[bronwyn]

Hi William & Everyone,

I have CF & after successfully avoiding getting Covid for 3 years, I got it at the end of January this year & despite starting an antiviral & antibiotics straight away, I rapidly deteriorated & became very ill from the symptoms of Covid & two secondary infections & was hospitalised for 19 days. After my discharge, I expected that I would need some time to fully recover like I’ve usually needed after my CF related admissions, but this recovery has been so different & much more difficult than I’ve experienced before. I did & still experience more breathlessness & severe fatigue & lethargy which can flatten me for a couple of days after physically exerting myself even slightly by walking even very short distances, doing the washing, carrying groceries etc, I developed a strange taste in my mouth, headaches, brain fog, occasional unexplained fevers, sore throat & the joint, muscle & bone pain & inflammatory response I could experience pre-Covid due to having an autoimmune disease & arthritis has been exacerbated & became so much more persistent & painful. My Rheumatologist said the Covid virus has caused an inflammatory “flare up” & how it will affect my arthritis & autoimmune issues long term is still unclear. On bad days it just feels like my whole body is inflammed & worn out which even sleeping 9 hours overnight doesn’t relieve at all. As these symptoms were still present after 3 months & are still now & after my medical team performed numerous blood tests & investigations to look for any other possible cause for my persistent & debilitating symptoms (all negative), I  have been diagnosed with Long Covid. My GP & CF team have been supportive & empathetic & we’ve tried adjusting both my daily CF Clearance treatment & exercise regime & exertion output numerous times to try & find the right balance of exercise & managing daily tasks & treatments without physically overdoing it to the point where my symptoms are worsened & I pay the price physically for days. The Australian Lung Foundation has released a booklet for patients with Long Covid which has been helpful & I’ve adopted many of the strategies that it suggests for managing & living with it which includes planning my week by ensuring I have “rest” days in between days that require more physically demanding tasks, to help minimise the impact & exacerbation of symptoms, prioritise tasks & do them in at a time in the day when my energy levels aren’t so depleted & pacing myself throughout the day & week & recognising & learning to stop as soon as I feel the increasing fatigue & aching coming on before it causes Post-exertion malaise (PEM). I’ve noticed that my brain fog becomes worse & other Covid like symptoms such as headaches, sore throat, brief mild fevers return if I do too much. Despite the challenges that living with CF brings, I was quite active physically & enjoyed doing so many things in my life before getting Covid. Long Covid has had a detrimental & debilitating impact on every area of my life & limited greatly what I can now do & other than the additional physical challenges it has presented, it has been mentally & emotionally very challenging also & it can be hard not to get disheartened, frustrated & depressed on some days. Living with CF can be hard but developing Long Covid as well has made things much harder, but I’m determined to do whatever I can to get through it even if means only taking small steps each day going forward. I know my recovery could be a long haul & take quite a long time, so I’m trying to let go of & accept what I can’t control about it & focus on what I can control ie eating a healthy diet, daily Mindfulness, getting adequate sleep, managing my energy levels, following professional advice, accessing counselling support & researching & learning as much as I can about the best ways to manage Long Covid in the short & long term. I look forward to a time in the future when I can hopefully say I’ve fully recovered from it. I feel for anyone who has or is experiencing Long Covid & wish them all the best for their ongoing recovery.

Best wishes,

Bronwyn

[bronwyn]

Hi Jenny,

Just wanted to thank you for the wonderful contribution you have made to this forum as co-moderator and for the warmth, compassion & kindness you have shown to all of us with CF via this forum.  It has been appreciated. Glad to hear you will still be visiting this forum as a member and I wish you all the best with your health & with whatever you will be doing going forward.

Take care,

Bronwyn

 

 

[bronwyn]

Hi everyone. After being sick with various health issues including chronic sinus & chest infections & digestive issues from a very young child & many times as an adult being dismissed by numerous Dr’s who quite often told me there was “nothing wrong with me medically” especially when I presented  “outside the box” clinically, at the age of 48, I got Influenza A followed closely by pneumonia & weeks later became very ill with sepsis pneumonia & lung sputum samples found Pseudomonas. When I didn’t improve much even after treatment, my Respiratory Physician who had heard about late CF diagnosis at an overseas conference & (who had been my physician for 20 years & was treating me for asthma), decided to test me for CF & when I asked him why, he said it was because I ticked every box for late CF diagnosis. A month later this testing confirmed that he was right & I did have CF. Even though it was a huge shock & quite devastating for me & my family to find this out & come to terms with (my parents were shocked that until this point they had no idea they were both carriers),  I at least finally had an answer as to why I had struggled with my health my whole life. And I’ll also always be grateful to my wonderful long time Physician for not only listening but “hearing” me & not dismissing me (like so many others had done) when I said I just still didn’t feel well after having the sepsis pneumonia & something’s not right with my health, but that he also said at that time that he believed me & promised me he would keep testing for various diseases until he got the answers we needed. And that’s exactly what he did & eventually that’s what lead me to getting the CF diagnosis & being referred to a CF clinic so I could get the best clinical care & treatment available. My mutation (R117H) CFTR on a 5T background was so rare that the CF Physician I was referred to (who had 30 years CF consulting experience) had never seen it before & on speaking with his overseas colleagues, we found out that at that time (7 years ago), I was only one of three people on the worldwide data base that has this particular mutation. I have often wondered if this could possibly explain why I always seemed to present so “outside the box” clinically & may have contributed to why it took 48 years for a Doctor to finally connect all the dots & for me to be diagnosed. Interestingly, my CF team have quite often said that I continue to sometimes present quite differently to other CF people they care for. My last 7 years have been quite challenging CF wise & I also have Scleroderma which also adds numerous health related challenges but I also feel grateful & blessed in so many ways & for many different reasons & I just try to live as fabulously & fearlessly as I can each day. Thanks for being interested in a late diagnosis experience. Take care everyone.

[bronwyn]

Hi William,

Thank you for your kind & empathetic response to my Long Covid experience & I greatly appreciate your good wishes for my ongoing recovery.

Kind Regards,

Bronwyn

[bronwyn]

Hi Wendy,

Your journey both in the lead up to & after you finally got your CF diagnosis sounds so similar to mine & like you, I wished I had been diagnosed earlier but feel at least now we know, it enables us to get the treatment we need going forward. As they say…. knowledge is power! In response to your question regarding fungal sinus & lung infections, I thought I’d share my experience and hope it is helpful to you.  I started having frequent sinus infections from around 18 years of age and just before getting my CF diagnosis 7 years ago, I started having strange fluid & blackish/brown discharge sinus discharge accompanied by severe sinus headache & was feeling very unwell. Saw my wonderful ENT specialist, who via a scope, saw that I had a huge fungal ball in my left sinus & after unsuccessfully trying to remove it in his rooms, he removed it under general anaesthetic & gave my sinuses a wash out at the same time & I felt so much better immediately after the procedure. The pathology showed it was Aspergillus.  Because the fungal ball was able to be removed successfully, I wasn’t given any anti-fungal medication after the procedure. Initially after that, I didn’t have too many sinus issues for a while, but then five years ago, I began having frequent & severe sinus infections again that made me feel quite unwell most of the time & proved extremely difficult to treat & I would only get a brief reprieve from sinus symptoms & infections after each course of antibiotics.  Unfortunately, I am allergic to Bactrim & Augmentin, which can apparently be quite effective for sinus infections so had to rely on other antibiotics such as Klacid, Ceclor & after my CF diagnosis, I was given Ciprofloxacin for it, which was a bit more effective than previous antibiotics I had tried, but again quite often, only gave me brief reprieve. My ENT recommended I also try using twice daily sinus flo powder washes to help keep the sinuses as clear of troublesome mucus as possible. Since my CF diagnosis, what we started to notice was that every time I got another sinus infection, (which caused severe pain & sometimes secondary swelling requiring Prednisone to reduce it), it would trigger & exacerbate my respiratory symptoms (from the sinus gunk dripping down into my lungs) & I would then develop another chest infection & once had pneumonia as well. When this pattern became more frequent & I required multiple hospital admissions for IV antibiotics etc, my ENT suggested doing minor sinus surgery to “open/widen” the sinus cavities to allow the sinus washes to be more effective in removing the sinus mucous build up. This gave me some relief for a longer period of time which we were pleased about, but unfortunately eventually the sinus infections began again & the same sinus/chest infection pattern started again & my sinuses would bleed as well. I then had more major sinus surgery & this time my ENT surgeon opened/widened the sinus cavity area even more and thankfully that was more successful & I was sinus/fungal infection free for a considerable amount of time (about 18 months) & I also then had less chest infections as well during that time which was great. For the past two years, I’ve had a couple of sinus infections again & for the past few months I’ve had that blackish/brown sinus discharge off & on again & a sputum sample pathology showed I had a fungal called Purpureocilium Lilacinum, which I was told was apparently quite common & usually doesn’t cause problems (but it seems to with me!). It’s likely that it was in my sinuses as well, but my sinuses weren’t swabbed at the same time).  My ENT specialist has organised for me to have a sinus swab next time I have that same discharge & hopefully if we can identify any other fungal infections, we can try & successfully treat it with a more specific medication. My current sinus management treatment plan is: Twice daily sinus flo granules with an added nasal steroid once a day (Pulmicort Respules), twice daily hypertonic saline sinus inhalation (6% Hypersal) via a Pari Sinus System machine (which has been a Godsend in treating my sinus issues!) & my CF team also suggested we try Inhaled Colistin (antibiotic) into my sinuses via my Pari Sinus System, one month on, one month off. This treatment plan seems to be relatively effective in at least reducing the frequency & severity of my sinus symptoms & infections. Having a very caring, empathetic, highly skilled & ENT specialist who has experience & knowledge about CF related sinus problems, who is always prepared to see me any time that my sinuses cause problems, makes dealing with this a bit easier & I feel very fortunate to have him as my specialist. At each appointment, he always views my sinuses via a scope & clears out any troublesome/infected sinus mucous that’s there which always brings me relief and helps me to feel better. If at any time I have symptoms & his scope prevents him from seeing the possible area of concern, he gets me to have a Sinus CT which can detect fungal balls, absesses etc. Like you, due to my rare mutation (R117H/1210-34TG (12T (5), I’m ineligible for Trikafta, so unfortunately that isn’t a possible treatment option, but Wendy, I hope me sharing my experience is helpful to you in some way, as I know only too well how ongoing sinus/fungal problems can make you feel quite lousy.  I wish you all the best going forward.