My husband was diagnosed with GCA August 2020. He had a successful taper from 70mg to currently 5. Last Saturday he suffered stroke no.3, no 2 was a result of GCA, no 1 was a heart problem now resolved.
So in the stroke unit since Saturday and 2 days of monitoring in ICU, they have ruled out arrythmia and are saying it is likely GCA BUT his CRP reading was 6. (5 is the norm - in France.) So can GCA rear it's head without showing a high CRP reading? He has today been transferred to the hospital where he was last time and where his Rheumy works. He had no warning and only fatigue which he has suffered with since stroke no2. I don't know what to think, and as his blood is monitored monthly how on earth could this have been prevented if the CRP reading appeared to be OK? Puzzled.... and upset as this time he has lost his speech and is not walking at the moment. Last time it was his eyes and left side weakness, now it is his right side.. I feel for him, on top of that St Malo stroke unit have mislaid his glasses, specially made to address double vision on one side and varifocal on the other post cataract op. - Caused by Pred. Such an unlucky man and all hospital visits are forbidden so I can't even get to see him. A bag of personal stuff had to be left at reception for him. So he can't read now or watch TV or even see what he is eating. Sorry a bit of a rant but any thoughts welcome. Thank you!!
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Bella1310
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So sorry to hear this…..very possible to have GCA without raised inflammation markers - up to 20% of patients in that category. Even if he had raised markers pre diagnosis, very often in a flare they lag well behind symptoms.
The fact that his spectacles have been mislaid must be very distressing for him……don’t supposed he’s got a spare pair at home you can take in to reception?
My thought are with you both, and don’t ever apologise for a rant….justified in this scenerio.
Thank you, that makes things a bit clearer. But if the blood markers don't show GCA how do you ever know? Regarding specs, they were new in November and cost 550 euros, post cataract operations. His old prescription ones are useless, but I did take them to him and he can see the numbers on his phone, but that's about all. Our insurance agent is also on the case. I have an army of helpers and support including yourselves, for which I am eternally gratefull!
Know where you are coming from re specs, I have similar issues, one eye no sight, one varifocal (post cataract) so can’t just buy off the shelf, but as they been like that for 7 years always make sure I’ve got spare pair!
Hopefully you can get replacement as SheffieldJane suggests asap and reclaim via insurance.🌸
I am so sorry Bella what an awful time you are both going through. Is it practical for the optician to order replacement glasses? It might feel better to address the issues you have some control over right now. It just sounds like there was nothing further you could have done to prevent or anticipate this. I sincerely hope that you have the support of friends and family. Be strong! Kindest wishes Jane. X
Thank you Jane. The specs cost 550 euros just 3 months go. So yes I can get replacement made, but that will be a gold plated cost of specs at ovr a thousand euros. My insurance agent is on the case too, but I can't claim on our insurance as they are "mislaid" in a particular place not lost. After a period of time if they haven't turned up we can use negligence against the hospital, but we have to wait, which doesn't help my husband at the moment when he can only sit and read or watch TV NOT. So frustrating for both of us. Thanks for your kind reply.
Wearying as this is, I would be making a big fuss. It simply isn’t good enough. If he doesn’t have his glasses then surely they are lost! Time must hang heavy. I expect that you have thought of audio books and apps like BBC Sounds. I will be thinking of you both.
Thank you Sheffied Jane. Yes he has audio books, radio and loves music etc so he has plenty to listen to on his iPad, and at the moment watching TV won't happen as it is all in French in the hospital. Yes I did have a rant this morning to the Patient Assistance and my insurance agent will do the same tomorrow. I know, I am angry about it, at least I have something to channel my anger into instead of having to keep my patience always. The nurse that told me they were missing, said he was embarrassed, my reply to him was that I will be financially embarrassed by 550 euros!! They are busy people in ICU and I don't expect them to run all around the hospital searching for a pair of specs, but I agree it simply isn't good enough to be careless with a patient suffering a stroke!! I will update with any outcome, everyone is so helpful on this site, I am so grateful to have found it!!
If he is likely to be in hospital for long - are you aware of a website called Film-On? It costs 20 euros a month (cheaper for a year) for an account with unlimited access to all UK terrestrial channels online . My husband got it after someone we met on a campsite at Venice told us about it. Once you have the accout you can have several devices using it at the same time - I often have something running on a computer plugged into the big TV in the living room and something else on my laptop - i.e. a rugby match and another programme and while he was alive OH would have his computer on watching old films! The better the wifi the better it is obviously but it kept OH happy for hours in hospital. there is a whole range of other stuff on it but I just have it for UK TV and mainly documentaries. I watch all my sport on German and Austrian TV!
Since you can subscribe for just a month it is handy on holiday too
THANK-YOU PMRpro, having discovered that the hospital doesn't provide patient internet, I signed my husband up with Film-on this afternoon and he is really happy and grateful to you now he can watch TV and films on is iPad. The phone was just too small for him to see. Superb help, many thanks .
Glad to have helped cheer him up! It certainly kept my husband entertained for many hours.
How backward though - bless them, our hospital has patient internet access. It can be a bit slow during the day but once all the office staff have gone home it is excellent. We do have a very high standard of fibre optic broadband here though!
Thank you PMR Pro really helpful, no I didn't know about Film-on, I'm certain that will be very useful,even at home. I intend to go to the hospital tomorrow and get internet set up for him, so he has Youtube, but this sounds ideal, he loves old films too. Just need the specs to see it with, I think they will turn up soon now I have Patient Assistance actually searching for them!!
Really feel for you Bella. We bought a house in France many years ago and when OH retired, we moved there. Like yours my husband didn't speak or understand French either. This lack of language brought us back to the UK because when he had a knee replaced he couldn't ask for anything...or tell them anything. The thought of him having his second knee job done there was more than I was prepared to risk. You will have to kick up a real fuss about his glasses. Make a real nuisance of yourself. I learnt it was the only way to get things moving, very slowly in most cases. I hope his spectacles didn't go out in the laundry! And all my problems there were pre Covid!!!! Bonne chance!
Sorry, I have no experience of GCA, but just wanted to share that when my Mum had a stroke her loss of speech was immediate. However, on day 6 she regained it & was talking quite well, & next day her speech was normal. Don’t give up hope, but dreadfully sad that you can’t visit & I’M dreadfully short sighted & quite understand how isolated & frustrated he must feel…I always take spare specs on holidays etc. Hope everything improves soon for you, S x
What an awful time you are going through and have been for a while Bella. I am so sorry. Just a thought, would a cheap pair of reading glasses help from the chemist or “pound” store. Or even a magnifying glass. I do hope he recovers soon. Take care of yourself.
A cheap pair of off the shelf glasses may work for some people in an emergency, but they aren’t any good for someone who has different lenses in each eye. As a few of us on here - and Bella’s husband can testify.
So sorry to hear about your poor hubby. I know exactly how you feel as I am not able to visit my hubby when he's in hospital which is very difficult as he has terminal cancer I have him home with me but sometimes he's admitted for blood transfusions .
My hubby has complex lenses and at the opticians they charged him £450! I sourced a spare pair through the Internet with a company I've used for ages They were less than half the price Might be worth you checking but it's not an immediate fix so I hope they find his glasses I couldn't see a thing without mine so I can only imagine what he is going through. Hope it's resolved soon and you get him home xxx
Thank you all so much for your kind thoughts and positivity. I have better news. My husband was moved yesterday to our usual hospital just 20 minutes away, so he is out of ICU. He is under the care of the same doctor for the last stroke and his rheumy is in the same hospital. I spoke to the ward secretary this morning and visiting is at the Doc's discretion to stop too many people milling around the corridors. I was granted permission for this afternoon as we hadn't seen each other for almost 4 days and I had clean clothes and his walking stick to take. The Doc recognised me - even within a mask, she is a lovely doctor, and was last time. He is in good spirits, physio and speech therapy started today, and he is actually speaking better today anyway. Out of bed and walking a few steps too. If he continues to do well, he can come home for Sunday afternoon as there are no treatments going on at the weekend. His son is visiting from UK on Saturday for a week, so he will also be able to visit now. Altogether a nice afternoon for us both. The specs are still missing, but I mentioned it to his Doc and added the fact that Physio will be compromised without his specs because he still has double vision in one eye. His other eye has a very special lens as varifocal, so they are not ordinary glasses. His eyesight was quite compromised after his last stroke and he is unstable without eyesight correction. He already has reading glasses and magnifiers but they aren't enough. She was quite horrified and immediately got her secretary on the case, making enquiries at St Malo Hospital. I think she was already miffed with St Malo as she received little in paperwork from them and had to ask me what the doctor in ICU had told me, which wasn't much. I could at least tell her the story. Thank you all, in just a couple of days things have changed around, I just hope it continues. I love the support around me from the many replies from you all, words not enough really. THANKYOU!!
So pleased to hear that your husband is in a more positive and sympathetic environment, and that he is beginning to improve 😊 I hope the secretary can locate the specs!
I'm no expert on heart issues, just a fellow GCA traveler. But I've been reading a lot on GCA, and I read in multiple places that Sedimentation Rate needs to be watched just as carefully as CRP. Sometimes either one of these markers, individually, can identify the return of inflammation, even if the other still looks pretty normal. Are you tracking Sed Rate in your bloodwork as well?
Yes his Rheumy watches that, it appears on the blood results we get. I have to trust they know what they are doing, I think he will get a Rheumy app'ment soon, she is on holiday this week. Thank you!!
Thanks to everyone for helpful comments and support. The specs are still missing and I suspect forever now. Our optician is beavering away making him a new pair. There is a garantee on the lenses for a one time replacement. I have to provide a report from the Gendarmes to confirm that I have reported them missing. Guess what - the Police Station has an exceptional closure today!!! Blocked at every corner, I will sort it out tomorrow. Hubbie is receiving Physio twice a day, and therapy because he has a small breathing problem and a swallowing problem. After that she will move on to speech therapy, but he is sounding clearer every day. Hopefully he can come home for the afternoon on Sunday if his walking is OK. Feeling happier!!
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