What happens when you are on a high dose of medicine but it's not working well?
This is a long post but I just wanted some advice, it would be helpful. My dad is 75 years old and he has heart failure for a few years now. I know all the usual symptoms he has recently been having like swelling in the feet, looking puffy and feeling breathless. He was in hospital in March for 2 weeks to drain the fluid and he was better after that and walked quite a bit, till few days ago..he said he gets a bit dizzy and finds it hard to walk, gets breathless from time to time.
I spoke with the GP and I asked him can't the diuretic dose be increased?. He said he is already on a very high dose, and is on a higher dose compared to all the other heart failure patients he sees. I directly asked him, what stage heart failure is he? And he said it's hard for a cardiologist to even know and that if the medicine dose is increased further, there has to be a balance between keeping the kidneys healthy and not doing damage which is hard to control. In my dad's case, he said he can increase the diuretic dose a little bit further as my dad's kidney and blood test results are stable right now. But he said if it doesn't work, he will have to go to hospital to drain it again.
I have been really worried for the future. What is his prognosis like?, Will things get worse from here?, Why is he getting fluid build up so soon, when he just had fluid drained out 2 months ago?. Will his walking be very limited?. My mum works part time, me and my sister work full time. My dad has been saying he is scared when he is on his own, if he feels breathless and no one is here. I don't like seeing him suffer like this but I just want to know if things can get better?
Hi. Sorry for the late reply. And thank you for posting here about your concerns about your dad and with your questions. . As you probably know, we cannot diagnose or offer medical advice over the Internet, for your own safety of course. And great questions. I wish I could give you an answer to all of them. Although, I do believe those questions are best answered by your physician, as prognosis and treatment may vary from person to person. Since it has been a while since you posted, I am wondering how your dad is doing today. Do you have any further updates you can provide? Has he had a follow-up visit with his cardiologist? John. heart-failure.net community moderator. Hi John, thank you for replying back. So here is the full story. The heart failure nurse visited my dad at home, she said he does have fluid build up in his body and lungs which causes the breathlessness. Also, apparently my dad misunderstood and thought he had to stop taking a diuretic, he got confused as some new changes were made to his medication, the last time he had treatment and got discharged. So for about 2 months, he wasn't taking this new diuretic called 'Jardiance'. In March 2022, he was in hospital and got discharged with this medication. I feel a bit guilty because maybe I should have helped make it clear to my dad, he is 75 and I noticed he is being more forgetful now then before, so this time I'm really going to keep my eyes and ears wide open. So the nurse said that is another reason why he was out of breath...
When the nurse visited, she did a blood test and said depending on results of the blood test, if his potassium levels are stable, then he can take a very strong and powerful diuretic that will get rid of all of the fluid within a week or 2. If the potassium levels are very low, then he can't take the drug and has to go into hospital to intravenously remove the fluid, as he did before. It turned out my dad had low potassium and haemoglobin levels, so that could explain the fainting, breath issues too.
Yes. That could explain it. And thank you for the update as to how your dad is doing. Sounds like Sounds like he is getting good care. It is so normal to get confused about about such things when you are newly released from the hospital. Your dad is very fortunate to have you helping him as he is going through all of this. Did he end up going back to the hospital due to the low potassium level? Or was his healthcare team able to manage his condition at home? Just curious. John. heart-failure.net community moderator He is doing better, his weight reduced from 69 to 62kg. And yes my dad jokes that the home has become like a mini pharmacy now, with all these tablets. To add to the confusion, interestingly, the last time he got discharged, he had his own discharge note and also another heart failure patients discharge summary was added to my dads one, so I wonder if that confused things further for him?. I did tell my dad, that is not your notes, your one is on the other pages.
He got admitted to the hospital because the nurse said it was not safe for them to prescribe the the strong diuretic at home when his potassium level is low. If his potassium was normal, then he could have taken the medicine at home, without going to hospital. My dad actually just got admitted yesterday to the heart failure unit as a bed became available. He was in a overflow ward before that.
Just to add, my dad is also a type 2 diabetic and in March, his medication got changed. He now has to take insulin twice a day which makes him more vulnerable to hypos when he faints.
My dad is lucky but does get anxious when we are all at work. What we are interested to see is, how much will he be able to independently walk after being discharged from the hospital?. Usually, they give a discharge summary so I will definitely carefully read it, to see what changes there has been since his last discharge.
And also, we have always booked family holidays around September. The last few years my dad has gone on very long trips, he was breathless but walked a bit. He was good on the plane. For example we went from London to Malaysia and Thailand within the last 3 to 4 years ago. I am going to see how my dad gets on with the walking and if he is doing fine, then book a holiday. I hate the idea of thinking that heart failure stops everything. It has been stressful to watch my dad go through this, as well as the pressure on us so I do feel like we need a break.Thank you for the update. I know it must be hard for you and your dad, although the heart failure unit must be a good fit for him given his current situation. In my experience with patients from nursing homes, usually they do physical therapy -- so that the patient can build up strength and stay active as possible. Is this something that your dad is able to get where he is at currently? Just curious. John. heart-failure.net community moderator.
He is back home now from the hospital 🙂. He looks alot thinner after they removed the fluid. He is trying to control it and the physio is getting him to walk. There are services available for this. He has a tendency to slow down and gets scared walking because he is at risk of falls but I'm trying to encourage him to keep active even though it is hard and also keeping a eye on his fluid intake. Thats what the heart failure kept advising to not drink more then he should so I guess I'm going to see how it goes. Feeling thirsty and not being able to drink too much in warm water is hard though.
He is generally weak and can walk short distances, I guess time will only tell if his condition remains stable in a few months time.Thank you for the update about your dad. I am So glad to see he made it home from the hospital. Glad to hear that your dad is still able to get physio, and that he is making efforts to stay as active as he can. Even if it is at a slow pace, anything he can do to stay active can be beneficial -- as I'm sure you know. And, again, he is very fortunate to have you on his side to help him manage his condition. Keep up the good work. John. heart-failure.net community moderator.
