Is anyone awake? I’m expecting bad news and I can’t sleep

[MyCake]

My dh is unwell and we have no idea what is wrong. We are getting scan results this morning but they were only to rule things out so probably not conclusive. However, I can’t see how this isn’t going to be something serious as he has declined so rapidly.

I feel sick. We’ve already lost most of his income through him being off work so I’m also worried sick about money. We have enough savings to manage another 2 months at the most.

My dc are already suffering, despite them
mot fully understanding how serious the symptoms are, as dh is pretty much housebound and I can’t physically drive them to all the clubs and places they need to go by myself.
I also work full time although thankfully I’m a teacher and break up this week.

My heart is broken just looking at him disappearing in front of me. The doctors are slow to take his symptoms seriously so sadly by the time he was sent to hospital he was already unable to work and very ill. It could of course be something very treatable but at the moment I feel suffocated with the fear of the worst case scenarios.
I am writing this as I’m lonely and scared and wondered if anyone is awake to say hello.

I have name changed in case anyone recognises me from this post. If you do, please don’t mention this as I am doing a great job of appearing strong on the outside.

So sorry you are going through this. It sounds so frustrating and distressing. All the love and strength to you xxxxx

I’ve just suggested it and he said no. He is frustrated with me suggesting things all the time. He looks broken and so thin.

My job involves dealing with very difficult pastoral situations. I’m normally very good at keeping personal and work separate but I’m often surrounded by young people who have had a parent die and I’ve seen so many people dying at about our age. I can’t stop imagining that it will be dh.

Have they checked him for Addisons disease , I may have already asked , but your husband seriously sounds just like I was pre diagnosis except I didn’t have the enlarged lymph nodes but that can be a symptom as well . The only reason I’m alive is because we went private as we were fairly sure we knew it was Addisons as my mum also had it , I’d been in hospital and been discharged unable to stand for more than a few seconds but they refused to check for it .

He says that he wants to see if Bil or the GP get anywhere.
I looked at going private and we didn’t because the consultant in December seemed so good. But now I feel so guilty that we didn’t. We don’t even know what type of specialist he needs to see.
Would it be an immunologist?

No advice OP but massive virtual hugs to you, your dh and family

I am so sorry this is happening to you guys, the trauma and stress of not knowing but watching deterioration must be heartbreaking and worrying.

@Floralnomad what type of specialist would we go to?

The guidance is always that if someone deteriorates, take them back to A&E.

Growing & multiplying lymph nodes + too nauseous to keep food down = deterioration.

Best case scenario it speeds up diagnosis of a serious but not fatal condition.
Obviously you need to make sure it’s not the worst case scenario.

You’re justified in calling an ambulance because he simply isn’t well enough to sit up in A&E for hours. If you drive him yourself you must be prepared to tell reception he’s too sick to sit up for long, that you need help getting him out of the car, and he needs to be on a trolley.

My suggestion would be a chest physician or haematologist, but it is difficult to really advise which, given that there is no clear answer re the blood tests.
You need a GP to actually send you to A&E with a letter, if possible to phone ahead.
IMO, anyone with rapidly multiplying swollen lymph nodes, weight loss and now unable to eat and drink is a medical emergency and needs to be seen urgently.

anyone with rapidly multiplying swollen lymph nodes, weight loss and now unable to eat and drink is a medical emergency and needs to be seen urgently.

Absolutely.

He is in good spirits mostly (apart from despair at how shit the doctors have been) and I’ve been trying to hide how upset I am.
Work is a great distraction but a lot of my work is quite emotionally draining and I have medical issues myself which cause fatigue so I’m having to be really careful in pacing myself.

anyone with rapidly multiplying swollen lymph nodes, weight loss and now unable to eat and drink is a medical emergency and needs to be seen urgently.

I just said this to him and he said they were not rapidly multiplying and got cross that I’d suggested hospital again.
I see his point to some degree as over the past couple of months he has been to hospital appointments, gp appointments or a and e so many times and no one has seemed concerned enough to admit him or rush any tests through.

I am angry because the consultant was so thorough and concerned and I had such hope. I know he has all the results and we’ve rang 3 times to say he has got worse and been told doctor will ring and they haven’t.

Endocrinology , but a 9 am cortisol at the GP would be a start . Hope you get to the bottom of it soon 💐

I am sorry you are in this awful situation OP.
Can I just ask:
Have you emailed or written to the GP with details of your DH's worsening condition?
Ditto the consultant's secretary?
Copied to PALS?
I say this all the time on here, but in the NHS phone calls very rarely work. There used to be a saying "if it isn't written down it never happened".
An email, or a written letter delivered by hand to the surgery (write "By hand to Dr X on Date and time on the letter and the envelope) HAS to be recorded , read and acted upon.
If the consultant you saw was concerned, he/she just needs a reminder.

This is just awful @MyCake you just sound totally exhausted. Please do either get GP appointment or get GP referral for a private appointment.

Check what type of Consultant your original one was. You could just google him/her

I don't think any of us should be offering a diagnosis on here. OP's DH needs to be seen by a doctor asap.

He has seen so many doctors and although he has deteriorated further in some ways, he was still very unwell the last 2 times he was seen.
I hate myself for not insisting we saw someone privately earlier. I feel sick with guilt and worry.

He is drinking fluids and eating small amounts. He is sleeping a lot but is fully alert and awake between sleeps.

The dizziness, headache, numbness, weakness and visual issues have been going on for literally months and it took about 5 GP appointments before he was referred. He was sent straight to hospital and waiting 8 hours for the doctor to say it’s chronic not acute so we can’t help you.

My youngest dc is starting to really worry 😞
We have managed to play it down for months but it’s more obvious now because he has lost so much weight.

I have been unwell in the last couple of years and although I’m a lot better, my poor dc have had enough to worry about. I still use a mobility aid at times and it seems so bloody unfair on my dc that my poor dh is now going through this.

Please OP. If you haven't already done what I have suggested, sit down and do it now. Keep a copy of the letter.
Google the consultant you saw and send a copy of your letter to the address of the hospital you went to.
It will take you ten minutes.
Post the hospital letter.
email PALS.
Deliver the letter to the surgery by hand.
Keep a copy for yourself.
Include DH's full name, address, Date of birth and NHS number.

Use your posts on this thread to summarise your DH's condition.

@OP I'm sorry I don't have anything practical to suggest here to help in addition to what others have already suggested, just wanted to give you a virtual handhold and hug and say I'm so sorry you're all going through this and I'm thinking of you and hoping so much for a positive outcome. You sound incredibly strong, I know it must be so tough trying to hold everything together at this time.

Hang in there OP, and keep fighting. Please please don't beat yourself up for not insisting on seeing a private consultant. No one has the benefit of hindsight and it really shouldn't be this hard I know, but with the current state of things you have to shout loudly to get seen, as you are, and you're doing everything you can to advocate for your DH.

Crossing everything for you all

He was sent straight to hospital and waiting 8 hours for the doctor to say it’s chronic not acute so we can’t help you.

They think it’s chronic not acute. Where are all the test results? Where is the diagnosis + prognosis? They have told you what it is.

There’s is the possibility that they’re wrong; or the illness is behaving in a non-typical way; or there’s something else going on as well.

Could you afford a private GP appt? We get free video private GP with our health insurance, you can upload notes/files ahead of the appt abed they can then right a referral letter to the right speciality. Even if you have you front this up front cost they could hopefully tell you where they would send DH next to help you concentrate your efforts (or give weight to rocking up at A+E)

I would hazard immunology/haematology/endocrinology butt an not a Dr

it cant hurt to drop an email to PALS of the hospital where you are waiting for the consultant's response.

Have they 100% definitively ruled out leukaemia and lymphoma?