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.

Honestly there’s very little you can do without his agreement.

In order to get that agreement you may have to go nuclear. He goes to hospital/GP or you’re moving out/ceasing to support him.

Otherwise it could be you in an early grave, not him.

Completely agree with this.

Yes that's right the FIT test is what showed the blood in stool.

Thank you, I was in a point of unable to see anything. I'll make a GP appointment and ask for a haematologist and or gastrointestinal referral.

Thank you everyone for being so kind.

Fortunately if I push a point he will see the GP, he's not shy on that front and usually proactive himself.

I feel like I have a plan now, truely thank you MN.

Good luck and God speed @Tiredandworried12 . I hope the NHS clicks into gear for you as it did for us. The NHS does emergency care brilliantly. Routine, everyday stuff is less good unfortunately.

Sorry I misunderstood... I thought you said he was reluctant to get help and go to the gp

Wishing you all the best in getting sorted.

I would push cardiology to help. As a post transplant patient of 15 years in many respects he is doing amazingly well, but if they are a good and proactive department get onto to them, and make sure they know all the details of your post. Best wishes.

She's stated he is actually willing to get help and go gp, I think it was more the symptoms and getting correct routes than her husband won't get help.

Think not worded the best as seemed she was stating he wouldn't go to the gp or hospital.

Coeliac disease? Would definitely account fof anaemia and any weight loss. And possibly blood in stool.

my SIL was diagnosed with this a few years ago. She’d been so ill leadingg up to it. She thought she was dying. Dizzy, headaches, weight loss, breathlessness.

A relative of mine had some sort of disorder where they stopped making blood. Sounds so weird but they basically lived by having transfusions for the last few years of their life. Low iron (low blood) can cause loss of appetite, fatigue etc. She was a new woman every time she got one or two pints and would then slowly decline again over time to the point she was sometimes bedridden.

The fact that he's worsened again so quickly after a transfusion is definitely a sign there's something else going on. I agree with posters saying go nuclear at him, say how desperately worried you are and that you are afraid you can't help. He needs as a minimum to go back to the GP. I'd see if you can get him down there Monday morning. If you're actually in front of them looking as ill as you are, it can help.

I'd be pretty cross that he's essentially discharging himself without giving the hospital chance to investigate fully. I did it myself in sheer frustration and my GP then told me my referrals to outpatients had been cancelled due to it and the process had to start again from scratch.

It is reassuring that he's had a fair few tests by the sound of it. Do you have a local WInfield or Nuffield hospital? They offer a private GP service or you may have a local independent. They may be able to add up the information in the tests he's had to date.

I have every sympathy. The stupid nhs has failed my Dh who has been ill. They just don't care. And don't have any incentive to investigate what is wrong. It takes its toll.

Take him back to A&E and leave, if he wants to self discharge again don't be there to help. What a selfish idiot.

You state he has stage four kidney disease, and the symptoms you describe are consistent with that. No idea why people are offering all manner of diagnostics with very little information.

sounds like it is being managed as well as possible. It is a serious disease.

i am not a doctor asked my mate am out with who is.

I know it’s weird but are there any advance nurse practitioners at your surgery? On some issues they can be more thorough than a GP I have found on occasion.
And if no answers I’d be going nuclear at the surgery or going for a second opinion at another surgery.
Good luck 🤞

If he has a positive fit test he is bleeding into his gut. So he needs urgent GI investigation. Surely that must be obvious to all those HCPs?

Pulmonary hypertension (high blood pressure from lungs to heart) very hard to detect needs to be diagnosed with heart catheter.
It causes excessive breathlessness, dizziness etc.
I have this condition and had many symptoms your husband has.

Pulmonary hypertension (PH) is a common complication of chronic kidney disease (CKD) and end-stage renal disease (ESRD

Personally I would get full bloods done with a private nurse. Cost about £400 I think.

NHS blood results criteria are not the same, a private nurse will look harder at the results and give you a deeper explanation.

You'll also probably get seen quicker.

Good luck.

ME does not cause, nor is it caused by, anaemia or bleeding. I think its a dangerous supposition at this stage, because accepting a diagnosis of ME effectively shuts the door to any further tests or treatments.

He really needs to stay in when he gets admitted as they are going to do things a lot quicker when he’s an inpatient, so I totally get your frustration and hope you get to the bottom of it soon.

Haven't read the whole thread but that was my question too.

If you had read the whole thread you would see that he has had a heart transplant, so this part is definitely well monitored.

@Tiredandworried12 - he's clearly a very complicated case so I think the well-meaning suggestions about random bloods are not going to be much use. You need expert consultants who are not put off by his complexity! It's good that the transfusions are doing him good as it gives you a place to start. I hope some of the ideas on here help get him in front of the right people to investigate.

Sounds like symptoms my dad had, took too long to diagnose. It was Cryocrystalglobulinemia,
very rare. He was eventually diagnosed through haematology.

Poor man, I have had a kidney transplant too and have never regained my health.
Transplant is a form of treatment not a cure and the long term effects of medications is enough to leave you feeling rough never mind that he is now stage 4 kidney failure again.
I have no advice but be kind, I bet he hates feeling like this too.