K's health status

[James]

Hi Tink,

Great news ....... what did I say about K being a tough cookie? :) I hope you are taking care of yourself too - regard it as getting fit for when K comes home :D

[Tink]

Yep, I'm trying to get all things around home in order and still try to relax. This time I'm really focusing on not overdoing it. Sleeping on a cot at the hospital really wears one out, I've figured out.

[Shelley123]

So pleased to hear that K is doing so well.
Look after yourself and give yourself treats, you have been through the mill.

[angieh]

Brilliant news Tink! More ((((HUGS)))) and truck loads of positive healing vibes for K.

[Mags]

Pleased to hear K's recovery is going well, Tink.

[dandysmom]

Very good news!

[calismum]

Pleased things are going in the right direction. Keep positive. (((hugs)))

[Moli]

Brilliant news Tink..so pleased things are going well.........

[Aquatic]

glad to hear things are going well x :D

[pookyandjo]

glad that things are continuing in such a positive way... tell him to keep up the good work and keep on getting better...good too that you are bearing up well... keep looking after yourself cause you will need all your wits about you when he comes home.... any whisper from the hospital on when that will be??? given that he is doing so well...it may be sooner than you think!

take care

[angieh]

How are things today, Tink?

[Tink]

Okay..he is a little down because he is not going to be able to work again anytime soon (if at all) and we have some major financial things to figure out. Like major as in figuring out if we're going to keep the house, sell off major assets he has, rehome his fish, declare bankruptcy, etc.
Don't worry though, no matter what I am keeping my kitties and ferrets..even if i have to move back in with my parents :roll:
Oh, today is our four year anniversary. Think I'll bring him some real food and we'll have a hospital bed picnic.

[Kazz]

Real food is a good choice, if the food in USA hospitals is like ours...real food is good.

[angieh]

I am a great believer in realistic planning Tink - enjoy your real food and think about every possible avenue before deciding on your way forward. Stick together.

[dandysmom]

Agree, real food would be a treat for him. Hope you can work out the financial situation, and at least he's recovering and you're together ... so I guess it's OK to say Happy Anniversary?!

[Tink]

Yes it's okay :lol: I guess I'm just preparing myself for the worst (the house goes in foreclosure)

[Shelley123]

Happy fourth Anniversary Tink and K

[angieh]

I do so hope that your President's health reforms will stop this being an issue in the future. At least it's one thing we don't have to worry about here and I am very grateful for that.

[alexgirl73]

Happy Anniversary to you both. Try not to worry (easier said than done I know). He is still here, you are together and possessions can be replaced eventually ((hugs)) xx

[dandysmom]

Tink, I know the President's Stimulus plan has a provision for mortgage refinancing at lower rates. You may have already considered that, but thought I'd just mention it .....

[Tink]

today was emotionally grueling and depressing. physically he's progressing though. i'm just wiped out.

[Tink]

i was going thru bills and i went to get a folder to organize everything out of the filing cabinet and i found all this old stuff he filed.
the fact that he had enough energy to do that and thinking back on the day we bought that cabinet and how full of hope he was and he had ideas and he even made a drawer for me and labeled things for me.
well it made me cry because there was something kind of tragic about the fact that i forgot that person and i haven't seen someone with that much energy and enthusiasm for life in a long time. he used to be so full of life, you know? and the amazingly huge difference..and just the fact i FORGOT that he was like that before.
i remember him trying to make me smile. you know how out of character that would be right now?
i just really miss that person. he used to push me and make me get out of my comfort zone and brighten my spirits and force me out of bed and make me breathe fresh air and made sure i ate good food. all i had to do was be myself and be happy and he was happy. and now..now we are rallying around him trying to remind him that he might like to live. and he's defeated and he's miserable and he stares at the wall and he doesn't light up anymore...it just breaks my heart.

[pookyandjo]

Dont worry Tink.. what is this??? day 3 or 4 post op??? its very normal to have a few down days around this time...in fact im surprised that he has been so upbeat thus far.... given the severity of his surgery...
He has had a tough time of it... , so have you... but just like his illness didn't happen overnight... his recovery isn't going to happen overnight either.... it may very well be two steps forward and the occasional step back... but if you keep that in mind and take a few deep breaths so you can work through it... it will make it just that little bit more bearable...
the light IS at the end of the tunnel... you just have to take K's hand and make your way to it TOGETHER....you will get through this... what doesn't kill you makes you stronger... im a firm believer in that
take care:)

[Shelley123]

It's no wonder you feel exausted Tink, you are on an emotional roller coaster. Straight after the op you would both be amazed and on a high because he survived. Now reality is probably setting in about how difficult life is going to be during recovery. You will be very tired and will have very bad days, but you will also have good ones and you will both come out at the other end together.

[dandysmom]

I can't add one word that Jo and Shelley haven't already expressed so well.

[angieh]

It's reaction Tink - to his huge operations and the hard times you've both been through. (((((HUGS)))))

[alexgirl73]

can't add to what has been said, so just sending much love and ((hugs)) xxx

[MrsH]

can't add to what has been said, so just sending much love and ((hugs)) xxx


ditto from me too xx

[Tink]

decided to stay home today. not feeling so well.

[kado]

I am sorry your feeling offish. Hope you feel better soon

[dandysmom]

Get a good night's sleep; hope you'll feel a bit better in the morning.

[Tink]

thanks i've had a horrid migraine for the last week or two and last night i started vomiting. i just took a nap and i'm gonna take it easy tonight.
they might let k come home this weekend!

[Aquatic]

Hope you get better. x
Glad to hear K might back home with you this weekend :-D:D

[yola]

If he's coming home you'll need your wits about you, let's hope that migraine's on it's way out . . . will there be some nursing care provided for him initially?

[Kazz]

Thats news!!!! home this weekend for abrak do they mean or for good?

You need to be well yourself before you take on nursing care or as Yola has asked will they provide nursing back up for him?

If not you need to be well enough in yourself to look after him and keep yourself on an even keel.

Try to look after yourself.

[dandysmom]

I echo the above. take care of yourself! I do hope you'll get some help with caring for him.

[Tink]

Yeah, he'd have to come home with a picc line again so we'd have the home health care nurse probably stopping in once in awhile to check the site and make sure he's changing the bag correctly.
I have mixed emotions about it too. Just because I know how much fun it was last time he had to do IV meds at home. At the same time, he's really depressed and maybe this will help. I'm kind of nervous about it actually.

[calismum]

It's such a difficult one isn't it. One the one hand perhaps having him home will help his spirits and he can have a bit of normality. ON the other hand he will be frusrated and perhaps impatient and angry. Either way you will need to be fit and strong.

Look after yourself. I suffer from migraine and I know how debilitating they can be - especailly if you don't pay attention to them. Sounds as if you've just tried to soldier on.

Take care. xx

[Shelley123]

Hope everything is going ok for you Tink. You are bound to be nervous about K coming home, i would be too.

[Elaine]

Hope everything goes well for you both xxx

[dandysmom]

Me too. You've both been thru it, not going to be easy...(((hugs)))

[Tink]

he's coming home tomorrow afternoon. i'm feeling kind of overwhelmed in general. i'm happy but i'm inundated with emotions and i just need to detach from that right now so i can rest.

[smudgley]

Glad he is coming home. try & relax a little Tink.

[pookyandjo]

good that he's coming home...he will be able to relax in his own environment and sleep better without all the comings and goings of hospital staff..just remember to take things one day at a time...
enjoy having him home and relax xox

[Mags]

Pleased to hear K is coming home, take things one step at a time Tink.....remember to take care of yourself too...

[MrsH]

So pleased to hear that he's coming home, make sure you look after yourself too.

[Moli]

Great to here he is coming home Tink...as everyone else has said, make sure you look after yourself too...;)

[dandysmom]

Here's another voice saying take care of yourself too,

[calismum]

Great news, but take care of you as well as him. ((hugs))

[Tink]

after prepping us all day yesterday for his departure i've called to see when to pick him up only to be answered by an angry k saying they might be changing their minds again and one of the specialists decided to be undecided and no one is answering him and i swear to god these doctors just want me in a strait jacket. i'm so incredibly frustrated.

[calismum]

Oh tink, that is so frustrating.

[dandysmom]

OMG, how annoying! This isn't helping his spirits and disposition either; not to mention your nerves!!!

[Tink]

i'm so pissed off right now.

[dandysmom]

Understandably! Aaargh!

[Tink]

Thanks. He is home. We're just gonna wind down now.

[dandysmom]

Glad he's home!!

[Shelley123]

Glad he's home, take care both of you.

[MrsH]

So glad he's home now.

[Tink]

To update: Well, it's gonna be a tough road. He will probably never work again. Looking into Disability and selling things in the meantime to pay the bills.
The infectious disease doc told us his immune disease is similar to the treatment it needs as an HIV patient. Meaning he's going to have to be on drugs the rest of his life to try to make sure nothing like this happens again.
The meds make him really sick. We're taking it one day at a time.

[dandysmom]

That's so sad about the meds, Tink. Hopefully maybe they can adjust the dosage to the point that it's effective but won't make him so ill??? Is it possible for him to have an antidepressant with the other meds so he won't be so low?

[Tink]

he's refusing "more pills" as he puts it. i can understand why but i'm with you, i think it might help.
meeting with an attorney tomorrow to see what his chances of getting Disability are.

[dandysmom]

Fingers crossed that will go well!

[Kazz]

Am I ot understanding something why need an attorney for disability? doesn't the Doctor just fill out the form and I would imagine open and shut case in K's case.....

[calismum]

Hope all goes well for you tomorrow.

xx

[Tink]

Am I ot understanding something why need an attorney for disability? doesn't the Doctor just fill out the form and I would imagine open and shut case in K's case.....

No it's a bit more complicated than that.
You don't have to have an attorney, it's a choice. It tends to expedite things and they can give you advice about filling out the paperwork correctly.
I won my disability without an attorney but the case I had with one is still in appeals. I was approved on the one I filed independently because I knew what to do this time around. It's actually a really complicated, slow process.
If you're lucky, you'll hear back in a few months. Or it can be like me and draw out for a few years. To get a hearing is a year and a half waiting list and cases in appeals are there for minimum of 24 months. There is a lot of paperwork and needing to prove to the government and even in K's case where it is physical they will still fight you if there's any possible chance of work you can do..they will consult with vocational specialists and have government hired doctors inspect you rather than your own. It's an exhausting process to be honest.
It also depends on where you live and how overwhelmed your local government offices are. Ours are pretty inundated trying to sort through applicants.

[dandysmom]

Tink's right; you have to jump thru hoops and go thru all sorts of paperwork and it can still a take years, tears and appeals just to get the system to work. Most people do need an attorney. In cases like this I wish we had your National Health service... it may have problems but I think it's better than what we have now, even though our right-wingers call it "socialized medicine" !

[Tink]

okay i just need to vent. this has been a prob the last few months and it's happening again and what the heck am i supposed to do?
if i'm supportive/interact with him, he pushes me away, rejects everything i say, shuts me down..which is kind of hurtful.
if i give him space, he feels abandoned and like i don't love him anymore.
i know he's angry and in denial and depressed but what do i do without going crazy myself?

[Kazz]

Is there a support group at the hospital....or whom the hospital could put you in touch with? I think you need outside help with something as life changing as this is.....honest. Even if K does not want to go you could go........

[Kazz]

And when you think about it the old adage "we hurt those who we love the most" is true... and why because we have the power to hurt and be hurt...It's true, and very sad.

When we are in a close relationship, we make ourselves very vulnerable. It's that trusting vulnerability that makes the relationship close. We depend so much on the other for emotional support, that even a small off comment can hurt us greatly.

I don't think it is always intentional or conscious, but because of the close emotional connection and tie, what we do that might not bother a friend as much or a stranger at all, can be devastating to a lover or someone to whom we are the closest in every area of our life.

And when you are ill or recovering from a serious illness you lash out sometimes because its "bloody hard" not to.

And you hate seeing people who you love suffering/upset because of your illness and then wham... the guilt kicks in and that is rapidly followed by anger...which sometimes focuses itself into anger at them for making you feel guilty and then "wham bam"

[Kazz]

Wow wrote that without thinking......a bit close to home maybe....

[dandysmom]

Close to home or not, Kazz, that was very true ........

[Tink]

thanks Kazz, what you said made a lot of sense....i been feeling like there's some resentment there from him but i couldn't think of why..never thought about the guilt thing

[Kazz]

thanks Kazz, what you said made a lot of sense....i been feeling like there's some resentment there from him but i couldn't think of why..never thought about the guilt thing


Its because of his illness that both your lives are changing..you have said briefly you are planning on selling things...more responsibility.

[Tink]

he is having fainting episodes now. a ton of appts. next week so we will address it with the doctors then...i think driving is out for him till we get this settled at the least...

[dandysmom]

Oh, I'm surprised he's been driving at all after that serious surgery! I don't like those fainting episodes at all; hope all goes well tomorrow. Do take care, Tink, and try to keep him from overdoing. (((hugs))) Easier sad than done ....:roll:

[Tink]

it could be several things we are thinking--1)blood sugar dropping (he's been on insulin lately and having to check it and not been able to eat much), 2)blood pressure dropping (he has meds that do that and another to increase his heart rate, it's all so confusing), 3)side effects of all these meds.
gonna take this up with infectious disease. the fluconazale is so hard on him. he actually has been really good and both times he was just sitting or standing when it occured.

[Kazz]

Hope all is going well and the blankie is working its magic.

[Tink]

thanks his mom picked him up and they went to cardiologst, infectious disease, and stopping by lawyers to make out a living will..busy day for him, i expect he'll be exhausted once he's home!

[dandysmom]

Hope all goes well at the visits and that he isn't to wiped out.