My husband was discharged this morning, so pleased to pick him up. Had to throw my dummy out the pram Wednesday.
It's been arranged by husband consultant that his HB not to go below 110. Wednesday his HB was 99 so I knew he would need a transfusion within day. Told Nurse I would not pick my husband up unless he had a transfusion. I was not going to back down, I insisted on speaking to a doctor, she told me that she would ask for a doctor to ring me but it might be the next day as the doctors finish at 5pm. This nurse went to my husband and told him he was being discharged the next day and his HB was 110. Within 2 hours a doctor rang again said that a blood transfusion was not going to be given. Again had to stand my ground, explained that his HB is not allowed under 110. I felt that again wasn't being listened to. Spoke to my husband Thursday morning, he'd been told he was having a unit of blood. Then hour later he phoned again to say he was having 2 units his HB had dropped to 93. He's had that many transfusions since being DNX, he's got lots of antibodies in his blood. Blood bank needs 4tubes for xmatch. So at 3 pm yesterday they sent for xmatch to be done again. His transfusion finished at 5am this morning. He's really been though it. On Tuesday I had to tell him over the phone his twin brother had died. I really wanted to be with him, but blasted covid put a stop to that.
Now is the time to feed him back up. He's lost 2st whilst being in hospital. So here's to us going forward. Xx
Written by
Jean24
To view profiles and participate in discussions please or .
Hello jean, goodness what a dreadful time you have had, and a bereavement on top! So glad you have ‘fought your corner’ for your husband and hopefully you will both be able to get rest and quiet to recuperate at home. Very best to you. Anne-Marie.
That’s good news your husband home you have both had a lot to deal with feed him up and take care of each other you did good to stand up for him best wishes Poppy xx
You are a star standing your ground and fighting his corner. Glad your husband is now safely home and can now convalesce safely in your care. Remember to look after yourself too.
From one Jean to another that was such good news to hear your hubby is home.
Don’t blame you making a fuss in these strange times, too many things are being put on the back burner with sad consequences, so give yourself a gold star 🌟 for persistence, now with a lot of love and feeding up he will recover soon and be be back to full strength once again.
Oh gosh bless both of you. What a hard week for you guys. Sending condolences for his loss. Pleased he is finally home & well done for fighting his corner once again. Take care of yourself as well as hubby xx
And that hubby is home with you. You can relax a little and feed him up. I hope he appreciates what you’ve done.
Hope you don’t mind me asking What does DNX mean and why a transfusion when below 11.
Please forgive the questions I’m curious as these days I’m rarely above 10 for hb. I have Et all I get is 1 iron supplement a day because too much interferes with other blood levels. I know this level is the main cause of my fatigue.
Thank you. DNX is diagnosed and his HB 110 or below. He just can't cope with fatigue, bone pain and other things that happen when his HB drop below 110. My husband got PMF, he's was diagnosed 31/2 years ago. With a time given of 3-5 years without a transplant. He decided not to go that way. So I'm just happy he's still here. That's why I will fight his corner every step of the way. X
Tough times indeed probably of the toughest nature. You are tough too and have used your intelligence and assertiveness to make this work for you so feel proud - hoping you can have some days of peace and quiet and recovery for you both.
He is very lucky to have you. Having someone that loves you that much and is willing to fight for you makes the difference in getting through these terrible times in chronic illness.
Good for you, Jean. Sometimes we have to stand up to medical people to save both their time and ours, not to mention keeping their patients safe. I am sorry you have been going through so much recently.
Thank you. It's so hard when your not there in person to fight their case. Unfortunately they put every person in a box under their health condition. Not thinking each person is different with their own problems. Xx
I’m very happy to hear he is finally home. You have been through so much. He is so lucky to have you in his corner. I’m also very sorry to hear about the loss of his brother. So very sad for him.
I have post ET MF, diagnosed in September, 2019. My doctor told me, at the time, I’d probably need an SCT in 2-5 years. Still deciding whether I’d even want one, if or when the time came.
Good luck with your hubby. I’m sure he will enjoy your home cooking again and sleeping in his own bed with his loving and supportive wife.
Your husband is so lucky to have you advocating for him. What you describe is all too common with hospital care. It why it is so important to have someone who can advocate for you when you are inpatient. When you are really ill, it is very difficult to advocate for yourself. One of the worst aspects of the COVID situation is the challenges of advocating for a loved one when you cannot be there in person. It sounds like you did a fabulous job doing what needed to be done.
It has been know for some time that at least 10% of all deaths in hospitals are due to medical errors. This may actually be an underreport. A recent study shows medical error as the third leading cause for death in the USA.
I doubt it is different anywhere else. This is why advocacy is so important when a loved one is in the hospital. Most hospital staff do their best, but even in the best institutions, mistakes get made. Advocating for your loved ensures higher quality care and may even save their life.
Now that he is home he can get the TLC he deserves. All the best to both of you.
Thank you. I won't make a complaint because I don't know if he will be going into hospital again and I don't want to make it difficult for him. This could be why people don't complain about loved ones treatment.
I would not be afraid to complain. Inadequate care can only continue when it is tolerated. If you feel his care was improper, letting the hospital administration know can make a difference for everyone. While there may be a few staff who would resent the feedback, most would not actually retaliate against a patient. It is just as likely that staff would regard your husband as a patient whose advocate is not going to tolerate improper care and would mind their Ps & Qs more carefully. I have been in a similar situation and did formally complain. I took action and had the hospital prohibit a specific medical practice (2 doctors) from accessing my medical record and from having any involvement in my case ever again. In my view - message sent - message received.
All the best to both of you. I am really glad he is home where you can give him loving and fabulous care.
Hi Jean, such great news your husband is home & congrats on fighting to get him the care he needed. I’m sorry about the loss of your brother in law. There are support groups & other things for care givers. The stress involved in taking care of our loved ones takes a toll & you need to be caring for yourself as well. I know Maz finds buddies for patients. You might consider asking if she has buddies for caregivers. You’re doing a tremendous job & I'm so happy you’re back together. Katie
Thank you. When they are in hospital they need to see people they know and love. Who will stand up for them. At this moment that's not happening. Lets hope that lock down will finish soon and in patients start to get their love ones visiting. X
My husband was rushed in on June 22nd I had to ring 999 we knew it was his gallbladder but it looked like he was having a stroke it was so scary.
Any how paramadics came out took two hours for them to get him stable so they could take him to hospital. He got to A&E at 2am and I had to pick him up at 4.30am he was in absolutely agony how anyone in there could discharge a patient in so much pain is beyond me.
7 days later I had to get the doctor he had to go back to hospital he had sepsis honestly the care was shocking. If I had gone with him there's no way I would of let him come home in the state they sent him out.
I think 1 person should be allowed to visit. He said it was hurrendous his mental health was terrible while he was in hospital for 4 days.
They missed his meals twice no water honestly it was basic nursing and care that was shocking nothing to do with covid .
The hospital shouldn't allow this to happen. My husband had 2 meal missed. His medication forgotten. The care is slipping because the staff are over worked. Under staffed, without the families of patients to help its more pressure on the staff. I understand that Covid isn't helping, but if PPI was followed by patients family and only 1 name person allowed in won't this help. X
My husband buzzed for water to take his medication two hours later he got it .
The ward he was on was a shambles no name badges on nurses empathy from some staff it was awful he said he felt like he was being punished never mind cared for.
Your right a least if I could of visited I would of took him drinks and food as his meals weren't up to much and he's not a fussy eater at all.
I'm having to feed him up. He's lost 2st in the time he was in there. Food wasn't up to much. Not tasty or hot. Nice home cooked food. Small portion so he enjoys his food without over feeding. Xx
You've really been through it Jean, as has your poor husband. Great admiration for the way you have fought for him. Take care both of you now he's home. Best wishes, Fran
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.