Should I go to A&E?

[ShrillSiren22]

I’m severely anaemic. I have a gastric condition which regularly causes internal bleeds which leads to anaemia and I normally have 3/4 blood transfusions a year to deal with this.

I’ve been feeling anaemic since April when I went to my GP as usual and my Hb was 80 which is borderline for a blood transfusion but anaemic enough for an iron infusion. As I’m under a gastro consultant at the hospital he has to contact him to sign it off before I can go to hospital to have my iron infusion/ blood transfusion. Except the gastro department has not been answering the phone or returning my Gp’s calls/ emails since April.

My GP is tearing his hair out as my hb is now 56, the lowest it’s ever been. I am sleeping downstairs as I cannot climb the stairs to bed. I am driving my dc’s 100 m to school as I cannot walk. I am sleeping nearly 20 hours a day, I’ve lost 9lbs as I can’t eat anything, I’ve constantly got a blinding headache and I’m sobbing nonstop. I don’t know what to do and why no one will help me.

My GP has even driven to the hospital to try and get someone in gastro to sign it off but no one will. There’s nowhere within an hour drive that does it privately even if I could find a way to get there as I can trust myself to drive that far without falling asleep.

Id have to take my kids with me to A&are but I can’t think what else I can do.

lt all sounds really stressful, OP. I hope you are feeling better very soon.

Another one here very relieved to see your update. Good on you OP. Nobody should be left to suffer in the state you're in. Please let us know how you're feeling tomorrow P.S your children sound so lovely and well behaved. What a credit to you.

I’ve just got home. I was given one bag of blood, the nurse said ideally I would have had 3 but I’m booked in to have another on Tuesday and then again on Thursday. Thankfully my mum will be back by then so she can have the boys. I’m feeling so much better already and I’m actually hungry for the first time in months.

WRT driving as long as I’m sat down I’m ok as I can be. I’m exhausted but it’s only a 15 minute drive to the hospital and I wasn’t shaky or semi conscious or anything. The feeling like death really happened if I tried to do any king of physical exertion like climbing the stairs, walking or standing still which was the worst. I wouldn’t have driven if I didn’t feel safe to which is why I hadn’t driven anywhere to get it done privately as the nearest place is over an hour away which I wasn’t comfortable with.

@ASDmum28 thank you so much. I don’t know about lovely and well behaved, I’ve just carefully rationed their screen time in case it’s needed for emergencies like tonight 😂

Ah well done OP & DC, I hope things get much better from here

So glad you went and got some of what we needed.

Congratulations on holding your nerve and getting yourself sorted. Sleep well

I have just read the thread OP and I'm glad you have been (kind of) treated. You have absolutely done the right thing and if I were you I would seriously consider making a PALs complaint.

Just a thought, have you joined a Facebook group for your sons medical needs? I have a child with somewhat rare complex medical needs and I signed up to Facebook to connect with parents in a similar situation. We have done meet ups and there are 3 families who are pretty local to me who have children with the same needs as my child and I am sure one of those families would look after my DC for an afternoon in an emergency situation like yours, as I would for them.

Glad to see your update, OP. Hope you have a good sleep and feel a bit better tomorrow. Take it easy if you can

This is the most helpful comment you could make on the OP's situation?

Oh pal this sounds awful!

Hospitals and GPs are so political.

I had a camel spider bite a few years ago so when I got cellulitis from a bite afterwards I had 6 rounds of antibiotics and was off work for 10 weeks. my GP was doing her nut and wanted me put on a drip in hospital - he refused because it "cost money".

You must be at your wits end. Go. Just go.

Although a and e can be as bad - they once made my 34 year old boyfriend who was having breathing difficulties despite good health (turned out hed shifted a bone in his chest) wait 9 hours to be seen beause he was "otherwise healthy".

You poor thing. I hope you get answers soon.

Thats so helpful, OP will be so comforted.

@xmas2022 i have joined a couple of groups but we’re sort of still figuring things out ourselves at the moment m. It’s type 1 diabetes, he was only properly diagnosed 8 months ago and he’s only 6 so it’s still a learning curve for all of us in terms of trying to keep him stable. He’s had a couple of really scary moments so I’m obviously reluctant to leave him with anyone unless I can 100% trust that they know how to manage it. He’s still not quite realising the seriousness of it and has occasionally feigned hypos in attempts to scrounge sweets.

@beautyisthefaceisee wgat a nightmare. It’s kind of reassuring in a weird way to hear that other people’s GPs also sometimes struggle to get their patients the right treatment. I was beginning to think maybe mine wasn’t as great as I’d thought.

Great! And a good reminder that I need to book next donation session.

What a night you have had! I'm so sorry you have to go through this and this shit you felt before your transfusion.you were so bloody brave.
Your kids must be awesome.it can't be easy for any of you.
Is there anyone you have working with you.a team.ot your son.so you can ask for respite or help.any charities or local groups.so u no you have backup and support.fir general and for if this happened again.
Also you need to force them to get you a better treatment plan for maintenance.you cannot go down to the level of I'll health you were this week that is terrible.
But get it sorted before it happens again.get on it today!
Also get your nutrition and body health up now.start building your strength back as much as possible whilst you feel that hunger so you've got the best chance.
Also could you get prescribed/buy some high calorie shakes and or bars.havevthem in handy place around the house for if you drop again. Or too boost you by drinking one every day.
You did the right tho g by going last night.im so glad you did.and no guilt about the boys.family are illsometimes.some more than others.thats Moines fault and it can impact a families life greatly.sucks big time.but with enough love and support they can turn into some brave ass warriors and a great team.which your sound like.

I'm glad you got help OP. I've had to take my kids to A&E with me before. It's hard but when there's have no alternative you have no choice

Great news op, I am glad you have a plan for further treatment too

Hopefully your dc can get a pump eventually, it will be life changing. You can monitor him remotely then too which ill be really reassuring. Take care!

Can't believe some of the responses you've had op. I'm so glad you went and received the transfusion. You'll feel so much better for it.

Hope you're feeling better today @ShrillSiren22

So pleased you went to A&E and have more transfusions booked in. Your children sound brill.

1 bag, bloody hell, how low have you got to get to qualify for 2 these days? Glad you are feeling better OP.

@FabFitFifties they have scheduled me in for more, thankfully. I think they are doing the absolute minimum they can to be able to send people home in a slightly better condition than when they arrived. The staff were all practically running between patients, they seemed so busy 😬

56 is pretty low and even after 1 bag I doubt you would have climbed to acceptable numbers.

In my work you wouldn't need a consultant sign off to get permission for blood because you would get written up for 2 to start with and a 3rd for after your checks. We carry out transfusions regardless of the time of night.

I think you need to make a complaint as you should have been transfused well before now. Have they investigated why you keep dropping levels.

Hopefully you can get some answers soon.