Getting admitted to hospital in Wales update

[jointpain]

Well after getting a call to get to A and E ten days ago because her platelets were at 4 and Hgb of 79 she had two bags of RBCs and one bag of platelets within three days. And got a bed in a ward by the Sunday. As she had a bag of platelets her platelets count went to 56 within two days Hgb was 90 then by Friday platelets were 625 Hgb 86 today Monday platelets were 1065 and Hgb 81 no more blood transfusion promised as gastroenterology say she will only bleed it away, she has resumed hydroxycarbamide at one a day since Friday day and she is on Clexane and been told she will have an endoscopy and a colonoscopy which never happened. It's a right mess. Not one doctor is contactable or in charge of her case.

[hunter5582]

This sounds like right mess. We do often have to be our own best case managers to ensure we receive the care we need. This is hard to do when feeling poorly and in the hospital. That is why having a care partner is so important. Some hospitals have "care buddy" programs where designated persons can stay with the patient to ensure their needs are met. I did this when I had the brain surgery. I had a family member with me 24/7 while in the hospital.

I hope your wife is soon fully recovered. Your support will be essential in ensuring this happens.

[lizzziep]

I’m glad there’s some improvement, but her ‘treatment’ is unacceptable. Have you tried PALS? Also as our MP’s are trying to impress at the moment you could also try your local MP. Although I think the hospitals seem to react to bad press more than anything, your local newspaper,or preferably national press/tv might gee them-up a bit. I know you won’t have a lot of time to do this maybe a friend or relative could help? Anyway wishing her all the best and sending you virtual hugs and a blooming big medal for all you have had to put up with.

[Bridie123]

Thank you for the update, my heart goes out to you both

[Bluetop]

Oh goodness. I hope you can find a MPN specialist to take charge and that the blood levels can be better managed.

[JP1952]

You have all my sympathy and understanding. I am also in Wales and enduring long waits for appointments and tests. I worry that while I wait my condition will worsen. In Wales the waiting lists are much longer than the rest of the UK, and certainly in my area no such thing as patient advocacy organisations. PALS unheard of. Accident and emergency departments are horrific with hours long ambulance waiting times and then when you get there waiting times of 20 hours or more and patients having to sit on the floor. I would like to add this is no reflection on the medical staff or the treatment patients receive at the doctor's or in hospitals . It is very frustrating for them and has made their work so much harder. It is how we have emerged after the pandemic.

[KLCTJC]

will be praying for her!! Hope she is better soon ❤️

[Spanelmad]

I think you have to find PALS in that hospital and state her case in a calm and concise way, do not back down and try and get her to a hospital with a MPN specialist.Neither of you can carry on like this.I think you've said that she had a appointment coming up, maybe contact the consultant direct to try and help you.

I'm Sending you strength and positivity.

[mark382]

I'm so sorry to hear all the problems with the hospital you attend. On a more positive note at least your wife is going in the right direction. I feel your pain regarding NHS in Wales. I'm fortunate that the haematology team I see are brilliant, but I guess that's down to individuals. Had to go to A&E on Saturday with my wife. Triaged fairly quickly as heart problem, but didn't see a doctor fir 4 hours - probably pretty good compared to what others put up with. I said to the doctor I felt sorry for her as she had to see the next hundred patients. She said we're OK. We all feel sorry for you out there who have to wait so long. Which gives a doctor's view of the situation. Praying your wife gets the treatment she needs and keeps going in a positive direction.

[Stevesmum42]

I’m so sorry the care for your wife is so very poor, you have both been through such a lot. It’s ridiculous that there is not a doctor to give her the attention and needs that she requires. I cannot even imagine the frustration and despair you must be going through. Hopefully with her numbers higher your wife will feel somewhat better.

Sorry I can offer you nothing but hope that you get better help, and to say I my best thoughts and love to you both xx

Sandy

[Aime]

hi, sorry to hear your wife is poorly. As others have said, I know medical staff are stretched and understaffed but the care we are getting is rubbish on the NHS!

Please don’t give up but push for the procedures your wife needs to have. She won’t be feeling like making waves, so you have to. These procedures are not nice but they weren’t as bad as I thought they would be, as I was well sedated and at least you get an instant diagnosis.

I never used to be a “shirty” patient but I’m fed up and turning into one, because it’s the only way you get whatever you need for your health. I don’t nag if it’s not serious but will if treatment is needed. I’m sure someone will be able to find a consultant or someone who can take responsibility. After all, it’s our bodies and our loved ones, who are suffering. I’ve heard so many horror stories recently in respect of late diagnosis, that I’m not going to back down. I feel a bit of a nasty person but we are left with no choice.

Thinking of you. Be strong and help your wife become well again.

Kindest regards Aime. 😻

[Poppy6060]

Hi I hope you can get all this sorted soon what a worrying time for you both best wishes Poppy

[Loubprv Volunteer]

Forgive me if I m wrong but I have met 2 patients at the Christie in Manchester who live in north wales. Perhaps you can transfer to an English hospital? Certainly worth enquiring. We have a small hol home on Anglesey and I went to Bangor a and e.

Never, ever, again. 7 hour wait, then we left. I actually had pneumonia so must have spread it round to everyone.

The sooner some sort of French card system is brought in the better. If you can pay a bit - fine - if you can’t afford to - that’s fine too.

Louise