Today is the start of Global ITP Awareness Week, an international event that takes place during the USA’s National ITP Awareness Month. And so, as I have done several times in the past, I want to take some time to talk about my experiences with ITP.
Disclaimer: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own experiences with idiopathic thrombocytopenic purpura (ITP). It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.
First, some key bits of information so that you know what ITP is and why it’s such a big deal:
- ITP stands for idiopathic thrombocytopenic purpura which is, essentially, a very low platelet count. A normal count is 150,000-400,000 (generally said as 150-400).
- The lower the number, the higher your risk of bruising and prolonged bleeding/healing – or at the extreme, spontaneous internal bleeding and haemorrhaging (“brain bleeds” and such).
- My average counts are generally below 80 but can drop to single digits or a lab-count of 0 on occasion, especially when I get sick. And, on rare occasions, I might get close to the low-end of “normal”.
- ITP is classified as a rare autoimmune disease.
This story is about my personal journey. If you want more information on ITP, check out the following links:
A selection of other “awareness” posts that you might enjoy:
- My ITP Story: My personal story from diagnosis (1995) and remission to relapsing and getting on with it
- Living and Coping: My personal story of living and coping with ITP
- No Spleen to Vent: My personal story of the decision process for having a splenectomy (1996) and reflections of that choice 20 years later
- A sister’s view: My youngest sister’s take on my ITP and how she has viewed the condition over the years
- The ITP tag: All posts that mention ITP – either as the primary topic or as an aside
Right! Let’s get to the personal narrative!
TL; DR: I have been mostly isolated during the pandemic but have never had COVID19. The isolation (and avoidance of other infections) means my platelet counts have been higher than my normal.
This year, I want to talk about my experiences with ITP as it relates to the COVID19 pandemic. Whilst much of my early anxiety related to the global health concern has subsided, I am still very aware of the risks that COVID19 poses to my health – in part because of ITP.
If you are on any of the ITP Facebook groups or other forums, you have probably seen a lot of conversation around ITP and COVID19. The Big Questions relate to ITPers’ experience with having COVID19 and whether they should get the vaccine (and which vaccine is best). To a lesser extent, people ask if ITP itself puts them at risk for contracting COVID19 or the seriousness of the disease. I cannot answer these questions directly for many reasons (not the least of which is that I am not a medical professional) but I do touch on these questions below.
This is a long post, so I have divided it into four broad sections that you can jump to: (1) A general overview of my health and why I decided to isolate during the COVID19 pandemic; (2) the impact that my isolation has had on my health during the pandemic; (3) a short aside about getting the COVID19 vaccine; and (4) my hopes for ITP in a post-COVID19 world.
My disclaimer, again: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own experiences with idiopathic thrombocytopenic purpura (ITP). It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.
Why I isolated during the COVID19 pandemic
One of my worries about COVID19 and ITP has been as “simple” as my platelet counts – and the knock-on effects of having a very low count. I know from experience that my already-low counts drop even lower when I have a viral infection and that even the common cold can leave me black and blue – and sometimes hospitalised. When it gets to that point, I might need medical treatments that suppress my immune system, making me even more vulnerable to infections.
The more serious the infection, the worse the ITP reaction, which means a greater likelihood of medical interventions – including hospitalisation. And if we compare The Common Cold to COVID19, I think it’s fair to say that COVID19 would be a more serious infection!
On top of that, I don’t have a spleen. It was removed in 1996 as a treatment for my ITP. The spleen is a key part of the immune system and, whilst you can live without it, its absence means that you have an increased risk of developing serious infections, such as pneumonia. And although I have never had problems with pneumonia in the past, I am not interested in testing my body’s ability to fight it, or COVID19, off.
To be clear, ITP and asplenia do not, in themselves, increase the likelihood of contracting COVID19. Although some ITP or post-splenectomy treatments might lead to an increased risk. However, in my case I know there is an increased risk of moderate to serious complications if I contract COVID19, especially given that simple infections can cause a drastic drop in my platelet counts and that can lead to further complications that lead to further complications that lead to… well, you get the point.
This is all in addition to my genetic kidney disease, Polycystic Kidney Disease (PKD). Again, PKD doesn’t increase my risk of contracting COVID19, nor does it pose a primary risk for serious complications. However, it does add to my overall risk factors. Indeed, when calculating my “COVID19 age*” I am 85+, which is the “highest risk” band. (Without my pre-existing conditions, I would only be 42 years old, as you get to subtract 5 years simply for being biologically female.)
When taken together, these things mean that I am considered “clinically extremely vulnerable” and was on the “shielding list” in the first year+ of the pandemic. Indeed, I had begun isolating at home before the first lockdown and have remained mostly isolated ever since. And although I am working to (slowly) re-join society now, I am still aware that COVID19 still poses a risk to my health. That means that, despite participating in The Real World a little more these days, I will continue to be cautious and will spend most of my time alone, at home, and/or socially distanced from others.
Repeating the disclaimer, again: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own experiences with idiopathic thrombocytopenic purpura (ITP). It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.
The benefits of isolation on my health
Despite my medical conditions and my “COVID19 age”, I am relatively “healthy”. I am well within a healthy weight range and have excellent blood pressure (hypertension and obesity adds to the COVID19-age) and my lungs are strong. I am a regular runner and hillwalker and I generally maintain a healthy diet**. I am also very privileged to live in a rural setting with easy access to nature – and to grocery deliveries! And I have been working from home this entire time, with no break in my income. That, in turn, means I can pay extra for the delivery of things that I want and well as those things that I need. It also means that I am not experiencing the stress and anxiety that a lack of financial security can bring.
Combined, that relative health and my personal situation mean that I am in a better position to avoid situations that might increase my risks of contracting COVID19 – and even The Common Cold. And that is a very good thing for my ITP.
For example, before the COVID19 pandemic, my average platelet count was a nice, stable 60-80 – mostly on the high-end of that spectrum. However, over the last year and a half, my counts have been 100+. That is still lower than the normal range, but it is the first time I’ve had consistently “high” platelet counts. Whilst no one can say for certain, because ITP is a bit tricky, the working theory is that it’s because I haven’t been subjected to the everyday colds and other infections that I would in “normal times”. In that sense, you could say that COVID19 has made me quite healthy!
And so, as I shared last month, the decision to isolate and work from home has also meant that I have maintained, and even improved, my fitness levels. The additional running and hillwalking are more beneficial for my kidney disease than for my ITP. However, from a whole-health standpoint, I find that I can better cope with the frustration of chronic illness like ITP when I am taking care of my mental and physical health.
And another time for the disclaimer: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own experiences with idiopathic thrombocytopenic purpura (ITP). It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.
A short aside about the COVID19 vaccine
So, what about ITP and the COVID19 vaccines? This is where things get tricky for a lot of people. Because vaccines can trigger ITP (in the short term or as a chronic condition) some people with ITP are hesitant to get vaccines – any vaccines. And we know that there have been instances of acute ITP from the COVID19 vaccines, but the risk of vaccination-induced ITP at the observed rate is far lower than the risks associated with COVID19 itself (including ITP).
Personally, whilst I experience a platelet drop when I have a cold, I have never had any (noticeable) issues after vaccinations. This means that I didn’t hesitate when it was my turn for my COVID19 vaccination (Oxford/AstraZeneca). I figured that if there was a drop in platelets, it would be far less drastic than COVID19. And whilst I didn’t have platelet counts done just before or after my vaccines, I did have counts done within a couple/few weeks (depending on which dose). In each case, my platelets remained stable (around my COVID19 average of 100).
I did notice a few random petechiae about 3-4 days after each dose of the vaccine, however, they vanished in a day or two. It certainly wasn’t enough to call for worry or medical intervention and there were no other bleeding or bruising symptoms. And when it’s my turn for a booster, I will be there with my sleeve rolled up! [Read more about my vaccine experience here.]
A disclaimer is especially warranted when talking about vaccinations: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own experiences with idiopathic thrombocytopenic purpura (ITP). It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.
My hopes for ITP in a post-COVID19 world
That was all a bit of a ramble, but I think I’ve touched on The Big Questions mentioned at the top of this post. So, I’ll move on now…
It is fair to say that my life has been very different these past 18+ because of my ITP and my asplenia. Or, rather, because I have been shielding myself from COVID19. And I know everyone’s lives have been different in one way or another – regardless of their health or their levels of isolation.
And I find myself wondering if some of the differences will carry forward in a post-COVID19 world when we eventually get there. There are countless changes that I can think about for society as a whole (good and bad) but I will stick to two hopes for changes that might affect ITP.
My first hope relates directly to ITPers – especially those who, like me, experience problems with their platelets with a common cold or other infection. Before COVID19, I struggled to get people to understand the importance of staying home when they’re sick. “Healthy” people often shrug off colds as “just” a cold and carry on with their normal behaviours spreading germs as they go. (Colds, influenzas, conjunctivitis – you name it.)
I hope that we have learned (or re-learned) the importance of staying home when we’re sick and/or wearing a mask when we can’t. It would be great to normalise masks in public during cold and flu season – for the healthy and the sick. It would be even better if we could ensure that all people (regardless of industry type) had the ability to stay home when they’re sick, without fear of losing their job or a day’s wages.
My second home relates to understanding by non-ITPers. Not just about spreading infection, as mentioned above, but about ITP. There has been a lot of talk (fear-driven or otherwise) about ITP and vaccines and/or COVID19 and the concerns that the infection or the vaccine might cause a drastic drop in platelets. Because of this, “normal” people have now heard about this platelet phenomenon from the mainstream media.
I hope that having heard of ITP in this way, it will be easier to explain to people (1) what ITP is and (2) that virus infections can affect platelets in people with ITP. Relatedly, I am hopeful that this might lead to more research related to ITP. (We can always hope, right?)
And so, after more than 18 months of (near) isolation, I am slowly re-joining The Real World. Next month, I will be starting a new job as a university lecturer*** and am planning (hoping) that I will be able to do some in-person teaching. I am nervous and a little anxious about it, but I am also hopeful that it will all be OK – with several precautions including social distancing and masking.
I am taking these steps cautiously and with the understanding that I might need to take a step back at some point. This is, in part, because I am also a little nervous about re-introducing myself to everyday infections and I expect that my platelet counts over the next weeks and months will reflect that. Or, maybe my body has just settled into a new normal… (As I said: We can always hope, right?)
And I will end it there. Thank you for reading. And please, stay safe and healthy!
To my fellow ITPers: I would love to hear about your experiences with ITP and COVID19 – contracting it, vaccinating against it, or its impact on your general health (or anything else you’d like to share). You can comment below or send me a private message.
To my other readers: As always, I would love to hear your thoughts, too! And I am also happy to answer questions about ITP.
One last for my disclaimer, just to be sure: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own experiences with idiopathic thrombocytopenic purpura (ITP). It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.
* The COVID19 Age calculator is based on an evidence-based methodology; it is updated as more research is published. It is not a “perfect” analysis of an individual’s risk levels and clinical judgement should be considered when necessary.
** By a “generally healthy diet”, I mean that I eat a lot of fresh, homecooked meals, a lot of fresh fruit and vegetables, and some (but not too much) “junk food”. The basic aim is to eat mostly “healthy” stuff so that I can enjoy the “bad” stuff in moderation. Life is about balance, after all.
*** I still haven’t made a “formal” new job announcement on JustFrances.com, but regular readers might have noticed a couple of hidden mentions. Don’t worry: The formal announcement is coming soon!