Hello lovelies, how are you all?
I’m back today with another Health Update for you all. I do one of these every couple of months as my main important hospital appointments build up so I can let you guys in on what’s been happening recently hospital wise and I can give you an update on how I am feeling physically/mentally.
These updates may seem to you that I don’t often get positive news on my health, which at this moment in time I don’t seem to be unfortunately BUT I feel like I want to continue sharing my journey with you through the highest highs and the lowest lows. And currently I’m going through the lows of my journey.
Since the last update, things haven’t been great to say the least. I’ve been back and forth hospital appointments like a yoyo, sometimes I don’t have time to breathe before I’m carted off to the next one. it’s unbelievable how many we have to fit into our weekly planner, some appointments I come out wondering why I bothered even attending whilst others I thank for being so good. Anyway, I’m not going to ramble on, here’s an update on the most recent appointments/trauma;
30th March – Neurology Appointment
Now I do apologise as I did promise that I was going to let you know the results of the MRI/MRA Scan sooner but firstly we had to digested the results and then life just run away with us if I’m honest. The MRI/MRA Scan came back with three different things wrong within my brain all which can be implementing my illnesses.
- Firstly, when my neurologist was going over old scans, he noticed in my November 2016 scan that I had Arnold Chairi Malformation but we didn’t find this out until late January, this is why he arranged for more scans in March. “Arnold Chairi is where the lower part of the brain pushes down into the spinal canal, this can put pressure on the brain stem, spinal cord and obstruct the flow of fluid.” My neurologist explained to us that Arnold Chairi can continue to push further out the base of the skull or remain stable, unfortunately my recent MRI revealed that my brain has pushed further out the base of my skull by about 3-4cm which is huge amount considering to be diagnosed with Arnold Chairi it has to be 7cm out the base of the skull. For Arnold Chairi treatment options are very limited, the only option is surgery which we spoke about but right now have said no too. Surgery isn’t a 100% outcome, it could possibly make things ten times which is an opinion I’m not willing to take right now so we’ve just got to keep an eye on the Arnold Chairi and wether it continues to push further or not.
- Secondly, the MRI found that on the right side of my brain I have multiple lesions which have grown. They have grown over 6 months and these lesions are all different sizes. These lesions are the cause of my migraines, after many months of wondering why I’m suffering such agonising pain I finally got my answer. I just wish it was a better one. Unfortunately there is no way of treating these lesions it’s just hoping they dont continue to grow in size and continue to spread. I’ve been suffering from this excruciatingly painful migraine every second of every day for nearly a year now, it’s interfering massively with my daily life and draining me physically/mentally. I’ve started the strongest form of migraine treatment which is a tablet, which I’m currently the second highest dose on and let’s just say some days are better then others with my migraine since being on this medication!
- Finally, the scan showed that the pressure inside my brain (intracranial pressure) had increased (ICP) quite a lot meaning I’m now at a high risk of a stroke.
April 5th – Gynaecology Appointment
Back in March, I had a MRI scan on my pelvis to check my ovaries to see if anymore cysts had grown and how my polycystic ovarian syndrome (PCOS) was doing. When seeing my Gyne, we was all shocked to hear that my scan came back clear. Confused and not knowing what to say, my Gyne told me that this news can be normal to hear with PCOS, the cysts can come and go but unfortunately this doesn’t help when explaining the multiple symptoms I’ve been experiencing.
All my life I’ve had problems with my periods, ever since I started them. they’ve always been so heavy and uncomfortable to the point even doctors were concerned with the amount I was loosing each month. So over the years I’ve tried every single hormone pill you can imagine to try and slow my periods, to try and regulate them or stop them all together so I can get some relief but nothing has worked… until last year. Last year I was started on a pill which you take to stop your periods all together, it helped unbelievably well for the first few months but for the last 5 months I’ve been having horrible troubles again. Worse then ever before. Let’s just say I was on my period for nearly 4 months, non stop, the heaviest it had ever been and the pains were unreal. Then after the 16th week it stopped? After having a 4 month period, I then went on to having a period every two weeks for two days heavily then I’d stop. So I was praying my Gyne would give me an answer when seeing her but unfortunately this wasn’t the case, as you can imagine over the years I’ve demolished all the other treatment options meaning the only option left for me is the Marina Coil. As for my treatment I’m on right now, it’s becoming use to my body quickly therefore it’s not working as effectively as it was meaning in time it won’t be effective at all. My Gyne has given me the option of staying either on this treatment until it becomes ineffective OR get the Marina Coil placed – right now I’m staying on my treatment.
April 13th – Cardiology Appointment
Cardiologies appointment wasn’t too bad, it was pretty short and sweet. my consultant was saying that my autonomic nervous system has completely shut down, there’s no reason for this to happen sometimes it just does apparently. Because of my autonomic nervous system shutting down, I’ve been diagnosed with Dysautonomia and as a result for this I’ve been diagnosed with PoTS. This is why my heart rate went unbelievably high and I ended up in ICU back in January this year – this was one of the scariest times of my life! My consultant is pleased that the Beta Blockers I’m on have brought my heart rate down to a “happier” level but it’s still higher than it should be so I’m having a heart monitor fitted on June 8th over night so they can check the Rythum during the day and night.
April 20th – Urology Nurses Appointment
After my urology appointment in march, I went to see my catheter nurse in Haywards Heath Hospital (Princess Royal) to see what ideas they had for self-catheterising sticks to hopefully limit infections and help with emptying my bladder properly.
Straight away my nurse had a new catheter stick waiting for me to try, so I obviously tried out the stick hoping to find it comfortable in the way it emptied my bladder etc but I didn’t, straight away I noticed the catheter was quite hard which obviously isn’t something you want. Still, I wanted to continue with these as apparently these are the best self-catheter sticks. My nurse also mentioned it was a good idea to start the antibiotic that I take everyday, so I did.
April 22nd – Saturday Night & Sunday Day/Night
I’d been using this stick for two days now, still finding it not the most comfortable but what self-catheterising stick is? Anyway, whilst placing the catheter I caused myself a trauma. For those of you who don’t know trauma is damage to the urethra, like a cut etc. Let’s just say I let out a small scream because I’d never felt pain like this before. I had to quickly remove the catheter in which blood quickly followed. Throughout the rest of the night I was crippled by a throbbing pain, nothing that painkillers would touch.
Sunday morning I was still crippled by this trobbing pain I was getting but I had to try and catheterise otherwise I’d go retention quickly. So obviously as I tried to place the catheter I instantly felt this almighty pain come over me, it was horrific. It was a pain I couldn’t even begin to describe and I’m not someone whose very often phased by pain as I’m crippled by it everyday with my illnesses so I knew this was bad. Every time I would hit the trauma blood just came out and this happened each time I selfcatherised that day.
April 24th – GP Appointment
My mum booked a doctors appointment as she was worried, just like I was. Catheterising was agonisingly painful and blood was coming out each time so we knew a doctor needed to look.
I saw a femal doctor who was so lovely and made me feel very comfortable. She took a urine sample which instantly came back badly infected so she put me on antibiotics so that it didn’t spread any further into my trauma. She then wanted to try to see if she could see the actual trauma itself but unfortunately I was that swollen outside of the urethra that she couldn’t see inside at all. Although, she could see the blood coming out so she wanted to ring my Urology Nurse, inform them of the trauma and get their advice ASAP. as there wasn’t much the doctors could do on my behalf. The doctor also told my mum to contact the nurse so that if one got through quicker we’d get advice sooner.
After a fair few phonecalls that day, my mum finally got through to my Urology Nurses to let them know of my Trauma. They were unbelievably surprised that I had done it with this catheter as this was the one that no one usually ever does traumas with but it obviously happens. Furthermore, they told me to keep the trauma as dry as I possibly can and use no creams especially numbing creams as this can make things worse. To stop the antibiotic they told me to take back on the 20th and to take the new antibiotics I’m on now as I shouldn’t have ever got an infection with that antibiotic anyway. And to go see them on the 16th of May to get it checked out. I know, we wanted it to be sooner but their rushed off their feet so we’re thankful we got this appointment!
The Next Week –
Over the next week, things just continued to decline. With the thought of a catheter even going near me giving me nightmares, I knew I had to try and somehow push past the pain to release my urine as I wasn’t going for hours on end as the pain was just unbareable.
Throughout the week I had began to notice it wasn’t just blood I was loosing from my urethra, (TMI APOLOGISES) it was also green discharge, white discharge and I also noticed that the swelling was worsening and the pain was just unbareable.
2nd May – GP Appointment
After an awful week we made another appointment to go back to the doctors as the trauma wasn’t getting any better like we was hoping. Yet again we saw another femal doctor who was unbelievably lovely and made me feel so comfortable.
After doing another urine test we found that, that came back clear so we knew that the antibiotics had worked which was good, so when she had a look she saw the discharge and blood and decided that taking swabs would be a good idea so we could see if any bugs grew. (which results came back two days later and showed frush which I had antibiotics for). The doctor could see that the trauma was bad and basically told us to go up to A&E to have a catheter fitted right away so that I didn’t have to go through the pain of selfcatheterising every day, also, so that the trauma could heal whilst the catheter was in and nothing was hitting it etc.
That day, I was going to meet my best friend Emma for the first time, she lives in Bristol so obviously I wasn’t going to miss out on the chance to give her a massive hug. It was the most surreal evening spent with Emma, after three years of talking about this day – it finally came and it was incredible. Emma has a blog, please go check it out; http://emmawebber98.wixsite.com/emmajay
3rd May – A&E
This hospital trip was the first of many. Thankfully the waiting time to see the triage nurse wasn’t long and we saw her within the hour of getting there (which isn’t usual). We started speaking about the crippling pain I’ve been in with this trauma and everything that’s come alongside it. Whilst we was in with the triage nurse, the A&E doctor actually joined us so after filling her in also, I straight away told them both about what the my GP had mention about having a catheter placement whilst the trauma healed and they both slightly agreed but the doctor believed it would be better if she spoke with the Urology department in Haywards Heath beforehand incase they had a different idea. so after the triage took my observations, she told us to wait outside until the doctor had rung Urology.
It took a long while for Urology to answer that’s for sure but they did agree that a catheter was the right way to go to allow the trauma to heal. Let’s just say, it was a rather painful placement. Although, what caught our eye was once the placement was done was the amount of (TMI APOLOGISES) blood and clots which flooded into the catheter bag alongside the urine. The doctor said that this shows that the trauma was much worse then what everyone thought it was in the first place.
9th May – A&E
yes, myself and my mum were dragged back up to A&E after ringing Urology telling them that my catheter wasn’t working properly. I’ve had catheters before so luckily I know the signs when my catheters working/when it’s not and unfortunately after literally a week, this catheter wasn’t working.
After seeing the triage nurse and explaing to her why I knew it wasn’t working properly (as she had no training on catheters at all) she sent us outside to the waiting room to wait for the doctor. The wait for the doctor was about 4 hours, finally when we did get to see the doctor he decided to change my catheter to a bigger tube (from a 14fr to a 16fr) so that it can drain easier and hopefully clots that are still continuing to come from my trauma heavily can not block the tubing as easily.
14th May – A&E
Oh yes, back again! We woke up Sunday morning and noticed that the catheter wasn’t draining into the bag properly. We changed it to a different bag, done all the care for the catheter like we’re meant to and waited a few hours to see if this made any difference but unfortunately it didn’t. Plus I was in absolute agony with these spasms and stomach/back pains. I got similar spasms the last time I had my catheter back in 2015 but this time I can’t even sit back in my chair so I knew a A&E visit was in order.
It was heaving up in A&E so we knew we was in for a long night. We saw the triage nurse who yet again had no idea about catheters so she just looked at us and told us to wait to see a nurse who will do a urine & blood test on me before seeing the doctor – which we done. When we finally got to see the doctor he told me my urine came back clear (which it should do as I’m on antibiotics) and my bloods came back that my kidney functions worsened but their not too worried right now as my urologist will keep an eye on that. He then went on to say that he spoke to my urologists before and they said not to take out my catheter until I see my Urology Nurses Tuesday, so instead do a huge washout of my catheter and see if that helps it drain again instead of changing it.
So after being taken to a ward, I had a wash out. This is quite possibly the weirdest feeling prodedure I’ve had done. They syringe 50mls of water into your bladder through your catheter then with a empty syringe they pull it back out again – this pulls out any gunk in your bladder which shouldn’t be there. It turns out a huge blood clot was clogging my catheter followed by tons of little ones so it’s a good job they done the wash out. The pressure release felt so good afterwards! After doing the washout a few times until the syringe water run clear, they attached a catheter bag to me and waited for me to pee before I could leave.
16th May – Urology Nurses Appointment
This appointment was for the nurses to check out the trauma but actually it didn’t quite end up being just that appointment. My nurses didn’t even get told by the Urology consultants that I had a catheter in so we had to explain everything that’s been going on over the last couple of weeks! I explained to the nurses how worried I was about the amount of blood and blood clots I was still continuing to loose and it was then I was told that the catheter couldn’t come out at all whilst I was loosing blood clots like I am otherwise they will just build up in my bladder. My selfcather sticks wouldn’t remove the blood clots as they are too small!
After being left for a while, the nurses came back and asked me to go onto the ward and transfer onto the bed so they can have a look at things. Whilst they were chatting, they decided that I need to come back on the 20th of June for a Camera Test. This is a camera which goes up your urethra into your bladder so they can have a look at things. Apparently, I’ve done serious damage to my bladder and they need to know the extent to see if they need to do anything or if I need treatment etc. So I’ve got to keep the catheter in until then. The nurses mentioned that A&E are pretty useless for me so don’t bother going up there unless I really have too for my catheter!
Unfortunately, they can’t do anything for my pain either. They said it’s just my body reacting to the catheter.
6th June – A&E
The night before we noticed a sand/gravel within my catheter bag, sounds strange but it was exactly like sand/gravel. It was coming out of me, I could see it through my all of my catheter piping and when we googled it as we’d never seen anything like this before, straight away it came up with kidney stones. Anyway, in the morning we rung my Urology Nurse, told her and she told us to go straight to A&E.
We got there and straight away I had urine and bloods done, the urine came back “low infection” as did the blood results so they weren’t worried about my infection markers. After the doctor talking to my Urology team, between them they decided that the sand/gravel can be either; kidney stones / urine crystallisation / urine separation so their going to send my catheter bag filled with urine with sand/gravel in off to be tested so we can know for sure what’s in it.
Due to having the sand/gravel throughout the catheter bags and tubing, I asked if they could give my catheter a wash out so it would make it look a little cleaner and get rid of all this horrible stuff I’ve been producing which thankfully the hospital agreed too. They removed quite a lot of gunk which felt unbelievably good.
23rd May – Eye Hospital
I’ve been under the eye hospital since 2013, due to have multiple problems with my eyes. Last year at Spec Savers they found swelling behind my eyes and whisked me to the eye hospital A&E as they diagnosed me with early stage Papilledema, long story short I now get my eyes tested at the hospital, yearly to keep an eye on things. No pun intended haha!
I genuinely didn’t feel like I needed any new glasses this time. I’ll admit, I’ve been suffering badly from blurred vision when looking at the Tv, IPad, Phone and looking at people in general but I didn’t think anything of it as I’ve always suffered from blurred vision due to my migraines. Anyway, after going through the testing it turns out that both of my eyes have deteriorated quite badly and I do need new glasses. How I didn’t notice I’ll never understand but she said the blurring could have been the sign! the blurring has got better since having the new glasses thankfully and I’m loving my new specs.
If you’ve made it to the end of this blogpost, you deserve a medal!
That’s the end of today’s update for you lovelies! I do apologise for the length of today’s post but I know how many of you wanted one.
I’ll never ever be able to thank you enough for your never ending support, love and ecouragment throughout this battle of mine, it means more to me then you’ll ever understand.
Sending you all tons of love and huge hugs as always,