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Hi, we are a family in the UK who are extremely worried about our mother. She has been in hospital twice recently but the NHS don't seem to have a clue how to treat her and it now just seems a bit like they're fobbing her off! I realise it's very difficult for people to give medical advice through a forum but we're running out of ideas so any advice at all would be much appreciated...
Please see a full explanation of my mum's condition and the circumstances, written by my sister, below:
Our mum has had a long history of illness, and recently it has gotten to the point where it seems all her separate ailments are working against her. Every medication they seem to try has new side effects which make the situation worse.
Mum has quite advanced COPD, which we found out last year is causing left sided heart failure. She is not on at-home oxygen as yet, but her breathing difficulties have become steadily worse over the years. On top of this, she has immunoglobin deficiency, for which she has infusions of white blood cells every three weeks. This treatment is known to cause damage to the liver, so in ordinary times, Mum is checked on every three years to make sure there is no scarring on her liver. Due to her various illnesses, Mum was shielding due to Covid and has not been able to have these regular tests.
In approx Nov 2018 fluid began to build up in her legs. Mum struggled to get any sort of diagnosis as to why this might be and was bounced from various departments looking for blood clots etc, but eventually a consultant said they thought the fluid was gathering as a result of her left sided heart failure. At this point, she was put on diuretics for the first time. Throughout late 2019 this seemed to work, and the fluid seemed to go down - thankfully Mum was able to move around again more.
Sadly though, at the end of 2020, the fluid came back and has now also gathered in her stomach. Again, we started to investigate why this might be happening, and we continue to be bounced from hospital department to department.
More recently, Mum has very low blood pressure and her blood shows regular potassium deficiency. She has been admitted to hospital twice in the last two months because her potassium levels became dangerously low and because of her overall diminishing health. She can't move due to the swelling at this point, as she is very slight and her chest is bad, so the weight of her legs is too much for her. She is also yellow in complexion. She has had a number of tests, from chest x-rays to ultrasounds. All come back with little resounding evidence, other than 'the liver was a bit bright but no considerable damage'.
Our instincts are all that there is something happening with her liver function, given the symptoms and the risk of liver damage from her immune deficiency treatment/lack of testing of this due to Covid. She recently had an endoscopy which showed portal hypertension gastropathy, ascites, watermelon stomach and ulcers in her stomach. She will have a follow up endoscopy in approx a month, in the hope that the ulcers will have cleared and more will be seen on the subsequent scan.
Portal hypertension has been mentioned before by doctors, but never as a particular cause of her symptoms, and with no treatment plan or further investigation. She has yet to have a biopsy or in-depth scan on her liver, as the doctors do not seem to think this is necessary.
During her most recent hospital stay, a doctor began to talk about not wanting to operate because of the 'stress it would cause' and asked about whether she would want to be resuscitated or not - a subsequent doctor told her not to worry about these things - but these interactions obviously seriously shocked and worried my Mum and all her family. Nobody has given us any clarity on what any of this meant. We have called the ward and they won't provide any further info at present, and plan to discharge her today.
She is currently taking:
Mum’s medication routine
Inhalers: as needed
Two in the morning with breakfast:
- Spironolactone (brand name Accord): Stomach swelling
Once a day:
- Colecalciferol (brand name Mylan): Calcium
- Folic Acid (brand name Crescent)
Twice a day:
- Bisoprolol Fumarate (brand name Sandoz): For the heart
- Ferrous Fumarate (brand name MercuryPharma): Iron
- Furosemide (brand name Crescent): Leg swelling
- Lansoprazole capsule (gastro-resistant): Stomach ulcers and heartburn
Once a day with evening meal:
- Calci-D (brand name POM I think) : Chewable Calcium
The only thing that I can say is that she needs to get an in-depth work up on her liver. This is why she is yellow or jaundiced. A good work up on her heart and lungs would be a good idea too. How old is she?
I am so sorry about the difficulties in caring for your mother. It shows that you love your mother deeply and it shows that she raised a caring loving person in return.
I would never suggest any diagnosis. I believe that your main question is is the liver being damaged by the congestive health failure (CHF) or if it is a primary liver damage insult. There has always been an association between the heart and the liver so called CHF-associated liver disease. This is one question and answer that I found that addresses the question of how to separate the two.
"G&H How is primary liver disease differentiated from CHF-associated liver disease?
CG There are a number of clinical characteristics as well as laboratory tests that help distinguish CHF-related liver disease from primary liver disease due to the former’s distinct pathophysiology. For example, patients with CHF-associated liver disease rarely have evidence of portosystemic shunts, such as esophageal varices or hemangiomas. This is in contrast to just about every other type of primary liver disease with cirrhosis. The ascites associated with CHF compared with that seen in primary liver disease tends to be associated with higher lactate dehydrogenase levels, higher protein levels in the ascites (>2.5 g/dL), and higher red blood cell counts (RBCs). These parameters are seen in cardiac ascites as opposed to ascites of primary liver disease due to hepatic congestion and leaking of RBCs into the ascites via lymph tissue, with resulting lysis in the setting of preserved synthetic function (Figure 1). Jaundice is relatively uncommon in CHF-related liver disease. Only about 5% of patients with hepatic disease and CHF will have clinically overt jaundice, but up to 70% of patients may have a mild increase in unconjugated bilirubinemia (<3 g/dL total bilirubin).
If a question persists about the etiology of the liver disease, a liver biopsy may be revealing. ...
Thus, there are a number of distinguishing clinical characteristics as well as laboratory and histologic findings that distinguish primary liver disease from CHF-associated liver disease."
I know there is a lot of technical stuff there that you don't have access to or may not understand. It is a complicated case and really needs expert opinions from somebody who has seen your mother and looked at all of the relevant pertinent information to be able to give any reasonable answers to all of your questions. I certainly hope you get somebody more responsive to your questions there in charge of your mother.
The only thing that I can say is that she needs to get an in-depth work up on her liver. This is why she is yellow or jaundiced. A good work up on her heart and lungs would be a good idea too. How old is she?
I am so sorry about the difficulties in caring for your mother. It shows that you love your mother deeply and it shows that she raised a caring loving person in return.
I would never suggest any diagnosis. I believe that your main question is is the liver being damaged by the congestive health failure (CHF) or if it is a primary liver damage insult. There has always been an association between the heart and the liver so called CHF-associated liver disease. This is one question and answer that I found that addresses the question of how to separate the two.
"G&H How is primary liver disease differentiated from CHF-associated liver disease?
CG There are a number of clinical characteristics as well as laboratory tests that help distinguish CHF-related liver disease from primary liver disease due to the former’s distinct pathophysiology. For example, patients with CHF-associated liver disease rarely have evidence of portosystemic shunts, such as esophageal varices or hemangiomas. This is in contrast to just about every other type of primary liver disease with cirrhosis. The ascites associated with CHF compared with that seen in primary liver disease tends to be associated with higher lactate dehydrogenase levels, higher protein levels in the ascites (>2.5 g/dL), and higher red blood cell counts (RBCs). These parameters are seen in cardiac ascites as opposed to ascites of primary liver disease due to hepatic congestion and leaking of RBCs into the ascites via lymph tissue, with resulting lysis in the setting of preserved synthetic function (Figure 1). Jaundice is relatively uncommon in CHF-related liver disease. Only about 5% of patients with hepatic disease and CHF will have clinically overt jaundice, but up to 70% of patients may have a mild increase in unconjugated bilirubinemia (<3 g/dL total bilirubin).
If a question persists about the etiology of the liver disease, a liver biopsy may be revealing. ...
Thus, there are a number of distinguishing clinical characteristics as well as laboratory and histologic findings that distinguish primary liver disease from CHF-associated liver disease."
I know there is a lot of technical stuff there that you don't have access to or may not understand. It is a complicated case and really needs expert opinions from somebody who has seen your mother and looked at all of the relevant pertinent information to be able to give any reasonable answers to all of your questions. I certainly hope you get somebody more responsive to your questions there in charge of your mother.
Thanks for this. Any information we can get at the moment is very welcome.
In general to help you understand some of symptoms of leg swelling and ascites (stomach) that most of the time those symptoms are due to too much water being retained by the body because of either heart, liver or kidney failure. The retention of all of that water causes the sodium levels in your blood to become low and thus those causes are termed edematous hyponatremia (low sodium). There are biological consequences to having your blood sodium low with aldosterone being secreted in order to raise the sodium level. The hyperaldosterone state tells the kidney to retain the sodium in an effort to raise the sodium level but it also causes the kidney to release the potassium because both are positive charged and in order to maintain is-neutrality in the kidney tubule the potassium is lost in the urine. Hormonally when a sodium ion is retained then a potassium ion is lost and when a potassium ion is retained by the kidney then a sodium ion is lost. It is a balancing act.
There's two major causes for potassium loss is either through the GI gut in the form of diarrhea and the other is through the urine. The kidney regulates both the sodium and the potassium in the body. It is easy to check to see what the kidney is doing with regards to potassium by doing a urine potassium test. If the urine potassium is high > 20 meQ/L then one knows that in the presence of hypokalemia (low potassium) that the person has hormone causes releasing the potassium and the cause for the loss.
The treatment for that is to use a diuretic that gets rid of the excess water and elevated the sodium by doing so. It is problematic because the diuretics normally work by forcing the sodium out of you body and the water will follow. Some are known as potassium sparing diuretics meaning they leave the potassium alone while others are not. The action of the diuretics that use the sodium to get rid of the water are less effective when the blood sodium levels are very low. They work better when the sodium isn't extremely low. Spironolactone is a potassium-sparing diuretic.
I hope the information helps somewhat understand some of complicated medical issues that you have questions with in an effort in bridging that gap with your doctors and healthcare provides in opening up a line of communication.
My late husband had Congestive Heart Failure and Lymphedema. His legs would swell with excess fluid. He took Spironolactone like your Mom does.
He used a compression pump prescribed by a podiatrist. If he went any length of time without using it than fluid would build up also in his internal organs.
This site has photos of examples of compression pumps used at home for lymphedema. There are other brands. This is just for you to see what it looks like.
The boots are sized to the person and the pump inflates and deflates the boots. After 45 minutes hooked up to the pump my husband would have to pee right away! All that fluid being expelled.
I was always amazed at how slim his legs looked after he used the pump.
He also had to keep his legs wrapped in ace bandages to keep the legs from expanding with fluid.
You might want to discuss this with her doctor. Here in The U.S. these pumps are often prescribed by a podiatrist (foot specialist.)
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