Poss Long Hospital Stay-Info Please!

Penny-Pincher!!

Hi

This has been worrying me for 2 weeks now and have questions to ask but really just dont want to deal with it, and if I ask questions-I know I have too :rolleyes:

I have to go into hospital in next few weeks for possibly a few weeks. Im not good in hospitals and it wont really be a local one either (25 mins of train then tube) and Im so worried!

I have mentioned before I have Lupus & FMS. I have to use a wheelchair if we go out and in pain constantly. This isnt so much of the problem though. I had weight loss surgery 10 months ago weighing 23stone 8lbs-today I weigh just over 11 stone. I cant go into this too much as it may have to go to court (another story!)but the last few weeks I have been unable to keep food down or fluids, heart problems, severe health problems etc, but because of my fear of hopitals now the doctors have been coming to me, but they cant do it anymore and I have to go in. They will be doing tons of tests (not sure on all exactly), going to have surgery-possibly op reversed, kidney/liver ops, mri, bone density...everything basically! On top of the Lupus & FMS I wish somedays I could have been put out my misery-but have tried to keep chin up and positive for daughter (she doesnt know fully).

There are tons I would like to know, but the main questions are:

(1)I have to go to Kings College hospital London. Apparently they will have all the specialised surgeons they need to cover all possible problems including a fab rhumy for the SLE & FMS. Has anyone stayed in this hospital? How easy is it to get to-hubby will be coming from London bridge?

(2)Im going to miss my daugter (10) so much (and hubby of course-but you know what i mean), how can I ease this for both of us? Last time I left her was when I had the WLS 10 months ago and it was 4 days only-this could be weeks. She has her 11+ coming up and dont want her to worry too much

(3)I do all the finances, etc-is there anything I should prepare in case anything goes wrong? All from my account-we dont have a joint as I cant get hubby on my account. What about ordering food etc-i do all online and meal plan etc? I know Im worrying.

(4)Im worried about the cost of hubby and daughter coming up to see me all the time. They can get a rail card I think, but being on Income Support this is going to be expensive.

(5)What items should I pack and in what quantity?

(6)Hubby is going to be knackered travelling to and fro, any suggestions on making this easier for him?

(7)I am sh** scared! Any suggestions for my fears? They are taking me by ambulance to the hospital, so travelling is not a problem for me.

I feel better getting that of my chest As you can see I am so worried. Keep crying all the time and feel my days are very numbered.

I havent written this for you all to feel sorry for me, but to help if possible in my time of need.

Should I get family (nice ones) to help as much as possible?

I just want my 2 babies to be OK and this is very difficult for me to write. Im not a slushy person but they are my world. I am devasted and so frustrated that it has come to this-but will fight with everything I have to get better.

My hubby has been my sole carer for 2 years now and helps with everything (too much for a 30yr old guy!)I am 30 too, weve been married for nearly 12 years, together since 13 and have a 10yr daughter.

Any advice would be truly/greatly apreciated!

libra10

I can't offer any advice but sending my best wishes for the future.

Good luck

Stink_Pod

As someone else who has Lupus/Stills Disease, your post really touched my heart. I have just quoted your post and will try to add some replies to each of your questions, but it will take me a little while. In the meantime I just wanted to send you a virtual hug. :grouphug:

bernardh_2

Hospital radio seems to be aimed at the over 90`s, so I suggest that you take a small radio and `phones with you.Then you can listen to radio4,5,XFM or whatever you choose.
Your main problem,once your fears reduce,will probably be boredom - so plenty of good books would help.
I wish you all the best for your stay.

soolin

Can I suggest that you find out whether KCH has a pastoral service, or something similair. It doesn't matter if you don't have a faith, they help everyone and if you have a good service they can act almost as befrienders.

Visiting is a difficult issue, I have had spells in hospital and it is easy to become hospital dependent and depressed. I remember once my husband telling me that he had had a difficult day and me just telling him to go away and not to visit anymore if he didn't want to. Then laying awake half the night crying until the nurse phoned him to get him to talk to me. You and your husband and family must accept that it is difficult for all of you. The children also must be allowed, wherever possible, to make decisions about visiting. The last time I was in hospital my 13 year old son would not visit at all, so we didn't force him.He hated the hospital, didn;t want me being ill and just refused to come.

Phones, find out the hospital policy on mobiles. Assuming you are on a general ward many hospitals now allow mobile phones to be used during reasonable times. Texts and quick calls during the day can ease the loneliness.

Buy a cheap CD player with headphones, make sure it is cheap as hospitals are not the most secure of places. If you get bored with music then listen to talking books.

On a more practical note, take a notepad and pen. When the doctors do tests or talk to you ask the to tell you exactly what they are doing and why, and write it down. you are bound to be in a panic and won't remember things you ar etold later, you won't forget if you write them down. I've even got doctors themselves to write explanations down for me if I don't follow what they are saying (and I work in the NHS). A doctor should be able to explain to a layman what is happening, but sadly there are many that can't, but insist they explain it all to you.

Travelling, phone the hospital administration and ask about assisted travel for your husband. I don't know the criteria for claiming this but it is possible to reclaim fares, so find that out before you go in incase there are forms to fill out beforehand.

Take your own night things, it is good for your morale to wear your own things, take a pretty cushion if you have one or a light wrap for sitting up if it is too warm for a full dressing gown.

Take plenty of things to pamper yourself, nice handcream, lip salve, face cream. Several weeks in hopistal will dry your skin out, so take time to protect yourself.

Sorry, I've gone on a bit here. I hope all goes well though for you.

Soo

hilstep2000

If you are on income support, your husband may be able to claim some/all of the fares back, check with the DSS. I'd make your daughter little notes that your husband could give her every morning to tell her how much you miss and love her.
Yes, you should get family and friends to help, don't be proud!
Hope it all goes well for you, I'll be thinking of you.
Lots of Hugs and love.

Stink_Pod

I've made some notes next to each of your points. I'm based in the north so I'm unable to help with some of the location/travel questions. However, have thrown in my 2p's worth for the others - hope some of it is useful to you.

Im going to miss my daugter (10) so much (and hubby of course-but you know what i mean), how can I ease this for both of us? Last time I left her was when I had the WLS 10 months ago and it was 4 days only-this could be weeks. She has her 11+ coming up and dont want her to worry too much

IMHO, kids worry more when they don't know the facts, so be upfront with her, tell her why you're going in - BUT - tell her all the possible positive outcomes the treatment could give to you/the family. This will keep her spirits high. I promise you, getting your mind to focus on the good stuff will help you too.

How about giving her a "grown-up" task to manage while you're away. Perhaps she could be responsible for something you, and only you do, at the moment - I know this helped me when my Mother was taken into hospital at a similar age. Mother asked me to look after some household tasks like watering her favourite garden plants, making fairy cakes once each week for Dad's packed lunches, I was also allowed to open any post that arrived for her, telephoning her in the evening to review what was going on. Honestly, I felt as though my Mother needed me to keep going as I had her things to do, that kept me strong.

Kings have these natty gadgets at your bedside that allow web access, so you can promise to email her everyday advising on your progress.

You could set up and 'blog' for her, getting her to update it on a weekly/daily basis with what's going on, so you won't miss out on what's changing in her world. (If you need to know about blogs - just yell)

Finally, when my Mother was away, for the first time in my life I got some mail, she wrote to me from hospital - just general chit chat about how nice the nurses were, what she'd had for lunch etc. Getting a letter addressed to me was a great surprise and reminded me that she was thinking about me.

(3)I do all the finances, etc-is there anything I should prepare in case anything goes wrong? All from my account-we dont have a joint as I cant get hubby on my account. What about ordering food etc-i do all online and meal plan etc? I know Im worrying.

You can write a meal plan for a month and place the delivery order online before you go, I belived you can order for upto 3 weeks ahead. If you find that you're going to be in longer than 4 weeks get Mr PP to request the same shopping basket as before, he can repeat the month long menu you wrote. Perhaps this could be a job you give to your daughter - spend some time with her showing her how the online process works, at 11 she'll have no problem mastering it.

As for managing your finances - leave a few pre-signed cheques (kept in a safe place!) with him, together with your cashpoint card. Your cards will be safer at home and you won't need them anyway - although you will benefit from having some cash available as there is often a charge for web access, you may also to buy a newspapers/magazines etc He can bring your bank statements to you, if your feel so inclined. Also on a money saving note - you'll be spending less on food as you won't need to cater for yourself. .

Finally it is a bleak subject but something we must all face at sometime, so I am being practical here and sparing the emotional support.... If you really feel that you must plan for the worst, write him a letter containing all the details of the important stuff. Broad headings - Family - things you want to say to him/your daughter etc. Finances - money/insurance/pensions etc, Funeral - tell him what you want. Don't give the letter to him, it'll make you all feel wretched, instead take it with you to hospital, IF he should ever need it, he'll get it. I'm sure you won't need it, at 30 you've got years ahead of you.


(4)Im worried about the cost of hubby and daughter coming up to see me all the time. They can get a rail card I think, but being on Income Support this is going to be expensive.

I believe you can get special assistance here with an extra allowance that came via the hospital. I could be COMPLETELY wrong, but I know that my friends husband was given some help with travel costs when she was having a kidney transplant. If someone else doesn't provide an answer I'll happily give her a call and find out how/what they had.

(5)What items should I pack and in what quantity?

Assuming Mr PP is going to visit at least once each week you'll need to take enough clean underwear/clothing to last between his visits. Also, just because you're in hospital doesn't mean you have to wear bedclothes - for me, living in PJ's makes me feel like an ill person, instead I wear normal day clothes during the day and then put on PJ's at bedtime - exactly as I would at home. Just remember that hospitals are incredibly warm, dress in layers. Also take something warm with you, being able to go for a walk outside is often a godsend!

Other practical things.. You'll need toiletries, take sanitary stuff if you're likely to have a period whilst there. Take bubblebath, sometimes escaping away for a soak is a break from everyone around you.

Oh and while I remember...nail varnish isn't allowed so take it off before you go in. I learned that one the hard way!

Keep yourself entertained, if you have one, take a CD player or fill an MP3 player with your favourite uplifting music, escaping to your own world can be very nice at times. I also have a couple of AudioBooks on mine, these are comforting when I'm trying to get to sleep. Hospitals can be noisy a night, earplugs are useful, they cost a couple of pounds from Boots

I also found that puzzle books/novels were essential, as was a notebook and pen - I often used this to scribble down questions I want to ask the Dr's when they were doing their daily visits.

(6)Hubby is going to be knackered travelling to and fro, any suggestions on making this easier for him?

Tell him to take the odd day off, he cannot manage to see you every single day - he will get exhausted and this won't help either of you when you get home. Instead enlist the help of relatives to fill in the evenings he's not there, so you're not left without visitors. Also, ask your friends to drop in on him at home, often the time when he gets home to a quiet house and the weekends are the hardest/most miserable - well according to Mr Stink Pod.

Remember being without you will be hard for him too, you need to support each other.


(7)I am sh** scared! Any suggestions for my fears?

What are you afraid of, can you explain?

In the meantime, you really have to focus on the positive here. You are in the best hands, the possible outcomes could be life changing. Also, accept that the first few days will be scary, just as they were when we started a new job, new school, etc etc. After 2 or 3 days you'll start to fall into the routine of the hospital and your fears will reduce. Accepting nerves/fear seems to make them more manageable for me - perhaps I am weird!

If you have a complete phobia then hypnotherapy may help to relax you. Perhaps your GP could refer you to someone?

..... feel my days are very numbered.

OI !!! We will have less of that, you're going into hospital to improve the quality of your life, to get the experts to work out how best to help/mend you. Try to think about what you'll do when you get home, MAKE A PLAN to do something you REALLY want to do - perhaps a minibreak with the family, or a meal at your favourite place - whatever. Keeping your own spirits up is hard, trust me I do understand how bleak life with Lupus can be, but it is KEY to helping your body heal. Research has proven that patients who have a positive attitude recover quicker than those that don't.

Should I get family (nice ones) to help as much as possible?

Yes!

I just want my 2 babies to be OK and this is very difficult for me to write. Im not a slushy person but they are my world. I am devasted and so frustrated that it has come to this-but will fight with everything I have to get better.

Perhaps a card would be a good way to tell them how much you feel, being slushy in pen and ink is often easier!

Tap into that desire to fight, you have 2 MAJOR reasons to get better, and you will. If it helps you to know, I was pretty much bed bound a year ago, due to both the joint pain and exhaustion, having made some huge changes in my life I'm back at work, part time, and (touches wood) about 90% recovered. Your symptoms sound worse than mine, but trust me, there is hope for a better quality of life. Hang on in there.

Jo x :grouphug:

** Jeez, I've been typing for well over an hour - I wasn't expecting to produce such a tome! Apologies for typo's but I'm going to hit submit now, I need to go and eat!

Counting_Pennies_2

I can't help with all the specific major issues and you already have very good advice given. But hopefully the points below will help some way.

If you have an MRI, close your eyes before it moves you into position and ensure there is music playing to calm your nerves. If you can keep yourself calm, remember that if you can keep going and not ask them to stop it will help you in the long run as you won't have to go back through it all again. I asked how long I would be in there and counted back from there estimate, number counting drove me mad, but passed the time as I hummed and twiddled my toes to the music. They do offer sedatives so talk to them about the options. It isn't painful, you don't feel a thing, it is just in a small space, so just remember you are in good care.

In terms of what to pack, remember footwear. I wore flip flops and not slippers, that way I could wash them every day and wear them in the shower.

The hospital gadget of tv telephone and web don't always fully operate, I was disappointed not to have access to web when I went into hospital so prepare yourself just in case. You don't want to get your hopes up of MSE everyday and have them dashed!!

Look into the forum (sorry useless at doing the link on these pages) for reduced phone charges. When I was in hospital I gave out my telephone number and realised it cost a fortune for people to phone me and for me to phone out the credits trickled away like anything. Give all friends and family the code for saving money and when they have your telephone number they can dial the code before the telephone number and save money. I'm sorry not to be much help with this, maybe someone else can enlighten on the correct link.

Remember you are in the safest place for you. I was petrified of going into hospital, my admittances for my condition happened when my baby was 8 days old and 10 months old, I was petrified something would happen to me and I had only just got to know him. These are completely understandable fears of going into hospital, whatever your fears are remember that you are in the best possible care and remain positive. Talk through your fears with hospital staff. You will find the night staff tend to be brilliant, they have more time and if you ask them will sit and talk things through with you. Talk to the surgical staff about your fears they really are incredibly supportive.

It might be best for you to be in a ward and not private room if they offer one to you, that way you will have people to talk to if you want to, and if not you can close your curtains and have your privacy, may be see if you can get a bed by the window. I had both private and ward beds and felt forgotten in the private room and I felt my care wasn't as great. If possible go into the communal rooms, dining room and any lounge they may have and chat and chat with everyone about anything, you can make some wonderful friends and make time pass much quicker.

Good luck, keep smiling

sleepy

I don't really have anything practical to say, just lots of hugs.

At least you will be getting the best possible care. The doctors at Kings College Hospital saved my life when I was a baby (and the local hospital had given up on me and toldmy parents they should consider letting me go). They are the best in the world at what they do.

Savvy_Sue

Hi PP, in a similar state to you, only at least I know what they're going to do to me, and I should only be in for a week to 10 days.

I started a couple of threads on the Health Board: Any tips for a hospital stay? is rather long, but very helpful! I'll post my final list separately for if you haven't got time to browse it all - there may have been a few things I decided I wouldn't want, but not many. I have found the shopping an excellent displacement therapy! Oh, and if you haven't got a CD player then I picked one up in Asda yesterday for £7.99, it only plays 'real' CDs though, not ones you burn yourself, so just be aware of that.

Get Fit for hospital stay - your tips! is much shorter and so far covers diet, exercise and relaxation. As a result I have been looking out for relaxation CDs, and I think I'm going to get one of the Meditainment ones. I saw one in Waterstones recently, and then checked out the website: these appeal because they do not involve hypnosis or airy-fairy "open yourself to the force within" stuff, which I would not want to touch with the proverbial barge pole.

I have bought each of my babies a small cuddly toy which will be left for them with a suitable note. They won't appreciate it in the least, but I'm sure your daughter is more touchy-feely than my lads - could hardly be less so! I don't know what to leave for my wonderful husband, intend to write a slushy letter. I have got a will which covers what needs to happen now: husband gets the lot!

OK a few other things: when I had brain scan was not able to play music and anyway I am sure the noise of the machine would have drowned it out, but the operator did tell me how long each 'bit' would take and when it had finished. Practising a relaxation technique for use then would be good.

Don't know about Kings although I think that's where F-in-L had his heart surgery and if it is they were smashing. But I am sure I have seen posters in every hospital I have been in lately saying that you should tell staff if you need help with costs of travelling to and from hospital, and for visitors.

Definitely get all the help you can from friends, families (nice bits!) and also your daughter's friend's mums! Make sure your husband has all the phone numbers he might need to arrange for someone to pick her up from school - oh of course she may have broken up - or for her to have a day with a friend so he can come and see you on his own, etc.

In my bag I have a 'duplicate book' - mine's an old one with a sheet of carbon paper but you can get 'carbonless' ones. I'm going to write a list of what I ask my long-suffering husband to bring me, and then I'll have a copy of what I have asked him to bring, so I won't ask him 6 times for tissues and forget to ask for clean undies!

And I'm planning to pack 5 or 6 carrier bags with the essentials - undies, pjs, treats, so he can bring one in each time he visits. I'll be near enough that he should be able to get in every day, barring disasters.

Silk is brilliant for lightness, coolness and warmth. I've cleaned out the charity shops of Bristol in my quest for silk shirts which I'll use as pj tops and wear during the day.

Finally, last year was the year I felt ill. This year, however, is NOT the year I have surgery which may or may not correct the problems, it is my PINK year. I'm finding that a helpful way of looking at things!

Savvy_Sue

I have bought or found:
Ear plugs

Slipper socks - these have already been very useful, my feet were freezing in May! Slippers / showershoes / flip flops

Pyjamas / nighties / dressing gown / wrap or shawl or bedjacket in case you do feel cold

Lipsalves / vaseline (tiny tin for 99p-ish from Superdrug)

Moisturiser (and I've got some special stuff for my eyes!)

Toothbrush (have bought a cheap battery one as my electric one doesn't hold its charge very well), toothpicks, floss, 'brushaways' or 'HTC' things for if I don't feel like a proper tooth clean, mouth wash

Radio / CD player and CDs

Tissues (mini packs) / baby wipes / moisturising wash wipes

Notepad and pens

Carrier bags (to send the dirty clothes home in!)

Change

Anti DVT socks if you're going to be immobile

Towels

Handheld fan - has to be battery operated, found one in Poundland yesterday which has a water spray bottle underneath which I reckon is going to be a godsend, as apart from anything else I can put it on my locker and leave it running, won't have to hold it! Disposable pants / panty liners / femiwipes

Antibacterial wipes for surfaces

Mirror / manicure set

Eye masks

Antibacterial handcleaner (for any visitor who gets to your bed and hasn't used it on the way into the ward - if you haven't got a dispenser next to your bed! Hairbands / clips

I am also collecting or looking for or hoping people will give me:

Short stories, magazines, puzzle books / pencils etc

Readers Digest - I have subscribed for a year at their bargain price! You may find if you don't pay the invoice they'll only stop it after 3 issues, so that may suit you!

Essential oil of lemon or orange and spray

Lockable travel pouch - haven't found what I'm after yet, want something I can attach firmly to the bed ...

and so I don't starve ...
Squash

Cheesy oatcakes / mini ryvita

Bottled water

Biscuits

Sweets

Dried fruit

Salt and pepper / seasonings

Cranberry juice

...

Hope this helps!