Three and a Half Years On and 8 Weeks Later Still Feeling Tired

I had a blood test just one week following my infusion of Cosmofer on the morning when I have my injection of EPO. The week following that, I was referred to an Endocrinologist in the diabetics department. She reviewed my blood test results and informed me that I was still anaemic. This confirmed what I had already suspected as I am still very tired all the time . What on earth is going I ask myself? I am following all the correct dietary guidelines, I take my medication as regular as clockwork keeping on top of my glucose control and receiving the best treatment any hospital can offer.

I had more bloods taken following my appointment with this doctor, who is looking at vitamin D, B and B2 levels with a retest of my Thyroid function.

All I can do now is wait to see what happens next and where I go from here. Having said that, I have just checked my results on renal patient view and it’s not looking good as the potassium level in my blood stream has risen from a concerning 5.5 to a dangerous 5.9 with creatinine rising dramatically from 195 to 256 with an opposite fall of eGfr from 32% to 23%.

I think a serious phone call to someone is probably in order as I have switched suddenly from the bottom end of stage 3 renal failure towards the lower side of stage 4 renal failure. This leads me to believe that there is something somewhat amiss with my Sydney! Oh I’m sorry I have never mentioned this before but that’s my Grafted Kidneys name behind which lies another Story for another day. In the meantime I’ll have to be pro active and at least seek some advice from ward H3. More for reassurance that I’m likely to survive till morning when the Transplant team are in.

Time is ticking by while I await the news from the staff on H3 as I am currently writing my blog at 25 past 2 in the morning having awoken from a deep sleep I started at 5pm yesterday.

Okey Dokey the time is now 02:40 and I have had a call back from the nurses on H3 to let me know that the on-call Doctor has been requested to come and look at my notes and blood results the time for the call could take up to an hour as most hospitals rely on one doctor to cover several disciplines during the night, from geriatric through the whole spectrum of conditions via A & E and beyond. So I’ll take th opportunity to grab some proper sleep till he calls back to tell me that I must get to my nearest A&E for dextrose and insulin infusion treatment for Hyperkaleamia, a persistent beggar of a problem that keeps rearing its ugly head; whoopy doo!

I’ve just realised, not that I’m a superstitious person but it is actually Friday 13th of December (Bah and Humbug!).

OK it’s 03:10 and the on call Doctor has very kindly contacted me and sorted out a plan of action. She will contact the A&E department at my local hospital to notify them that I will be driving there straight away. I will have a set of repeat bloods taken to see if there is an increasing trend of potassium and take it from there, as in give me a dextrose and insulin infusion of the correct dosage for the level to be treated. Signing off now as I have an appointment to go to.

I will update later. Watch this space!

Ok. It’s now 03:54 and I’m in a treatment bay at my local A&E.

Having provided a water sample I had my BP and temperature taken with the results of 111/75 and 36.9 degrees C respectively I had an ECG taken. The male nurse taking care of me went through the ECG reading with me explaining the different points along the output waveforms. He highlighted the ‘T’ points, which if high can explain any Hyperkalaemia. Mine were indeed slighted tented which can be indicative of the condition. However when shown to a doctor, the doctor decided to carry on and have bloods taken although he was doubtful that I had a raised potassium level.

An initial attempt at inserting a canular in my right forearm was aborted as no blood could be drawn. The second attempt went well and three samples taken. So now the wait begins.

In the meantime I have very kindly been given a cup of tea to be going on with at 04:34am. Although the tea tasted ok it was too hot to drink at this time so left for half an hour to cool. 04:55 am and I’ve just finished what must have been the nicest cup of tea I’ve had in a hospital in a long time. You can tell I’m bored.

05:43 am I was visited by an F1 ( Junior Doctor) who went through my blood test and ECG results. Potassium = 4.8, Urea = 31 and a Creatinine Level of 193. So apart from the Urea and Creatinine I am safe from the immediate possibility of a heart attack as the Potassium is within normal parameters.

One concern I do have is that the F1 asked me which kidney I had had transplanted? Oh dear! But hey she was straight out of med school and everyone has to learn. What better time than 6 in the morning? However she did confirm what the earlier blood tests had shown that I was indeed aneamic, hence the tiredness.

Having gone back to her registrar and conversed with the on call doctor at Salford, I was given the all clear to go home. Phew!

I went straight to bed, where I hit the pillow and woke up at 9pm refreshed and most importantly alive. However the over tiredness continues for now, but I can live with that till I can talk to my renal team. Maybe Friday 13th isn’t anything to be worried about after all?


4 thoughts on “Three and a Half Years On and 8 Weeks Later Still Feeling Tired

  • I hope things improve for you quickly but thanks for taking the time to post such a detailed account of your problems. You have certainly put my problems into perspective. Good luck and best wishes.

  • Hi friends I also feel tired especially after dialysis and I suffer from constipation. I take senna but they don’t do the job and I loose a lot of sleep specially when I am starting work early morning and dialysis. I feel I it’s. Race against time however early I get up I seem to get late. Lately I’m getting dizzy. Spells they just come on on Saturday while I was shopping My head just started to spin it didn’t last long but I noticed repeating more lately.

    • Hi,

      Before commenting on your situation, I must point out that the suggestions I am going to put to you are only helpful tips from an experienced patient and should not be taken as specific medical advice to get you back on track and you still may need to seek help from one of the disciplines in your renal team to tweak things slightly.

      So to continue:from your description it sounds like your on peritoneal dialysis overnight. If this is the case, all methods of PD whether CAPD manual bag exchanges or APD exchanges using a machine overnight do cause constipation. This is because fluid held in your peritoneum just below your tummy, drawing fluid and toxins via your peritoneal wall also draws fluid from your bowel and any other bits and pieces that come into contact with the dialysis fluid.

      Secondly, dialysis reduces the amount of fluid that your heart has to pump around your body thereby lowering your blood pressure to a more acceptable level or lower if you are not maintaining a reasonable fluid balance.

      Having CKD itself causes tiredness, weakness and lethargy which slows you down both physically and mentally.

      Having explained this what I can tell you is: A. you may need to increase your fluid intake and B. make slight changes to your diet, but seek advice from your renal dietician as certain foods contain a lot of water either naturally or when boiled, such as melon in the first instance and secondly rice and pasta.

      While Senna is designed to act as a softener it can only work with the right amount of fluid mixed with it.

      The dizziness you are experiencing can be caused when your blood pressure is too low, known as hypotension (Too high is known as hypertension). When the fluid levels in your body are a bit on the low side then sudden movements in particular standing up too quickly causes any remaining fluid to make such a noticable drop in your upper body that you become dizzy, so changes in your posture can cause sudden changes increasing or lowering blood pressure. This is known as postural hypertension or what you are experiencing, postural hypotension. Always carry a small bottle of water with you to sip on during the day or to use when having these episodes just to help bring your blood pressure back to an acceptable level. But seek medical advice as you may also be taking medication to help control your blood pressure. These can be a mixture of water tablets and or other blood pressure tablets. If you are taking both types of medication you usually take them all at once. As a simple tip, you should always take your water tablets in the morning, but you can take your other blood pressure medication at night which will still control your blood pressure but cut down on the dizzy spells during the day. Again, and I can’t stress this enough take medical advice before doing so as certain blood pressure medication has to be taken at specific times of the day.

      Getting back to your problem with constipation. It is a very common problem with PD and for PD to work correctly your bowels must be loose so getting your fluid input level right is important so please seek advice from your renal team about this.

      Over tiredness can be due to low iron levels. A simple blood test will determine this and it is treatable so do talk to your renal team about this and all of the items discussed in this reply but certainly try an increase of fluid intake till you start to overcome the dryness in the bowel. This will then give you better dialysis and just as important, a better nights sleep.

      I look forward to hearing how you get on, so keep us posted.

      best wishes.

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