I can’t believe it’s been 3 whole months since I last wrote a health update for you. Its been an absolute whirlwind the past 3 months – who would have ever thought 2020 would be the year that’ll go down in history forever? you just never believe something like this is going to happen in your lifetime, it’s crazy!
Anyway, as you’d have probably guessed, all my appointments I had booked in from March until now have been cancelled or done over the phone. This has been the longest time I’ve ever been away from the hospital before which is the strangest feeling. a time period of this long without an appointment is something I’ve dreamt of since falling ill but now it’s happened, I’ve realised how important those appointments actually are and how much my health depends on them.
Luckily, the appointments which are most important to me have actually been done over the phone. It isn’t exactly what I’d call an ‘ideal situation’ as it’s much better to see my consultant in the flesh but its better than the appointment just being cancelled and rescheduled for a later date (which could go way into next year now).
So I thought I’d share with you the appointments I have had and the outcomes of them. Let’s get into it…
Cardiologist Phone Call Appointment – 6th April
I don’t know if you’ll remember but in my last health update, I shared with you that my GP had picked up a possible heart murmur whilst looking me over. She then wrote to my cardiologist explaining this and luckily, I had an appointment booked in with them not long after that.
We started by talking about my PoTS which has been playing up recently, despite being on heart medication. I’ve been having quite bad heart palpitations especially when laying down and I find it hard to breathe. The palpitations wake me up during the night as my heart feels like it’s going into overload. So he decided to up my heart medication (which slows down my heart rate) to see if that would have any benefits and right now, I’d say my palpitations are defiantly better than what they were. I still get them but not as often.
The second part of the call was about this heart murmur. I’ve been having symptoms for a while which we couldn’t be sure if they were part and parcel of my PoTS or wether it was something else causing them, so when my GP heard a difference in my heart beat, we had an idea these symptoms could be down to that. I’ve noticed myself becoming more breathless throughout the day, to the point it makes me panic as I can’t seem to catch my breathe, my lips and finger tips have been going blue more often then usual (despite the weather being warmer), my feet have been swelling up, I’ve been sweating excessively and I’ve been having more dizzy spells than usual – so my consultant agreed that it could be a heart murmur causing this and has sent for me to have a heart scan and ECG done.
Usually all the usual checks (blood pressure, oxygen levels, pulse etc) would have been done during the appointment, if I were lucky I probably would have had an ECG done aswell but due to the circumstances, all tests are being held off until a later date. Although, I did end up ringing my GP a couple of weeks after this phone call appointment as I’m concerned about the breathlessness as it’s defiantly worsened over the last few weeks so he’s trying to get the tests hurried up. Hopefully we’ll get some answers soon!
Bowel Surgeon Phone Call Appointment – 18th May
I’ve been seeing my bowel surgeon for a couple of years now, she actually deals with my haemorrhoids which is a related to my bowel condition. if you don’t know what haemorrhoids are, there swollen veins in the lowest part of your rectum and anus. They are also known as piles.
Obviously due to my bowel condition, haemorrhoids are bound to happen. So every couple of months I see the bowel surgeon who does a treatment called ‘banding’ where they use ligator to place one or two rubber bands at the base of the hemorrhoid to constrict blood flow. Because my rectum/anus is filled with haemorrhoids, the majority of them being rather large, i was having multiple banded done at once. Unfortunately, every banding I had done failed.
So when my surgeon rang, she decided that she’s booking me in for surgery to have my haemorrhoids removed – this is called Hemorrhoidectomy. A hemorrhoidectomy is used for large external hemorrhoids and internal hemorrhoids that have prolapsed or are causing problems and not responding to nonsurgical management. The only problem is, due to my PoTS, Ehlers Danlos Syndrome & Sleep Apnea having general anesthesia can be extremely dangerous. due to my IIH & Arnold Chairi Malformation I cant have an epidural as it can cause a fluid leak. So I’ve got to have an anaesthesia review in hopes we’ll be able to figure out an option that’ll work. Whilst I’m having this operation done, my gastro consultant and bowel surgeon both want me to have an endoscopy done also.
I’m currently waiting for an appointment with my surgeon and the anaesthesia team to get this plan put into place.
Gastroenterologist Phone Call Appointment – 21st May
Due to appointments being cancelled, I haven’t actually seen my gastroenterologist in nearly a year – which is the longest time I’ve gone without seeing her.
We spoke about how my bowel condition has been and the constant array of symptoms that comes alongside it. Around 4/5 months ago, I decided to stop taking my bowel treatment as it wasn’t working, instead I was just getting all the side effects and I just thought it wasn’t worth it. If you know me, you’ll know I’ve tried every single bowel treatment on the market. I’ve had the standard treatments given, I’ve been on clinical trials, I’ve tried every herbal recipe going and still nothing has made a difference so I felt it was time to stop. When relaying this to my consultant, she believed that it was best I still be on treatments so we came to a agreement that I’ll go on treatment but in tablet form.
My new treatment is a concoction of 4 different tablets which I take three times a day – this works better for me as the liquid treatments I usually have through my tube make me so sick. I’ve been on this treatment for a few weeks now and it still hasn’t had any effect, as I mentioned I’ve been on these drugs before so I knew they wouldn’t work like we’d hoped. I’ve had awful stomach cramps on a daily basis which is something to expect when on these tablets! I should be seeing my consultant again soon (depending on COVID ofc) so I’m wanting to talk new options for treatments then.
Dermatologist Phone Call Appointment – 15th June
In my last health update, I also mentioned that the pigmentation in my neck, armpits and creases of my arms had changed colour. It came on and spread quite quickly and as the weeks went on, it was becoming more and more noticeable – especially on my neck. I’ll be honest, it made me quite self conscious as I was worried people would think I’m dirty as the pigmentation was a dark brown / black colour.
Anyway, my GP referred me to dermatology just before COVID-19 hit the uk and as you can imagine their waiting lists are long anyway but when I finally did get an appointment, I got a letter a few days later saying it had been cancelled. Thankfully, they sent a text a few weeks later to say they’d be ringing on the 15th of June.
On the text it asked if we could send some photos to the dermatologist before the appointment so they can see what’s going on. When the dermatologist rang, she’d looked over the photos and knew what it was almost straight away. I was diagnosed with a skin disorder called Acanthosis Nigricans. Acanthosis Nigricans is a skin disorder characterised by darkening (hyperpigmentation) and thickening (hyperkeratosis) of the skin, occurring mainly in the folds of the skin in the armpit (axilla), groin and back of the neck. The cause of this disorder is not really known but it’s usually appears to be related to insulin resistance. So my dermatologist has sent for me to have a blood test to test that I’m not diabetic (I’ve had a few of these done in the past and they’ve come back normal but we need to check regardless).
After talking through reasons why this could have happened, we came to the conclusion that it was possibly the steroids I was put on back last year that caused the pigmentation to change. My steroids were upped in December and by the January this had appeared so it makes sense that it was the steroids that caused it.
Thankfully, the pigmentation in my neck has gone (I’ve stopped my steroids now) but my armpits are still pretty dark in colour. There’s not much they can do for Acanthosis Nigricans so you just have to hope it’ll disappear by itself over time.
Inbetween these ‘bigger’ phone-call appointments, I had a few others (urology, respiratory, multiple GP phone calls and community nurses) but honestly, there’s nothing to update you on there.
I’m sorry this is another long update, as I always say, I just like to update you in detail to not only give you an insight into my life but to raise awareness for my illnesses also! It’s so important to me that people learn about these ‘rare’ illnesses of mine and what I go through on a day to day basis.
Thank you so much for your continued support through everything, I’m so lucky to have the followers I do. I truly appreciate you all!
Sending tons of love & hugs to you all as always,