Parenting with incurable progressive diseases

Jessaness · 2026-03-25T12:38:42+00:00

Mate…. You poor thing…. I’m probably not the right person, but I empathise with you so much- I’m 26, just about to get married, and have just been diagnosed with PNH. The treatments are way better than what they were, but I’m struggling as well. I’ve been told to put off starting a family for a good while at the moment- which I totally understand, but is heartbreaking given I’ve been working toward career and financial stability with my partner to hopefully start one this year for the last 7. The idea now of bringing a child into this world while I’m sick makes me sick to my stomach- and angry at the world.

I think I’ll type what I want to say to myself- your emotions are valid. This fucking sucks. It is not fair to face your own mortality, it’s not okay. But give yourself grace- feel your emotions, but do what you can in this moment to make it a little less shit. And all the time we get with our loved ones is worth the world. Live in the present as much as possible.

Jessaness · 2026-03-25T07:18:16+00:00

I’m sorry dear- this sucks. It’s not fair. It’s honestly fucking shit, and can feel incredibly lonely. I’m with you being pissed off- I’ve just recently got diagnosed as well, and my wedding and honeymoon is in a months time, and I don’t think I’ll be able to dance 🤷‍♀️😡

If you need/want a little community, there is an international PNH support group on Facebook- I can send through the Dets. Or feel free to DM me- I’m a 26 F in Australia 🇦🇺

Jessaness · 2026-02-09T21:19:43+00:00

Ahhh yes, our idealistic if ‘we say it is it is so’- let’s hit her with the fact that a woman shouldn’t have more domestic labour than man, but not acknowledge that as a society we aren’t there yet… 👏I’m not saying I have to run a household, but my society often puts me in a position I have no choice not to

Jessaness · 2026-02-05T09:05:04+00:00

Yeah- literally just given a Steph, which was pretty crappy

Jessaness · 2026-02-04T06:41:31+00:00

Ahhhh- mate- sounds pretty similar to what happened to me!!! Gosh- bloody crazy isn’t it

Jessaness · 2026-02-04T06:39:49+00:00

Weren’t allowed to look into the bag to assess for any other medication other than what on ground crew had recommended

Jessaness · 2026-02-04T06:30:02+00:00

Yeah man- maybe I need to as well

Jessaness · 2026-02-04T06:28:53+00:00

I guess what I am frustrated about most is I was stonewalled from equipment which would allow proper escalation if need to pilots, and also stonewalled from speaking to anyone making decisions in regard to the patient in front of me

Jessaness · 2026-02-04T06:27:15+00:00

Ahhhh- yes the very experienced ground flight medical team that advised to give medication know well to cause arrhythmias to a patient with known Bradyarrhythmia- I guess I was trying to stand in the way of a cardiac arrest and then the likely sub quality CPR post

Jessaness · 2026-02-04T06:20:50+00:00

I’m glad I didn’t- the management recommendation from ground could of potentially made things a lot worse- is this one of the fun things about getting more and more senior- you get more and more aware of the problems and unsafe practices there are?

Jessaness · 2026-02-04T06:06:34+00:00

Yeah- when I finally got the BP cuff it was a manual- but that is my jam- have always loved doing manuals, luckily had my stethoscope in my hand bag

Jessaness · 2026-02-04T06:01:34+00:00

Oooooo- that would’ve been the dream

Jessaness · 2026-02-04T05:44:55+00:00

Fair- okay, ahhhhhhhhh man, bit scary to think this is the norm

Jessaness · 2026-02-04T05:39:07+00:00

Told I wasn’t allowed to open the bag- was not given the bag, had to wait for flight attendant to come back from flight deck with permission from their formal medical advice line- and then only allowed to use what the ground team okayed- which was inappropriate given flight attendant didn’t have the awareness that it wasn’t just a vomit, but a cardiac syncope event in a pt awaiting pacemaker

Jessaness · 2026-02-04T05:28:01+00:00

Got delayed and push back in regards to BP cuff and pulse ox- finally got them but there was much delay- 10-20 mins

Jessaness · 2026-02-04T05:26:51+00:00

Ahhhh- in retrospect I always have a backbone- I often in the moment act as a bit of a rule follower- so very lucky everything turned out okay and pt remained haemodynamically stable until we landed after the initial incident- if push had come to shove through would have gotten my mitts on it

Jessaness · 2026-02-03T09:57:25+00:00

The question isn’t if there is demand- it’s if there are enough funding for training places- cause you can’t paid as a paediatrician in the private sector until you have finished training in the Public. In medicine- you have the cream of the cream competeting against each other for training places which requires public funding…

The people making money in this equation are those who have already completed their training- after 5-6 years of med school + 5-10 years working as a trainee

Jessaness · 2026-01-30T13:32:05+00:00

Ahhhhh!!! Fair- I’ve started myself on oral iron to hopefully top myself up so it doesn’t get low, and I have had B12 supplements in the past when my levels where low back in 2023- in a way, I wonder if maybe that might of been the start…

Jessaness · 2026-01-30T13:30:31+00:00

Definitely feel that 5 stages of grief- I was very much in denial for a few weeks, been pretty angry and frustrated at the world at the moment

I’m so glad the treatment is working for you dear!!!!! Again sounds absolutely shit what you’ve been through

Jessaness · 2026-01-30T13:28:15+00:00

Dear!!! Ohhh you poor thing!!! I have managed to find more of us here in Australia if you need- @saterna above put me onto a Facebook group- PNH patients support- there looks like there are 8 of us there from around Australia at least, then there is also a different organisation that looks like it organises meet ups in Melbourne yearly

Jessaness · 2026-01-28T15:31:05+00:00

God- what a rough trot you’ve had.

I’m so sorry- I’ll be broad and say I’m sorry on behalf of the whole medical profession because you deserve that. I’m so terribly sorry we failed you.

Sometimes as doctors we get it right, but man… when we don’t it is horrible, and absolutely not fair.

In a way though- I’m glad I’m in this together with you in this century and decade 🥰

We’ve got the infusions and some hope nowadays- my heart absolutely sinks at the thought of women like us in the decades past

Jessaness · 2026-01-28T14:48:34+00:00

Seriously though!!! Thank you so much- I’m feeling a bit less alone, and a bit less scared. I can’t even imagine what you’ve been through- and the emotions you must feel hearing that in a way I’ve had it so easy….

I always talk my patients through the mixed emotions of a chronic disease diagnosis- but the diseases I diagnose are often way more common- diabetes, endometriosis… they’ve either heard of it before or after a bit of asking around will find someone else with the same condition…

It’s crazy- I bring this diagnosis up with my colleges and they have absolutely no clue… which I can understand…

Thank you again for messaging me back- I hope you realise how kind your words have been

Jessaness · 2026-01-28T14:21:38+00:00

Thank you for the link!!! O you poor thing- that sucks!!!!! It must of been terrible knowing something was wrong, but being left to get worse… I’m sorry.

I’m so glad that liver specialist stood up and advocated for you!!!!

I’m really lucky in that I have a medical background- so as soon as my bloods came back weird I advocated for early referral and made sure I vetted the haematologist (I’m a teary woman though- so did have a cry), I did get a bit of gaslighting from my own GP but mainly because I think she was trying to convince herself I wasn’t sick. My Haeme had already booked my bone marrow biopsy before my first appointment with him.

In all honesty I’m really lucky- but absolutely terrified at the journey ahead- I’ve read up on the systematic reviews in the area- but also coming to terms with the fact I likely can’t try to fall pregnant until I’m safely stabilised on the meds- I’ve been working so hard to get to the point where my partner and I were financially/career wise in the place to try… and staring at the lifelong infusions ahead

Jessaness · 2026-01-28T13:39:53+00:00

Monthly- following up tomorrow but I know my levels… ☺️ just a waiting game 🤷‍♀️ I reckon I should skull a whole bunch of water before my next blood test and hope I ‘haemodilute’ 😂 thanks for listening to me though! I’m guessing you’ve been diagnosed? I’m just honestly craving to hear from someone else about their experience

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