GP

DOOMED! & My Vasculitis Tongue

/ / Leave a Comment
Reading Time: 6 minutes

DOOMED!

I don’t know much about Vasculitis.

But I need to know: What comes next? How will my Vasculitis progress?

At a recent clinic appointment with a Renal Consultant, I asked the above questions. The Consultant stirred more intensely at his computer screen, avoiding eye contact. I waited. I wanted some answers. But instead he ignored my questions and moved on to asking about something else.

This wasn’t the first time this had happened to me. A few weeks before, I had seen the Specialist Nurse in her clinic and asked the same questions. She had looked down at her hands and given practically no answers or useful information – instead offering to refer me to a Psychologist.

Months before, I had asked the same questions to my Vasculitis Consultant, who had also avoided eye contact and gave some vague information about Rituximab infusions.

But being a Registered Nurse, I have seen this reaction by Doctors and Nurses to these sort of questions before. When I worked in an A&E Department, patients who were doomed!, destined to die, usually pretty soon, who asked these questions got the same reaction. Eye contact avoided by the Doctors and Nurses. No answers to the questions asked or useful information given.

I do understand the two Consultant’s and the Specialist Nurse’s reactions to my questions. Most Doctors and Nurses go into their professions to heal; to either make people better or to keep people alive for as long a time as possible. We live in a time where all people, including Doctors and Nurses have high expectations of healthcare. Good healthcare has made the occurrences of young deaths very rare.

So imagine being a Doctor or a Nurse and knowing that you could do very little to meaningfully extend a patient’s life due to a disease. That at best, you might minimally slow down its progression. This is sadly the case with Vasculitis.

Now imagine that this patient asks the questions above. These questions are uncomfortable for Doctors and Nurses, because of the wide array of thoughts and emotions they trigger within them. Doctors and Nurses generally don’t want to lie to their patients. Nor do they want their patients to become hopeless, sad, angry or upset.

It takes a great deal of courage, skill, awareness of the patient and themselves for any Doctor or Nurse to have this sort of extremely uncomfortable conversation.

Given all of the above, it is understandable that the two Consultants and the Specialist Nurse have reacted in the ways in which they have. However, in my case, I would prefer we navigate this uncomfortable conversation, so I have answers, know what to expect and have more information.

How You React

There is this very famous quote:

I can’t remember where I first heard this quote, but it is very true statement and the quote has always stayed with me. Everyone reacts to what happens to us through our thoughts, emotions and behaviours (what we say and what we do).

Here are my thoughts regarding the way the two Consultants and the Specialist Nurse have reacted to my questions:

  1. I would prefer to have the uncomfortable conversation and in doing so, gain answers and more information. That way I can prepare for and plan for the progression of my Vasculitis.
  2. Although I regularly experience fatigue/exhaustion, swelling and pain, I am grateful that I do have 10-15 productive hours and that the pain is not currently agony and unmanagable.
  3. I am okay with dying. Everyone dies. Would I have liked more time? Of course. Most people would. But very few people get to choose when their life comes to its end. Death is part of The Cycle of Life.
  4. That I need to make the best use of the limited time I have left alive.
  5. That I want to prepare the people that I love for my death. This won’t eliminate or lessen any grief they feel, but will hopefully eliminate any trauma that could be caused by the shock of an unexpected death. My Darling Baby Brother unexpectedly died in 2011, the trauma caused by the shock took me 5 years to deal with. This delayed my grieving for loosing him.
  6. An appreciation for how valuable and precious time is, as a limited resource.
  7. I’ve been thinking about legacy, what it means and what mine could be, see below.

I have also developed a desire and the motivation to experience happiness and joy as often as possible for as long as I live.

      A Note About Legacy

      A legacy is essentially what you leave behind when you die. It can be physical things such as possessions/property/money, or less tangible things like memories/values/impacts on others or a combination of both. After a great deal of thought, I realised something:

      My legacy will be decided by those that carry on living after I’m gone.
      It is not something for me to decide on and certainly nothing I need to influence.

      Realising this was a great relief, as I realised that there is nothing I need to say or do around this.

      Emotionally, I feel:

      • Fearful about my future for a number of different reasons.
      • Sad about the things I will not get to experience/create.
      • Sad that people that I love will have to grieve. Although, I do acknowledge that there is nothing I can do to prevent this and that it is a natural reaction to loss.
      • Guilt that Vasculitis symptoms and side effects of treatments will reduce my ability to be physically, mentally and emotionally present as much as I would like for the people that I love.
      • Guilt for not being well enough to contribute to all the communities that I am part of.
      • Guilt & Shame feeling like I am letting people down, for not meeting their expectations.
      • Guilt & Shame about the help/support/care I may need from others in the future.
      • Embarrassment for some of my symptoms and the limitations these symptoms cause.

      After I was diagnosed with Vasculitis I did feel angry and depressed, however, with time, I have been able to let both of these emotions go and they have been replaced with acceptance for the circumstances I find myself in.

      Behaviour-wise, I am taking each day as it comes, one day at a time. Vasculitis symptoms fluctuate, meaning that the severity of symptoms and what I am able to say and do varies greatly. I’m currently doing what I can, when I can.

      My Vasculitis Tongue

      Vasculitis is a rare disease and as such information available online is limited. There are also a number of different types of Vasculitis, each having slightly differing symptoms. Vasculitis can also vary in severity from person to person and at different points during the diseases’ progression. A great source of information is the charity Vasculitis UK.

      I’m documenting my experiences living with Vasculitis on this blog for two reasons. The first reason is that it helps me. The second reason is that it might potentially inform or help other people experiencing the same.

      With this second reason in mind, I want to share with you this AI generated image (based on a photo of my own tongue) to illustrate what a tongue affected by Vasculitis can look like:

      I have chosen to use an AI generated image, rather than an actual photo due to embarrassment about how my tongue currently looks. I do appreciate that I have no valid reason to feel this way, but nevertheless it is how I feel. I can assure you that although it is AI generated it is an accurate representation. The signs of Vasculitis being present in both the centre top of the tongue (deep red lines) and either sider of the tongue (lighter red lines).

      Initially, I noticed the lines, but there wasn’t any real swelling or pain. However more recently, pain has started to be present and it does make it more challenging to eat hot foods and drink hot drinks.

      What’s Next?

      I am informed that my recent blood results did not indicate that my Vasculitis is currently active, however I am having flare ups of symptoms very regularly, indicating that the blood results may not be giving a fully accurate picture, or that there maybe something else going on.

      So I have had an MRI scan with contrast, am for an urgent ENT Review and in the meantime I continue to take photos of the facial swelling and state of my tongue and report my symptoms to both the Vasculitis Specialists and my GP.

      Write soon,

      Antony

      Other Content

      If you liked this post, you might like:

      Support

      I recognise that people visiting this page/post might want to know where they can get support.
      If you require support around your mental health, addiction or physical health, see this Support page here.

      Share on Social Media:
      Health, Life, Thinking, , , , , , , , , , , , , ,

      The Surgery Didn’t Happen – Here is My Experience of Private Healthcare

      / / Leave a Comment
      Reading Time: 9 minutes

      This post is rather long, it wasn’t supposed to be but it just happened. So to make it easier to navigate and to read, I have split it into the following sections:
      1. Nasal Polyps?
      2. The Private Hospital
      3. Problems with getting CT Scan Results
      4. Pre-Surgery
      5. The Day the Surgery was Suppose to Happen

      1. Nasal Polyps?
      For the past couple of months I’ve been experiencing severe swelling and pain to my nose, nasal passage and sinuses. My entire face has felt painful, including my cheek bones, jaw and teeth. My nose has been constantly congested and I’ve had to be prescribed strong painkillers from the GP – which only numb the pain, not eliminate it.

      The pain I can honestly say, is the worst pain I’ve ever experienced.

      I had been seeing my GP regarding these symptoms every few days, had lost count of the amount of times I’d gone to see various Doctors at my GP Surgery about the same issue. I felt like I was getting nowhere and the symptoms were only getting worse.

      The symptoms became so unmanageable that I felt I had no choice but to visit to my local A&E Department. A kind Doctor there and the only one to ever look up my nose diagnosed me with nasal polyps. He said I needed to have the polyps removed by an Ear, Nose & Throat (ENT) Surgeon. He explained that the waiting list was significant, that it would take at least several months before the surgery would be completed. He explained that I would need further time off work to recovery post surgery. While I really appreciated his honesty, I could not bare to even think about being in this much pain for several months.

      After this I booked another appointment at my GP surgery and requested an urgent ENT referral to my local NHS Hospital. The next available appointment was in 6 weeks time.

      I discussed the situation with my mum, some friends and one of the actual named GPs at my surgery. The named GP was brilliant, it’s just such a shame that normally I can never get an appointment with him, even when I specifically request to see him. I decided I had no choice but to go for private healthcare.

      2. The Private Hospital
      I was initially very impressed with the private hospital. They offered me an appointment the same day I telephoned. I chose to go the next day to allow me some time to gather the required funds for the initial consultation. The next day was a Saturday, but this wasn’t a problem as they have some ENT Surgeons who routinely offer weekend appointments at no extra charge.

      The hospital itself was impressive to the untrained eye. Free parking, plush waiting areas with comfortable seats and complementary self-serve hot drinks while you wait for your appointment. The friendly reception staff greeted you warmly and weren’t behind bullet proof glass. Although I noticed and appreciated these positive differences, I am not an untrained eye. I am a Registered Nurse with significant experience working in hospital settings.

      On the way into the hospital, I spotted a display proudly boasting how the hospital was investing £1m in an Intensive Care Unit (ICU), which is above the level private hospitals are required to have. Let me tell you the truth about an ICU, they take several millions of pounds to set up (think machines, equipment & medicines) and several millions of pounds a year to run safely (think staff 24/7 with the correct training, knowledge and experience).

      I suppose that having some sort of ICU onsite is better than them downing tools if something goes wrong during surgery and dialling 999 for an NHS ambulance to take you to an NHS hospital for care and treatment. Which believe it or not, is what some private hospitals do here in the UK. But a million pound investment is like a drop in the ocean and certainly not something to boast about.

      The ENT Surgeon was and is amazing. Very experienced and knowledgeable. I really can’t fault the speed in which I got my initial or follow up consultations. You could argue that’s what I’m paying for, but I still really appreciated it. Unfortunately on the day of my initial consultation, I developed a severe bacterial nose and sinus infection (see I Didn’t Know Whether to Laugh or Cry) and turned up looking like the Elephant Man due to the swelling. The ENT Surgeon’s treatment plan was excellent and included the appropriate medications that I was able to pick up from the onsite Pharmacy.


      3. Problems with getting CT Scan Results
      I decided to go back to see the ENT Surgeon as soon as the infection cleared, which was exactly 1 week after my initial consultation, a Saturday again. Despite this not being the original plan, the ENT Surgeon was happy see me again. I explained and stressed the urgency of getting this health problem resolved as soon as possible due to the extreme pain and because I need to return to work as soon as possible. An urgent CT Scan was arranged for a few days later. The CT Scan was very expensive considering the small area scanned. This was were I hit my first problem with the private healthcare hospital.

      I wanted to see my CT Scan after I had it. But this was not possible. I was advised to go away and fill in a Medical Records Form to request a copy of the images and report. Then I’d have to come back to the hospital once Medical Records and Legal Team had approved my request with photo ID to get a copy of the images and report. I’ll be honest, I wasn’t rude, but I was assertive. I got a form off them and completed it there and then. I gave them my photo ID to photocopy, so that I didn’t an unnecessary 60 mile round trip at a later point.

      My cats: Dylan (front) & Rus (Back).

      I had a further consultation with the ENT Surgeon and he diagnosed my with a perforated septum (a hole in the septum in my nose). He took a more detailed history off me. All the times (which were many) over the past few years that I had a blocked nose, I put down to developing an allergy to my cats. But they weren’t an allergy at all. Instead recurrent infections that have slowly ate away at my septum. The treatment: surgery to repair the hole. But privately it wasn’t going to be cheap.

      I began ringing the Medical Records Team to chase progress of my request on a daily basis (Monday to Friday during their operating hours). I was hoping that if I could share this with my ENT Team at my local NHS and that they might consider moving me up the list as an urgent case. I repeatedly stressed the urgency of getting hold of these results to the Medical Records Team and explained that this was causing a potential delay in my care and treatment that could result in a nasal collapse. There was no sense of urgency with them and it felt like they didn’t care. At one point I began to ask to speak to someone in Management, several days in a row and was put through to an unanswered phone. I emailed them and again this went unanswered.

      So I decided to email the Chief Executive and Chief Nurse of the private healthcare group that runs the hospital. Within a couple of hours of sending the email, where I had mentioned that I would be seeking legal advice if my nose collapsed (think Michael Jackson) while I was awaiting them to release the CT Scan results to me and email arrived with both the CT Scan images and report.

      About an hour after that I had an Operational Manager from the hospital telephone me to see if there was anything else she could do to help me. I’m pretty sure from her tone of voice that she was asking through gritted teeth, but I had got the CT Scan results that I needed. At this point, I was very disappointed in the administration/management side of the private hospital.

      I shared my CT scan results with the NHS and they were still saying the waiting list was several months long for surgery. So continuing the private healthcare was my best option at getting quick treatment.


      4. Pre-Surgery
      On 12/01/24 I contacted the ENT Surgeon and booked for the first available surgery date which was this Friday just gone (26/01/24). He confirmed that he’d sent the booking form in that day. On Monday just gone (22/01/24), I still hadn’t received a Pre-Op Assessment appointment or a fixed-price quote that would need to be paid before the surgery at the hospital.

      I contacted the hospital and they didn’t even know that I was due to come in on Friday for the surgery. In other words: They hadn’t processed the booking form sent in by the ENT Surgeon. I had to contact him to get him to chase it. The private hospital had let itself down with failure to follow its own administrative processes. This is frustrating because with the amount of money I was due to pay them, you’d think they’d want the surgery to go ahead, as if it doesn’t they don’t get paid.

      The hospital sent the fixed-price quote for the surgery the next day, Tuesday (23/01/24) and also telephoned me to arrange my Pre-Op Assessments for the following day.

      Wednesday (24/01/24) – The Pre-Op Nurses were friendly, kind and a real credit to the hospital. I seemed to pass the Pre-Op Assessment, after an assessment, an ECG test and a blood sample to find out my current Diabetic HbA1c level (link goes to Diabetes UK).

      For about a week leading up to the surgery, I had been struggling with episodes of severe intense pain that were so bad that it made me cry and scream in agony at the same time. This was in addition to the constant pain in my nose, face, sinuses, head, jaw and teeth I feel on a daily basis. These episodes began to affect my mental health and it had began to deteriorate. Just hold on, I said to myself. From Friday, things will start to get better, I reassured myself. There was a plan and I was doing everything I could do.

      Before I go on to my experience on the day of the surgery, you’ll notice I haven’t named the private hospital or private healthcare group that operates it. That’s because I really wouldn’t recommend them to anyone. In fact I’d tell people to avoid them. I refuse to give them any free publicity or promotion by naming them here.

      But in case you really want to know: Their own publicity material state they are the private healthcare hospital group of the year and the particular hospital is located near Didsbury in Manchester.

      5. The Day the Surgery was Supposed to Happen
      A kind friend had agreed to take me to the hospital, pick me up when I was done and take me home. I had followed every instruction given by the Pre-Op Nurses. I booked in and was taken to my private room. I saw a Nurse who asked me some questions and took my observations, including a Blood Sugar reading.

      Then the Consultant Anaesthetist comes in to see me. I’ll be honest he came into the room with a bad attitude and was quite frankly rude. It took all of my self-control to speak to him respectfully and not to speak to him as he was speaking to me. He said he wasn’t prepared to anesthetise me for the surgery because my HbA1c level was too high. He stated that he felt the risk of complications were too high. I asked what it was and he said 84mmol/mol. I explained that the I was tested at the beginning of December and it was 99mmol/mol, so it is improving. I explained that I am currently checking my blood sugar as recommended and taking my medicines (including insulin) as prescribed. I explained that I am currently waiting to see a Diabetic Consultant under the care of the NHS.

      I explained that I have had repeated infections in the past twelve months, which has increased my HbA1c level. I asked at what level it would need to be at in order for him to be happy for the surgery to go ahead. He said he would want a HbA1c level of 42-48mmol/mol. I explained that this is a normal HbA1c level for a non-diabetic and that this was unrealistic for me. I explained why by explaining what occurs during Type 1 Diabetes in the body and explained that my body is also insulin-resistant. I also explained the constant pain and sometimes agony I am experiencing, even on prescription only painkillers and that I don’t think that I can cope with pain for much longer. I explained that it is affecting my mental health and making me feel suicidal. He didn’t show any empathy or even acknowledge what I’d said. I explained that I have on several previous occasions had aesthetic and surgical procedures with a raised HbA1c, without any complications.

      I asked what happens now. He said I couldn’t have the surgery. He started to say that if I could meet his target for my HbA1c level the surgery could be re-booked for a couple of week’s time. I explained that the HbA1c level takes months not weeks to come down and that it might not come down at all, as pain increases blood sugar levels and I’m currently in constant pain. I began to become tearful and repeated that I don’t think I could tolerate this pain for months and repeated that it is making me feel suicidal.

      The Consultant Anaesthetist made his excuses and left the room. I was and I beyond devastated. I haven’t the words to explain just how severely hopeless I felt and feel. The ENT Consultant came to see me before I left. I could see he was disappointed for me. He apologised and said he there had been several discussions with the Anaesthetist, but he would not change his position. I asked: What do I do now? What’s the plan? The ENT Consultant said the only thing he could suggest is that I go back to the NHS to see if they could keep me in hospital for a week before the surgery to reduce my HbA1c level before doing the surgery. The ENT Consultant said that he would speak to my local NHS hospital to see if he could help to arrange this. He reassured me that he wasn’t going to just abandon me. He was extremely kind and I thanked him for this.

      I messaged my friend, he came to pick me up and we left. My mind and emotions were and are all over the place. I really don’t know what to do next. The constant pain makes it difficult for me to even think straight. I feel completely out of control and there doesn’t seem to be anything I can do to stop the pain by getting the underlying cause treated. I feel low and it feels hopeless. My quality of life is the poorest its ever been. I feel physically, mentally, emotionally and spiritually broken. Last night, I was so low, I even considered ringing the Samaritans.

      But I have to remind myself of a couple of things. First, where there is life, there is hope. Second, the only certainly in life is change. The pain. How I feel now. Both will change.

      Take Care,

      Antony

      More Content From Antony

      Here are the books that Antony has published, click any cover to learn more:

      Share on Social Media:
      Friends & Family, Health, , , , , , , , , , , , , , , , , , , , , , , , , , ,

      Pneumonia Recovery

      / / Leave a Comment
      Reading Time: 2 minutes

      I tried. I really did. After being admitted in hospital for three days with pneumonia (a chest infection), urine infection and in diabetic ketoacidosis, I had a week off work to recover. I managed the week, then went back off sick.

      I’m constantly beyond exhausted, needing to sleep all day and night on a bad day. My blood sugars are all over the place, which isn’t helping matters. I just don’t feel right. I’m being really honest – I don’t know exactly what’s wrong. I can’t pinpoint specific symptoms any more than I have explained.

      I went to see my GP today and he said:

      Just what made you think you could return to work after 1 week? – My GP

      He had a point. I’m not twenty any more. At thirty-seven years old, I now have to accept that infections have a bigger impact on my body. Having diabetes also means my body takes longer to heal. The bigger the impact, the longer the recovery time. This has been my main lesson from my GP today.

      I’ve never really have to taken more than a week off work to recover from infections in the past. So this is new territory for me. But I have to listen to my body. It’s crying out for recovery and time to heal. And it is always wise to listen to your doctor – especially if you’re lucky to have an amazing one like I do.

      My GP has requested some more urgent bloods. Given me a sick note for two weeks and strict instructions to rest, recuperate and not to return to work before being reviewed by him again.

      Despite knowing that I can’t help getting sick and that it isn’t something I have any control over, I do feel guilty for taking time off work. I feel like I’m letting everyone at work down. My manager, my colleagues and my patients. But I hope they understand.

      I really have no choice. I’ve been very poorly and I’m not fit enough to get through a day without a nap (or several) due to exhaustion. The littlest things, like for example taking a shower wear me out.

      My GP was very tactful, but he basically explained that if I don’t take weeks off from work to recover now, in the long term it might take me months to recover. My GP explained that I will have good and bad days during this period of recovery. He warned me about good days and the assumption I could make that one good day means I’m fully recovered.

      So here I am. Sat here writing this post. Accepting that I need a period of recovery to allow my body time to heal. Not knowing how long it will take. Not being able to do much to help it apart from self-care: eating well, resting when required, keeping a good sleep routine, you know, the basics but essentials.

      I would like to thank all the people in my life that have and continue to support me. Thank you. Without you, this would be so much more difficult.

      Write soon,

      Antony

      Share on Social Media:
      Health, Thinking, , , , , , , , , , , , , , , , ,

      Terrible Tolerance and Waiting

      / / Leave a Comment
      Reading Time: 2 minutes

      If you take medication for anything, including mental illness, over a long period of time your brain and body develops a tolerance. This means that the medication becomes less effective.

      How long a tolerance takes to develop depends on the individual. You may get a tolerance quickly (weeks or months of use) or slowly (years or decades of use). The process of developing a tolerance is so gradual that you might not notice straight away. In fact it might take you quite sometime to understand that the symptoms of illness are returning and that you need to have your medication reviewed. Here is a line graph that shows drug effectiveness over time:

      tolerance-drug-effectiveness-over-time
      Tolerance: Drug Effectiveness Over Time.
      Copyright © Antony Simpson, 2019).

      When your brain and body develop a tolerance you have two options:

      1. Increase the dose of your medication.
      2. Change your medication.

      Any increases in dose or changes to your medication should be done under medical supervision. Some medications have withdrawal effects, which you may experience if you suddenly stop or decrease the dose too rapidly. The withdrawal symptoms range from relatively mild to extremely severe.

      I am on a mood stabiliser medication. Developing a tolerance to this medication is beyond terrible. It’s awful, frustrating and occasionally overwhelming. At times it feels like I am being tortured.

      I visited my GP some months ago and explained how I was feeling in mood. My GP referred me to the Community Mental Health Team. I waited 4 weeks for a twenty minute telephone assessment.

      I was passed onto a Pharmacist Prescriber, another 4 week wait. She appeared to be concerned about hypomanic symptoms that I’m experiencing including:

      • High levels of anxiety.
      • Increased energy.
      • Difficulties in falling or staying asleep.
      • Increased productivity.
      • Obsessional thinking.
      • Being very irritable and frustrated.
      • Switching between tasks without finishing any of them.
      • Increase in desire to have sex.
      • Feeling on edge and being unable to relax.
      • Writing a lot.
      • Fidgeting.
      • A couple of severe mixed mood states per week.

      Although many of these symptoms may seem positive at first glance, when your mind takes them to extremes they become destructive and are damaging to your physical and mental health.

      The Pharmacist Prescriber doubled the doses of my medication. This proved ineffective. She discussed my case with she with a Consultant Psychiatrist whom wants to see me. Another 5 week wait.

      All this time waiting and struggling. All this time of lacking a quality of life. I can’t even sleep off the severe mixed mood states.

      I totally understand how underfunded the NHS is and in particular how under resourced mental health services are. So far I’ve waited 13 weeks (3 months and 1 week).

      The wait feels eternal and I am beginning to feel that nothing will ever change. I know rationally that neither these last two emotionally driven thoughts are correct. Yet it can be difficult to disregard how you feel.

      On the plus side my first book Mental Health Wisdom – Developing Understanding & Empathy is coming along well and at a quick pace due to the hypomania. It is due for release in October of this year.

      Write soon,

      Antony

      mental-health-wisdom-banner
      Share on Social Media:
      Health, Thinking, , , , , , , , , , , , , , , , ,
      Scroll to Top