week. They have tried to train us, and they have provided some other equipment, such as a slightly larger and largest fit.
A few days ago, the small mask seemed to lead to a hurt nose, so I used the medium fit.
Last night, I would say was the most challenging. At first, the mask seemed to fit. But at about 1:30 am, I felt air pressure build behind my right eye. This kind of air leak behind an eye has happened before. I woke up my wonderful partner, Debra, even though I know we both need to get our sleep. However, I also need to address the small leak developing behind my right eye, this is uncomfortable.
Communicating the details about this kind of leak is difficult, plus I am not exactly sure what the fix is. Today, I will phone Quest, and I believe the owner will come here this afternoon. My home care worker can video his suggestions. At the same time, our beloved cat Bongo is in the vet hospital, and we expect news this afternoon.
And that is a brief update. Thanks for listening, if anyone out there is reading any of this. Well, putting this into writing helps me communicate the challenges.
15 November 2016: My quest to stop mask leaks in my bipap
For the past couple of weeks I have tried to use a mask and bipap machine to assist my breathing at night. Earlier this Fall, I did two sleep studies that showed I would benefit.
Unfortunately, the mask is not fitting well, and every night there are leaks every few hours. Because I am a quad, my wife has to fit the mask on me. It is unfair to her to wake her up a few times a night to rearrange the mask. Also, no matter how she rearranges it, in a few hours it seems to leak again.
Yesterday, I phoned the medical supply company, Quest. However, apparently leaks are fairly common, and the company uses a website, MyAir, to try to provide technical assistance. In other words, I just got a one-way email.
Here are points about my mask leak problem. Since I have worked in disability advocacy for more than 40 years, I can make a peaceful noise. No matter how experienced we are, it seems that those of us with extreme disabilities need to keep making these peaceful noises!
- During the middle of the night, when the mask causes discomfort, I have tried to arrange it with my disabled arms, but this is usually impossible. So I have to wake up my wife, who is often working the next day and needs her rest.
- When Quest sent a friendly person to deliver the mask and bipap, I do not remember being measured. Their website shows someone being measured first for the mask.
- During my sleep studies, I had to wear a mask. I had no problem. I have a call into my sleep clinic to find out the name of the mask, but so far they have not found that.
- As I mentioned, Quest provided a website, MyAir. However, I have viewed all the videos and browsed this site, but do not see solutions to my problem.
- Let me briefly describe how bad this can get: After a few hours, a leak can develop near the top of the mask, usually to the right of my nose. If I ignore the leak, air can actually bubble under my eye. Have you ever had that feeling? An air bubble under your eye? It does not feel good, and I sure would not want to do that a lot. I would be concerned that my eye would be hurt.
- I have a head size that is bigger than most, I wonder if the size of the mask is an issue.
- I have contacted my general practitioner, my sleep doctor, my sleep clinic, and even my acupuncturist about this challenge. Today I will contact Quest again and ask for a face-to-face consultation to address these issues.
- Another solution that I have considered, is that my sleep doctor gave me two different medical supply companies. While Quest has been friendly, because this might impact my health and the wellbeing of my wife, I may need to go to the other company: Norco.
14 November 2016: My goal of finding a good alarm
As a quad, I am very fortunate to have an amazing wife Debra, and so in the middle of the night I can turn to her for help. But what happens if Debra is, for example, in another room, or if she is ill? Starting this fall 2016, I have a mask on at night to get air from a bi-pap machine, so this complicates my triggering an alarm.
Over the past few years, my arms have gotten a little stronger, so I could elbow a button and at least be able to reach emergency help, I think.
If you have any suggestions, please contact me at email@example.com.
August 2015: Overcoming Pneumonia
Updated 14 September 2015
Background about my Breathing
Because of many years of arthritis (ankylosing sponodylitis), my chest area is impaired and my lungs function at less than 30%. So for many months my lung specialist doctor and I have agreed that if I develop a cough or similar symptoms, we will act quickly and assertively.
In August 2015 I did indeed have a lung problem start, and so here is my updated chronology, from most recent to the oldest post:
- It has been more than three weeks since the start of my cough. Today, 14 September 2015, I can say that I have overcome my pneumonia. I recline with no problem. My only cough is maybe once or twice in the morning. But now I do not want to rest. Having gotten a taste of this problem, I want to prevent it from happening ever again. I am doing a nebulizer each day. I am supposed to also get a cough assistance device soon. Any other ideas for prevention are encouraged.
- Day 15 of my cough, 5 September 2015: While I completed my course of antibiotics a couple of days ago, my doctor pointed out that the impacts of this powerful drug last until tomorrow, so I am hoping for even more improvement. I slept through the night and have been up for a few hours today, with only a small cough when I recline. While that is nice, having totally clear lungs would be better. I hear that even if the antibiotics do their job, symptoms of pneumonia may last for about a month. On another front, a therapist will deliver my nebulizer in a few minutes here. Yea!
- Day 14 of my cough, Friday, 4 September 2015. My breathing is the best it has been and my antibiotic course is done. But when I recline I get a small cough, that goes away when I do a forward weight shift. So I am still a little worried, but I saw my lung specialist and he gave me a lot of info. He looked at my x-ray and pointed out that my pneumonia was actually pretty serious, especially given my pre-existing challenges in the chest department. The doctor prescribed a combo of nebulizer plus cough assistance device four times a day. If I get worse, the doctor said that I am to make the decision about going to ER; he will look into special paperwork so that an ER visit goes more quickly for me, if I need to go back there. Hopefully, I improve, in which case I see him in about one month for a follow up.
- Day 10 of my cough, Monday, 31 August 2015, the good news is that my lungs feel clearer than since this problem began. However, when I recline I still have a little bit of raspiness. In the big picture, my wife summed up, “We need to be more demanding about health issues, without being aggressive. Your lung problems need to be nipped in the bud before they get worse.”
- Day 8, Saturday, 29 August 2015, briefly, the good news is that as of today, I am generally okay when I sit upright. However, when I recline, I quickly become gravelly.
- Day 6, Thursday, 27 August 2015. My wife Debra and I spent the afternoon in the ER and after six hours (it was determined that I was not in immediate danger, so it was quite the wait) I got a diagnosis of pneumonia. They gave me a third antibiotic to replace the first two and sent me home.
- Day 0, Thursday, 20 August 2o15, I had about twelve hours of a stomach problem. That went away, but it left a cough on the next day Friday.
The main thing, in general, we need to know is what else should be done beyond antibiotics? I do not need dozens of home remedies, but it would be nice to have a few good techniques to help my recovery despite my paralysis. For instance, because of advice from a homecare worker, I do my weight shifts in a forward position instead of reclining. During my leaning forward, this is a good time to use a hand-held electrical massage device and thump on my back with cupped hands.
We are doing a few other things like that:
- my special air bed has a vibrate function that my wonderful wife discovered and I use that every few hours in the morning when I wake up at night just before I sleep.
- for a few years I have used an an incentive spirometer, and I am now re-starting it regularly
- When I need it, I get an assisted cough, sometimes known as a quad cough, to help me breathe more clearly; Debra my amazing wife is the best at this because it involves timing and coordinating with me
- I am drinking Gypsy Cold Care tea, Breath Easy tea, and lemon juice in water
But during this whole experience, I was surprised by how we had to cook up these other approaches mainly ourselves. Our doctors and therapists are nice, and to be fair this is a bit complex (for example, the incentive spirometer was recommended by a couple of my physicians), but our extended team, such as a wonderful volunteer who was an ER nurse, my wife, my super homecare workers, etc., have come up with several non-prescription ideas.
The first two weeks of my pneumonia, I worked with four “M.D.” folks: My lung specialist, my general practitioner, my physiatrist, and the Emergency Room doctor. During these first two weeks, I have seen only the ER doctor face-to-face, but the other three have given me brief messages over the phone via their staff. I hate to be so cynical, but maybe I should not be so surprised if my capable doctors mainly focus on prescription pads. Now I have seen three of my four M.D. folks who are relevant to my lung care, and I feel better about my treatment.
Your advice, comments and support are welcome! There is no comment section here since this is a WordPress Page, but within Facebook you can search for my page SupportDavidOaks, join, and post your ideas and encouragement.
I received this advice from another person labeled quad who has decades more experience:
- Get a referral to a pulmonologist
- if you have a flutter valve use it a lot if you don’t get one ASAP (Google it if you do not know what it is) it is very effective and very easy to use multiple times a day!
- do you have a nebulizer? If you do use it at least four times a day starting with a DuoNeb & following up with a saline 7% solution
- get a referral to respiratory therapy department and if you’re able to use the “Theravest” (Google it if you’re unsure what it is) is not the most comfortable thing but it is effective!
- Just as importantly stay home… Your life is worth more than your outdoor pursuits and passions!
- Stay hydrated i.e. drink lots of water, vitamins, etc.
- your bed can it be elevated to 30°? If so sleep like that!
- I hope all your caregivers know how to perform a quad cough effectively and is not too uncomfortable on you! Be careful of your ribs, and any stomach/abdominal bruising.
Important Specific Questions:
- nebulizer? daily? (Answer from my doctors: Yes, with a cough assist device!)
- how do we make sure any future visits to ER are handled quicker? (My doctors will research this, we are all learning that there is a special procedure to do now, so that folks like myself will not wait too long in the ER room.)
- should I get and start flutter valve therapy? (Nebulizer/cough assist device are better.)
- how do I make sure lung advice is informed by SCI info? (This is an unresolved challenge.)
- while my lung is better, over what line should I go before I go to ER again? (As I have already written, my lung specialist pointed out that since I know my own breathing the most, I have make this call.)