I am a 47 female with PKD and my kidn... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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I am a 47 female with PKD and my kidneys are working at 35%. I struggle on a daily basis with tiredness, fatigued, headaches, etc.

belindascott
belindascott

I work part-time but I am struggling to work. I don't sleep properly, my legs hurt, I have nausea/sickness sometimes, I struggle with eating/go off food. I have been off work twice within so many weeks. My manager asked for me to be referred to Employee health for advice. I want to work but I also 2 children and when they get poorly my immune is always low so I tend to catch whatever they get.

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My kidney function has only been that low when I have had a renal infection but I can identify with much of what you've said. For me, getting better sleep was important and for this I was given the sleeping pill: Zolpidem to take every third night, and after a while (and with the addressing of other problems) I found I needed it less often. I was initially wary of taking sleeping pills but now see that if they are used sparingly they can be a lot of help.

I have found pain and nausea go hand in hand and tackling the pain has reduced the nausea. I've also found chronic pain wears me down and makes everything else feel worse. For the pain I take Tramadol, though I know others who take Gabapentin or Pregabalin (I may move to those in due course). Although it only gives temporary relief, I have found that massage and the work of a good osteopath gives a welcome short-term boost to your feelings of well-being.

Regarding Occupational Health, in my case I have found the OH doctor very supportive in presenting my case to my employer. OH will take the information from your specialist and put it in words your employer can understand (and should take note of).

Lastly, you might look into whether your chronic kidney problem (and repeated viral infections?) has triggered another condition like chronic fatigue/ME. A secondary condition like this could be compounding the kidney problem.

thank you for your email. I've really found your advice very helpful. I have tried gabapentin and pregabalin but they were making me drowsy and not able to work while I was taking them. I find it hard because my job is very stressful and I don't think it helps with me being very tired/fatigued. I have headaches every day without fail/chronic pain. I just don't know what to do with myself. Your advice is appreciated. thank you

at what time of day did you take your gabapentin? i take it at bedtime and I am asleep usually before the tablet has dissolved. when I wake up I feel refreshed which I had not done for about 5 years. if you can get some sleep you can cope with work etc so much better than without it. I also find that gabapentin give you a brighter outlook on life and certainly gives me a "get up and go" feeling.

I did not get any symptoms when I was at your level and in fact did not get any until I was down to 10% and finaltl went on dialysis at 5% and after the removal of one of my kidneys

Hi, I used to take mine in the evening but it still made me very drowsy, I also had difficulty communicating with people at work. probably my job hasn't helped as it is stressful, I have been suffering with dizzyness and headaches, so my renal consultant told me to come off irbesartan for 5 days but I have noticed a lot of sharp pains in my legs.

my mind has become a total fog and I do not know exactly was has caused it but I suspect that it is a combination of the condition itself, dialysis and meds. I cannot concentrate on anything for more than a few minutes at a stretch. my job is in the legal profession and is mentally very precise and my office is incredibly disruptive and stressful due to intentional understaffing and having to cram 5 days' work into 4 days at of course 4 days' pay. I cannot see that I am capable of fulfilling the demands that will be placed on me the minute I step back into the office

I know exactly what you are struggling with. :(

It's the pits. This disease robs us from a normal life. I highly recommend you being very careful with high acidity foods. It's an absolute enemy to those of us with this condition. When things get really bad, I drink a glass of water with 2 spoons of sodium bicarbonate. It brings down acidity levels real fast and has been a life savior for me with both kidney and liver cysts.

I've tried medicines but I now stay away from them. All they do is conceal the problems and add further burdens on the kidneys and liver. You will have a better affect with diet changes.

A low acid diet (vegan is the best) is a must or it gets very uncomfortable, painful, the swelling gets out of control and the bp gets really high. Low acid died will help to keep the swelling down and reduce the production of more cysts.

I'd also recommend you to stay away from too many nuts. I went on a nut-binge before Christmas, and believe me, my crap turned white in color and I really through this was it for me. My kidney's and liver just couldn't process all the protein from the nuts.

I highly recommend Dr Robert Young's recommendations on low acid diets. There are several good videos on this you can view on YouTube, but he's the best! Researcher on the subject for many years.

I am trying to save money to go for surgery in Germany or Switzerland. The right surgery offers a 98% solution. I just can't figure out why this surgery is not recommended in the UK and cyst surgery has such low success rate here when it resolves the condition fully in other countries.

cmcginily
cmcginily in reply to PKDUK

Hi PKDUK

I do not know who told you there is a 98% chance of ADPKD being resolved fully. There is no surgery, and no cure for ADPKD. It is a genetic disease. These clinics may be able to offer cyst ablation or de-roofing of cysts which will give temporary relief of symptoms. They may even be able to offer denervation which will help with pain control. But the kidneys will continue to make more cysts and the damage will continue. Switzerland are just as committed as the UK to finding a cure or long term treatment.

The only treatment at the moment is Tolvaptan which has now been licenced in some Countries, unfortunately it has not been released for general use on the NHS as yet. It is under review by NICE and will be discussed soon. This drug is not a cure has been found to slow the growth of cysts.

Hope this helps, use your money for something nice don't waste it chasing pipe dreams.

Best Wishes Christine

PKDUK
PKDUK in reply to cmcginily

It's only in England I hear that PKD cysts are 'not curable'. The cysts can be "cured" (permanently). Development of new cysts, on the other hand, cannot always be stopped but not all patients develop new cysts.

The method is called ultrasound-guided cyst aspiration-ethanol injection sclerotherapy. I've talked to a few patients who had it done and the existing cysts shrink away and new ones have not reoccured. This kind of therapy is only suitable for those with cysts large than 5mm. For patients whose cysts are less than 5mm (asymptomatic) or the cysts grow beside renal pelvis, renal sclerotherapy is not recommended. There are other methods of cure but they are not offered in Europe.

I don't chase pipe dreams. But I also don't desire to remain ill. I've worked with over 500 doctors and I know from the past that quite a few of so called "incurable" diseases have a cure depending on who is treating you. I also know that many doctors have a failing knowledge level and you simply cannot take their word to be written in stone. You need to do your own research.

ncbi.nlm.nih.gov/pmc/articl... 

karger.com/Article/PDF/188502

ncbi.nlm.nih.gov/pmc/articl... 

iasj.net/iasj?func=fulltext...

cmcginily
cmcginily in reply to PKDUK

There is no cure for ADPKD at the moment. Research is being carried out worldwide. I live in the UK and have had ultrasound-guided cyst aspiration-ethanol injection sclerotherapy on the NHS on 3 occasions for both liver and renal cysts. Although I had some reduction in pain following the procedure, the pain was back within 2 months indicating new cysts had grown to replace the treated ones. I am more than willing to try any treatment or dietary change to help but will not allow people to be misled about cures or info saying treatments are not available. Plus the treatment is very painful for short term results in my personal opinion.

HI I HAVE JUST HAD MY ULTRA SOUND RESULTS NOT GOOD KIDNEYS FUNCTION DOWN NOT AS HIGH AS YOURS BUT EXHAUSTED BREATHLESS TIRED I AM 59 AND SOME OTHER CYSTS THAT ARE SUSPECT HAVING CT SCAN SOON.ITS JUST THE STRESS OF WAITING I HAVE OTHER HEALTH PROBLEMS AS WELL I KNOW HOW YOU FEEL

Hi, thank you for your message. I have been on long-term sick since December 2014 and I am trying to finish on my part-time pension on ill-health. I struggle with my hands and feet and my neurologist says it is linked to my kidneys called small fiber neauropathy pathology. I have headache al the time, fatigue, nausea, sickness, kidney pain, flank pain, there are days when I can't even get out of bed because of the fatigue, dizziness, but this is all supposed to be all symptoms related to PKD, I have two girls aged 8 and 11, I want to spend more time with them and I feel I am letting them down, I do try my best and I take them to do tap and ballet dancing every week.

Hello Belinda,

How are you now? I hope you are still able to correspond even though its been a year. I understand how you feel and what you are going through.

I have had symptoms of APKD for ten years or more and now I'm in my early 50's. I had a busy life when I started to get sick. I ran a business for six years, worked six days a week in a job (as well) and had four children, I was flat out all the time with so much responsibility but I also loved life, loved my family, felt capable, enjoyed a lot of things. Suddenly I found myself slowing down suddenly, with pain, fatigue, weight gain, felt pressure in my head, blinding headaches every day all day, and extreme pain in my sides and back, swelling in my feet and legs and endless uti's. I was given antibiotics for uti's for many years monthly - three monthly. Dr's had no clue I had APKD, they did not take my blood pressure.

Eventually a visiting GP to my medical centre saw me, tested my BP straight away and told me I had high blood pressure. The headaches and pain I described in my abdomen, back and sides had made her realise something else was wrong so she sent me for ultra sound tests and I was diagnosed with APKD. I still had the endless uti's but it really worried me knowing my comprehension was failing a lot because I had pressure in my head, severe headaches all the time and I felt total exhaustion. This GP said it was due to the blood pressure.

Before I was diagnosed doctors were happy to treat me for ut's when they showed up in clinic urine test jars. Somehow after so many years of uti's ( stopped showing up in tests in GP's clinic's) then I was told no I had no uti's. I ended up feeling like was making it all up when I tried to get treatment. Now I don't go for treatment for uti's and eventually they seem to subside after a month or three. GP's look at me blankly if I do go for treatment. They say I don't need anything because it does not show up in the surgery jar tests.

I don't live in the UK, here in Australia we are told there are no symptoms at all for this disease until your kidney's fail. I think APKD patients are only recognised as having probable blood pressure and eventual kidney failure. It is known that blood pressure needs controlling with medication. I'm even told repeatedly that blood pressure may not even be a symptom but it is treatable and that I should have nothing wrong with me. Because there are no known symptoms here with this disease I'm told I should not be sick at all. GP's and specialists say to me that I should have nothing wrong with me and that nothing I have or feel can be related to APKD.

In the past I have had to be unrealistically firm in order (demand) to get GP's or specialists to get medication for blood pressure adapted to levels to keep it controlled. I was suffering with blinding headaches. GP's always stated I I needed to see specialists for everything related to APKD. Specialists really have non-responsive and have not really helped at all, they just monitored what the GP's notes said and monitored my blood pressure saying that any symptoms or how i feel are not related to my disease and I should see the GP.

This was so bad I believed it and stayed away from doctors and specialists for a year once I got the highest blood pressure medicine. I worked for a year after that but got fired due to not coping in my job.

Since then being diagnosed GP's and kidney specialists treat me differently, they seem very non-approachable, non-believing, some even offended by my questions which are related to how I feel, what is wrong..

I ended up being told I had issues emotionally many times, made to feel unwelcome and even told on more than one occasion that I needed to take calming medication. I went and got the medicine. I did not take it I threw the medication out at the recommendation of a chemist who said don't take them, they are addictive and you will need help to get off it. Its so bad here at medical centres that even GP's receptionists have even recently accused of wasting their time and worse by asking for medical certs for work or study..

My symptoms have been worsening for the last year now since being prescribed the highest dosage of blood pressure medicine. I still don't work as it has been so long since I worked I don't get interviews. I don't mind now because of the tiredness, I can't think clearly or concentrate, I often want to go to sleep in a chair at home when attempting to study or watch t.v. Comprehension wise I feel out of it, I don't remember things like taking my wallet when I go shopping. I have pain, in back, sharp pain under ribs in feet, hands, legs under ribs and my head, severe headaches, that last days or sharp stabbing pain in head vagueness, dizziness and muscle cramping or sharp pain in hands feet, legs and an overwhelming heaviness in my back.

We have extreme heat here in summer up even in the 40's, I often wish I lived in the UK. It is so hard to deal with heat and what I have. I don't sleep, at night I'm hot all the time, I can't get comfortable to sleep on my side or back or my back/abdomen hurts or I have crams in my legs and feet wake me up until I walk around and they subside, the need to go to the bathroom with a full or empty bladder.

I have swelling in my body such as in my face, abdomen. My legs and ankles so I can't walk. I fell down a flight of stairs five months ago when it got so bad. I look pregnant in abdomen, so sore swollen, cant loose weight anymore. I have temperatures that accompany headaches, feel hot, exhausted and hurts to urinate most of the time. I am still on the same highest dosage of blood pressure medicine but it makes me feel nauseous all day. I take Panadol for headaches and pain.

APKD has caused great impact to my life despite what I am told. I can't get work anymore, got sacked three times for not being competent. I'd love to have no symptoms I've always studied, had two jobs, raised four children, loved life but now I'm told look exhausted, worn out, over weight, not confident, and appear not to be switched on enough when I go to interviews. I have tried so hard to gain work it is embarrassing. Three days ago a receptionist belittled me in front of a whole surgery for asking for a doctor's cert for not completing my studies. She said basically my above symptoms are ridiculous and can't be related to APKD. I feel like I'm involved in some kind of conspiracy but I believe after reading here that medical information and medical professionals are non-conformative with the disease itself. I don't care about cures, I care about coping.

So now I'm changing GP's and specialists. I'll keep changing I guess until I find someone who can at least listen. Belinda I have written all the above because I thought it may help someone such as your believe in yourself because i know what you say about your symptoms is true. I would very much like to know how you are now. I think its important to talk even online about what we feel and how we suffer with APKD. This website has really helped me feel ok about what is wrong with me. I truly appreciated reading your story. I won't give up on me so don't you either and keep on writing, its going to help in more ways than one.

snowcastles

Hi. I know how you feel. What is your kidney function? I take simvastatin & irbesartan for no & cholestral. I hate it when it's got it knocks me for six. You sound worse than me. Try not to stress even though it's easier said than done. I have pain in my hands. Legs. And feet. My consultant said it is small fiber peripheral neuropathy. I don't think they know what it is. If you are red hot try buying a fan to put at the side of you. You can talk to me anytime you need to.

HI Belinda,

Thanks for your reply and advice.. I take Candesartan which is Atacand 32. I am getting new results today from tests a new specialist took this time last week so will have a better idea soon. Up to now tests are only presenting with the cysts, high blood pressure and ultra sound signs of its progressiveness. My Grandmother and mother passed away from related causes to the disease before kidney failure. They both had the high blood pressure and heart and brain issues. But looking at the side affects caused from the medication today on line I wonder if it may be the Candesartan making me sick. Do you get breathlessness and can't sleep for uncomfortableness and pain? Im ok I had infection which is now being treated when I went back to see a different GP.

Hi, I sometimes get kidney pain under my ribs on my left side only and my back(flank), sometimes I get nausea, I also get shortness of breath, I am now taking an inhaler which helps. Make sure you eat, I eat little and often and drink plenty of water which helps the kidneys. My father and uncle died of this but nowaways there's different medication and its too late for me to try out a medication called tolvaptan, ask your renal consultant about it

Hi Belinda,

I had a look at the tolvaptan online not much information here about it only trials in UK for people up to 50 yrs. Thanks for sharing. Here is the news.

I have been given a new/different med for BP that may be more suitable. Not much opportunity to ask questions and limited information given on any pain except that cysts can break and cause pain. I am used to limited discussion on possible symptoms now but I still find this confusing (that limited information is offered, about well-being, such as diet, exercise, pain medication, (anything in general) that may assist now or in future.

I asked questions and gave some idea of what I was experiencing told apparently its probable that other issues are unrelated to my kidneys and APKD is symptomless except for cysts breaking.

Function was ok in tests. Good news and I'm happy, but I think I'll try the new BP medication, stay away from doctors. I'll see if new BP med's decrease what has been going on enough for me to get on with life.

Hi Belinda,

How are you? Just thought to let you know that I'm feeling better today already on the new BP med.. I had a chat with the chemist about the new script. He said that I should always ask the doctor or a chemist about possible side effects related to the medicine prescribed even (esp.) if doctors don't advise of this. The chemist explained that the list of possible side affects from my previous medicine is listed on print outs sheets that he provided and I should point those out to doctors when I go to see them. I had not thought to do this.

Most of everything I had feeling seems to relate to the medicine side affects list. I had been going to doctors for 12 months but the doctors did not think of checking the BP med's so they remained the same and I stayed ill

The chemist says there are many BP med's with many ways to keep down BP and they act in different ways affecting a person differently. With what you have told me do you think a change in BP med's may help you too? Its was so hard. When I was so unwell I did not think to ask about the BP med's. I was on the wrong med's for two years.. You could ask your specialist and check it out too.

Hi, it's all a matter of getting the right medication and getting your blood pressure under control. Make sure you are drinking plenty of water and try to have less salt, no processed foods. Let me know how you are getting on.