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PICC Related Anxiety: A Success Story

Nov 11, 2019 04:01 pm | Jenny Livingston

Replies: 0

These pictures were taken a year apart, almost exactly to the day. My face in the top picture is the result of yet another distressing PICC line placement, during which I had the most severe anxiety attack I’ve had to date. I’ve had some very traumatic experiences, and even though it’s not considered a “serious” procedure, it’s something I dread more than just about anything else I can imagine.
But look at the bottom picture!
That’s a very drugged-up, but very happy me because this PICC placement went beautifully! Last year, my social worker and I came up with a plan that I’ve been envisioning for the entire year since my last procedure.
In clinic, I talked with my CF team about my anxiety surrounding this, told them the what happened last year (a story most of them are familiar with anyway, bit it was important for me to speak it out loud again) and I then had a lengthy discussion with the nurse practitioner and IR nurse before even entering the room where my line would be placed. I also practiced some breathing/grounding techniques, and you guys…. it was amazing!
For the first time in nearly a decade, I went into this procedure with absolutely no fear or anxiety. This is SUCH A BIG DEAL!
I’d never wanted to have these kinds of conversations because I thought my fears would be viewed as silly or unreasonable. But every single person I spoke with was on my team that day. They were validating and sincere and, together, we conquered one of my biggest fears.
It is not lost on me how fortunate I am to have people constantly rallying around me, helping me along this journey.
Do you struggle with anxiety related to PICC lines or other procedures? If so, have you found ways to work through that anxiety?

What will life look like on Trikafta?

Nov 09, 2019 08:02 am | Jenny Livingston

Replies: 7

I’ve recently come across multiple posts from people who are eligible for Trikafta, but are concerned that with the increase in lung function that is predicted with this drug, they’ll lose disability (and the insurance coverage that comes along with it) and they’ll have to return to the workforce.
Now, while improvements in health and the ability to work are in themselves very good things, I understand these concerns.
When a person has been “sick” and on disability/SSI/Medicaid, and can assume with a fair degree of certainty that, due to their declining health, they’ll remain on those programs forever, when something life-changing comes along, there are a lot of emotions to process.
For example, I recently thought, “I’ve never planned for retirement. Maybe that’s something I should consider doing now.” That thought was immediately followed by extreme uneasiness. Do I want to reach retirement age? Absolutely! But is it a little scary to realize I haven’t made appropriate plans for the future? Of course it is!
Trikafta brings so much hope, promise, and optimism to our community. But along with that, there are feelings of uncertainty and even fear. I think it’s okay to feel those things simultaneously. We’re entering a whole new world; it makes sense to be a little unsure of things.
Do you also have conflicting feelings about Trikafta?

Alaxia Partners with iABC to Speed Development of ALX-009

Nov 07, 2019 03:30 am | Cystic Fibrosis News Moderator

Replies: 0
Alaxia has joined the European consortium iABC to speed development of ALX-009, an inhaled antibiotic for drug resistant lung infections in CF patients. Click here to read more from it.
What do you think of this news?

Vertex, NHS England Reach Agreement on Pricing and Public Availability of CF Treatments

Nov 07, 2019 03:27 am | Cystic Fibrosis News Moderator

Replies: 0

Vertex and NHS England reached agreement allowing access to Orkambi and Symkevi, and greater access to Kalydeco, within that country’s public health system. Read more about it here.
What do you think of this news?

$15M Donation to Support CF Research Program at University of Queensland

Nov 07, 2019 03:26 am | Cystic Fibrosis News Moderator

Replies: 0

The donation, from the CF Foundation and several Australian institutes, will aid research into lung decline, antibiotic resistance and other concerns in CF. Read more about it here.
This is great news for the CF community. Are you interested in following this research?

Dealing with Painful Memories Following the Loss of Dear Friends

Nov 07, 2019 03:25 am | Cystic Fibrosis News Moderator

Replies: 0

Bailey Vincent shares how she is dealing with painful memories following the loss of friends and a recent CF exacerbation. Click here to read more from Bailey.
How do you deal with pain and difficult memories? Have you ever talked to a counsellor or a friend about it?

CF Patients Voice Hopes and Expectations for Trikafta in Instagram Poll

Nov 07, 2019 03:23 am | Cystic Fibrosis News Moderator

Replies: 0

A one-day Instagram poll on Trikafta by CF News Today, drew up to 212 responses from patients, and showed huge interest in this new Vertex combo therapy. Read more about it here.
Did you participate in this poll? What do you think of the results?