As I'm sure you know, my treatment has been going well. I can't even remember when my last transfusion was. Prior to today I was down to blood tests once every 2 weeks and a clinic appointment roughly every 4 weeks.
I was in today for both the blood test and clinic. During my clinic appointment, my blood results came through: 124 for Haemoglobin, 81 Platelets and 2.44 for my neutrophils. That's a huge improvement since I first got taken to hospital several months ago on April 23rd with Haemoglobin at 43, platelets at 3 (I think) and neutrophils at 0.2ish. My counts still need to improve but I'm now pretty close to normal. My bone marrow results when I first had the biopsy were just under 5%, in relation to someone my age who would have around 80%. Mine are now at 30% which is great.
The doctor in my clinical appointment stated how pleased he was with my treatment. The next time I have to go to hospital is in 8 weeks!!!! 8 WEEKS! How mad is that?
I'm absolutely delighted with how well things have been going, and I'm finally used to not having my Hickman Line anymore. As I am clearly on the mend (touch wood), the need to continue with this blog has diminished. I expect and hope, that this will be my final post.
Thankyou to everyone who has been reading, sharing, visiting and wishing me luck. It's been really appreciated and I look forward to finishing this bizarre year on a high. So unless I relapse or something else grim happens, I won't be posting here again.
I will finish with some pictures to admire from this saga. Before I end, I would like to state that I will never be able to thank Kings Hospital and the Great British National Health Service enough.Without them I don't think I would be here now.
As much as I hate to say it, I couldn't be more thankful to my mum. She has refused to let me go to hospital on my own. I think I've been without her once in all these months. Cheers.
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| Being taken to hospital on April 23rd feels so long ago now. |
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| Goodbye my transfusion holding friend. |
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| Look how pale I was. |
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| Throwback to being scared of platelets. |
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| Thank you to those who donated blood. |
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| Remember when my sister let me down and wasn't a bone marrow match? |
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| That was a fun day. |
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| Form an orderly queue ladies. |
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| Pre Hickman Line surgery |
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| Post Hickman Line surgery |
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| Fairly self explanatory... |
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| My specialist nurse, Nana. Absolute hero. |
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| When I found out I had a heart. |
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| ATG treatment. |
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| I'm so funny it hurts. |
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| Released from hospital!! |
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| Aint no time like Blood time. |
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| Had to put a Graduation picture in. |
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| Hickman Line removal day! |
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| No more line. |
Thanks for reading. Goodbye :D
As someone at the start of an AA journey your blog - particularly this post - has been an absolute inspiration to me. Thank you so much and I hope that you continue to go from strength to strength. All the best, Kate
ReplyDeleteThanks, I'm glad that this has been able to help in some way. Wishing you all the best on your journey :)
DeleteHi Adam,
ReplyDeleteGlad to hear you're on the mend. Can't tell you how much this blog has done in giving me confidence before starting my ATG. Especially the snapchat screenshots and 'blanter' :-) hope you continue to get better.
Cheers,
Lawrence
Cheers, so far everything is continuing to go really well. I hope your treatment goes well too. I didn't have too many issues with the ATG apart from how long the transfusions are haha. Good luck and thanks again
DeleteHi Adam thank you for sharing your story. You posted your last post on the 26th of October and I was admitted into hospital on the 27th after a routine blood test. I'm happy to hear everything is going good with you and your counts. It's been almost 3 months since I started my atg and cyclosporine treatment since just like you my sisters were also useless lol. I haven't seen any results yet. When did you start seeing an increase in your numbers ?
ReplyDeleteHi, I had my ATG at the beginning of June. Originally it wasn't clear that the ATG was working but soon after 3 months my numbers started changing. They were however quite erratic. My red blood cells were the first to start changing, platelets were the last. The ATG for me has been very successful and I am back to having a very active life. Let me know if you have any other questions :)
DeleteAdam I am so happy to read ur story and this comment also about cyclosporine, I was diagnosed with AA 28 years ago when I was 8 years old and at that time I was thr only survivor of this illness, no one matched me and I didnt respond to any of the treatments, I was in protective isolation for almost 2 years and my mum n dad were told to take me home that I was going to die I may as well be in the comfort of my own home, they then offered that we try cyclosporine although it had never been trialled for this illness and as u can tell it worked, when I was 17 I worked in a biotechnology department and I was typing a newsletter that stated cyclosporine was now just beginning to be trialled I couldn't believe it as it saved my life so many years before. It's comforting in a way to know thathat it is now used to help others recover from this illness x clare hardie
DeleteHi Adam - I hope you are still doing well! Thank you for blogging about your journey as its been so comforting and inspiring to read.
ReplyDeleteToday will be day 3 of 5 on the ATG for me, after being diagnosed with Moderate AA just over three weeks ago up North in sunny Oldham :) I'm 35 so not as much of a spring chicken as you!
So far, so good, no reactions. Just missing being at home with my husband and my kids (age 3 and 6 - not easy!) but being in here, however hard, at least means I can rest - I felt too exhausted to be at home in our mad house on the days I was allowed back before being admitted for treatment.
You've made me feel hopeful for the future - it's a scary time to suddenly get plucked from normality and put into solitary confinement (albeit very lovely with free wifi and a big TV��) with so much medical info to absorb, lots of ifs, buts, maybes (not to mention the occasional mention of bone marrow transplants!)
I' ve ended up with a PICC line in my arm as my platelet count was absolutely rubbish last Tues on Hickman line day but I might be getting an upgrade in next couple of weeks all being well I'm told! Lucky me! ��
Ciclosporin begins on Tuesday and so the journey into remission begins...trying to be as positive as I can and you've helped with that. I agree the NHS is the most amazing thing, how lucky we are to have been offered this treatment.
Looks like you have been doing some awareness raising too and that's something I would like to do as well. Lots of friends have signed up as blood/ stem cell donors this week and Anthony Nolan Trust looks good too, I need to find out more information on them.
Good luck with everything and I hope by now you are off teaching some where exciting.
All the very best - here's to all long, healthy, happy life ahead!
Laura X :)
Adam I am so happy to read ur story and this comment also about cyclosporine, I was diagnosed with AA 28 years ago when I was 8 years old and at that time I was thr only survivor of this illness, no one matched me and I didnt respond to any of the treatments, I was in protective isolation for almost 2 years and my mum n dad were told to take me home that I was going to die I may as well be in the comfort of my own home, they then offered that we try cyclosporine although it had never been trialled for this illness and as u can tell it worked, when I was 17 I worked in a biotechnology department and I was typing a newsletter that stated cyclosporine was now just beginning to be trialled I couldn't believe it as it saved my life so many years before. It's comforting in a way to know thathat it is now used to help others recover from this illness x clare hardie laura I posted this reply above and then read ur comment so glad to read u r doing well, keep strong u can do this xxx
DeleteHey Man--just stumbled across this now. Got diagnosed with Aplastic Anemia and PNH in 2014 and I was somewhat relieved to find that someone has handled it with such humor and good spirit as you have. My doctors tended to hate my constant jokes about knife juggling and buying platelets on the dark web.
ReplyDeleteStill hanging in with 62 platelets and some solid (compared to early diagnosis) WBC, HBC, RBC, and Neutrophil counts. Anyway, I hope you're doing well, sir. Cheers! Jack DeYoung--jdy2323@gmail.com
Hi Adam, I was diagnosed with AA just last Friday after being admitted to the hospital 4 weeks ago for a week whilst I was monitored and given a bone marrow biopsy. I am due to start my ATG in a couple of weeks. Went in with 65 haemoglobin, 6 platelets and 0.1 neutrophil counts after 29 years of being fit and healthy! Your blog and positivity i can imagine have helped many overcome the fear of the title of Aplastic Anaemia as anything you gooogle about it is mainly negative. You are an inspiration to anyone reading this and show them light at the end of the tunnel including myself. I was just wondering as your last post was back in 2016 on how you are doing now? I hope that the remission was a 100% success and that you are now living a normal, healthy life.
ReplyDeleteThanks again. Jamie
Hi Jamie. Sorry to hear you were recently diagnosed, I hope the ATG treatment has been going well for you so far? I'm pleased to hear that the blog has helped. I've been fine for the past 5/6 years, I have unfortunately had a reaction to the covid vaccinations, which seems to have triggered a relapse, which started a couple weeks ago. Doctors had told me back in 2015/16 that I can't have the likes of flu and other travel jabs as it can cause relapses, but obviously with the seriousness of COVID, it was deemed that the positives outweighed the risks. Unfortunately in my case, it hasn't worked out there, so I would advise to of course be careful.
DeleteHi Adam. My son has just been diagnosed with AA. He is only 11 and struggling a bit with the central line and just getting to grips with everything. As someone who has been through it would be great to hear from you with any words of wisdom. He is a huge footy fan and really sporty as I can see you are. My email is brown.claire15@gmail.com
DeleteThanks Claire
Hi Adam, I am very pleased to hear that the past few years have been problem free for you. That is terrible news that you have relapsed from the Covid vaccination and I hope they resolve this as quickly as possible for you. Will this require another ATG treatment for yourself? I had my ATG last week Monday-Thursday and then started the cyclospoirine on the Friday. I had a very mild skin reaction to the ATG (hives) on the first day, so they just administered it over 8 hours instead of 4 the next day and I was fine. The past few weeks I've been admitted to hospital for temperatures and small infections more than I have been home due to 0 neutrophils. Now I'm still in hospital and providing that I am temperature, side effect and infection free by the end of the week they say I may be able to go home. Its just the waiting game for myself now as you are fully aware of. I really do hope that your issue is resolved nice and quickly for you to resume your normal life again, as mine seems to be creeping further into the distance each day haha. Positivity is key though!
ReplyDelete