Author Topic: Fluid Intake Restriction - A Flashbulb Moment for Me@  (Read 566 times)

Mark McConway

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  • Posts: 74
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Fluid Intake Restriction - A Flashbulb Moment for Me@
« on: August 11, 2021, 04:19:50 pm »




I'm not a doctor but these steps may be useful to someone who's just started their Amyloidosis treatment on chemotherapy.

10 years ago, in 2011, I was originally diagnosed with the AL type, was successfully treated, and had 10 years very good, almost symptom-free remission, before relapsing earlier this year. I'm now half way through Cycle 2 of Daratumamub (who names these things?) Dexamethasone and Bortezemib.

One of the biggest issues for me, practically speaking ,was the buildup of fluid in my feet ankles and legs. What 've discovered this time is
the critical importance of PACING YOUR FLUID INTAKE within whatever maximum limit you have been set.  If you do this with great discipline, it could help you enormously, along with the correct doses of diuretics.  Let me explain as no-one, until very recently, has even mentioned anything other than keeping within your daily limit.

So, so first thing to remember is that all fluid counts.  Your milk in cereal, your coffees, the soups and baked beans-  and even the liquid meds - all have fluid.  Measure what goes in, and measure what comes out as accurately as you can. It's a hassle to do, especially at night, but there are serious dividends to be gained if you stick with it.  Trust me, I know what I'm talking about here.  I've lived it.

 At the start of my recent treatment, fluid was continuing to build, even though I was following the rules and on Furosemide.  With the introduction of Spironolactone - and an increase in Furosomide - it was like a dam bursting at the start. I kept passing water and, within 24hrs, my legs were shrinking...but started to fill up again on the following day.  I couldn't explain it as I was within my limits.
However, in a consultation with my renal consultant, he said that I needed to find the 'sweet spot' necessary to give a gradual reduction of the swelling over time. In other words, look to find only a small deficit between what you take in and what goes out.  If you take in 1.2l and 1.3ls coming out, that's fine if it happens every day. Aha, solved, you might think.

What he didn't say, that ultimately made the difference to me, was to break the actual consumption of the fluid down even further.  Sipping small amounts throughout the day to get to the 1.2 litres overall is far far more effective than say taking a 200ml slug to get tablets down your neck! and having a 200ml cuppa later. 

In recent days, I became rigorous in splitting things up - even using the milk in my Weetabix to help with getting tablets down along with smaller glasses of water. 

Yesterday I knew exactly where the 'sweet spot' was for me.  60 - 80ml sips throughout the day...and night time.  An Amyloidosis friend told me that she sets an alarm to make sure she was hydrating during the night and I did likewise but with my sips included in the 24hr period.

Result?  For the first time since starting treatment, my skin was becoming noticeably springy again, with oedemic pitting in my legs receding and breathlessness easing massively.

Like everything else, you should check all this with your Doctor. I mention it only as some guidance from someone who's going through the same thing in real time just now and found something significant to say about it.

Good luck with your onward journey!

Mark

Kayleigh

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  • Posts: 3
  • Reason for joining: My husband has amyloidosis
  • Diagnosed: Diagnosed in July 2021
Re: Fluid Intake Restriction - A Flashbulb Moment for Me@
« Reply #1 on: August 11, 2021, 06:42:39 pm »
Thank you for this post really useful my husband is just starting chemo and fluid build up is a huge issue for him he sees a cardiovascular dr who is currently working out right dose of diuretics to ease this. It sometimes feels like one thing stops the other treatment happening atm its an uphill struggle but have to keep positive
Kayleigh

Mark McConway

  • **
  • Posts: 74
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Fluid Intake Restriction - A Flashbulb Moment for Me@
« Reply #2 on: August 13, 2021, 08:49:22 am »
Hi Kayleigh,

Hope your husband gets on well with his treatment.

If his kidneys are involved, (which I wouldn't know from your post), is a renal consultant involved in his care at the local hospital?

I have had to do a lot of self-advocating this time round to ensure that a renal consultant got involved locally (with some knowledge of Amyloidosis) in addition to the haematology team.  My renal consultant is a vey good guy and has helped me massively with controlling this fluid as best I can.  Really made a difference to get him on board.

Best of luck

Mark

Birchman

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  • Posts: 5
  • Reason for joining: Patient with AL Amyloidosis
  • Diagnosed: Initial diagnosis March 2021 - AL diagnosis June 2021
Re: Fluid Intake Restriction - A Flashbulb Moment for Me@
« Reply #3 on: August 18, 2021, 06:33:23 pm »
I was recently diagnosed with AL Amyloidosis and have been told not to drink more than 1.5 litres of liquid per day. I don't have to measure what comes out, but I do have to weigh myself every day. Unfortunately, I haven't had a "flashbulb moment".  My weight is creeping down but nothing large.
Which tablets I take is affected by my blood pressure, which is very low. I spent a week in hospital last August and was given two large daily injections of Furosemide. This removed all the edema from my lungs and legs. Unfortunately, the edema is now back in my lower leg/ankles.

I am on a high daily dosage of Bumetanide and a low dose of Spironolactone and Bisoprolol. I did try Furosemide, but the cardiac team thought I was better on Bumetanide. Maybe something to do with blood pressure. I was given a day trial of Metolazone and I now take one tablet weekly along with lots of Spiro K.

Literally while I was typing this, I had a telephone call asking me to go in to hospital for a few days for a bone-marrow biopsy and more CT scans. I've had so many scans at the Royal Free, I'm surprised I need any more! Hopefully this is a prelude to starting my chemo treatment.