Welcome back to Part 3 of the allergy to life side quest chronicles! Lucy vs The Leak continues to be on hold while I tell this horror story I found myself the main character of!
For those who are new here, hey! I’m Lucy. A 29-year-old who has been something of a medical mystery for over 12 years now. For some reason, my body likes collecting chronic conditions like they’re Pokemon! Whilst I can think of greater things to be achieving in my 20s, if some good can come from yapping about my experiences then I suppose that’s a win!
If you haven’t read “It’s your troubled hero back for season 6” and “Nobody more monstrous than me” then you a must before doing anything else!
If you want an insight on what MCAS is from a credible source, check out the Mast Cell Action charity!
Picking up where we left off …
We finished part 2 with some fairly vague semi-medical advice, but more importantly a scheduled zoom meeting for that 14:00 that afternoon.
In light of this scheduled meeting, I didn’t answer the email. I thought it would be easier to voice my concerns then.
20 minutes before the zoom meeting was due to take place, I received an email sporting the subject title “rearranged.” I won’t reveal the reason he gave for cancelling it, but let’s just say my blood pressure definitely increased!
Nobody could deny it all seemed a little too coincidental at this point!
Rearranged and another weekly check-in …
At his request, the meeting was rescheduled for the upcoming Wednesday at 9:00am.
In the meantime, the only chance of accessing any (and I say this very loosely) medical advice was via the weekly check-in. As I had done several times now, I detailed (very specifically) the persistent difficulties with my chest and throat symptoms. This included:
- Telling him the tightness is at the top of my airways and base of my throat.
- Describing my throat as feeling like it is narrowing.
- Explaining that my chest feels like somebody is sitting on it.
- Reminding him that doctors have said there is no wheeze that can be heard.
I received the following response and at this stage there were one of two explanations for what I am about to share below …
- It wasn’t him (the doctor and so-called specialist) reading what I have logged.
- The response is AI generated.
- There is a pre-prepared template for certain details to be substituted.
Obviously, I cannot prove any of these judgements, but your gal is entitled to her opinion!
The (not so) hotly awaited reply …
Anyway, the following response dropped in my inbox on Tuesday evening …
Persistent chest and throat symptoms on exertion and not at rest is a pattern worth taking seriously.
For context, I identified movement as something that worsens my symptoms. I did not tell him the symptoms resolved at rest!
In the context of mast cell disease, this can reflect airway mast cell activation that is triggered or worsened by physical activity, positional change, or increased breathing demand. It can also reflect a degree of laryngopharyngeal mast cell involvement that requires additional treatment targeting.
Let’s focus and hold onto the words: requires additional treatment targeting. In my mind, this meant a change to my medication regime was necessary …
Please describe these symptoms in a little more detail in your next check in, specifically whether you experience tightness, wheeze, a sensation of throat narrowing, coughing or voice change, and whether the settle promptly with rest. This will help me assess whether an additional step is warranted for this domain.
Do you see now why I was struggling to believe he was actively reading these check-ins? Also, his response began with telling me the symptoms were worth taking seriously; now he is telling me it can wait another 7 days for the next weekly check-in.
Continue with your current regime without changes.Please provide more details on the chest and throat symptoms in your next check-in.
So in summary, his grand advice (for £1,500 let’s not forget) was to struggle for another week because the specific detail provided wasn’t specific enough despite being exactly what he asked for.
Irritated though I was, the rescheduled zoom call was due to take place at 9am the following morning.
The rescheduled zoom call …
Now, let’s emphasise the fact he specified 9am for this meeting. I opened my laptop around 8:50am and logged onto my emails. However, there was no link for this zoom meeting which if I’m being honest didn’t entirely surprise me!
Unsure what to do, I clicked on the original link from last week to which zoom sent me to the holding room and told me to wait for the host to begin the meeting. Side note: the trauma flashbacks this gave me to covid times were real!
9:00am came, followed by 9:05, 9:10 and 9:15 with nothing happening. Experiencing a feeling of Groundhog Day, I checked my emails to find no request of further rearrangement.
£1,500 for this service may I remind you all!
By 9:35 I was over it. I had also received notification from my GP that my blood results had come back abnormal.
A series of unhelpful emails …
Deciding I wasn’t about to sit indefinitely in front of the laptop, I sent the following email to him …
Hello, I believe we were supposed to have our rearranged zoom meeting this morning at 9am. I used my existing link to join this meeting but it is still waiting for you to connect. As it is now 9:35am (at the time of sending this), I am assuming it is not going ahead. Could you please let me know what is happening.
In light of the notifications received and the ongoing symptoms I was experiencing, we made the decision to go down to the GP surgery and book an appointment with an actual doctor.
Sorry, but who is paying who at this point …
Whilst I was waiting in the queue to speak to the receptionist, an email pinged through saying:
Sorry, over running. I will be on in 5 minutes if that is okay, if not I can rearrange?
A link to join the meeting was also pinged through. I don’t believe for a second he was overrunning. I think he’d forgotten about it and was trying to cover his tracks. The sudden link coming through following his response gave that away.
Unfortunately, as I was in the doctors and not sat in front of the laptop screen, I didn’t see the email immediately. Once I had spoken to the receptionist, I saw the above email, the link and the following follow-up email:
Hi Lucy, I appreciate you may not be on, or have left now. Please let me know anytime today or tomorrow and I will make it a priority. Apologies, has been a calendar nightmare today.
A calendar nightmare? He specifically requested 9am Wednesday morning. Also, if you are running late then fair enough, but you send a quick email. I can 100% guarantee that if I hadn’t sent that email at 9:35 then he would never have materialised for this meeting.
Again, for £1,500, this is a million miles away from the service I expected!
Being the polite person that I am, I responded around 10:00am explaining the situation regarding my abnormal bloods and increasingly troublesome chest and throat symptoms. His reply was simply let’s arrange a catch up after my GP appointment.
My ability to breathe is low, but my patience is lower …
Following my categorically useless GP appointment, I sent the following email to this doctor:
“I saw a GP who basically didn’t know what to do because my chest is clear and my SATs are all good. If I am being honest, I am starting to get a little frustrated with this whole situation. I am a very patient individual and also incredibly understanding of unplanned things happening. However, I don’t feel as though I am receiving the level of medical care I expected for the £1,500 I have paid for this programme.
I am militant with taking all of my medications at the correct time each day and consistently consume an adequate amount of fluids each day. I understand with any condition which flares up that it can be hard to put a timescale on how long it will take to settle down. However, the persistent chest tightness alongside the narrowing sensation in my throat is having a significant impact on my ability to function and I am struggling to see after these many days how it is going to settle down without some sort of intervention.
As I mentioned in my previous email, my total white cell count is ***** (13th April) compared previously to ***** (3rd March). The neutrophil count was ***** (13th April) compared previously to ***** (3rd March). I mention these as they are both detailed as being substantially outside of the normal range on my NHS app. If this is of any significance or not I do not know, but given the prolonged difficulties I am experiencing post exposure to the contrast I do feel as though something needs to be done in order to help provide some relief.”
A whole lot of empty words …
It was now 17 days since my spinal procedure and 15 days since it became difficult to breathe. My two courses of steroids were now finished, but I remained indisputably short of breath. Somewhere around midday, I received the following response to my email from the day before:
“Thank you for writing so clearly and honestly, and I want you to know your frustration is completely valid.”
Aside from the fact I was not and am not interested in the polite waffle, I know it is pal. I don’t need your validation, I need your so-called medical expertise. He is clearly not familiar with the phrase actions speak louder than words! Anyway, he continued:
“I have reviewed everything you have shared, including your blood results, and I do not want to minimise what you are experiencing. The rise in your white cell count and neutrophils is something I want to discuss with you properly rather than address through a message, because your symptoms and these results together need a proper clinical conversation. “
Again, more empty words! I mean, if I was a hypochondriac with severe health anxiety, I’d probably be panicking now that these abnormal results are indicative of something serious. Fortunately, I have whatever the opposite of health anxiety is! The response continues:
“I am holding time tomorrow for an urgent review, is tomorrow morning ok for you? In the meantime, if your chest tightness worsens significantly, your throat narrowing increases, or you feel at any point that your breathing is compromised, please go straight to A&E and mention the contrast exposure and your blood results.
TOMORROW?! After cancelling the first zoom call and missing the second, he now expects me to wait another day for a clinical conversation? My GP (albeit a waste of time) saw me the same day, but for £1,500 he is making me wait?! In the words of Taylor Swift: Mistake my kindness for weakness and find your card cancelled! The response finished:
“You have been incredibly patient and you deserve better than a message telling you to wait. We will speak tomorrow.”
Let’s re-read that one more time … “you deserve better than a message telling you to wait. We will speak tomorrow.” I mean the contradictions are contradicting right there. Telling me we will speak tomorrow is in fact telling me to wait! Also, I know I keep saying it, but for £1,500 I shouldn’t be getting a service slower than the NHS!!
Definitely under reacting …
Florence may have written buckle about a guy who didn’t text her back, but at the moment the lyric “Cause I’m stupid and I’m damaged, and you’re a disaster” seemed equally fitting in this moment!
I couldn’t help but think that if my mom were still here she’d have been driving down to his clinic at this point. Fortunately for this doctor (and only this doctor), not only is my mom sadly not with us, but I also didn’t have the breath to be pulling such a stunt!
Unsure if the feeling of frustration or defeat was higher, I sent the following response:
“Thank you for your email. Tomorrow morning is not a problem, but I will need a specific time. In response to attending A&E, I do not feel it is worth the trip and time that I would be left waiting because my visit roughly 10 days ago they were told by my dad about the contrast exposure and they didn’t consider it to be of relevance because my SATs were normal and my chest was clear. Therefore, attending again despite the symptoms I know will be a complete waste of time.
However, should I find myself in circumstances where A&E is the only option, what do I say to convince them that I do need to be taken seriously and it is necessary for them to investigate further. For me, as I have had these symptoms for a prolonged period of time now, should I be concerned by abnormal blood results?
I am sure you can appreciate tomorrow is Friday therefore if anything does need to be done I am restricted by the weekend. Ultimately, I am still being left in limbo waiting with symptoms and no medical guidance on how to relieve them considering I have been recording them on both the daily and weekly symptom logs and check-ins.”
Point made …
He then replied to this stating:
“He could see me this evening if it helps and could arrange a zoom meeting around 8pm.“
If it helps? Oh I’m sorry, but last time I checked the zoom call was a part of my £1,500! You best believe I accepted this and stated I would be available at 8pm; not around 8pm!
A whole lot of nothing …
I’m giving the zoom call its own post because the gaslighting and neglect peaks in that 45 minute period.
This post feels a bit like it’s been a whole lot of nothing, but that in itself screams red flags given the circumstances. The other thing that was becoming abundantly clear is that all the flaunting on social media is for show.
There is a recognition of the symptoms (although I already knew this before my initial appointment), and writing a prescription for the medications wasn’t a problem. Unfortunately, I don’t think you can call yourself a specialist in the condition if you cannot medically manage the inevitable flare ups and complications that come with it. Again, more on that particular subject to come in a later post!
May your symptoms always be believed,
Your favourite headache x
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