Message Boards for the CF Trust

Replies: 13 Pages: 1

Jelli

Posts: 5
From: Yorkshire
Registered: 24-Feb-2004

New Forum - Excellent!!
Posted: 25-Feb-2004 21:03

Reply

Hello eveyone on here. I posted my very first posting on cf trust today but I think I posted it in the wrong place as I posted it in the forum for parents and carers but I am actually a partner of a PWCF so I should have put it on here, but luckily I still did get a couple of replies so its still helped. This is a great new forum and a really really good idea. My husband has CF. We are both nearly 30, got married last August and have been together for 3 years. It is hard living with someone with CF but I think it must be harder living with CF. I love my husband very much and even though it is hard sometimes I wouldn't not be here. I am hard to live with sometimes so he gets just as much off me! As someone said as a non CF person it is difficult to fully understand what your partner is going through but my hubby says that as long as I am always around to give him a cuddle when he needs one then Im doing just fine.
My posting on the other forum was about lung transplants - my hubby is on the list but is having a few problems being on the list at the mo as he is very scared so I was asking for people to get in touch who are in the same position - either pre or post transplant so that maybe we can talk to people who are going through the same as what we are.
I have been reading the forums for about 2 years but have only just plucked up the courage to actually post a message myself! Believe me Im soooooooo glad I did.
Take care
Jelli
xxx

Louise

Posts: 63
From: France
Registered: 26-Feb-2004

Re: New Forum - Excellent!!
Posted: 26-Feb-2004 11:12

Reply

Hi, My name is Louise, and my husband Andrew has CF. We have been together for nearly 4 years now and we got married in October 2003 in Las Vegas!! It is very difficult sometimes to deal with a partner with CF, especially as it can be hard to admit that, seeing as our partners seem to have it much worse! There is an amazing amount of support for CF sufferers and their family though - unfortunately not from the government or the NHS though. It has taken a while for the hospital to get me involved in Andrew's care, at first I was treated a bit like an outsider who had no right to be there and I would get funny looks when i stayed in the room for his physio or to have his line put in. Despite the fact that I lived with Andrew and saw all the gross bits of CF that even they didn't see (often having to clean up the gross bits actually) I was still left out. So being the stubborn cow I am, I just kind of forced my way in!. What I would still like to see is some support from the hospital by way of a support group or even just the odd chat with the doctor or nurses. I don't know what your husband is like, but mine rarely tells the whole truth to the doctors about how he has been etc and I feel this is also something I could contribute with.

My husband is traeted at Nottingham, which is SUPPOSED to be a specialist centre. The pateints are spread over 3 wards also shared with MRSA (superbug) patients and other infectious diseases. The woman who runs it is a complete drip, and the whole things is for the most part, a complete joke. They are currently aiming to get a new CF ward at Nottingham, but I can't help thinking that even with a new ward, if they don't get new people running it it will still be completely inadequate for the standard of care PWCF need and deserve.

Another diffucult part of being the partner of a PWCF is all the ranting we seem to do!!!!! So enough from me for now!!!

Lucy

Posts: 87
From: North England
Registered: 09-Feb-2004

Re: New Forum - Excellent!!
Posted: 29-Feb-2004 15:57

Reply

Hi Louise, (and Jelli)!

Your frustration is palpable, louise! it must be hard being so involved with your husband's CF everyday, day in day out, only to be kept on the periphery at clinic visits and hospital stays. I imagine the team feel they need to be observing confidentiality - and that means even from spouses, etc.

Sometimes, rightly or wrongly, I find it helps to be in control of info about me. If its not all good news and recovery from chest infection, then I quite like time to deal with it myself, rather than dealing with other people's reaction to it. Seeing the doctor by myself can be quite useful then. I don't think it would be useful for me if my partner was to just barge their way in anyway! Maybe I'm just a control freak!! But no matter how much my partner is aware of, its nice now and again to have a bit of me-time with the hospital staff.

I wonder if the staff would need your partner's explicit permission for you to be present? I guess if they don't respond positively to that, then that's an issue to take up with them.

I hope the new unit in Notts comes soon. I guess staff and patients alike will be gagging for something a bit more appropriate. Its good to read of a partner of someone with CF with such a fire in their belly!

Keep in touch.

Luce x

Louise

Posts: 63
From: France
Registered: 26-Feb-2004

Re: New Forum - Excellent!!
Posted: 29-Feb-2004 16:51

Reply

Hi,

I know what you mean about having that time to yourself, and the last thing I would want to do is be there if my hubby didn't want me to be, but like I said, he just lies to the staff about how he has been keeping!!!! It seems like I am the only person who will actually press him for the truth of the situation and often it is me who has to persuade him to try new things and to keep up his treatment. The staff will just kind of give up on him. It was suggested to him that after a severe weight loss that he should try overnight feeds but he was soooo against the idea - I can't blame him they are pretty horiffic!!! He felt that if he did them he would never be able to come off them and that it would be the beginning of the end of him. I managed to get some info about them from the dietician and then when we got home I debated the pros and cons of them and told him the info I had gotten that he had been to stubborn to hear and from that he began his feeds, They are now a useful tool when his weight gets low but not a necessity and he is pleased that I was there to pick up on the things that he missed and tell him later on. I know that it is his disease and believe me I would give anything to take it off him, but it is so hard not to get totally involved, especially as I know that one day it will take him away from me. I have to keep him fighting and well and listen out for those things he may miss in case they are important.

I may seem like a bit of a nutcase but I really do give him space to sort things out for himself too. I think that is important too as I would hate him to think I was trying to control his body. At the end of the day he is the only one who knows what it feels like and he is the only one who can fight him but if there is ANYTHING I can do to help him along and ease his suffering just a little then I am there 100%.

I am really rooting for the new CF unit too. I hope it will be the breakthrough in CF care that is badly needed. It may not affect us too much though as we are moving to france in 2 weeks!!! Apparently the CF care is much better there too. I think it is more well known than here too. Most people have an inkling of what it is. In France it is called Mucosviscidos though. Also, strangely, Andrew can breathe better when we are there. We are right by the sea so that may have something to do with it. Whatever it is it does him good and that is all I need to know!!!

I know I can be a bit OTT about CF, especially when it comes to grumbling about it!!!, but when Andrew is ill somebody has to be keeping an eye out for him!!!

Louise xxx

Lucy

Posts: 87
From: North England
Registered: 09-Feb-2004

Re: New Forum - Excellent!!
Posted: 29-Feb-2004 17:29

Reply

I hope i didnt come across badly in my last post to you! I guess it just shows that services are not the best at explicitly stating what their stance is on partners of CF people. I think there has generally bean a lack of support in the health service for those "informal carers" who deal in their own right with a condition 24/7. You mention a support group as a possible solution. I bet there will be people who would agree with you. I think there has been a steer away from support groups cos pwcf themselves are not encouraged to get together. But I hope that wouldn't be a barrier to our partners! Our cheerleaders in life!

There can be a natural support group developing out of branch fundrasing groups. And of course our family support people and advocates.

But there is a need for something to be developed from the hospitals for partners - not just up to the CF trust and its supporters.

Its great that this site is here now. Bonne chance en France!!!

Louise

Posts: 63
From: France
Registered: 26-Feb-2004

Re: New Forum - Excellent!!
Posted: 29-Feb-2004 17:53

Reply

No it didn't come accross badly at all. It must actually be a bit boring for you pwcf having a constant cheerleader so I do try to tone it down every now and then!!!

Angel

Posts: 491
From: London
Registered: 17-Feb-2004

Re: New Forum - Excellent!!
Posted: 29-Feb-2004 18:33

Reply

My cheerleaders (mainly my mum and my boyfriend) are what get me through, couldnt do without them!!

Lucy

Posts: 87
From: North England
Registered: 09-Feb-2004

Re: New Forum - Excellent!!
Posted: 29-Feb-2004 22:02

Reply

Aww, Louise! Never give up cheer leading!! You're worth your weight in gold! We all have dips in motivation and mood which means our acceptance of whats best for us going cloudy for a while. And that's when you, and all the rest of our celebrated partners, come into your own.

My chap also doubles as the Creon Police. And the Colomycin police. Though he is much better policing the Creon, given that he is very painfully aware of the consequences to himself and our plumbing should I forget (or more often than not, am just too darn lazy to fetch) my creon!

You going to continue using the British CF board when you move? HOpe so!

Louise

Posts: 63
From: France
Registered: 26-Feb-2004

Re: New Forum - Excellent!!
Posted: 01-Mar-2004 10:02

Reply

Certainly will be using the british CF site, I am not terribly good at french yet anyway, hoping to pick most of it up while I am there - throw myself in at the deep end! I will not give up on the cheerleading then!!!

My hubby is ALWAYS forgetting to take his creon, why???? He always has to take it and always had had to so why the hell does he forget?!?!? And they are thinking of making the male pill?!?!?

So I too am a Creon policewoman, that is a very official title and one I intend to abuse from now on!!!

My hubby hs just been given creon 40,000 instead of the old 25,000 - has anyone else got that yet? It means half the amount of tablets - but still no good if he keeps forgetting to take the damn things. Another job for the creon police!!!

Lucy

Posts: 87
From: North England
Registered: 09-Feb-2004

Re: New Forum - Excellent!!
Posted: 01-Mar-2004 18:54

Reply

Wow, 40,000! Super turbo Creon.

I reckon they should make a slow release creon that you inplant under the skin. That way, we can never forget it, and I'll have the perfect excuse to scoff a mars bar every now and again.

Go, Louise! Go Louise! Go Louise!!

Louise

Posts: 63
From: France
Registered: 26-Feb-2004

Re: New Forum - Excellent!!
Posted: 01-Mar-2004 20:26

Reply

Wow - now I have my very own cheerleader!!!

Thank you!!

trouble

Posts: 2
From: Essex
Registered: 11-Feb-2004

Re: New Forum - Excellent!!
Posted: 01-Mar-2004 21:25

Reply

Hi
Interesting to read other CF partner's views. I agree that it is certainly a balancing act to show you care but to also let your partner manage their own health. I've been with my husband for 20 years now and have occasionally got the balance a bit wrong. I definitely think that if there were lie detector machines the clinical teams might get a more realistic picture, but joking aside, they normally pick up on what is not being said.

Louise

Posts: 63
From: France
Registered: 26-Feb-2004

Re: New Forum - Excellent!!
Posted: 01-Mar-2004 22:34

Reply

I hope they do pick up on it, although I really feel the staff at our clinic aren't as bothered as perhaps they should be. Or maybe it isn't fair judging them against how much I care for Andrew.

Striking that balance certainly is difficult. Me and andrew have only been together for 4 years so it is still, and no doubt will continue to be a learning curve for us both. It is hard for me trying to be a good wife, friend, confidante, lover and carer and hard for him to be all of those things plus keep himself healthy and his self-esteem high. I am sure we will get there in the end!

Wow - 20 years together!! You must know just about every trick in the book! Have you had a lot of comments from people who "don't know how you cope". I suppose if you think about it us partners of pwcf see a lot of gross stuff (as do the pwcf of course) but that all tends to just blend in with the grand scheme of things.

Jelli

Posts: 5
From: Yorkshire
Registered: 24-Feb-2004

Re: New Forum - Excellent!!
Posted: 02-Mar-2004 18:26

Reply

Hi all,

I would just like to agree with a few points made on here - the lie detector message made me laugh but its also very true and even my hubby agreed if he was made to have a lie detector test then the hospital would find out sooooooooo much more than he tells them, he does seem to have got a little better since we started going out together - now wether thats my influence or just him deciding to be honest is another question!
As for the hospitals - here in Hull Andy always gets put on an infectious diseases ward as he cant be on the normal cf ward because of his cepacia bug but I must admit because all the nurses know us we do get treated very very well and the nurses do know that I am going to be around pretty much 24/7. The last time he was in hospital he was REALLY ill, there was something wrong with his liver and they let me sleep in the dayroom, I think it was because they knew it would make Andy feel that little bit better knowing that I was close and could come to him quickly if he needed me. When he is in hospital I actually do most of the taking care of him - seeing to all his needs, the last time he was in the only thing I couldn't do was give him his painkillers and that was because it was pethadine and had to be injected. The nurses obviously were around to do it but it made Andy feel better if I took care of him and it made me feel better too because it made me feel like there was something I could do to help. It was such a difficult situation to be in and it really helped me enormously to know that I was caring for him in the way i do at home - I couldn't do anything else.
I see his cf specialist nurse with him most of the time (unless I'm at work) and his consultant and I know and always feel like I can get in touch with them myself if I need to at any time. I think we have a really good team here at Hull.
Anyway I think thats enough from me - I've gone on far too long now!!
Love
Jelli.
xxx