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My harrowing patient journey


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#1 elric

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Posted 28 November 2017 - 06:29 pm

Greetings all I’m new here.

This is the first time I have been admitted to hospital, more harrowing as this was a traumatic experience and not due to an illness or self-induced.

I went in for a rigid cystoscopy under general anaesthesia as a day case on Wednesday 25/10/17. This was part of a work-up to rule out urological cancer.

At home I had had haematuria with clots.  By evening time, I had gone into acute urinary retention (AUR). 

I called an ambulance and was taken to A/E where I was constantly rushing to the toilet but could not void. I had to wait 2 hours for 3 catheter attempts and pain relief. I was acutely aware that this was a medical emergency that can lead to urine infections, bladder damage, kidney damage and pyelonephritis.  

 

On the ward I was in constant pain for 2 days and nights due to the recent trauma and hourly bladder washouts. 2 days later my urine was clear so the catheter was removed and I was able to pass urine. All I was told was that I had had a rare complication but no possible cause mentioned and I was discharged without a follow-up or advice on short- and long-term effects, after care and prognosis.

 

4 days later the haematuria and clots returned and again I went into AUR.                    I felt so angry, frustrated, frightened of as I did not want to wait 2 hours so I had to go to another A/E. A larger bore catheter was inserted and I had constant bladder washouts with constant painful bladder and urethral spasms, needing oramorph. 

 

During my stay pain relief was inadequate and NOT patient-centred. 

At times I felt like a prisoner trapped by my extreme pain and thoughts about how my life has been seriously disrupted and felt suicidal; however did not follow through as I thought how devastated my mother would be.

I was discharged with a urethral catheter.

Every time I felt pain or the sensation of the catheter inside me I felt re-traumatized.

I also get frustrated and angry about what led to all this and that it has not let me go to 3 events I was looking forward to.

11 days later I had a constant urethral ache with intermittent strong urethral spasms with severe dysuria. This was accompanied with light headedness and chills.

I planned on booking an urgent GP appointment the next morning. However at 4am, I felt the urge to defecate. I had some loose stool, cold sweats  and felt that I would lose consciousness.  

I was ambivalent about living or dying and due to the ordeal I had suffered to date felt that I should “let nature take it’s course” and just fall. However I then thought how hurt my mother would be, so I called for an ambulance.  

In A/E my blood pressure stayed at 60 systolic despite A/E pushing IV fluids. 

I felt “drunk” but was able to make coherent conversations and stand up without collapsing. My circulation was intact and although my respiratory rate was fast,          I did not have ARDS.

I refused another catheter and said that I would urinate in bottles and my urine could be measured.

As my blood pressure was still not rising, I was taken to HDU for noradrenaline. 

I had deranged clotting, raised ggt, glucose, procalcitonin and troponin without chest pain. My Hb was low. I was there for 2 days, then in a HDU step-down ward and then a urology ward. 

A CT abdomen and pelvis which showed a few small prostate abscesses,

a rare cause of sepsis and normally seen in the elderly.

A (TRUS) transrectal US-guided aspiration was done and pus sent to microbiology.

I was then started on IV antibiotics and switched to oral antibiotics.

 My recovery was hindered due to the lack of communication from staff with regards to sepsis, updates on medication and blood results. As I was concerned I spent my recovery time on the internet looking for answers. 

I asked for a meeting with either the SpR or consultant re: sepsis, however was advised that if I had any questions I can mention them at the ward round. 

Another issue was that my follow-up is in 3 months.

I was unhappy that I had to prompt answers and that the team did not have any FAQs on hand. what helped somewhat was an ICU nurse seeing me, albeit unexpected on one occasion in ward stay.

I was discharged a week after admission.

Since I have been home, I have felt: 

Bone tired and sleepy during the day.

Often “spaced out”- more than I would with dihydrocodeine.

Poor concentration and at times having to think simple tasks through before doing them.

Lightheaded, despite drinking at least 2 liters of water and getting up slowly.

Short of breath walking short distances.,often having to stop for a breather.

Palpitations without chest pain or signs and symptoms of acute cardiac nature.

Nigh daily nausea, nigh daily dyspepsia, occasional loss of appetite, 3-4 bowel motions/day (normally formed stool). No abdominal pain or vomiting.  

Intermittent anal pain despite taking regular analgesia (DHC, Paracetamol and Ibuprofen).

I had a bout of meralgia paresthetica last year. Since 25/10 this has been present daily and worse at night. This consists of a constant ache with burning and occasional electric shock-like pain in the outer thigh. Accompanied with numbness.

The quandary is standing is good for prostatitis pain but worsens meralgia pain.

Increased anxiety and depression due to what I have been through. 

I cry more and often, at times thinking about what I have been through and at times for no reason.

I am not sure how I will react if I have to go to hospital again, more so any A/E department.

I feel a sense of numbness in all aspects of my life.

I am worried if I will get any infection, even a cold. I am acutely aware that I will need to monitor how I am feeling as well as my blood pressure etc.

Due to the meralgia pain I saw my GP yesterday. We agreed on Duloxetine.

This helps reduce urinary incontinence, meralgia pain and also anxiety and depression.

 Overall I felt traumatized and frightened for my life in a place that is meant to be “safe for patients”. These feelings were increased as I was still under the influence of the general anaesthesia. Since 27/10/17 I have had 6 tubes in my urethra (2 large bore).  All this feels like many major life-changing events in one, the sepsis being the icing on the cake!

To date I still get intermittent pain and have had to be signed off sick since 25/10/17.

Of note is that the investigations done so far showed results that could be markers of infertility. Now with all the multiple instrumentations, I am concerned that I will not be able to get pain-free sustained erections as I would like to have children.

To date I have not received any answers to my questions and I feel like the urology team in my first admission are not interested in helping me understand. 

My brother, a surgeon, says “just move on, you can’t change anything”. I find it too hard to do.

Having written this has helped somewhat cathartically.

I am aware that this is in the past but I am still in the dark about a lot of things.

I spoke to someone from Sepsis trust and was greatly reassured by him.

Thank you for spending your valuable time reading this.  

I wish you all the best in your recovery.

 



#2 red squirrel

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Posted 03 December 2017 - 09:33 pm

hello elric, really sorry to read of your recent experience and i hope you may be improving ,although you mention its in the past its actually only 5 weeks or so since the procedure  a,rigid cysto under a g/a is no joke and the uretha is a sensitive bit of kit,im not surprised at many of the symtoms your experiencing ,Normally rigid cystos under g/a are not performed in increments of less than 3 months to enable recovery,so try not to worry about the lenth of time this feels like its taking,It sounds like you are well read on this so continue to do the things that can aid recovery,drink plenty of water,steer clear of tea and coffee, pomegranate is a good substitute,move arround as much as you are able,gentle walks at the start,a good relationship with your gp is also helpfull,if the pain continues they may suggest different pain meds with an anti inflammatory.

The pain will subside although it may not feel like that right now,

You dont mention if a biopsy was taken or what the results were so i,m hoping that the major cause of concern has been ruled out.

Recovery from sepsis can be hard enough without the complication of an invasive procedure,

be good to yourself.take the time you need,and be sepsis aware.

i,m glad you have felt some reasurance from speaking to someone from the trust,i know the times i have spoken to them they have been most helpful.we also have some sepsis nurses who post on here also,there are sepsis support groups in some regions might be worth finding out if there is one near you,when you feel able to travel.

 

 

kind regards red


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#3 elric

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Posted 11 December 2017 - 06:42 pm

Hi there thanks for the reply. I've been sleeping a lot when not in pain. Am slowly improving and have seen my GP twice and he suggested that he see me frequently and is, thank God, well versed on sepsis and PSS. Thanks for your advice too. 

No biopsy was taken.

The UK Sepsis trust announced a group due to start in London in January and i've signed up.

 

kr,

 

Nasir



#4 red squirrel

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Posted 15 December 2017 - 12:10 pm

Thats great news Nasir, an understanding  and informed  gp on sepsis and PSS is a massive plus,and no biopsy is also great news.

wishing you recovery

 

kind regards red






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