Message Boards for the CF Trust

Replies: 11 Pages: 1

kc

Posts: 17
From: Huddersfield
Registered: 09-Feb-2004

Hospital Admission
Posted: 20-Nov-2006 20:43

Reply

Been to hospital today with my Son who is 17. He has to go in next week for 2 week course of IV's and they are going to re train us and him on how to do home IV's. His weight is down and lung functions not improving. He grew Mycrobacterial Absessus in the summer, although the Doctor's think he may have been growing it for quite a while and it wasn't picked up. He is really down about going in, naturally, and we are not happy aboput it either as our Daughter (non CF) is to go into another hospital for an Angiogram at around the same time. I am feeling really down at the moment with everything and because I feel that I can't do anything to change things for either of them. I don't think I can cope at the moment with this and working, but need to financially. Just wondered what other people do. I sometimes ask for reduced working week but feel they may get fed up with me asking for this. Sorry top be so negative, just can't seem to pick myself up, even though it's not me who is having to go into hospital. Just a worried mum I suppose. Thank's, and hope I haven't depressed eveyone else too!
Karen

Tim Davies-Moss

Posts: 145
From: Shropshire
Registered: 06-Nov-2006

Re: Hospital Admission
Posted: 21-Nov-2006 12:56

Reply

i regret that the only thing u can do is visit regular and keep sneaking in the McDonalds grub.. as oz food is no match. and if your son keeps his mobile on silent.. he can still text people, this helped me feel a little less isolated

Captain_dan

Posts: 234
From: somewhere cold but its not snowing yet
Registered: 16-Mar-2004

Re: Hospital Admission
Posted: 21-Nov-2006 17:18

Reply

Im sorry to hear you and your family are having a rough time lately. Perhaps if you felt your son's stay in hospital was going to very worthwhile and mostly pleasant for him then perhaps this will make you feel a whole lot better about things?

Im sure the docs probably have a good idea and that your sons health will pick up from the IVs so find some comfort in that.

If possible make sure your son takes all the things he likes to do etc into hospital with him.... books and mags to read, CDs etc to listen too, computer console and favourite games perhaps, mobile phone to keep in touch with friends/family..... etc. etc.

If you have an understanding boss that lets your ecude your hrs for when these kind of family complications come up then i would suggest you try and do that, even just a little as it wont help you in long run to be tired out from work and trying to visit 2 people in hospital, even if its just an hour or 2 off a day it might help get through this period.

Best of luck for you and hope your son and daughter get in and out of hospital quickly.

Dan

kc

Posts: 17
From: Huddersfield
Registered: 09-Feb-2004

Re: Hospital Admission
Posted: 22-Nov-2006 20:49

Reply

Thank's for the replies. Seem to be feeling a bit more positive..till next week. Karen

Darling

Posts: 731
From: Here
Registered: 06-Feb-2004

Re: Hospital Admission
Posted: 22-Nov-2006 21:51

Reply

Can I ask what treatment your son is having for the mycobacterium?

It's a complication I've been dealing with for some time and am always keen to learn more.

kc

Posts: 17
From: Huddersfield
Registered: 09-Feb-2004

Re: Hospital Admission
Posted: 25-Nov-2006 13:19

Reply

My son is on Amicacyn nebulised twice a day for the Mycrobactirium. When he was first admitted in August to treat it he was also on tablets for about a month. The Doctors say they don't know much about this bug and so not sure on how to treat it. His lung functions are not improving and he has lost weight since last month and had previous to that.They showed us his cat scan and things not looking great. We have been told now that he is to go in on Monday but he hasnt spoken to me properly since he was told he had to be admitted! Not sure what treatment he is to receive other than 2 weeks of IV's. Dreading Monday...Please keep in touch. What are they treating you with? Does it affect you? Take care and thank's for replying, Karen.

Darling

Posts: 731
From: Here
Registered: 06-Feb-2004

Re: Hospital Admission
Posted: 26-Nov-2006 16:53

Reply

The orals did nothing for me and so I'm on long term IVs which appears to be common in the USA and Canada. The symptoms appear to be alleviated but it's tiring having the IVs. My port is a blessing though and makes life massively easier.

I suspect I've had it for a long old time (am 36 in a few weeks) but was only diagnosed a couple of years ago. We've only gone to town on treatment as I became symptomatic.

The two drugs are Amikacin (IV) and Cefoxitine (IV).

My team spent a lot of time researching this and gaining funding for the drugs.

If his team are interested they could contact Dr Jarad at the Bristol Royal Infirmary. Actually, I'd recommend it. Always worth sharing info on these things

kc

Posts: 17
From: Huddersfield
Registered: 09-Feb-2004

Re: Hospital Admission
Posted: 27-Nov-2006 13:08

Reply

Thanks for replying again. My Son has just been admitted to hospital today and we are waiting to see the Doc's. He is really down and upset at the moment. Not sure what IV treatment will be started yet. When you say you are on long term IV's does that mean constantly? Sorry to be so ignorant! How are you doing being on them? Has it helped? Hope so,I think I will mention Bristol to the Doc's but not sure how they will react. Thank you again for getting back to me I really do appreciate it as not heard of this bug before and have no info or don't know of anyone I can "talk" to. Keep well.
Karen.

Darling

Posts: 731
From: Here
Registered: 06-Feb-2004

Re: Hospital Admission
Posted: 27-Nov-2006 13:18

Reply

My IV course is 6 months and 4 times a day (although I did change drugs after 2 months so it will be 8 in total). It is an aggressive treatment but proven abroad to reign in the bug. I spend 3 weeks at home then 1 week on the unit being waited on hand and foot by some fabulous nurses and domestic staff

That gives me a rest and a recharge plus also allows the physios and docs to check me over thoroughly to see my progress.

The symptoms went very quickly which was such a relief. The side effects aren't too bad, just fatigue and some stomach upset, but I take Yakult and codeine for that.

It is a big one to deal with but to put a brighter note and some hope on it...I'm still working (from home for the family business) and am moving to a new flat in January. Life does go on but needs some modification!

Some teams may be reluctant to speak to other centres but if they are clutching at straws then shared info has to be the way to go.

Best of luck

kc

Posts: 17
From: Huddersfield
Registered: 09-Feb-2004

Re: Hospital Admission
Posted: 27-Nov-2006 13:23

Reply

Thank's for quick reply. Will let you know how it goes today. I will mention the treatment you received although I don't know how my son would take 6 months of Iv's, but if it does the work then it will have to be done. Good luck with your move in January, hope you'll be really happy in your new home. Take care
Karen

Darling

Posts: 731
From: Here
Registered: 06-Feb-2004

Re: Hospital Admission
Posted: 27-Nov-2006 13:28

Reply

I hope things work out for him too. 6 months is a last resort and for me was the only option. I hope he can get away with something lesser

Keep us posted as to how you get one. Meanwhile I have lots of furniture to select

kc

Posts: 17
From: Huddersfield
Registered: 09-Feb-2004

Re: Hospital Admission
Posted: 27-Nov-2006 16:28

Reply

He is to be started on Amicaycin for 2 weeks via IV not had chance to discuss anything with nurses or doc;s yet as he is very needle phobic and had to be sedated to have long line put in. He;s worn himself out and is asleep now. Just worried as they mentioned that ct scan showed both lungs have partial collapse and said not able to do anything about it.
Karen