To not know where to turn - sick husband

[Tiredandworried12]

Sorry for the clickbaity type headline but I genuinely don't know what to do.

Husband's health had been declining over last year, non smoker and non drinker, never overweight and in physical job all his life that has kept him fit.

Immunosuppressed from organ transplant 15+ yrs ago, all stable on that front and no issues, this has been confirmed within last 4 months.

Breathlessness started around 18 months ago, mild at first, but declined steadily.

Lungs all fine, heart fine. Iron low, always been a bit anaemic but managed fine through diet and iron tablets.

Stage 4 Kidney disease but they are stable too, on an injection weekly to help with a hormone to do with iron, been on these for few months - fuck all difference.

Symptoms are fatigue, dizziness and just exhausted. Mentally he's foggy as well but won't admit that.

He was admitted three months ago in hospital after going to A&E feeling exhausted, blood transfusions given and some other goodies, he was like a new person, went from staggering and needing support to walk down a corridor to being able to run, it was night and day.

Within two weeks he's back to being exhausted again, slowly slowly going downhill again.

I pretty much bullied him into going into A&E on Monday as he fell over in the night and blamed being sleepy, I call bullshit and that he was lightheaded - BP is low, no medication for it. His weight has gone down and down as no appetite as well.

Anyway he was admitted again, same goodies given as before and he wanted out, he hates hospital - understandable. CT done for lower pelvic region and all clear, colonoscopy done and clear - reason done was blood in stool. So he came home yesterday, but he's just laid in bed absolutely shattered again. I don't think he should have been discharged but he didn't listen he wanted out and he was discharged with some protein drinks with a follow up to dietician.

Thing is, I'm having to care for him, which of course I don't mind as he's my husband, but this has been going on for so long and I work full time, I'm also having to light a fire under a SEN teens backside as GCSE'S are looming and they seriously CBA. I feel I'm spinning many plates.

I'm being quite forceful as he's not eating much, he looks at food and just turns away - can't face it. He's drinking the protein prescribed drinks though 3 a day.

However who the heck do I contact to try and get to the bottom of this? Kidney department go - not us. GP - well I might as well take a number and get in line, he won't be seen for a long time. If I phone 111 they say to go to A&E - he won't go. Any ideas from anyone at all with any medical training? Who I could ask for a referral too from GP? Fuck at this point I'd private! But who do I go to?!

Thanks for reading.

Sounds like it could be something along the lines of ME/CFS similar. Often triggered by physical trauma (viral, or otherwise), and sounds like DH has had quite a few physical / illness pressures that could be triggers.

Bump for you OP in the hope that someone might come along with some insight.
How old is he?

He needs to prioritise his health not only for him but for you. I hope he sees sense.

My mother was like this, refused to go hp or hospital.

Don't mean to scare you but turned out to be non hodgkins lymphoma ...

She developed sepsis, I thought she was having a stroke. It wasn't, slurred speech sign of sepsis. I had to call an ambulance with her saying she would disown me if I did. Luckily 99 operator talked sense into her.

She passed away at 78 from it but I wish she had gotten help sooner.

It made life so hard for myself and my siblings, it was really traumatic to deal with someone you love refusing help.

Maybe if you frame it like this, it will spur him on? Or ring 111 and get them to talk to him
.

Would he listen to another family member?

I'd also let him know how it's affecting you and others around you.

Unless he is a narcissist, my mother I am sure had narcissistic personality disorder so it made things more complicated trying to help her.

Still traumatised from it.

He definitely needs to be seen again, the fact a blood transfusion made him feel better and he had blood in the stool may indicate some form of internal bleeding (note I am not a medical professional!)

You don't mention his age? I ask because is this possibly a case of an older gentleman declining naturally in health, effecting his mobility and possible cognitive state or is there possibly something more sinister/undiagnosed going on. Is there a possibility he has had a diagnosis and has chosen not to share it with you?
The what ifs are endless, but I think yoh would be within your rights to request full blood work including cancer bloods from GP and further investigations arranged by appointment so that he doesn't have to endure a+e.
You can always ask your GP to refer you to your community nursing team ( district nurses) and therapy teams for support and guidance.

That would be ironic as I was diagnosed myself with that a few years ago 🙄 - absolutely no symptoms though. Found through a simple procedure for something else.

I'm cancer free now though - touching wood!

His bloods all look normal and routine scans done don't show any enlarged lymph nodes anywhere.

I'd be concerned that the blood transfusion made him better for a stretch. He's obviously lacking something. Does he take any other supplements? Has he had a B12 test? He really needs seeing again, this isn't right.

Exactly but by whom?

It's likely but I'm not sure, the fact the blood transfusion happened to make such a difference makes me think perhaps not?

So what has caused the anaemia requiring the transfusion?

Has he been through the cardiology department? My DH has had decreasing health, very slowly, then a full on crisis, and it turned into a diagnosis of heart failure. He's much better now, with a new drug regime and an upgraded pacemaker, but it is something you cannot afford to rule out because the heart's performance affects so many other physical functions. Wishing you well and sending .

i have regular B12 injections, every 10 weeks when nearly due again i am very tired has that been tested for

I’m not a doctor but is there a chance he is not absorbing the iron properly ? Could there be an issue with his stomach lining not absorbing the nutrients? (Like a coeliac)

I've read up on severe B12 deficiency causes those symptoms. Has he had his active B12 checked.

Im so glad you're cancer free. That's amazing and a good find. I think if caught early its very treatable.

My mums had spread a lot before it was diagnosed, they reckoned she could have hadcit for 5 years as slow growing.

I meant in the way not that he might have cancer, or develop sepsis... I meantjin the way his reluctance could make something that might have been simple to fix could make something life threatening and complex.

Its also his attitude to you, not getting help but expecting you to run round and look after him.

The effect on family and friends.

My mum was similar... which crushed me, my sister and brother.

Her friend used to cry and plead with her to get help.

I am not saying don't look after him or care about him, but him not getting help is going to be very mentally draining on you long term.

Is there a family member who would coax him into getting help?

Thing is if he has mental capacitt can do what he wants.

However he shouldn't drag your health and wellbeing down with him.

I

This is what I'm trying to find someone to investigate, but rather no one seems to be doing anything! Do I ask for a referral to a haematologist? I really don't know.

Meanwhile he's just slowly going downhill again 😔

My friend had debilitating exhaustion, dizziness, weight loss - blood tests revealed chronic anaemia. It was so bad the out of hours GP rang her and said go straight to the hospital now, I've rung them and they're expecting you. Admitted and given several blood transfusions and i/v iron infusion, kept in for about a week. Eventually diagnosed with ulcerative colitis which had caused internal bleeding. Medication now prescribed for the UC and has been ok since but iron levels monitored and has vitamin B12 injections.

He had a heart transplant and they've confirmed everything is working well, that hospital is fantastic.

Yes persistent anemia despite treatment would warrant a haematology referral and blood in stool causing anemia would warrant a gastroenterologist referral. I assume he has had FIT test... Anemia can also cause breathlessness. He would have to be quite anemic to warrant a transfusion
But you need to go to a GP and ask for those referrals to be actioned.

I think it definitely needs further investigating if there’s no obvious cause, be it with haematology or maybe autoimmune?

Low iron can definitely come with ME / CFS. You could check him at home for POTS (postural orthostatic tachycardia) - that would explain dizziness and fatigue, especially dizziness in the night. It’s rarely picked up by cardiologists because you have to measure heart rate lying down and then standing, and they always lie you down for ECG, EKG, etc. Here’s the test, using a pulse oximeter and home BP monitor: batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf

This might sound weird but my husband is an osteopath (not one of the voodoo ones). He is classified as a first contact practitioner and is able to do many of the basic health checks. He often writes letters to GP's outlining symptoms and requesting further testing for a range of things such as suspected diabetes, suspected MS, suspected cancer, all sorts

Sounds like my FIL with IgG4. Incredibly rare though so I'd be amazed if it's that.

i haven’t RTFT so apologies if this has already been said. But surely the answer now is to go private. Call your local Spire or private hospital and book a full health MOT for him including all available tests. Go from there. Good luck OP 💐