An update - what happens next????

[Poshdog]

Some of you may recall my monstrous 3 part move with soon to be 100 year old mother and autistic adult son. Moving away from the multigenerational setting to individual abodes within walking distance. On day of final move, mine, partner has ambulance - dehydration, delirium and turns out, endocarditis. This results in 7 hour op for replacement aortic valve and a 'patch' for ravaged heart. He comes home today after 10 weeks, guess who will support him? I have coped on 4mgs, no pain, some stiffness, brain all over the place, forgetful, no stamina, running on empty! Reluctant to increase as adrenals must be kicking in, I am still standing but only just! This is really an offload to you lovely people, not sure help available but love you all for being there. Xx

[Constance13]

Oh Poshdog how awful - for your poor husband and for you.I have always been reluctant to up the Pred but, as many people on the forum said " QOL is MUCH better than suffering". If you leave it too long pain/discomfort will only get worse - then you'll have to start on an even higher dose than you would have to atm. Be sensible!

Post when you are down/need help.

Hugs and best wishes. 💐🍀🍀🍀

[Poshdog in reply to Constance13]

Aw thank you, I will! And you are right, an increase would be sensible. If only I could be gagged everytime I say I can do it! Xx

[Longtimer in reply to Poshdog]

Horrible situation for you both...but increase for a couple of weeks then try to go back to where you were....fingers crossed things will ease for you both .....keep us posted, it helps to offload...

[DorsetLady PMRGCAuk volunteer]

Hi,

Good news on hubby’s recovery, but it will be difficult for you, so think you need to do the sensible thing and increase Pred a little particularly as it sounds as if 4mg is not enough before extra load coming your way.

I know it may be disappointing, but needs must, and if you only increase, say to 6mg it be well be enough to get you through, and still be low enough not to upset the adrenal applecart.

Many of us have cared for loved ones whilst having PMR or GCA and know the toll it can take, so be mindful to take care of yourself as well, and if that means more Pred temporarily, so be it.

🌸

[Poshdog in reply to DorsetLady]

I love it when you all talk sense to me! I have had stern talk with myself and will up dosage. Will also try to build in me time and time to have takeaway pizza with son. Pacing myself, easier said than done, is the way forward - baby steps. I suspect you may hear another off load in not too distant future. Thank you in advance xx

[123-go]

Hello Poshdog. Those of us who have read your previous post may have imagined that you would now be enjoying the luxury of less stress and more time for yourself with your mother and son settled in their new homes. I'm so sorry to hear that this has not been true for you and that you are now tasked with supporting your partner during his post-op recovery.You must be superhuman to have managed without increasing your medication but if an increase is needed I'm sure you will accept this.

Do come back here whenever you need a listening ear. We are with you in spirit and are rooting for you. 🙏😘

[Poshdog in reply to 123-go]

You are all my first port of call, thank you. Not superhuman just an idiot who finds it hard to say NO when somebody needs help - a late developer! So lovely to know you are rooting for me - on the plus side I have lovely new neighbours so not all a struggle. Xx

[PMRpro Ambassador]

Don't leave it too long - you will do neither them nor yourself any favours. I have had two years of that until my husband's death in October - I was on a much higher dose of pred to be able to cope physically so adrenals wasn't so much of a consideration but it was still a mental battle a lot of the time. If you crumple, you are no use to anyone, you, him or anyone else.

Have a read of this thread - because there is a lot that is applicable to you I suspect:

healthunlocked.com/pmrgcauk...

[Poshdog in reply to PMRpro]

Thank you - seems like there may be a number of marbles rolling around looking for a home!

[PMRpro Ambassador in reply to Poshdog]

I suspect so!

[Blearyeyed]

You can arrange for your partner and yourself to get some level of home help and social care by talking to the Discharge team and explaining your own health issues and needs as well as your husbands in the UK.

You need to get a phone call from his Occupational Therapist arranged before he leaves to get them to assess your needs and his and they will pass on the report to your Social Care Liaison / Worker and the Discharge Team.

Its better to get your objections and needs discussed before they get to sign off the discharge as then the hospital stop taking responsibility or interest , except for Medical follow ups , in the patients needs and it can be an up hill battle sorting out At Home assistance after the fact. If he is already home you can still ring the ward , find out who was his OT assessor and speak to them the discharge team and social care liason for help and to find out whom to be able to arrange emergency home help with.

Don't be afraid to over egg your situation and don't hide your needs or fears because you feel embarrassed to ask for help. Often they need to know the worst , and especially know that he might end up needing to be readmitted or to go to a respite placement , to get up off their bums to do something.

You should at least get a Home Visitor in morning and evening to help your husband with his dressing and personal needs if he is going to need support moving about as your condition does not allow you the ability to do that.

Good luck , let us know how you get on and I hope the OH recovers swiftly and smoothly , you've been through more than your fair share already , Bee

[Poshdog in reply to Blearyeyed]

Thank you for such a comprehensive reply. So much appreciated. OH was told by doctor and staff nurse yesterday that he would be discharged today BUT then they realised they had been counting the weeks of antibiotic treatment begun at Bath hosp and not from the change of antibiotic given at Bristol where op took place. Now given date of Feb 3rd - unbelievable. We are devastated. Xx

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Well devastated as you may be, that gives a bit more time to get things organised and for you to get a bit stronger.

But, as usual, all things can change in a instance. 🌸…

[Poshdog in reply to DorsetLady]

You talk such sense. Action has taken over from devastation. I'm a viking too - lived 15 years in Scandinavia - something must have rubbed off xx

[Poshdog in reply to DorsetLady]

Too right - things change in an instant! Now the car has broken down! Looking forward to Chinese New Year. Up from 4mgs to 7.5. Making a difference! Xx

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Oh dear - pain about the car - but good news on yours! Take care.

[Blearyeyed in reply to Poshdog]

That is a shame , but at least that gives you nearly a month to get your ducks in a row and get in contact with the right people in charge of the OHs care to arrange the most help that you can to reduce the heavy , physical work of care at home. Start from now , as I know from experience as well as there being a lot to sort they may , and probably will , try to speed up the discharge process and your OH could be sent home a lot sooner than that.I know you don't like to say , " No" to the requests of you family and they might be more resist to getting outside help but I hope that you will be strong and resist any of these objections to get the help you all need.

Both you and your OH will recovery quickly because of getting extra help and you will be able to get back to enjoying the new home and lifestyle you were moving to before this emergency.

[Poshdog in reply to Blearyeyed]

Getting stronger by the minute thanks to understanding and support from this site. Devastation has turned to action and the ducks are lining up.

[Jackoh]

Agree with everyone else. Perhaps to put up your pred for a short time to cope initially, you can always then come down after. Frustrating I know but you need to access all the help you can to get you through this stage as smoothly as you can. Please don’t try to be superwoman! Let us know how you get on. Xx

[Poshdog in reply to Jackoh]

Just trying to hold it together at the moment! Take a look at my reply to bleary-eyed for update. Really really appreciate all help xx