Exacerbations

[Mark Koziol]

Hello Jill, I can tell you first hand that you can have exacerbation and be on an anti fibrotic medicine. I was on Ofev and suffered an exacerbation and was hospitalized. My treatment was more supplemental oxygen as I went from 4 liters of pulse o2 to 6-8 liters of continuous flow. As you can see it was a drastic change and set my lung transplant evaluation into motion. My exacerbation was caused by the RSV I contracted. Here is a link from the pulmonary fibrosis foundation and info on exacerbations is on page 28. Take care, Mark.     https://www.pulmonaryfibrosis.org/docs/default-source/patient-information-guides/2017-pff-patient-information-guide.pdf?sfvrsn=39cd958d_0

[Kathleen Ryan]

Thank you, Mark, for the  link. It’s very helpful

[Jill]

Hi, Mark, thanks for your help! Can you please tell me how you were getting your 6-8l of continuous flow? Were you able to find a POC for that much or were you using either liquid tanks or gaseous tanks? Thanks

[Mark Koziol]

Hi Jill, I had a home concentrator that went to 10 lpm and I used the E series tanks when I was out of the house. A friend built an insulated tank holding container that I placed in the back of my pickup. Every cpl days I would get 22-26 tanks. I was still working so I used the E tanks while I was work and any time out of the house. The custodians at my school would store them in their work area along with my electric scooter. I was fortunate to have wonderful colleagues and friends who would monitor me throughout the day, maybe too much but it was very much appreciated. I hope I answered your question. Mark

[Jill]

Mark, that’s so helpful, thanks so much for sharing your experience and the link!

[Jofac O'Handlin]

@jillgerber4gmail-com

Reply to Jill,

Yes I have recently suffered  what I can only interpret as a exacerbation. Up until the last few days of  January, my wife would encourage me to take a walk around our village, about 2.5 to 3.5 miles at a reasonable pace, taking it slowly up the hills. This was without O2.

I had realised for some time that I was, during the walks, pushing my O2 stats down to lower than desirable levels. I’d had O2 prescribed a year earlier but after one test run had not used it.

About the 27th Jan, I decided to use O2 on our walk, and it was a disaster.  From not using O2 it seemed that I was now dependant on it! My resting O2 sats had fallen from 92 -95 into the high 80’s.  Trying hyperventilating did not raise the levels sufficiently, so I became very suddenly Oxygen dependant.

I did not go to hospital but did get an emergency appointment with the NHS gp. He seemed to go into overdrive, indicating that I was entering end of life, prescribing Oramorph, and Lorazepam to keep me ‘what’ sedated?

What triggered the exacerbation? I don’t know. There was a mild temperature which forced a covid test (clear), and I was on a penicillin antibiotic at the time which mignt have encouraged a bout of thrush fungal infection.

Treatment. I was prescribed the paliative drugs, which I have so far not taken. Plus counselling (sort of) ending with a DNR Order, great! Follow up today when I have been prescribed 2 oxygen concentrators. Should arrive tomorrow. Our small island does not provide a liquid oxygen option.

Me? I have staged a little recovery I am sitting here without O2, at 92-93 sats. This slight recovery is a great relief to my nose. One side very tender. But my walking now has to be O2 aided, 4 litres. I have been able, as a terminal patient, to coerce my man to permit me an an antibiotic identified in a Swiss trial as a potential aid against IPF progession. Private prescrition self medication, no come back! He then flagged this as a possible conta to the effects of the OFEV my present main medication.

Thanks to all who share their experiences. Warriors in adversity.

Regards, Joe