Chronic Kidney Disease Stage 3

Imagine logging on to your online doctors booking system and finding that diagnosis.  Yes that is what happened to me a couple of weeks ago!


I had an initial blood test, for a silly health check and my creatine level was off, so one of the GPs called me and discussed the results.  She asked me to drink a little more, asked about other symptoms, I told her about my previous urinary retention problems and that I was experiencing the odd “retention issue” now and again but patience prevailed, it was just a case of sitting and waiting.  Plus I had a backache type pain near my kidneys but just kept dismissing it.  She said I should get myself checked out but first get the repeat bloods done.  So Monday 7th, was the day of blood test, all done and as I went to leave the nurses office, I was told not to worry and the results would be available on Friday.  The next day I logged onto the online system to book the Drs appointment as agreed with the Dr during our previous call and there in black and white is my diagnosis 😳


I was so shocked I got a fit of the giggles, Andrew just looked at me like I had lost the plot and I just said I refused to call the surgery the next day, as it was my birthday I planned on having a normal day with nothing medically related just for a change.  So I left it until the 10th when I called to speak to someone, but once again they couldn’t help me, as only the Dr who had ordered the blood test could speak to me, and she was now off sick.  So an appointment was booked for the 17th Aug.  Fast forward a week and my phone finally rung at lunchtime that day and this is how the call started.  

Dr “Hello Sarah, how can I help you”

Me “Your calling me about the blood test results”

Dr “What blood test”

Me “Well I’ve already logged onto the online system so I know what it says I have so I need to know what to do next”

Dr “ok let me log in and see what’s going on”

FFS you would have thought a bit of prep before making the call?? So in the end she agreed I needed to be seen, however she couldn’t see me as she had no appointments, so could I call back and speak to reception *facepalm*

I sat and thought for a while on what should I do and decided to go into the surgery and ask nicely for an appointment, take it from there.  I headed in and, the lovely receptionist explained there were no prebookable appointments, call back on Monday, this was Thursday!!

So I asked to see the Practice Manager, enough was enough, I wasn’t willing to lose the plot with this lady she was just doing her job, I took a seat and waited for the big chief after all that’s what he is paid the big bucks for.  The lady called me back to the desk, the manager has agreed to release me an appointment for the next morning, whilst grateful and yes I did take the appointment I still wanted to see the Manager, he wasn’t getting out of it that lightly.

So off she went to explain that Mrs Webb was on the war path, she came back and showed me to his office.  I took a seat and calmly and clearly explained my disappointment in the surgery over the last two weeks.  I explained prior to this I had been a huge advocate for BHC and the Drs and Nurses but the way I had been treated was less than acceptable.  He couldn’t understand why the results were on the screen, why nobody hadn’t called me to discuss them first and that was only my first issue.  I said in the act of compassion just shoving results on a PC when you have no idea what’s going on in people’s lives is tactless.  A call was the least I deserved, he offered me an apology, I know sorry is only a word but an apology is an apology I suppose.

As for the Kidney Disease, he then went an found a Dr and we had a quick discussion, I was firm with them both in that room, explaining that with all the other health issues I have right now Stage 3 is the highest level of Kidney Disease I actually want, we need to stop this in its tracks, I don’t want to get a year down the line and find I’m at Stage 4 due to bad condition management.  

My diagnosis’ so far EDS, PoTs, Gastroparesis with Slow Gut Motility, Chronic Daily Headaches/Migraines, Depression with PTSD, Chronic Fatigue, Chronic Pain, Marfanoid Habitus, Fibromyalgia, Osteopenia, Chronic Anaemia , BPPV, Mast Cell Intolerances, and now Chronic Kidney Disease – Stage 3 it’s just a little too much, like the straw that broke the camels back  😢 

I thanked them both for their time and headed home, also thanking the receptionist as I left the building.

What I had forgotten as I explained all this to Andrew was at 10:30, the very next morning we needed to be in London at the Charing Cross Hospital having my next round of Botox for my headaches.  My stomach just sank, why does my brain do this to me?  He told me not to panic just send my neurologist a message that I may be 15 minutes late and would that he ok?  I pinged the message across and got the thumbs up that it would be fine, I heaved a sigh of relief.  

I had a restless night, uptight about the GPs appointment and I’m not a fan of needles so the 30+ in my head and neck are not a joy, but they mean life can return to some kind of normality in the neurological sense, especially when the pain levels half.

We got to the doctors early but she was running ten minutes late, I got worried we would then hit traffic, I shouldn’t have.  I have never met this GP before, I explained quickly why I was there and she said I needed the referral to Nephrology straight away, I didn’t fall into any of the normal categories for Kidney Disease, so I needed to be seen asap.  She tapped away on her PC and booked me an appointment for the 31st August at my local hospital.  I was so impressed with her, I was not expecting that.  We left the doctors and still made it to Charing Cross in time for my appointment!!

Friday was a good day all in all 

S xx

Battling the DWP


In 2014 I started my first ever claim for PIP that’s Personal Independence Payment for those that don’t know the benefit lingo, it’s a disability payment that has two levels to it, standard and enhanced.  In 2014 I attended the Reading assessment centre and met with an amazing rheumatologist who knew all about Ehlers Danlos Syndrome.   He was empathetic and as I left the centre although it had been an awfully stressful experience, it hadn’t been as bad as others had made out.  My award arrived and I was given an enhanced decision on both mobility and care, which when you look at the questions was fair, the aids, the care Andrew had to provide behind closed doors and the constant escorts as I am no longer able to travel on new journeys alone, meant the gentleman had listened with care and written a detailed report for the DWP to base their decision.

Move forwarded to the end of 2016, my reassessment paperwork arrived and most of it was tick boxes, how had my condition improved, better, worse, the same.  I answered the questions accordingly and sent the form back, we hoped the process would be a fast one, we were desperate for a new car and wanted to get a Motability car but with less than 12 months left on my award they couldn’t help.  As Christmas got close, no sign of an assessment, we got through and into the new year, the old car just played up to the point of falling to pieces, it had reached its death bed.  So that had to be replaced.  We had to get finance for a newer car, but on the plus side the newer car was similar to a Motability car, it was new, light weight, easy to drive and might mean on good days when I was well enough to leave the house I would be able to use it.

It was another two months until I got the letter to explain I would be having a home assessment on the 3rd April.  I was shocked that I had been offered an assessment at home with no fuss but maybe being on enhanced rate, this was standard procedure.  My appointment was at 10:30am so the night before we headed to bed fairly early hoping for a decent nights sleep.

As you can imagine Mrs Stressy Pants, yes me, got next to no rest, I was worried sick how this would pan out, the press had been rife with stories of benefits being cut and poor assessment decisions, so I just felt on the back foot and the assessor hadn’t even arrived.

There was a knock at the door at 9:30am and I panicked, it couldn’t be now, this was too early!! The appointment was for 10:30am, I was at this stage still resting in bed due to pain and fatigue, so hubby ran down and yes of course it was an hour early assessor.  He set her into our front room and then came to get me out of bed, she would sadly just have to wait.  So after helping get me up, dressed in PJs and dressing gown, trying to tie my messy hair up and cleaning my teeth, hubby then got me downstairs, the assessor missed that bit, me bum shuffling down our stairs, I’ve been doing it for years now, I can’t deal with having a stair lift fitted!  We got my crutches and I met her, she was very young, she mentioned her name and job, but I couldn’t tell you who she was.  We sat and started our meeting.  I can’t tell you much of what happened, it’s a blur now, but we went through my form.  All I do know is at the beginning she admitted that she had googled EDS that night to check up on the symptoms etc before coming out to me.  She didn’t ask me about my memory, the last assessor did number games and alphabet checks, nothing like that this time.  She didn’t ask me about any depression and to be fair I forgot, I have terrible “brain fog” I can’t remember anything, so if you don’t ask me a direct question I won’t remember to tell you something.

In fairness I should have just written, pages and pages of lists, but this would have kept her at the house for weeks, however it would have meant I got everything done and thoroughly.  She asked to physically check me which I could do, of sorts but it hurt, but I hide my winces, the pain,  from everyone it’s habit.

After an hour she felt she had done everything she needs and thanked us both, Andrew had sat through it as my witness but I’m not sure he will remember much, he can’t remember what he had for lunch yesterday 😳

A few weeks later the dreaded brown envelope dropped through the letterbox, I sort of knew before I opened it, I had been downgraded from Enhanced to Standard, in their opinion I “have got better”. My chronic debilitating illness has miraculously improved??

Two things that stand out from the reports are, my medications, I state that I require aids not only to remember to take them but also I have them all dispensed via the Chemist as I was getting confused with my tablets, so they are sent to me in Nomad packs, the DWP awarded me zero point saying no aids used or required.  Secondly the DWP claim I am able to plan a new journey to a route I’ve not travelled before.  That is impossible, I can’t even travel 30 miles alone.  My furthest is about two miles up and down our hill and I explained that, I can get to Sainsbury’s/Tesco but no further, again zero points awarded as I can plan a new journey according to them.  The whole report is full of inaccuracies and non truths, it’s hard to read something so wrong.  

So the first step was Mandatory Reconsideration, which we started back in April and the DWP stood by their decision.  The next step is appeal, this means I have to take them to court and fight for my rights, which I am terrified to do, but I have to, they are wrong, if I could travel alone I would do so much more with my life, if I could remember things, like my meds, I would be employable, this is more than just a benefit, this is about the bigger picture.  So we are still waiting for our day in court, despite the DWP’s wish that it was overturned, I just have to go in and try and have a clear less foggy day.  Maybe write lots and lots of notes to help me get through those stressful few hours 

Wish me luck x

S xx

M H Struggles

Anyone who used to visit my blog previously knows I’ve had my dark days, I suffer really badly with cyclical depression.  It’s always around tough “anniversary dates” for me and I know when I can feel these awful clouds gathering.  One particular time is  July which is my fathers birthday, my Dad passed away several years ago and even now at nearly fifty I struggle with his loss.  He died just one week before Christmas, so as you can imagine, I don’t particularly enjoy that time of year either.  A couple of years ago Andrew, my hubby, took the extreme measures of flying us away for the whole of the festive season and to be honest that was the only year depression didn’t hit me hard.


Last month I could feel the spiral, I had experienced one too many awful hospital appointment.  Listening to the same “nagging” doctors, traveling miles and miles, it’s just too exhausting and with a condition like EDS so unrewarding, you come away with no answers, no solutions, ever!!  On this occasion, we both sat in the car out of London because I am always escorted to all my appointments and I could feel the tension in the air.  Before we got home, we started speaking about the appointment and there was a conflict of opinion of what had been said.  I believed the doctor wanted me off my opioid medication and Andrew believed he wanted me off ALL my medications.  The discussion became so heated we just had to stop talking to one another, neither of us would back down.  Over the next few days I just withdrew into myself and felt I couldn’t talk to anyone for fear of repercussions, I slowly began to get weepy and on edge at the slightest thing.  I knew the signs, I needed help, so called my surgery for help.  They gave me the number for “Healthy Minds” and I rang them straight away, this was a huge step for me, I had never felt strong enough to get help before, previously resorting to self harm.

It felt like a weight of my shoulders making that call, to say I needed help because I knew I had MH issues and couldn’t cope alone.  They took my details and called me back a few hours later, for my assessment.  That initial assessment took an hour and she went into a lot of detail, not just about my background but about my current health condition, as well as my general health status.  A few days later she called back with a decision on what services they could offer someone like me.  There were three options, one on one face to face counseling but that could take months maybe a year to happen, one on one telephone counseling again another long waiting list, or the option I chose with the shortest wait time of three months a Long Term Health Condition support group.  This would involve getting to my nearest large town, in my case High Wycombe and sitting down as a group for eight weeks with others suffering with other types of illnesses, not EDS and discussing how it has affected their lives, my assessor explained I wouldn’t necessarily have to speak at every group session, you only get out what you put in.  Yes it’s a long wait but sadly MH services in my local area seem to be lacking for people like me, unless I take an overdose and end up in crisis, I’m not one of the “bad ones” 

So for now I’m managing my MH struggles ok, I’m fighting the demons on a daily basis but honestly nobody knows what goes on behind closed doors and before you post something inane on Facebook or Twitter about “always being their for you and please share with five friends” really think, do people with MH issues pick up the phone and call when they are at their lowest?  I would never call anyone on my friends list just because I had seen that post, in fact I would go out of my way not to, it takes a few seconds to message me privately, that is what people like me need, a little hand to hold in our darkest moments, someone to pass a tissue when we are weeping or to make some tea.  Not to post some stupid Facebook status, that won’t help me, not reach for the pills and booze next time I’m feeling at my lowest ebb.

I will let you know how the group sessions go once they start but that’s another month away.

S xx

EDS follow up

As with my Gastro follow up, I’ve been traveling up and down to the hospital diligently.  It wasn’t until my hospital appointment last week that I got really frustrated, well it started with the copy letter arriving only the week before, that had taken three months since the last appointment in May to turn up and the contents less than impressed me.

I am the type of EDS patient that is aware that life isn’t going to improve really, you only get out what you put in and there is very little point moaning about the condition.  My friends don’t want to hear me griping about it, the nurses at the clinic, the people who I come into Day to day contact, so I generally never tell anyone the truth. “How are you Sarah” ….. “Fine” will be my response or “I’m ok today thank you” …. they don’t need to know that I’m in agony, they don’t need to see me crying, or puffing and blowing because I’m feeling a bit potsie but dear god these are all things I’ve started noticing around me.  So maybe I should tell the truth because by hiding the fact I am not ok, the medical profession have decided they can “discharge” me from their care.

So in the middle of the week, the day before my birthday I headed up to my follow up appointment to discuss, what next and I was already boiling under from the contents of this letter.  The doctor who I was seeing was the doctor who diagnosed me, she is generally lovely and I felt awful that I was about to offload with her all guns blazing but I had really had enough, she had dictated this letter so it was her choice.

She asked how my shoulder was and I explained that apart from the increase of pain, which I could only describe like sciatica down the arm, I at least had a little more movement, I just needed to get back into the pool as I felt weightless excercise may help.  She agreed with me and felt I was taking positive steps in the right direction.  She then asked me about the three week inpatient program as this was something they had been pushing on me for years, I have been reticent to do it, I struggle with separation anxiety and don’t cope away from home and have explained this time and time again, so once again said this but addressed the letter this time.  I told her straight I was upset that she had sent me a letter basically telling me that this would be our last appointment.  So what was I to do next, her answer go to my local hospital!  I explained they couldn’t even spell ehlers danlos syndrome let alone treat it, so how would I be able to trust them, I didn’t have a local rheumatologist and I had been traveling to a Centre of Excellence because I had been led to believe that they would look after me and have my best interests at heart.  She advised me that EDS was only a manageable condition and they had reached the end of the line with me, so her management wanted me discharged.  I told her that was not acceptable, I was not just a number on a file I was a patient with a complex condition, I had six different consultants for all the other issues, Gastro, Neurology, Dental, Cardiology, Shoulder Surgery & ENT , yet the one umbrella consultant wanted to fly away?  How does that work.  She asked how she could help me, by this stage I was very upset and in tears, I carry my medical paperwork file everywhere, just in case.  I slammed it on her desk and told her straight.  Four years ago I was leading a normal life, working, enjoying my hobbies, socializing, generally pain free, now I carry this around to a minimum of six London Hospital appointments a month, thanks to EDS, I have had all sorts of lies written about me, drug addict, mentally ill and by that I mean psychotic, anorexic but I’m still fighting and you dare to just throw me on the scrap heap, your job is to help me, you are the doctor I am the patient ….. I put my trust in you to help me and here I am begging you to help me, at that point the room went silent

She very quietly said sorry, she wouldn’t have sent that letter had she known all this, but Drs don’t listen, they don’t know because they don’t have enough time for us, so at this stage her management can go shove it, she is keeping me on as a patient, we have agreed to try the three week program as a compromise, but if my anxiety gets too much I can just go home, they will let the psychology team be aware.

So it’s time for me to stand up for myself in all aspects of my care, I am truly fed up of being the EDS patient that just gets walked all over because I am meek and mild, because I refuse to put up a fight in case they think any less of me.  I don’t really care what they think of me, if I want to survive I’ve got to be able to fight for my own rights 

Gastro Update

The last ten months have seen my weight fluctuate up and down, anything from 48 – 53 kgs, it means I become very fixated on the weighing scales in the bathroom.  At one recent hospital visit I challenged their “weigh in” as I had been checked only a week previously and was 50 kgs and suddenly I was 2.6 kgs heavier, over that week I had been sicker, eaten less and been feeling decidedly poorly, so how could I gain weight?  Their answer, every doctors or hospital scales is calibrated differently so the only constant would really be my home weight.  So I am now trying to check myself every week, to get out of the habit of every day checks, I remove all my clothes, it will be a Monday morning at the same time.  If I keep a weight diary then I know what direction I am going in, this appears to be the only way to track MY weight accurately.

I still have two hospitals looking after my care, my local hospital King Edward VII, under Wexham Park Trust and the Royal London Hospital, this is where I am under Prof Aziz’s care.  Local do my day to day care and the London are for my expert advice as locally they have no EDS or Gastroparesis knowledge.

I’ve been trying to avoid tube feeding for the last six months, just as I really don’t wish to go down that invasive route, until it really is the final option.  Ten days ago I went to the London for my most recent follow up and it was decided by the SHO that I saw that in his opinion most of my issues “could possibly be caused” by opioid use, therefore he would like to see me reduce and eventually stop my pain medication to see if the motility of the gut returned.  Now this is all well and good but then they give no magic solution on how an EDS patient is meant to live in pain, he kept saying how the pain receptors would adjust, my body had just adjusted to live with maximum amounts of pain relief, believe me I am probably one of those patients who takes a small amount of pain killers until I need it for breakthrough pain, then I “top up” my painkillers.  So I listened to what he said, I did ask what else he suggested, as it can’t all just be pain killers causing this problem, but on reflection, I actually got ignored.  So I came home that day really distressed and of the mindset that I would have to cut my pain relief to prove a point.  Then on the 3rd August I saw my local consultant, they have been in discussion about fitting a gastrojejunostomy, this would help speed up the motility of my gut.  I explained what the London had advised about pain relief and he made the notes, I also told him that the London advised against the GJ at this stage but I asked if there was an EDS or Gastroparesis specialist within my hospital trust.  Since 2014 I had seen 6 various specialist none of which had a clue about my condition, he began to get a little flustered and my questioning him.  I explained that I was the patient, putting my trust in them the doctors, asking for help, but they weren’t helping, they were just delaying my recovery.  I needed help and urgently.  So I asked to be sent to someone who know about EDS, be it at another hospital or a different doctor.

I got the usual “well you are a complex case”  and I just said well I am sorry that is not good enough this time.  I have had to learn about my condition over the last three years, I would have thought, each doctor who had come into contact with me would have had the time to read up about Ehlers-Danlos, he then decided he would return me to my original Consultant who could decide what to do with me next.

I have decided I am fed up of sitting back and being walked all over by the medical profession, well not just by them, by everyone, it is time for me to stand up and say NO I want full and fair treatment, I deserve it, I have a right to it, if you can provide it, find me someone who can.

So my little victory is standing up to my Gastro doctor and saying no more,  I refuse to be pushed around from doctor to doctor because you can’t be bothered to understand EDS.  They should remember their hippocratic oath

“I will not be ashamed to say “I know not” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery”

My Shoulder

So ten months ago I told you all about this shoulder and how I had been to the Stanmore for another Fluro guided injection at the advice of my surgeon, well that gave me no improvement and I went on to see the best EDS physio, with absolutely no success.  I have also told you about the “hospital short stay” in which they passed a load of nerve pulses into the shoulder to kill the nerves in an attempt to stop the pain receptors.  Guess what another failed attempt.  So by the end of the year it was decided that surgery really was the only option, my shoulder was stuck firm and I had such a limited range of movement it would need to be checked while I was unconscious.

In April this year my date came through and I was nervous as hell, the thought of invasive treatment scared me whitless but I really wanted to use my arm again, two years with only one full workable arm was enough now.  Then I got the call to say that my surgeon had been involved in an accident and the surgery would be postponed for eight weeks, so late June I was heading up to the Stanmore for my procedure.

I’ve always been anxious about procedures mainly because my local hospital is so bloody atrocious at how they deal with patients and their relatives, at booking in they normally expect the relative to dump the patient and just go away, this is where my panic sets off and I go into a tail spin.  So imagine my shock when this hospital does the exact opposite, at no stage did they usher Andrew away from me, even as they wheeled me to theatre they let Andrew walk with me, they let him come to the anaesthetic room and they could see I was calmer with his presence.  I have NEVER had this, I have always been stressed to the point where they have needed to knock me out due to heart rates bordering the 200 BPMs, just through fear.  Once they had given me the pre-med and I was woozy and calm, he left and I was in a “happy” i.e. pissed place.


Post surgery I came round to my arm in the largest blue foam sling, hanging upright, “oooouch” I was not comfortable, they finally got me back to the ward, by which time I found out I had been gone two and a half hours, for what was meant to be a twenty minute surgery.  We waited patiently for the surgeon and once he appeared he explained what had gone wrong (or right)  Basically they had knocked me out too soon, so had to bring me back round, they needed to manipulate my shoulder to find out range of movement and discovered it was stuck, at the point it was stuck if he had forced it any further he would have fractured my arm so he stopped.  They had then put me back into full anaesthesia and started the operation, with two keyholes, front and back they looked into the joint and found that there was a lot of war tissue and fibrous bands that had healed over the shoulder joint following the injury at Wheelchair Basketball two years previously.  He commented he had never seen this type of injury in an EDSer before, so he had cut away all the bands and fibrous tissue, and been able to give me a better range of movement.  By the time surgery was complete I was able to move my arm fully up and down and to about 70 degrees away from my body.  All in all a success, but he had worked very hard, Mr Majed had met me in the clinic at 7am that morning it was now 8pm, he commented that he would see me the next morning to see how I was doing.

After a terrible night of pain and no sleep, I was able to return home, I am now in the physio stages of my rehab.  The good/bad news is I am back to being hyper mobile in my shoulder I have sublaxed fully it twice since the surgery, and three times partially, partial is when you feel it going out and stop yourself continuing the movement, so slide the joint back in.  Yes it is as painful as it sounds.  I saw my phsyio last week and the plan is to get back in the swimming pool to build the muscle in that shoulder to try and stop the sublax.  The main issue is the shoulder head sits permanently out of joint and is quite happy like that, but i need to train it to sit in joint.

So my shoulder is currently a work in progress I need to work it hard, I will keep you up to speed on how it is doing

S x

Long Time No See

Apologies for my absence, a mixture of cognitive issues, pain and fatigue have meant that just being able to function have taken precedence over the blog.  However in a weird way I have missed the cathartic nature that is getting all the “crap” out of my head and onto the keyboard.  It wasn’t until last week when I was really struggling emotionally and went to see a friend and he commented about my blog and that it was really sad that I didn’t do it anymore.  So I felt it was time to try and make a comeback.  Now the blog posts may be sporadic, I can’t promise they will be a daily feature on your timeline, I will try and write as often as my brain and pain levels will allow me, however, I do have enough material to keep me going for about six months.   After all it is ten months since I last wrote you a blog post and so much has happened in that time.

For now I can tell you that I am managing my condition as well as I can, I am having approximately six hospital appointments a month with various specialties, along with multiple GP and nurse appointments at my doctors surgery, as always I try and keep smiling, as my motto is life is too short but it does get hard at times and my MH has taken a knock and I will address that in a future blog post (in more detail)  Next week is my 49th birthday and yes age is a number but I am slightly dreading it, only one more year until the big 5-0.

I’ve also had to be re-assessed for my PIP and the very nature of that has caused an abnormal amount of stress, needless to say it hasn’t gone to plan and again there will be more in the blog about that.

So I can only thank you for your patience, for sitting waiting for another blog post to appear one day,  EDS is one of those conditions that you have to take the rough with the smooth and at the moment, things have been pretty ropey but I need to use my strength of character to fight this illness because nobody else will do it for me.


So welcome back to Living With EDS UK, feel free to comment, have your say and let me know what you think

 

Sarah xx