After briefly broaching this subject a few years ago with a Palliative care specialist at UCSF, I wasn’t exactly sure what to expect from this brand-new appointment. Heck, I wasn’t even sure why I was referred to the Palliative Care Dept again in the first place. What was my Pulmonologist thinking? I mean seriously, I have bad asthma, not terminal cancer. The first go-around with this in 2014, they really didnt have much to offer, other than some hardcore opiates(methadone)to quell my constant breathlessness. Why would this time be any different? I really don’t want any more drugs in my system.
Before I continue on, for those not familiar with the term, “Palliative Care” is NOT the same as Hospice or end of life care. Palliative care focuses on improving the quality of life care in the face of serious illness, regardless of disease prognosis. In other words, you dont have to be dying to receive this kind of care. Palliative care specialists provide patients and families with an extra layer of support. They do this by offering treatment and counseling for both physical and emotional symptoms, such as pain, shortness of breath, fatigue, anxiety and depression. The team usually includes doctors, nurses, social workers and spiritual providers.
So anyway, getting back to this latest appointment; my apprehensiveness about going through this process again was thankfully put to rest (probably a bad metaphor, but whatever.) My new Palliative doctor, whom I met for the first time via Zoom appointment, couldn’t have been more pleasant and upbeat. After a full hour of listening to me describe some of the difficulties I was having in coping with my illness, the increased frequency hospital admissions and other stresses in my life, I felt like she really heard me and had a good understanding of where I was coming from. I also appreciate the fact that she didn’t automatically default to suggesting a drug regimen to alter or modify my behavior. Instead, she recommended I talk with a Psychologist to iron out any anxiety or PTSD issues I might be having and possibly check out one of the American Lung Association’s Better Breathers clubs for some insight on how others with severe respiratory conditions cope with their breathlessness. As a Respiratory Therapist who’s actually spoken at one of these Better Breathers meetings during my marathon training days, I think Id feel a little awkward and out of place. But looking at it from the other side, Im also a person who is suffering some of the very same symptoms as some of these folks and it would be interesting to see how they cope.
Here’s the really reason why Im encouraged by this re introduction into Palliative care, the Dr. actually took the time to find a Psychologist in the area who she thought would be a good fit for me. One who specializes in helping people living with serious health conditions. The frosting on the cake was that she got back to me in less than 24 hours with a name and contact info. Do you know how rare that is? Seriously, nowadays if you’re looking to connect with mental health counselor, you’re pretty much on your own. At best, your care team might give you a list of mental health providers, who might or might not offer the type of care you need, and who may or may not accept your type of medical insurance. It’s basically left up to you, the patient, to sift through all this and find your own therapist. Not that that’s a bad thing, but its not always an easy task when you’re already dealing with so many other things. I guess the added value in having a good Palliative care team behind you, is that they can assist you with stuff like this. That said, and even if Im not expecting miracles, the least I can do is put some effort into this and see where it takes me. Nothing ventured, nothing gained, right?
If youre wondering what kind of anxiety issues am I referring to, and why would it rise to the level of prompting a referral to Palliative care, and/or the need to talk to a Therapist? Well, ironically, it’s during the early stages of bad asthma exacerbation, that just the thought of ending up in the hospital or worrying about or whether I’ll end up on a vent, can trigger a sort of internal excitability and uneasiness that can subconsciously make my breathing worse. It’s more than apparent that any time anxiety fuels or accelerates my asthma exacerbations, Im more prone to ending up on life support. And while intubation and mechanical ventilation is the appropriate intervention for asthma related respiratory failure, its also fraught with a ton of potential side effects, of which Ive suffered many. Putting me on a ventilator prematurely or for any other reason except for crappy blood gasses, is not ideal. It may get me over the asthma hump quicker, but because of all the meds they sedate you with, it can also cause prolonged bouts of post extubation Delirium, which only extents your time in the hospital.
The goal in talking with a therapist I suppose, is learn methods on how to calm this dyspnea/anxiety storm that sometimes happens during my flares, and thereby de-escalate the severity of my symptoms. Perhaps even delaying or preventing the need for hospital care and a long stint in the ICU. Of course there are more deep seated PTSD issues Im dealing with, but I think it’s all pretty much related to being sick or in the hospital so much.
Ill see how it goes and let you know.