Post by auntiepeas on Oct 28, 2024 7:33:37 GMT
Update (Saturday)
Firstly, thank you all again for your kind reassurances, encouragement and well wishes, they've meant a lot to us.
At the GP appointment (Thursday am) they weren't convinced it was heart failure.
The initial thinking was it could be dh's liver due to the extremely low albumin levels showing up, so more blood tests were ordered to look at liver function, but while we were waiting for the results from the blood tests the GP consulted with a specialist and the thinking became that it was likely dh's kidneys. So he was called back to give a urine sample.
We were told the next morning the results from this confirmed it was likely his kidneys and we were to come into the practice immediately for another examination and urine sample (the protein level on this one showed as the darkest colour on the test card and there was blood present, although not visible to us), and the leg swelling fitted too. So, the official diagnosis now is acute nephrotic syndrome.
Dh was immediately started on Candesartan cilexetil to protect his kidney function (and he's to continue on the Furosemide but without fluid restriction), and then sent down to ED for a long list of blood tests plus monitoring - the plan then was to admit him here, then transfer him to the major base hospital in our region for an urgent kidney biopsy but his initial monitoring results in ED were better than anticipated (particularly the level of blood in his urine, which was tested again there) so we were sent home for the weekend instead.
We're to go straight back to ED if dh deteriorates in any way, but so long as he doesn't then we're to go back for more blood tests on Monday and hopefully an outpatient appointment with the specialist - they'll reassess then about the kidney biopsy but at least we have some more answers.
wellway we've been taking your advice and writing everything down (in notes + photos on my phone) - that's been hugely helpful because it was getting pretty swimmy there for a bit, and has made it so much easier to give a concise history each time we've been asked!
mich5481 we're still bearing in mind your advice about baseline potassium levels - that seems like really good advice and we plan to ask about this next week (if it hasn't been done by the specialist already).
peasapie thank you so much for sharing your experience! It was encouraging when we first saw it but is even more so now, given the new diagnosis.
lucyg we're so glad to hear your heart failure is more or less under control with Lasix, thank you so much for sharing, and we wish you very well for a long, happy future too!
littlemama your "don't freak out" advice about ejection fraction and what's normal was really helpful and much appreciated!
Zee thank you so much for your kind, practical and thorough advice! We acted on the daily weigh-in suggestion straight away and have been relieved to see he hasn't been gaining weight (and has actually lost a little as the swelling has gone down).
It was also really great to get that timely warning about fluid restriction - it was exactly right at the time but they've told us now we don't have to keep restricting him, even though he's still on the Furosemide, because they're not thinking it's heart failure anymore.
You're so right too about how it can be a bit overwhelming navigating health care when you don't have a medical background, but it's definitely been easier than I'm sure it would've been thanks to the helpful advice we've received from you and the other peas here!
***********
Sorry, this is going to be long but DH and I are a bit shockes and trying to process the diagnosis of heart failure he received out of the blue at the ED today.
Until now, he's been considered to be in good health.
About a fortnight ago he'd started having a tickle of a cough late at night (just before bedtime) and first thing in the morning that seemed to be triggered by changes in air temperature. I was experiencing a bit of the same (it's Spring here and we both have allergies).
Then nine days ago, later in the evening, he started to cough when he went to the toilet but this time it started a nosebleed. That's a rare occurrence for him but there was nothing concerning about it and it stopped quickly enough.
However, last Monday morning as he was about to get out of bed his nose started bleeding but heavily this time, and it was coming out of his mouth too.
I ended up having to call an ambulance for him due to volume, duration and inability to stop the bleeding. He was treated at home and then seen by his GP (as required by the paramedics) 3 hours later. Nothing else was considered to be out of the ordinary but his GP ordered some blood tests which were carried out the next morning.
Since then we've had to make 4 nosebleed related trips to the ED, each resulting in more than a cup of loss. After the second ED visit we were able to bring his GP appointment forward to 9am, 31 October. The last ED visit before today was on Saturday morning.
Throughout that time they've been reassuring us that his blood tests were showing his body was coping with the blood loss, and everything else looked fine, but at the first ED visit they were able to see (on the health system) the results from the blood tests the GP ordered and said they were all good except his kidney function had deteriorated some since it was last checked (just to give us a baseline) 2 years ago. The protocol is for the doctor (ie the GP) who ordered the tests to give the results, and we already had a follow up appointment booked with the GP for November 4th, so the ED doctor did say anything more except that the GP was likely to start dh on medication to protect his kidneys.
This morning when dh woke his legs were swollen from his knees to his toes.
We elevated them for an hour which seemed to bring them down a little bit we weren't sure how to proceed so we rang Healthline (a free 10 minute telehealth assessment service).
They did a video assessment of the swelling, which they were concerned about, and given dh had also experienced some tightness across the chest + a little shortness of breath when we had tried to take a short gentle walk about 4pm yesterday (the first since last Monday) they sent us back to ED.
There they performed a chest x-ray, ECG, and checked his blood pressure.
The chest x-ray showed Pleural effusion, then they told us all his results were showing heart failure.
They sent us home with a script for Furosemide to start immediately, and said his GP would need to start him on several other medications but apparently they need to be staggered when starting.
So, now we're trying to process where we're at and figure out what we need to be asking his GP.
I'm posting this with dh's permission and we'd both be grateful for any advice or helpful experience you can share.
Firstly, thank you all again for your kind reassurances, encouragement and well wishes, they've meant a lot to us.
At the GP appointment (Thursday am) they weren't convinced it was heart failure.
The initial thinking was it could be dh's liver due to the extremely low albumin levels showing up, so more blood tests were ordered to look at liver function, but while we were waiting for the results from the blood tests the GP consulted with a specialist and the thinking became that it was likely dh's kidneys. So he was called back to give a urine sample.
We were told the next morning the results from this confirmed it was likely his kidneys and we were to come into the practice immediately for another examination and urine sample (the protein level on this one showed as the darkest colour on the test card and there was blood present, although not visible to us), and the leg swelling fitted too. So, the official diagnosis now is acute nephrotic syndrome.
Dh was immediately started on Candesartan cilexetil to protect his kidney function (and he's to continue on the Furosemide but without fluid restriction), and then sent down to ED for a long list of blood tests plus monitoring - the plan then was to admit him here, then transfer him to the major base hospital in our region for an urgent kidney biopsy but his initial monitoring results in ED were better than anticipated (particularly the level of blood in his urine, which was tested again there) so we were sent home for the weekend instead.
We're to go straight back to ED if dh deteriorates in any way, but so long as he doesn't then we're to go back for more blood tests on Monday and hopefully an outpatient appointment with the specialist - they'll reassess then about the kidney biopsy but at least we have some more answers.
wellway we've been taking your advice and writing everything down (in notes + photos on my phone) - that's been hugely helpful because it was getting pretty swimmy there for a bit, and has made it so much easier to give a concise history each time we've been asked!
mich5481 we're still bearing in mind your advice about baseline potassium levels - that seems like really good advice and we plan to ask about this next week (if it hasn't been done by the specialist already).
peasapie thank you so much for sharing your experience! It was encouraging when we first saw it but is even more so now, given the new diagnosis.
lucyg we're so glad to hear your heart failure is more or less under control with Lasix, thank you so much for sharing, and we wish you very well for a long, happy future too!
littlemama your "don't freak out" advice about ejection fraction and what's normal was really helpful and much appreciated!
Zee thank you so much for your kind, practical and thorough advice! We acted on the daily weigh-in suggestion straight away and have been relieved to see he hasn't been gaining weight (and has actually lost a little as the swelling has gone down).
It was also really great to get that timely warning about fluid restriction - it was exactly right at the time but they've told us now we don't have to keep restricting him, even though he's still on the Furosemide, because they're not thinking it's heart failure anymore.
You're so right too about how it can be a bit overwhelming navigating health care when you don't have a medical background, but it's definitely been easier than I'm sure it would've been thanks to the helpful advice we've received from you and the other peas here!
***********
Sorry, this is going to be long but DH and I are a bit shockes and trying to process the diagnosis of heart failure he received out of the blue at the ED today.
Until now, he's been considered to be in good health.
About a fortnight ago he'd started having a tickle of a cough late at night (just before bedtime) and first thing in the morning that seemed to be triggered by changes in air temperature. I was experiencing a bit of the same (it's Spring here and we both have allergies).
Then nine days ago, later in the evening, he started to cough when he went to the toilet but this time it started a nosebleed. That's a rare occurrence for him but there was nothing concerning about it and it stopped quickly enough.
However, last Monday morning as he was about to get out of bed his nose started bleeding but heavily this time, and it was coming out of his mouth too.
I ended up having to call an ambulance for him due to volume, duration and inability to stop the bleeding. He was treated at home and then seen by his GP (as required by the paramedics) 3 hours later. Nothing else was considered to be out of the ordinary but his GP ordered some blood tests which were carried out the next morning.
Since then we've had to make 4 nosebleed related trips to the ED, each resulting in more than a cup of loss. After the second ED visit we were able to bring his GP appointment forward to 9am, 31 October. The last ED visit before today was on Saturday morning.
Throughout that time they've been reassuring us that his blood tests were showing his body was coping with the blood loss, and everything else looked fine, but at the first ED visit they were able to see (on the health system) the results from the blood tests the GP ordered and said they were all good except his kidney function had deteriorated some since it was last checked (just to give us a baseline) 2 years ago. The protocol is for the doctor (ie the GP) who ordered the tests to give the results, and we already had a follow up appointment booked with the GP for November 4th, so the ED doctor did say anything more except that the GP was likely to start dh on medication to protect his kidneys.
This morning when dh woke his legs were swollen from his knees to his toes.
We elevated them for an hour which seemed to bring them down a little bit we weren't sure how to proceed so we rang Healthline (a free 10 minute telehealth assessment service).
They did a video assessment of the swelling, which they were concerned about, and given dh had also experienced some tightness across the chest + a little shortness of breath when we had tried to take a short gentle walk about 4pm yesterday (the first since last Monday) they sent us back to ED.
There they performed a chest x-ray, ECG, and checked his blood pressure.
The chest x-ray showed Pleural effusion, then they told us all his results were showing heart failure.
They sent us home with a script for Furosemide to start immediately, and said his GP would need to start him on several other medications but apparently they need to be staggered when starting.
So, now we're trying to process where we're at and figure out what we need to be asking his GP.
I'm posting this with dh's permission and we'd both be grateful for any advice or helpful experience you can share.
