Water infections, again

[Courgettegrower]

Ian is back in hospital with a UTI. He had catheter replacement 10 days ago following a 2 month run with the previous one. 2 days later the DN had to deflate and reflate it and from then it was only intermittently working but the DN said that was ok. By Sunday it had given up and Ian’s breathing was laboured and noisy resulting in a call to 111 and ambulance to Stoke Mandeville. As always I feel I let him down not noticing unusual reactions sooner. When does the guilt go away for us amateur carers without medical knowledge doing the best we can? Also I would appreciate hospital staff communicating with me, nearly 24 hours before anyone communicated with me, never rang me back! I hate MSA.

[FredaE]

the truth is that the guilt should not be there in the first place. You are doing everything possible in the face of a cunning and unpredictable disease which fools experienced and competent medical people. Sometimes it is going to fool you. nothiing can take away the love and care you are giving to Ian. Sometimes you have no choice but to take their advice even if you have doubts and sometimes it is only with hindsight that you realise something is not going well.

A & E at Stoke Mandeville is not the most empowering place in the world at the best of times is it? Overloaded staff hurtling around appearing and re-appearing and probably the most uncomfortable beds in the universe. You are amazing so please don't beat yourself up.

[Paul_and_Sue_Wood]

Hi, please don't beat yourself up as this condition does not play to any rules and even after 12 years if experience it sends a curve ball out to catch Sue and I out. All you can do is limit the risk as much as you can based on your own experience.We all wish this condition would stabilise so we can get as normal as possible, but that's not to be and each change is a threat, all we can do is try to prepare and have s plan A,B,C,D,E, & F..

Be as strong as you can be.

Paul

[Courgettegrower]

Thanks Freda and Paul I just feel so unprepared and useless and I guess very scared

[Yanno]

Hello Jenny. I can’t add much to what Freda and Paul have said. Stay strong as you can, you will need all your energy when Ian returns home. Take care, Ian

[Courgettegrower in reply to Yanno]

Thanks. He is on the mend I gather from the ward and he has had some physio

[Hidden]

You're not alone. You can do this. Kx

[Diane831]

I am so sorry to hear this. It is really difficult when you know something isn’t right but you have to get others to make it right. A conversation with whoever is your most understanding health contact in which you express your feelings and don’t be afraid to cry at how it feels knowing that Ian is unwell but you aren’t being listened to until it is too late and the infection is raging again. Obviously all the regular - make sure he drinks enough, advice is there. Would he, you, and his professionals consider a supra pubic catheter? Would the GP consider prophylactic antibiotics when it is catheter change time? Does the time between changes need to be even shorter?

I feel for you. Hold your head up, you are doing a great job in very tough circumstances, and keep on asking for the help that you and Ian need to keep him at home not in the hospital.

Diane

[Keycode]

Try not to be so hard on yourself, you are not to blame and can only do so much. Maybe the DN wasn't concerned at the time but then things changed. Sometimes no matter how on the ball you are and how experienced and trained you are there's just no way of knowing what's truly going on and things catch us out. I think that's especially true of MSA its unpredictable. Be kind to yourself.

[Derkie54]

Hello,

Do not feel gulity at all, you have no reason to, I'm sure you're doing a great job.

I tell myself sometimes " I'm doing the best I can, can't do any more than that" and you are doing the best you can for Ian,

We have not been trained for any off this, so just do your best and what you think is right.

Our thoughts are with you both.

Derek

[Courgettegrower]

Thanks for all the support in these messages.We are going to Think about a supra pubic catheter and prophylactic antibiotics now he’s had quite a few of these infections

[Courgettegrower]

Following assessment by physios The hospital occupational therapist has told me that they’re going to give us six weeks care funded by social services two people four times a day as they don’t think he is strong enough for me to manage his transfer device on my own. I was actually allowed in to see him trying to use the Sara Stedy and I have two agree that he is unable to pull himself up on it unaided

I do have a private carer who helps me get him up in the mornings already but this is considered insufficient and I have to admit they are right. I’m sure I’m not the only wife who is appalled at the idea of people in and out of our home whilst realising I have no option. Has anybody got any advice for me

[Nichod100]

Sorry to hear your news , please don’t feel guilty we can only do our best . I do understand though as I do the same . All I can suggest is what I am doing , I take Richards temp , oxygen level and Bpm 3 times a day . And I fight , fight and fight to get information . I think people realise I won’t go away if I don’t get information and am satisfied . I am always polite and respectful but I’m like a dog with a bone . Our Dr recently suggested Antibiotics 2 days before the next catheter change until 2 days after next time it’s due to be done . I hope Ian is better soon and back home . Please take care of yourself . X

[Courgettegrower in reply to Nichod100]

Thanks, interested in antibiotics before infection sets in. Trouble is catheter changes can suddenly be needed so it’s difficult to plan antibiotics isn’t it?

[Nichod100 in reply to Courgettegrower]

Yes of course , I haven’t come up against this problem .