My lovely husband had a catheter fitted in December , I was slightly worried about it but it was a great success . He had his first change last Friday . Everything seemed different this time . It caused him more pain and discomfort and on Saturday morning he had some discharge and a small amount of watery blood . I didn’t suspect an infection and thought it was due to the trauma caused . I rang the DN just incase , she told me to ring back if the bleeding increased I regularly checked it and it was fine . In the early evening I became concerned about Richards breathing so took his temperature and used my pulse ox . I wasn’t happy so rang 111. He ended up going to Hospital , I was careful to give them all the information I thought they would need , including explaining what MSA is . When I spoke to the Hospital I was told they had done a chest X-ray but a UTI was suspected . I eventually got him home at 1.30 am on Sunday morning and having got him settled I unpacked his bag . The antibiotics he had been prescribed were 1 of 3 that he had been resistant to before ! I rang the Hospital to query it with the Dr who assured me it should be ok and it was a broad spectrum antibiotic so should fight any infection . I also learnt his pee had been dipped !! I wasn’t happy with that either as I know it should have been sent of . It then pinpoints the bug and the specific antibiotics needed can be given . I thought I have to respect and trust in the Dr but I felt concerned . On Sunday Richard seemed ok and I kept a close eye on him . We discussed what was the best thing to do and agreed he had had tests less than 24 before and didn’t think we would achieve much . I said I will ring the GP first thing and suggest a pee sample go off to see if there were signs of an infection which would prove the antibiotics weren’t working . When I woke and checked on him I was alarmed he was very hot and flushed and his speech had deteriorated . I flung the window open , pulled back the covers and gave him paracetamol , I got everything ready and re did his observations . I spoke to the Dr and he sent someone out . Off to hospital again !! They repeated the chest X-ray and assured me his pee had gone of to the lab . I hoped that he might be turned around again quickly and come home . I kept in touch and they seemed fairly happy with him . I tried to unwind a little and keep calm so put the telly on . Just after 9pm I received a call from the Dr asking if Richard had a DNR ? she said he is really quite poorly . He had a fever and wasn’t responding to the antibiotics . She said they wouldn’t put him into Intensive care as he probably wouldn’t come out . She also explained they would do all they could but wouldn’t do chest compressions as they would probably break his ribs which wouldn’t be fair on him and she didn’t foresee a good outcome from doing it anyway . She mentioned sepsis to which I replied , how had it got to that ? He had been with them on Saturday ? She was very nice and compassionate but I was shaking from head to toe at this point . I came off the phone reeling , I had so many emotions of course including anger and frustration . I felt my gut feeling was right the pee should have been sent off before and the antibiotics hadn’t done a thing !! I stayed dressed so I could run out if needed as she explained if he became an end of life patient I would be allowed in . I eventually managed to get a little sleep and just prayed he wouldn’t be taken from me . It was to heart breaking to think off . Having got through the very long night and having no phone call I rang for an update . He was no worse but I was told to ring in a couple of hours . Thank goodness he had startedto respond to treatment and they were fairly happy with his progress . I spoke to him later and his speech was very bad so I knew he was still very poorly but I did understand an I love you . He has continued to improve and I can now understand him when I phone . The pee came back and a UTI was confirmed . I am hoping he will come home today , as his IV antibiotics stopped in the early hours , so he can continue on oral antibiotics at home . I have got the hospital bed brought downstairs because I am expecting his mobility to be reduced at least for a while . I wanted everything in place because I thought they would say he couldn’t come home if I couldn’t manage . I’m not risking being without him for one minute more than necessary . It has taught that if this happens again whilst I will always be respectful and polite I am going to insist that a pee sample go off and he is kept in until they have the result . If I need to I will refuse to except his discharge . I don’t always think they understand how MSA affects the patient and how quickly they can become so dangerously unwell . I just hope I will be lucky and get him home today so I can look after him again and just look at him and hold his hand and just think how lucky I am to have him . I love him so much and I think his MSA makes me love him even more if that’s possible 🥰
More Heartache caused by MSA - Multiple System A...
More Heartache caused by MSA
THANK YOU for sharing this. MSA is such a contrary disease and many of the basic good practices that apply to normal diseases just don't apply. And staff all cling so tightly to their good practices that you need to be well informed, polite and determined to get over it. Temperature is NOT a reliable indicator of infection either. The next person to die after being sent home as OK because of a temperature returned to normal will not be the first. You will never forget this and it is important that everyone takes it on board as well. resuscitaion is a brutal business and everything needs to be done to avoid things getting to that state in the first place. I do hope he recovers from this awful experience
there are two great rules for surviving with MSA. One is Do it now - don't wait until later and the other is Don't take no for an answer.
Hello My husband has also had many infections probably due to catheterisation
He is now on Nitrofuratoin one a day
A low dose antibiotic to keep urine infection away
Hello Nicky, what a terrible time you and Richard have been through, my heart goes out to you.
Your comments about insisting on proper tests are so right. Jackie has had frequent UTI’s however we are lucky enough to to have a doctor who gives us a reserve supply of antibiotics to take straight away and who will immediately send off a sample for testing/confirmation.
The doctor also insists on retesting after the course of antibiotics to ensure all us clear.
I hope Richard is soon home and you will soon be holding his hand again.
Take care, Ian
Hello, it was heartbreaking to read your post, and brought back so many unhappy memories of my experiences with my husband.
The first time he was fitted with a catheter (in A&E), it took one Sister and two Doctors to get it properly in place. Consequently, DN’s said they would not attempt it in future so it was either the Urology Clinic or A&E (in between regular changes)
One Sunday (it always seemed to be week ends with him) I noticed he wasn’t passing urine ( he was very weak by then, and mostly in a wheelchair ). In this area we have a CIT Unit (Community Intervention Team) which ‘picks up the reins’ out of normal hours. I rang them for advice, and when I told them the problem the nurse asked how long I thought it was since he had last passed urine. I said at least 5 hours. Her reply was that SHE hadn’t passed urine for 5 hours!! I asked how she could compare her ‘normal’ bladder with someone with his medical conditions who has a catheter?
I explained the problem getting it changed etc, and when she found out it had initially been fitted by A& E, she said I must take him there. I said how when I didn’t drive, and she said I should phone a taxi! (the hospital is approx 12 miles away). I slammed the phone down, but then as I was about to dial 999 it rang and this person told me I should ring 999 immediately. I later found out it was another member of CIT who had witnessed the call, and was so concerned they had made this ‘secret’ call.
It was the talk of the local DN’s network, the one who told me said they were absolutely disgusted, and although I know I could identify her (she had come out to him once before), I obviously couldn’t prove it, and their calls are not recorded.
On another occasion I rang 999 straight away, and he was rushed into Resuss where we spent a few very scary hours (sepsis).
If I could offer a single piece of advice to people it is this- NEVER take the word of an individual health professional if you have the slightest doubt yourself. Trust your ‘gut’ feelings, you know yourself (or the person you care for) better than anybody, and don’t be fobbed off or imagine that they ‘must’ know better- it could be fatal.
I wish you the very best of luck
Hi hope all gets better.
One thing I've learn 't about being on this Forum is 'There's always someone else worse off'
I'm not sure if it helping me or not!
Don’t forget everyone’s experience and story will be different . All I would say is stay strong and take one day at a time . And keep communicating on here as it’s so good for all of us . Sending my best wishes Nicky .
I know what you mean Bruce, but the great benefit of this forum I think is gaining more of an understanding based on real experiences, rather than sanitised articles deemed safe to post by the healthcare professionals. The realities of extremely sick people seem to be kept out of sight, but I think it's more helpful to know.
Hi Bruce, I think sharing experiences, good or bad, is very important especially when MSA appears to fly under the radar of so many medical professionals. There appears to be no support whatsoever in this area, so even though we only found out about this condition at the very end of my husband’s life ( following a fall ), this forum answered so many questions for us.
I only wish someone with a high profile would take up the banner to shine a spotlight on this condition. It will probably take an MP or famous film star who has a relative suffering from it, as is often the case!
Best wishes.
I'm a broken record with the GP and mum's nursing home on infections and how they present in MSA ..... luckily one of the nurses is now on board and we always notice changes in behaviour that indicate something isn't quite right. Time and time again I hear from the GP - 'her temp is normal'!
It made me very sad to read your awful experience, I can only repeat what others have said. Go armed when he goes into hospital. We had a MSA folder for Al that I presented to paramedics when they arrived and nurses/doctors at the hospital. It contained information for professionals from the MSA Trust, a chronology of appointments and their outcomes, hospital visits, absolutely everything. I think because it's something that I do in my job it was just second nature to log everything for Al, catheter changes and blockages included.
I hope he continues to improve best wishes to you both.
Thank you for your reply . I had thought of a piece of paper , to write things down so Richard had something for any Hospital admissions . Even including his name and mine incase his speech was very bad . Your idea however is so much better . I will do it today as it will give me something to focus on whilst I hopefully get a call to say he can come home .
The MSA Trust have a pack you can get that does this job. I think its called a hospital admissions folder,you can request one from them x
what a horrible time for you , I hope you get him home today , sending love and hugs
elaine xx
Hi, how traumatic for you both, but not uncommon unfortunately. I feel two things came into play here MSA and it's complexity and Covid...which stopped the usual face to face consultant conversation.
You have done all you can and more, Richard will be thankful and proud you are in his corner.
One thing I and you have learned is question, question, question, doctors have only got a broad knowledge based on what they can read, but within us is a massive history of medical actions and reactions. I have before said " are you sure about that because of xxxxx"
During this Covid time I have done a long summery sheet of my Sue's symptoms, history and medication including the basic what MSA is.
I do hope everything settles for you both now.
Take care and be strong.
Paul
I can't add much apart from I'm so sorry you've had to go through this. 🧡🧡🧡
Wow my heart goes out to you! I can’t add much yet as I new to this but I totally understand how hard it is when you’re stuck on the outside of the hospital. My husband was in for 3 weeks recently and it was a very difficult time with little to no feedback from the doctors and nurses. I do hope you get Richard home very soon and he’s recovering from this ordeal. Big hugs x Sue
So sorry and hope Richard is doing much better now.
I'm also so sorry to read this but the thing that stands out, is gut reaction and I so completely think this shouldn't be ignored. And so what if your gut reaction is wrong? The very worst that can have happened is that our loved ones will have got extra medical attention as we follow our instincts. Well done Nicky.
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