Thought I would share a summary of what has recently happened to me …
Since the month of March, I was feeling more and more exhausted, and did not know why. I was also increasingly out of breath from very little exertion – like just walking across a room! Unbeknownst to me, my auto-immune system was attacking my red blood cells, and was killing them.
The way this progressed is a case study in incompetency …
- In October 2018, the rheumatologist I was seeing told me my red blood cell count was 132(this is within the normal 130-140 range)
- When I saw him in March, he showed some surprise that it had gone down to 112,but did not seem alarmed and simply said “we’ll keep n eye on it”
- He did send a note to my family doctor about it, but she took no action. I actually had to finally go see her to try and find the cause of my exhaustion. That is when she clued in to the red cell count results she had seen from him and had me go for another blood test to see where it was at now. At that point the number was at 73.
- That meant a 40 point drop in just 2 months! This was no ordinary anemia – something very strange was going on!
- But even then, my GP did not react immediately like she should have. When she got the “73” result, she had her receptionist call me and book an appointment for 5 days later, so she could tell me this in person! Turns out, those 5 days could have lead to disaster ….
- When I went to see her, 5 days later, she said that what was happening could lead to total heart failure, so she was urgently referring me to a haematologist.
- The haematologist received my file the very next morning, and had me come in immediately. My blood was tested again, and in the space of a week, the number was now 59! She told me in no uncertain terms that I had to get to emergency immediately, because I needed an urgent blood transfusion to stop the destruction.
- It seems that 70 is the critical cut-off point – anything below that can lead to fatal results. By the time I got the first transfusion in the ER at the hospital, my number was in the low 50s! I had no idea that, by then, all my organs were getting less than 40% of the oxygen they need to function, because of the extremely low red blood cell count.
- While in hospital, I was followed by 3 teams: Internal Medicine / Haematology / Rheumatology – all trying to determine exactly why this happened. I had transfusions and have been given some very powerful medications that I have to take for a while. The transfusions themselves were very risky for me because they had to match the anti-bodies in my blood, and there was some trouble finding the right blood. The wrong anti-bodies would have spelled disaster. However, the right anti-bodies could also spell disaster, because they could have joined up with mine and started to multiply exponentially, which would have spelled mega disaster! So it was an iffy proposition, but the only way to try to turn things around.
- I spent 4 days in the ER section, which was pure hell. The chaos and activity around me nearly drove me over the edge, and I did not sleep even 5 seconds during all that time. I did threaten to just leave and go home, but they warned me that such a decision would be fatal, so I stayed and continued to beg to be moved to a room. That finally happened later that day.
- I was released from hospital last Thursday evening, after nearly 11 days there. I am still pretty weak and shaky and facing a long period of recovery, but at least the crisis is behind me. I cannot believe the number of medications I will need to take for the next while, in order to re-stabilize my immune system and make sure it does not return to killing off my red blood cells.
- At least now I know what symptoms to look out for if things start to get worse again. I had no idea how close I got to total heart failure or coma, until they kept telling me that over and over in Emergency!
- For the foreseeable future, I will be followed by a haematology team on a weekly basis, so they will surely keep an eye on things, checking my blood levels constantly, so things will be under control.
- The recovery promises to be a slow one (so they all say) but I have taken the first steps and it will be all uphill from here on. All the meds are the biggest challenge – I have never taken more than one or two, and now I have an arsenal of medications to deal with (here’s hoping the lists of side effects do not rear their ugly heads in my direction). Until my immune system rebuilds itself, I also have to avoid contact with anyone who has the flu or any kind of infection, so that will be a challenge considering all the hospital and doctor visits in my near future.
- Oh, the joys of inheriting an auto-immune disease from my Dad! My Dad had an auto-immune disease (rheumatoid arthritis) so I seem to have inherited the auto-immune gene from him, but in my case it attacked the red blood cells instead of the joints.
- So, here I am. Back home. Happy to be out of hospital, but a bit frustrated that I really can’t do much because the whole things has totally exhausted every ounce of energy right out of me, and it will be some time before that changes.
- So that is the story. Goes to show that you never know just how close you can get to the brink. I certainly was lucky this time! But I confess that I will be looking to change family doctors and rheumatologist – looking for someone who reacts in a more timely fashion to things going this whacky.