In my last post I mentioned that I had received some exciting news, I didn’t want to go into detail because I couldn’t quite believe that it was true. I don’t think I really believed it until I was there and hooked up…
Last week I officially joined the ranks of the Australians who receive regular infusions of a blood product to help improve their health. There are thousands of Australians who require regular infusions of human blood products, to help treat many different, and often serious conditions. 1 in 3 Australians will require blood in their lifetime and according to the Australian Red Cross Blood Service; “Currently only 1 in 30 people in Australia give blood” but “Every week Australia needs over 27,000 blood donations.” Why do you think people are so reluctant to donate blood? Sure there are a lot of people who cannot but there are many more who can.
It is often assumed that the majority of donated whole blood is used to save the lives of people involved in accidents and emergencies such as surgery etc; I know I used to think this, but it is not the case. As you can see from this handy infographic by the Australian Red Cross Blood Service, only 2% of whole blood is used in trauma and less than 40% is used in surgical and other emergencies – most of it is used to treat people with serious illnesses. According to the Australian Red Cross Blood service; “Modern processing techniques mean that a single (whole) blood donation, when separated into its components, can help at least 3 different patients and contribute to making up to 22 different products (including potentially life-saving immunisations for chicken pox, hepatitis B and tetanus).”
But that is just for whole blood, did you know that plasma and platelets can also be donated? Plasma and Platelet donors have a faster recovery time because the red blood cells are returned through apharesis, this means donations can be scheduled more frequently, if you feel so inclined (please do!). Platelets help blood clotting in patients who are at risk of bleeding due to low platelet count or non-functioning platelets – this can occur in people receiving chemotherapy, bone marrow transplant, trauma, major surgery, liver disease or genetic conditions. Plasma donations can make up to 18 different products, and is the most versatile blood component – this is why it is often referred to as liquid gold. It can be used for treating burns, trauma, blood disease, autoimmune conditions, immune deficiencies and other conditions.
I will be receiving monthly infusions of IVIg, Intravenous Immunoglobulin, which is extracted from plasma donations and used to treat specific immune deficiencies and autoimmune conditions, it’s pretty exciting stuff. IVIg will help my immune system function normally – which will hopefully mean that my body can get a break and start healing itself. This will hopefully mean my Dysautonomia and other conditions will improve. Each infusion takes around 5 hours so I take along some things to keep me occupied while it goes through. Sitting around and watching Hart of Dixie (or whatever else I take with me) for half a day every 4 weeks is hardly difficult (even if I have to travel across town to do so) and a more than acceptable toll for receiving a product that will change my life. Did you know that donating blood takes 5-10 minutes? Of course there are admin things to do but the whole process takes less than an hour and could easily be done in a lunch break.
There are currently 504,000 regular, voluntary donors in Australia and I am proud to say that I know and am related to some of these wonderful people – thank you! And I can really say a personal thank you as the IVIg I receive (brand named Intragam) is produced by the Australian Red Cross Blood Service and comes from Australian volunteer donors – the other two brands of IVIg come from a mixture of European and American paid and unpaid donors.
Unfortunately due to increasing demand and decreasing donations we have a short supply of IVIg in Australia and have not been able to rely on Australian plasma donations to meet the demand for a few years now. This means our National Blood Authority has to import some of it from America and Europe, where there is a financial incentive to donate – but it is still a finite resource. As a result of this, the criteria for clinical use of IVIg is very strict and only those meeting the criteria and whose health is likely to improve with the use of IVIg are approved for funded use. The criteria are so strict that many people who could potentially hugely benefit from treatment with it are ineligible even if they have conditions that are on the approved list.
I have a few wonderful friends who just miss out on meeting the criteria for treatment and it breaks my heart – my journey to gain approval has been long but I am here now, I wish they could be too. Unfunded use is possible for some other conditions or variations of conditions that don’t quite meet the requirements but it is very expensive to access privately (several thousand dollars per dose, with doses required monthly or more), partly because only imported IVIg can be used in these cases – home grown IVIg is only available for use by patients who meet the criteria for funded use, like me.
I have an odd immune condition that has only recently been diagnosed, I don’t even know if it has a name, it probably does but at my last appointment with my immunologist, when I got the diagnosis, I was so focused on learning as much as I could about it that I forgot to ask! About 6 years ago I was diagnosed with IgG subclass deficiency – meaning that my body wasn’t producing enough of one of the important immune products so it had trouble fighting off infections by itself. I have had this since I was a child and have had chronic and recurrent sinusitis from a young age. I don’t believe the testing was available then to identify it – instead I had sinus surgery to help improve the drainage and long courses of antibiotics and cortisone. This has been my life for the last 26 years; infection, antibiotics and a slow recovery, over and over again, sometimes up to 5 times a year. I have been hospitalized because of it several times and have had infections that lasted for up to 3 months and required multiple courses of different antibiotics to get rid of.
These frequent infections lead to my body becoming overwhelmed and developing Dysautonomia and Chronic Fatigue Syndrome. It meant I had to give up my job as a nurse – in hindsight, a hospital was pretty well the worst place I could work, but I didn’t know about my immune issues at the time. It took 3 different specialists investigating it and 6 years to finally find out the real problem; you see my IgG subclass deficiency wasn’t bad enough on its own to cause all the problems I was having. By some kind of fluke I ended up seeing a wonderful immunologist who worked at one of the two hospitals in Melbourne that had the facilities to conduct the test that would finally show what was going on.
It turns out that my neutrophils, the most prevalent type of white blood cell, cannot digest bacteria. White blood cells are responsible for clearing up infection after other immune products mark them as being foreign and dangerous. The White blood cells identify the markers, eat the foreign cells and digest them, turning them into harmless cell products. To do this, the white blood cells have a cell structure called a lysosome that contains digestive enzymes. For some reason my neutrophils can’t make an active form of this digestive enzyme by themselves – this, combined with low levels of IgG mean my body is pretty bad at identifying and breaking down bacteria when I get an infection and rely on antibiotics to do so.
Apparently it’s not a common condition to be born with, it usually occurs in people who are undergoing immunosuppressive therapy like chemotherapy etc so it’s all a bit odd. All I know is I had a sinus infection for 3 months that I could not get rid of and required full courses of 2 different types of antibiotics and an extended course of a third one to finally get rid of. Then after starting IVIG I came down with another sinus infection that only lasted 2 weeks. That’s pretty amazing and gives me a huge amount of hope for the future.
Receiving blood products is not without risk, screening for viruses and other things is becoming more and more advanced and Australia has one of the safest blood supply systems in the world but there is still so much we don’t know about the human body and things that can affect it. Throughout the history of blood transfusion there have been people who have contracted illnesses carried in the blood they received and there is always the chance that something unknown and so far unidentifiable could be transferred through infusion. For me and thousands of other Australians, it is worth the potential risk – being well and getting my life back thanks to the thousands of Australians who donate plasma is invaluable to me. Having this resource available to me means more than I can say – I only wish it were available to more people, but that cannot happen unless the supply significantly increases.
Last year the Australian Red Cross Blood Service celebrated 100 years of service and saving lives in Australia, check out their Facebook page for some beautiful images, inducing the gorgeous feature image for this post of one of the first mobile transfusion centres in Australia. Each blood donation saves 3 lives, you could save 3 lives in your lunch break and you get some delicious snacks while you’re doing it. Are you eligible to donate? Are you interested in donating? Check out the Australian Red Cross Blood Service website to find out more.
And thank you again to anyone who has ever donated xx
Images in this post are sourced with permission from the Australian Red Cross Blood Service Facebook page – thank you!