Mother 59, CKD patient - BUN 71, Creatinine 1.41. Need help deciding recourse.
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My 59 year old mom has been suffering from CKD since mid 2012. She had tuberculosis in 1996 and some of it was left untreated which resulted as fibrosis. The left lung was completely damaged. The heart and kidneys were affected too. Doctor says this CKD is a primary to secondary disease. We tried Spiromide when she used to have swelling and water retention in early 2013 and then took her to the hospital. They gave her Lasix and some other medications too. Unfortunately her creatinine was rising to 1.6 at that time due to the medicines and she became mentally confused and also dehydrated. We started herbal alternative consisting of select food only in mid 2013 and gave a her a very limited diet which resulted in her being very weak like a bag of bones and low RBC. Shes in a wheelchair now. Then in early 2014 we started homeopathic treatment. The homeopathic medicines completely eliminated the water retention and the swelling from her legs and beneath eyes. They also resulted in fluctuating creatinine and urea values. Creatinine was for the most part controlled between 1.6 (rarley) to 1.5(commonly) and 1.41 (It is Current value - new low since started homeopathic) But the problem is BUN currently at 71.04 which means Urea is 152 using Urea [mg/dL]= BUN [mg/dL] x 2.14. She is also a diabetic. In previous reports of the heart, Triglycerides have been very high.
No dialysis started yet. RBC count is usually low. So is hemoglobin. But does sometimes imrpove. BP normally 140/60.
She mostly talks normally with short breaths. But today I talked to her on the phone and my heart broke because she said in a very tired voice and running out of breath that "I don't think I'm going to get any better. I dont think Im getting better" It was the sudden end of my world. I don't know what else to include here. I cannot type any further as the tears in my eyes have blurred my vision. If you need any mroe calrificaiton or details, please let me know. I have all test values since 2012 documented along with diets and everything else.
0 likes, 8 replies
helen54849 jad35024
Posted
I'm so sorry to hear your mum is so unwell. I think things are recorded slighty differently here in the uk as far as test results are concerned. Your mums top bp looks a little high and the bottom figure looks a little low, this may be normal for her on account of her other health issues. Have the doctors said what stage CKD your mum has or what her GFR (kidney function) is now?. Have the doctors mentioned dialysis yet as an option and you don't mention if she is suitable for transplant? Is your mum on medication at the moment as sometimes herbal remadies intafere with medication. I know I am asking lots of questions, is your mum still enjoying her food, has she been told by renal consultants to restict certain foods in her diet?
I know this is really scary for you seeing your mum like this and hearing her so frightened but I am happy to speak with you. I have end stage renal failure my last GFR was 12% I'm dropping 1% per week and it is scary. When I was 20% they said I could have dialysis at 15% now they say I have to wait until 10% as I am so low already and it takes 4 weeks at least to book the catheter op for home dialysis I will have a bout 8% at the most by the time they get round to it. This worries my as I like order and don't want to be in the emergency dialysis situation. I also have a live doner (my best friend) I feel very lucky due to this. I work full time still and look after my husband and 2 children. I force myself to do things everyday so I can still control the situation as much as I can, but I am sooo tired and also get out of breath. Please keep me up to date and don't feel alone, there are lots of nice people I have spoken to on this forum. Take care x
jad35024 helen54849
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Thank you so much for your concern and the time you took to reply. Yes, I think the values represented in our reports use differnt measuring units. I'll convert the values. The current urea is 25.36128 mmol/L and creatinine is 124.64 µmol/L. During hospital treatment, it used to be around 132.6 µmol/L and 141.44 µmol/L. The BP does seem a bit off but as you said, it is due to her other problems.
-Have the doctors said what stage CKD your mum has or what her GFR (kidney function) is now?.
The doctor determined using the creatinine values that it is Stage 3
-Have the doctors mentioned dialysis yet as an option and you don't mention if she is suitable for transplant?
They said dialysis would be needed at later stages and GFR was lower. I think in June last year it was between 50 and 59. She may not be a suitable candidate for a transplant as she has respiratory diesase too. Only one lung is fully functional
-Is your mum on medication at the moment as sometimes herbal remadies intafere with medication
She was, but not after January 2014. We briefly tried Lasix as the doctor suggested but that made her Creatinine values go up and gave her indigestion, dehydration, more confusion and stress.
-Is your mum still enjoying her food, has she been told by renal consultants to restict certain foods in her diet?
She has been on a limited diet since early 2013 when this all started. The herbal practioner only told to give her bread, water and peaches and camel's milk. Her water retention and creatinine values did remain under control but Red blood cells fell drastically as there was no nutrition. In January 2014 when we tried Lasix and it made things worse, we gave her homeopathic treatment which compltely eliminated sweling fromt he body, controlled the creatinine and brought it lower. Urea was fluctuating. They say either one of these values will rise or fall in comparison to the other.
You are right Helen - it paints a very morbid and dreary picture of the world for me. You are also going through a difficult time and yet have the energy to look after everyone and carry out normal tasks albeit needing more effort. I'm also glad to know that you have a donor and are eligible for a transplant. I'm pretty sure my mum got so weak due to the herbal diet restriction and I had observed drastic falls in RBC and Hemoglobin values and thats when I changed the type of treatment. I would like to thank you for replying here and I will be getting more tests done in 2 or 3 weeks. Will post updates here.
jad35024
Posted
helen54849 jad35024
Posted
Thank you for providing further information, I would also glady talk with your mother. If she is stage 3 she may stay stable at this point for a while (hopefully). Is there someone at the hospital she could talk to regarding her diet? I am on a low potassium diet but this is for my needs your mum may have different needs. I have Alports you see and loose a lot of protien so haven't been told to eat less protien (i have to watch my potassium). What is your mums protien loss like from her urine samples?. Can she still eat fruit & veg, if she can boil the veg don't steam or cook in the microwave (you can heat up in the micowave) and certain fruits and veg must be avoided, and what about some poached fish. It may not be possible thats why I'm asking you to check first but I would be fed up on that diet as I'm sure would anyone. I would't loose hope of a possible transplant due to one functioning lung, they test a number of things to see if you are suitable. I had a lung xray, ECG and a heart scan, then I had to go on an exersize bike and they measured my lung capacity (my nan only had one lung and lived until she was 86 bless her) so please don't give up hope. You can also have dialysis for years and do fine in this way so please don't panic too much as there are many options. Your mum seems like one hell of a lady having been through and beaten so much, a real fighter. I know what is like to watch someone you love go downhill and you are doing a lot for her. It is hard for the care giver too, keep doing what you are doing. I have a really good poker face and only let people see what I want them to see (I can't bear people being upset I would rather they shout at me) I suppose I am quite hard faced, but I would do anything for anyone to ensure they were ok Ive been told I have a massive heart. I love to help people, its just how I am!. Please keep me updated when your mum has had her appointment. The hospital have just rang me (on a Sunday, it must be bad) ive been summoned tomorrow as I have lost a further % in just 4 days so hopefully they will start my dialysis journey in a calm and orderly manner, I can deal with anything as long as I am told the truth and know what to expect. Sorry to go on about me. I just wanted you to know there are lots of things that can be done. Take care both x
MrsO-UK_Surrey jad35024
Posted
I, too, have CKD, stage 3, but it is a little difficult for us to help from this country as our blood test results are given differently, in mmol/L. It may be easier if you can let us know the stage of her CKD and/or the eGFR figure (estimated Glomerular Filtration Rate) as this would probably mean more to us.
As far as her blood pressure is concerned, it does seem fairly normal. Although the lower diastolic figure seems slightly low, my renal consultant told me it doesn't matter if this figure is a little low.
I'm sure your Mum is drinking plenty of water. I have also come across advice when in the lower stages of CKD that a low protein diet can be helpful.
I'm sure you must be feeling as scared as your Mum, but it's wonderful for her to know that she has such a caring daughter. Difficult for you as you must be feeling you've got to remain strong for your Mum, and you will because that's what us daughters do - it's amazing where our strength comes from at such times. I just hope it helps knowing that others are here who care, even if only virtually.
jad35024 MrsO-UK_Surrey
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It is CKD stage 3 and I have converted the values - The current urea is 25.36128 mmol/L and creatinine is 124.64 µmol/L. During hospital treatment, it used to be around 132.6 µmol/L and 141.44 µmol/L. GFR was last checked in June 213 as it needs a urine sample collected in 24 hours. My mum is very irritable and now it is very difficult to take her to the bathroom on a wheelchair multiple time for the sample so the doctor suggested the urea and creatineine values be used to determine the stage which is at 3.
Yes, we do give her small amounts of water multiple times and also whenever she asks for a glass of water. her diet is very low in protien too. No meat, lentils, eggs etc. Only limited amounts of boiled chicken as there needs to be some nutrition. Still shes very weak.
It is very saddening indeed. I'm not a daughter though but yes I've been looking for any kind of medical treatment for her and even have been going through the Harvard medical journals to see if anything new has been discoverd in the treatment of CKD using stem cells. But it's all in research phases. It would take several years. The opinions you provde are helpful as I'm happy to see patients living their lives normally despite the disease.
jad35024
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MrsO-UK_Surrey jad35024
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I'm more than a little concerned that a herbal practioner should advise only bread, water and peaches and camel's milk. Apart from drinking plenty of fluids, avoiding salt and sticking to a not too high protein level, I don't think following any so-called diet is really necessary/advisable at CKD3 - I feel that a good all-round sensible diet, organic where possible (to avoid as many pesticides as possible) is important. Any special renal diets are generally preserved for those in the very severe stages of kidney function, and even then the diet is usually streamlined depending on the cause of the reduce kidney function.
Although in your Mum's case she has diabetes to factor in (a risk to kidney function), perhaps her heart and lung issues are the main cause of her present state of health?