Christmas and New Year have snuck on by, and we are now in February. It’s been a while since I last wrote, some of which is the perpetual children related time issues, some of which is waiting for results.
Anyway, I now have the results courtesy of the professor. I called up four times for them, emailed twice and when that didn’t work out finally texted my consultant who I haven’t seen for five years, and he very kindly text me the results and then sent them by post. Probably not how the system should work but hey, at least I got them.
First the good news. My white cells have increased only marginally, three points, over the year. This is in line with my graphs and so as expected. Currently they sit at 33 or 29 point something for the lymphocytes. At this rate treatment for the white cell issue is still a number of years off.
Now, for those of you who read my results blog last year, you may remember my platelet count dropped to just under normal (150-440). It has been going down for the five and a half years I’ve had the condition, and has decreased from 240ish. This is caused by the spleen being larger. It’s normal job is to clean up old blood and keep you fresh. When it gets larger it gets greedy, and starts to take newer and newer blood to destroy, keeping lots more inside it. This leads to a depletion in the rest of the body, which is where I am.
So the results show I’m at 136. This is a condition in itself Thrombocytopenia and this can result in various things at a severe level (under 50). Like spontaneous bleeding and unexplained bruising. At the less severe end (where I am) it has limited impact, but can cause fatigue and general unexplained tiredness.
|Lymphocyte Count||White Blood Cell Count||Platelet Count|
|Average||1 to 4.8||4 to 11||150-440|
This is actually something of a relief, odd as that sounds, because I have been super tired for the last year or so, and with two kids under three, just assumed I was being whiny. Turns out I am more tired than normal and this is probably why. It means I can now try and work around it without feeling like a major wimp.
The treatment is obvious, in terms of nuclear option. If I get the spleen removed the red cells will go back up to normal, and stay there. This won’t be a problem anymore (in all likelihood). Downside is I will have to take antibiotics for the rest of my life, and some places would be a challenge to travel to. Also major surgery always comes with risk attached.
So I would prefer to long it out for a year or two before I have to do something but that means dealing with the tiredness.
I am going to try and resolve elements of this through diet. I talked about this last year, but now I do really have to do it. I can switch to more red meat, and leafy vegetables, like kale and broccoli or similar. I am also going to try and get more sleep by strategic layins and earlier nights. This is a short term measure but should help in delaying surgery. If it doesn’t help then I will likely get my spleen whipped out (easy as that) in the next year or so.
Anyway, that’s where we are. A mixed bag of results, but entirely in line with my graphs.
Thanks for listening and being there for me when needed. All the best until the next post, and I will try and get something out about treatment (maybe spleenectomy) in a little more detail.
And for those of you who made it to the end, a Christmas snap of the kids and two of their great grandparents.
Sue Foden said:
Thank you. I get more information from your blog than from whatever consultant I have on the day of my appointment !!!
We share the very same condition although I am 2 years down the line.
I have recently changed my eating habits and exercise most days. This has helped with my fatigue and I do sleep better.
I wondered if you have any pain in the spleen area as I have some discomfort.
I do indeed, but only usually when I have lifted too much, or run somewhere. I have had it intermittently otherwise. Its not terrible though or consistent, so I am happy to live with it.
I’m glad you find this helpful, thats why I do it :). I have done a lot of research on this all, but am not a doctor. I do find though, they sometimes know so much that they don’t know about specific conditions. I often find myself explaining it to the consultant when I have my appointment, and certainly to my GP.
How are things with you? All going well?
Anna Mary Ellerbee said:
Ditto to the above comment. I always learn from you!!! Would you consider taking Rituxin instead of having your spleen removed? From what I have learned from others it reduces the size of the spleen and helps platelets increase and all other counts go more toward normal again. Just wondering???
Thrilled that you seem in control and able to live with the numbers. Yes, it does help to know why we are tired and that we are indeed not wimps.
I follow your journey with interest and love. Pulling for you! Anna
Anna, happy to help :).
Well from what I understand Ritu has a 95% success rate and allows you to go into remission for a good number of years. However every time you use it you are building the chance it will become less effective. So if I can start that as late as possible, and whip the old spleen it first, it means I can rely on that drug that much longer.
Ritu would sort out the white cells as well, but this I want to hold until later, as they don’t seem to be bothering me.
Ah, so you get tired too. It’s a bit of a pain, but ok, mostly!
Thanks for keeping in touch and I hope your journey is going well as well!
Reach out if you need anything 🙂
Csrol Peebles said:
I was never told to take regular antibiotics (splenectomy in 2013) it is not recomended in Canada. And in my case it would be a problem as I have to be careful as I had CDiff after my surgery. I was given IVIG treatments for a full year following surgery and am now getting them again. I do agree travel to areas with high infection rates could be a problematic.
Hmm, that is interesting. I am getting varied feedback on the antibiotic thing, which was one of my main objections to getting the spleen whipped out. I’ll look into it more, thank you for the comment and hope the treatments do their jobs!
Glad you are still doing well. My platelet have held steady around 140 but my whiteblood cells keep going up. My doctor says he doesn’t care about that thou. Why would you take out spleen first instead of doing the rituximab? ok just read your answer ro my question and it makes sense the only thing is I read and I may be wrong maybe you can do some research as well that getting your spleen taken out at least in one study resulted on sometimes comming back stronger the disease when it started back up. Maybe do some research and let me know what you see I am hoping to hold out some years before treatment but I do get fatigue a lot but I mitigate it a lot with the gym when I am going to the gym I am somebody else.
Best to you Marcus and all the readers on the same boat.
Jorge from Miami, 34 a year and half since being diagnose