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Newly Diagnosed - Terminology & Sleep Problems

Posted , 9 users are following.

mcl1969
mcl1969

So I've recently learned that I'm not invincible or immortal.

I'm 48, from the UK. Long time hypertensive and T2 diabetic, neither well controlled because it didn't need to be because I was immortal right? Tablets for BP & T2. I don't smoke or drink. Well, occasional shandy, I'm always the driver, it's just never interested me.

Recently attended A&E after suffering a dizzy spell. Got checked over and had full bloods taken and checked.

Advised that I was being admitted overnight as my kidney function was troublesome. A previous blood test in November 2016 had shown some concern but after hearing nothing after a retest I assumed, wrongly, that all was well. I missed 2017 diabetic review....

So I'm on a steep learning curve. It turns out I was anaemic, which would explain a lot of the lethargy and constant feeling cold I'd been suffering in recent months.

But it also turned out that the anaemia was cause by Chronic Kidney Disease or Acute Kidney Injury.

The A&E consultant seemed concerned it was a rapid decline in function since my 2016 test results but had nothing from 2017 to measure it against. He mentioned Ibuprofen but I hadn't taken but 2 x 200mg in the last 6 months.

I'm confused about the different readings that I've been reading about. Basically, during a 5 night stay in hospital trying to regulate my blood glucose and blood pressure, I was released. BP was still quite high, about 150/90+ ish but sugars were under control.

I don't know what my GFR reading was or indeed what it even IS! My creatanine levels were steady at about 350, whereas in Nov 2016 they were in the 160-180 range, slightly above what was considered normal.

I was seen by a Nephrologist on the ward and asked him some blunt questions. One ward doctor had told me that with creatanine levels at 350 my kidneys were functioning at about 40%. The Nephologist poopooed that and said my function was about 16% and they'd start dialysis at 8%!!!!!

I was very taken aback.

I was eventually released but since I've been released I have been absolutely EXHAUSTED. I've never been the most fit guy in the world but I was able to function well and keep up with general daily living activities without struggling. Now, a 100 yard walk to my work place from the car park has to be done at a steady pace.

I am also suffering terribly from sleep problems.

I'm not sure if this is related but since October 2017 I've had problems whereby I've had a lot of throat mucus, sinus popping and bubbling which in turn has been effectively choking my airways at night preventing me from sleeping. I was pretty much OK until my hospital visit and ironically I slept well in hospital.

In Oct 2017 I noticed a shortness of breath on holiday one day accompanied with a "raspy" feeling on my outward breath, as if mucus was blocked. It comes and goes but a few weeks ago I had a horrendous 2-3 weeks of hacking up thick yellow mucus, unable to sleep, constant throat clearing, nose mucus etc. Of course, I didn't want to bother the doctor with all this and bravely battled on.

So, like one other person who's story I've read on here, I'm pretty terrified that this is it for me. Steady decline, dialysis, and hope I can find someone that likes me enough to offer up a spare kidney.

I had a drip with iron supplement just before I left hospital and a blood test about a week ago which showed that my iron levels were back to normal but the "haemoglobins" were still low and apparently these are important for energy levels as they carry oxygen around your body?

I guess I'm just looking for some reassurance from people who have been down this path and have managed to prevent any further kidney damage by good BP & T2D control which is what the Nephrologist suspects my damage has been caused by.

I'm seeing him for a check up later this month and hoping against hope that it's still some acute damage that's caused my problems and it's somewhat reversible but deep down I'm sure it's as they suspect, chronic kidney disease cause by a combination of poorly controlled BP, T2D and various medications over the years.

I need to feel well again for my family. My children have already lost their Mother to cancer so the worry is compounded for me neutral

Thanks in advance for any info/encouragement anyone can offer.

M.

1 like, 16 replies

16 Replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey mcl1969

    Posted

    mcl, my heart goes out to you especially after reading your penultimate paragraph.  At this stage, I would stay positive - after now getting the correct treatment to keep your BP and sugar levels under strict control, you could well find that there may be an improvement by the time of your next appointment.  In any event, I am sure you will follow all the right guidelines now to ensure that you do everything possible to keep your present function stable.  Certainly avoid NSAIDs such as Ibuprofen like the plague - I learnt that to my cost, and I only have one kidney!  Avoid all salt in your diet, keep your water intake up and, if any medications are needed at any time, always check with both the GP and especially the pharmacist as to the effect on kidneys.  The greatest of luck at your next appointment.
    • mcl1969
      mcl1969 MrsO-UK_Surrey

      Posted

      Thanks Mrs O, I've never used an online forum for any kind of support related to medical issues before so this is a big step for me. It makes me feel kind of weak. I'm drinking plenty of water and making sure I stay hydrated. My sugars are the best they've ever been, medically assisted to be fair, but I've made huge efforts to cut out crappy food habits. BP is still higher than I'd like but that's being monitored with a view to further alternations to BP meds. Thank you for the good wishes.

  • LynQ
    LynQ mcl1969

    Posted

    Hi mcl,

    The higher your creatinine, the lower your GFR will be as GFR is a formula based on creatinine.  If you were anaemic because of CKD an iron supplement won't fix your Hb.  For blood cells to be made, you need iron in your store (ferritin), folic acid Vitamin B12 and a protein called erithropoeitin which is made in the kidneys.  As your kidney function fails, you stop making this and will need injections of an artificial version (EPO or what cyclists take to improve their performance.)  My GFR is 24 and I take regular folic acid tablets and have a 3 monthly VitaminB12 injection.  I inject EPO 1 per week and this keeps my Hb in normal range. About once a year I have intravenous iron as you don't absorb iron so well if you have CKD.  This is not anything like as scary as it sounds and I soon got used to it.  Its not painful and it WORKS.  Look after yourself and good luck.

    • mcl1969
      mcl1969 LynQ

      Posted

      Hi Lyn. That's all good information, thank you. I had anaemia for sure and I always associate that with low iron, but I know now that these things aren't that straight forward.

      I had low iron for sure, and they gave me what I was led to believe was an iron infusion before I left hospital. Via a canular, a bag of what looked like blood took about 30 mins to drip into me. I was told that in 4-5 days this would help me feels lots better. It hasn't really.

      I also, wrongly, assumed that when my iron was back to normal levels, this would increase the presently low Hb levels. I made this assumption after a visit to my GP 7-10 days ago. I obviously need ask more questions about Creatanine, GFR, HB, Iron, ferritin, folic acid, B12 and EPO!!!

      Since I've left hospital I've been feeling very very weak. So easily tired, even a walk down the street of a lunch time leaves me shattered. Not so much out of breath, just totally weak.

      Thanks again for the valuable info Lyn.

      M

  • rick39522
    rick39522 mcl1969

    Posted

    First let me say I am not a doctor.  That said some things in all the measurements you have gone through are confusing.  I am in the United States.  Your measurements for creatinine are in what is called umol.  Here we use ml.  I used an online conversion tool and it said that your creatinine was therefore 3.96.  IF I did this correctly, it does not seem to make sense that the kidney doctor said you needed to start dialysis.  Of course they have more access to what is wrong with your kidneys.  But using just creatinine as a measurement, dialysis is "usually" not done until the creatinine level is around 10.    Additionally it was surprising to hear they did not keep you in the hospital with blood pressure at that range of 150/90 without trying to get it lower first.  Yes the damage to your kidney is likely caused by neglected high blood pressure and T2D.  Which surprises me further that they did not make a more immediate attempt to get your pressure down to prevent further damage.

    ?Assume they did an ultrasound of the kidneys to see them and related those findings to you?  This would eliminate the possibility that there is some growth on perhaps just one of the kidneys which is causing the results and perhaps the other is functioning?  There are so many possibilities that you need testing for.

    ?Your understanding is correct.  If the kidney or kidneys are damaged to reverse it is not an option.  I don't know why they don't see you more immediately than a month from now.  If it were me, I would find a great kidney doctor and a good primary care doctor (perhaps a urologist) and get their opinion, rather than a ward doctor.  They will run complete tests and present you with a clear picture of your status. 

    ?All of us on here can sympathize with the mental effects you are having.  One moment assuming the worst, the next being hopeful.  Probably reading so many conflicting things about your situation on the internet.  The fact that this is in your mind constantly no matter what you are doing.  I wish I could say that stops.  It really does not get better but you DO get to a place where you are more realistic and accept it better, but it never leaves your mind.  The most important.  GET A GOOD MEDICAL TEAM AS SOON AS POSSIBLE AND HAVE A DOCTOR YOU TRUST EXPLAIN THE TRUTH.

    • mcl1969
      mcl1969 rick39522

      Posted

      Hi Rick and thanks for taking the time to reply. I think you have misread some of my post. The Doc did not say that I had to start dialysis, only that I would if my function reached about 8%.

      They did indeed do an ultrasound of the kidneys. No growths found which was a huge relief. Urination is normal, they did regular input/output checks on me while I was admitted. Kidneys are still normal size although there was some visual signs of damage.

      I see my Nephrologist again in a month but I have been back to see my GP since my discharge from hospital. While I was admitted I saw several ward duty doctors, an oncall consultant, and also the senior Nephrologist who I am now under.

      I've asked direct questions already and had direct answers. I feel that I need as much info as I can possibly get to assist me in driving myself in minimising any further deterioration.

      At the moment I've had recurring sinus/throat mucus problems causing me severe sleep problems so I need to focus on sorting that out as a priority as I'm sure that's doing me no good at all.

      Thanks again for taking the time to reply.

      M

    • porky2836504
      porky2836504 mcl1969

      Posted

      For a start ,mcl believe me its a long hard road. I am type 1 diabetic, for about 28 years and had ckd for about 15 years. I have been on the kidney/ pancreas transplant list for 8 years. Like you my cretin levels as l call them are inthe 300s and egfr 16. I work for a living throwing heavy lumps of metal around (making and building power stations. I start work at about 8 am and by 1 pm I am shattered. This is no concilation but it doesnt get easier. What you have to do is pace yourself and learn what took 2 minutes to do before will now take you 5 minutes. Like you I too am anaemic, and this along with the diabetes could contribute to your dizzy spells. Recently I was admitted to hospital after blacking out at the top of the stairs, after several days in hospital the doctors could not explain why I blacked out . Bp and everything was fine. But thanks toa caring nurse it was discovered that resting my bp was spot on but when I stood up my bp dropped significantly. Hence the dizzy spells, which is a common problem in diabetics with anaemia. The thing I hate the most is the tiredness. Like you I never smoked ,and my last drink was 34 years ago. They given me iron infusions and put me on monthly injections of arenesp, all of which didnt touch the tiredness. All I can say is pace yourself and adjust your life. Good luck and for god sake NEVER settle for a 10 minute appointment with your doctor. That appointment is not just about you , it involves your loved ones.
    • mcl1969
      mcl1969 porky2836504

      Posted

      Thanks Porky. I was admitted originally becasue I had a dizzy spell whilst driving. But my BP was seriously raised and they think that this caused the dizzy spell. One of those things that they can never know for sure I suppose.

      I feel for you in your job. I'm at a desk all day so easy enough other than I find it hard to concentrate as much as I did and doesn't do my circulation much good.

      Getting the anaemia and Hb levels sorted so I have more energy is my immediate aim. It shocks me that before my dizzy spell I was fine yet immediately after that episode I'm whacked out at the slightest exertion.

      Thanks a lot for all the advice and taking time out to comment.

      M

  • marj01201
    marj01201 mcl1969

    Posted

    mcl,

    I'm sure most of us participating on this forum can empathize with you. I suspect you are right; your kidney damage is permanent. Although, as you get your BP in better range and get your glucose under control you may see some improvement in your renal function. That would certainly bee good news if that were to happen.

    The important thing now is to get a good group of physicians working on your case. Then work with them--do what they say and tell them how it's working on a daily basis. With effective medical care it may be possible to stabilize your renal function or at least slow the progression.

    I have severe anemia as a side affect of my CKD. Without treatment my hemoglobin is only about 5.4. (Normal would be no lower than 12.0) my treatment plan includes taking a medication , Auryxia 210 mg 3 times a day and EPO injections once a month. This keeps my hemoglobin between 11.0 and 12.0. I live in the USA where our physicians are really not allowed to administer EPO injections unless our hemoglobin falls below 10.0 But I find that I feel and function well with this anemia treatment plan.

    I also follow a low potassium diet and take a potassium binder. Other than that I take some vitamins daily, Complex B12 and D. Everything is prescribed by one of my doctors.

    I learned that I have CKD about seven years ago. I'm past the shock. I just focus on doing what I'm told on a daily basis. My renal function has deteriorated over the past seven years. In my case the deterioration seems to have been tied to extreme dehydration I experienced for anywhere from 3-6 consecutive weeks. (Each time I was dehydrated I was also quite sick.) the dehydration caused extremely low blood pressure as well as suddenly plummeting blood pressure. low blood pressure is just as bad for our kidneys as high blood pressure. In between each episode of dehydration my renal function has improved some and then has stabilized for several years.

    Consequently, I hope that you will experience some improvement in your renal function as you get your BP and glucose in appropriate range. at a minimum, I hope you and your medical team will be able to stabilize your renal function or at least slow its deterioration.

    Marj

    • mcl1969
      mcl1969 marj01201

      Posted

      Thanks very much Marj for sharing your experience. I've been a massive diet coke drinker for many years and I wonder if that's had an impact. Although my deterioration has been quite rapid over about 12-18 months which is why the docs were searching for a reason such as Ibuprofen use etc.

      By coincidence, I've recently restricted my diet coke consumption massively and had a water dispenser installed at my office so am now staying properly hydrated.

      I'm hoping that stabilising my sugars in particular, which were way out of control in all honesty, will see a halt to the deterioration, if not perhaps a little improvement.

      I'll be happy to take a monthly injection to get my Hb back to normal, I can't carry on like I am.

      Keeping things regulated, sugars, BP, diet, meds, all seem to be the order of the day.

      Thanks again for your reply Marj.

      M

    • rick39522
      rick39522 mcl1969

      Posted

      My renal function is low due to kidney removal (cancer) last July 31st.  When told what foods to avoid, the top of the list from both the urologist and the kidney doctor was SODA/COLA of any type.  I asked why?  The told me that all sodas contain two ingredients harmful to kidneys, especially in patients with CKD.  They are phosphoric acid and potassium.  I have always been a person who drinks water.  So I replaced any soda consumption with water.  I try to do at least 70 to 80 ounces per day.    The good news was that a beer or two occasionally is not harmful. smile smile.
    • mcl1969
      mcl1969 rick39522

      Posted

      I rely mainly on water for my hydration with the odd cup of tea, usually first thing in the morning. I don't drink beer very often at all, I can live without it. I've gone from 3-4 cans of diet coke a day, sometimes more, to just the occasional can/bottle. It's amazing the shock of bad medical news can do for your motivation!!!

  • syed28635
    syed28635 mcl1969

    Posted

    Hello mcl hope you are feeling a bit better after reading the brief replies of mrs O surry uk and LynQ.i just want to add something what I've gone through im 40 year old male from the uk I’m not diabetic i just had high blood pressure for don’t know how long but I started treating it from 2012 when my gp told me that my kidney function is slightly declined but there is nothing to worry about.i didn’t really care about my blood pressure or my general health until I started the same feeling as you are going through now with 340 creatinine level in October 2016.unfortunately our(nhs)kidney doctor are so busy  that they hardly  give a 10 minutes appointment after months of wait and can’t do much.i was very hopeless stressed as my Kidney doctor was planing to get me ready for dialysis.that time i had constant cough flue cold for more than 6 month and my kidney doctor never paid any attention to cure that illness.in December 2016 when i had appointment with dialysis nurse to put the fistula I refused to go for dialysis and booked a ticket to kashmir(where i am originally from)despite Kidney doctors advise not to travel.ive been to all reputed nephrologists of the whole country and their opinions were same.only one kidney doctor gave me the best piece of advice which i am sharing with you as you said you've been bravely battling with illness.that is the main cause of declining your kidney functions.Do not suffer/ battle with genral illnesses try to cure them asap even its just a flue.these minor infection eat the kidney function quickly.since that advice I started to look after myself kept my blood pressure well under control. I’m taking flue jabs and pneumonia jabs regularly keep myself covered in winter try to eat clean fresh food with no salt and gradually I managed to recover my kidney function around 35%from 16%

    Im using all the medication on time try to live stress free life and I’m also taking some herbal medicines(Kidney revival course)for last six month that helps me keeping my kidney function stable.

    You need to see your gp and get the infection sorted firt.more you suffer with this breathing problem you making it worse for your kidneys I reckon.never loose  the hope.talk to Kidney doctor about bicarbonate,vitamin D,calcium supplements/tablets it helps a-lot.

    • mcl1969
      mcl1969 syed28635

      Posted

      Syed thanks for the very interesting insight, we have some similar parallels.

      I've had a lingering cold/sinus problem since October last year. My Nephrologist says this is unconnected with my CKD. I do wonder though if it's some sort of virus that's been undetected and that could possibly have attributed to the relatively fast decline of my kidney function.

      It's recurring and results in massive phlegm on my chest and in my sinuses which is worse at night and the reason for lack of sleep. There were no signs of infection in my blood tests so I wonder exactly what a Doc could actually do to help :-(

      The reverse in your kidney function is quite remarkable and I hope I might achieve the same.

      My sugars are good now so I need to attend to my BP. Losing weight would be good I know but unfortunately I am on 80mg gliclazide for my diabetes and this is not conducive to losing weight from what I have read.

      The NHS is suffering all over the country but generally I have good access to what I need here and so far the treatment has been good without any feeling of being rushed or not cared about. I just need to educate myself a bit more so I can understand it and ask the right questions of my medical team.

      Thanks Syed for your comment.

  • john75639
    john75639 mcl1969

    Posted

    In order to protect your kidneys, you must immediately stop using ibuprofen or aspirin or any nonsteroidal.anti inflammatory drugs.They can damage your kidneys. Your kidney doctor should have told you not to use it.

    Acetaminophen is safe as long as you don't overdose. Read instructions on bottle.

    Have you been checked for sleep apnea, if you snore or fall asleep during the day, that might be your problem. That is what happened to me for several years before I was tested.

    Also, have you had a kidney biopsy, to find out if you have a kidney disorder.

    Twenty five years ago, I had a kidney biopsy and it indicated that I had 2 genetic kidney disorders. The first one is called Minimal Change Disease and the second one is Focal Segmental Glomerulosclerosis. But as I indicated I was told I would eventually have to have haemodialysis, this is the spelling in the UK, but where I live in the US, it is spelled hemodialysis.

    Most people in the US get a kidney transplant after they go on dialysis, very rarely they get one before their kidneys fail.

    If you are a lucky. one to get a kidney, I am happy for you.

    Since I have a circulation problem, I cannot get a kidney. My circulation problem resulted in having. part of my left leg removed, below the knee and all my toes removed on my right foot. My doctors could not find any blood pulses in my left foot and none in my toes on my right foot.

    Every person fears dialysis, but if it will prolong your life, do it. I did. I have no regrets.

    Maybe others on this forum will give you better advice than I gave you.

    Good luck

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