Meeting My Donor

When I was getting ready to have my transplant, I always wondered when I would eventually get to meet my donor - the person whose selfless generosity has given me another chance. I was always curious, but didn't want to dwell too much on it as so much had to go right before I would be in a position to meet him.
In the UK, the Anthony Nolan Trust and the NHS do not facilitate contact until two years have passed after the transplant. I don't know the reasons for this, but I presume it is to allow things to progress to a suitable outcome. Some countries do not allow donor contact ever - seems draconian to me, but perhaps there are good reasons for them to be so strict.
Well, last February was the second anniversary of my transplant, so I filled out the forms to initiate contact. I really wanted to thank the person who donated and find out more about him - who he is, where he lives, what he does for a living and what inspired him to become a donor.
I received his details in March - an email address and a postal address. So, more information was finally coming through! Originally, all I knew is that he is a young German man in his twenties. Now I found out he lived in north-west Germany. I needed to know more, so I procrastinated a little and eventually sent him an email in April introducing myself. This began an incredible exchange of emails where we got to know more about each other.
Eventually we agreed it would be nice to meet, and we chose the west of Ireland in August. We love to go there on our holidays and I couldn't think of a nicer place to meet my new brother and introduce him to my family.
I was very nervous the day we first met him and his lovely wife. I was worried about him driving across ireland by rental car, I was worried he wouldn't find his B&B in a remote part of Ireland and I was worried about how I would react when I met him. I am delighted to say that our initial meeting was a very happy moment. I gave him and his wife a big hug and thanked him for saving my life. It was an intense, but wonderful moment. In fact, all my family crowded in and gave big hugs! It was a special time for all of us.
That began a wonderful few days spent on the west coast, switching between visiting spectactular scenic places and discussing our experiences of both sides of the transplant (as a transplant recipient and also as a donor). It was especialy interesting to hear how he went about donating his stems cells and what he went through. It wasn't very straightforward for Mathis, as he had to inject himself with hormones for a week before travelling to Cologne to have the stem cells extracted. It was all worthwhile and I will be forever grateful - Mathias is happy that he saved my life and I am also happy that he saved it!

This pic was taken at the Cliffs of Moher.......

British Transplant Games 2018

All the way through this journey with Lymphoma, once I knew I would need a bone marrow transplant, I thought it would be good to take part in the Transplant Games that are available for transplantees (British, European and World Transplant Games).

Somehow I always thought I would get through the treatment successfully and be well enough to run again.

Well, the time has come! The British Transplant Games are on this weekend (August 2 - 5) and I am taking part with the Irish Kidney Association's team (Team Transplant Ireland).

I'll keep you posted......

[Update Monday, August 6th] - It was fantastic! I was amazed at how it was such a big and well organized event. Over 1000 transplant recipients (mixture of bone marrow, heart, lung, kidney, liver - the whole lot!) and another 1500 to 2000 donors and supporters made it an unbelieveable event. Myself and my family thoroughly enjoyed every minute and I thought about my own donor every day - it was thanks to him that I could compete.Hopefully he can join me at next year's games.
As for my performance - I got silver in the 5k and bronze in the 1500 metres, so I am very happy right now!

Pics:- Third place in the 1500 metres

 Silver and bronze medals!

The good thing about Lymphoma.....

.....Is the new friends and experiences that you have as a result of the treatment. Either through support groups, or doctors and nurses, or those that use my blog as a way of finding strength for their own war against this horrible disease, or people I met in the various triathlons and half marathons I decided to run just to prove that I'm in charge of my life, or volunteer groups I became involved with when I was recovering and had time to help out, or old friends who came to me when I needed them.

I have a long list of friends that I love being with - people I probably wouldn't have known at all were it not for lymphoma.

I was thinking about this earlier this morning when I was out jogging - I run every Saturday morning with the doctor who initially diagnosed me. The first time I met him was when I turned up with classic lymphoma symptoms and he got the ball rolling on the diagnosis.

It's funny how what might be a horrendous diagnosis to begin with turns out to be a blessing in many ways.

I'm not a drinker anymore, but if I was I would raise a glass to all my friends, old and new, who make my life so enjoyable.

Latest Checkup - All Good

Went back to the hospital today for a routine checkup. Nothing new to report - which is great. I have now been moved to a checkup every three months.

My chimerism has remained steady at around 80%. I had hoped that after the radiotherapy that this would have increased, but the doc says not to worry - it's possible it could stay at this level forever (all we care about is it doesn't start moving back towards 50%). The doc is also setting up a routine PET scan over the coming weeks - this is a normal follow-up to the treatment I had earlier this year, and nothing (we believe) to worry about.

Checking back on my blog, I mentioned a few times that I had problems with my concentration levels and fatigue. That all suddenly cleared up in early May. After months and months of having a fuzzy head, I woke up one day in May (I actually remember the date - Thursday, May 10th) and I felt more alert and clear-headed than I have done for a very long time. It's as if a switch was turned on - and I haven't looked back since then. I remain full of beans and good levels of concentration.

I have also established good contact with my donor. All still over email, but I am really looking forward to the day that I meet him for the first time.

So, it continues to look really good for me and I feel that I have successfully come through the other side of this disease and treatment. We hear a lot of bad press these days about the NHS, but I have nothing but admiration, respect and gratitude for the people there that saved my life.

One last thing - I have signed up for the British Transplant Games - being held in Birmingham in August. I'll be participating with the Dublin Team - long story! Looking forward to that, better start training.....

I'm still laughing

If you have been tracking my progress since I started this blog back in Jan 2016, you will know that I usually look on the bright side of life. Nothing has changed. The recent setback has been resolved and the lumps have disappeared (who knows, maybe forever).

I had radiotherapy on the lump on my arm in February. For two weeks afterwards, the lump had swollen up substantially and I thought it would never go away. But after two weeks it suddenly started to subside and within a further week had disappeared completely. I was a little surprised at how tired radiotherapy made me feel (and, to be honest, still does). But overall it worked really, really well.

At the end of Feb I had my scheduled MMR jab (part of my treatment programme) and I know that also prompted an immune system response as I started to feel even more tired. I spent the month of March in a haze but could feel, almost on a daily basis, the lumps above and below my eye getting smaller. I was feeling tired because my immune system was in overdrive - generating MMR antibodies, and clearing out the remaining lumps of lymphoma. Then at the end of March, I had a second MMR shot. And that, ladies and gentlemen, was the last scheduled treatment I have related to my transplant (well, except for a blood test in two months time to ensure I have indeed generated MMR antibodies).

I have no more perceptible lumps. All gone.
I have no more scheduled treatment.
I'm done :-)

I still have to go back to the hospital for checkups every couple of months. And the doctors tell me to expect to feel tiredness for another while (another couple of months or so), as my body recovers from the recent treatment.

The biggest event of all since the transplant has also occurred this month - I have just made contact with my donor. It's in the very early stages of email exchanges at the moment, but I am very excited at the prospect of meeting the man who saved my life.

Happy 2nd birthday - new immune system!

On Sunday, Feb 4th, I shared a chocolate cake with my family. We celebrated two years since my life-saving transplant. I find it hard to believe that, given all the treatment and relapses I went through over the past six years, I have come out the other side with a pretty good bill of health. I say that guardedly, because there is still one more hurdle to overcome - more on that in a bit.

I have gone from strength to strength over the past year. It has now come to the point that I am almost back up to full swing and have no transplant-related issues to worry about. I am back at work full time (and have been since this time last year) and the only thing that hits me occasionally is fatigue - usually after an intense day at work or a long week in the office. I sometimes feel at 4pm like I used to at midnight - tired, worn out and ready for bed. Maybe that's just old age kicking in!

So, life is good. However, my old friend the "mixed chimerism" has come to bite me. I wondered about this before - how can my old, potentially cancerous, lymphocytes (13%) live beside my new, healthy, lymphocytes (87%) without causing problems. Well, as it turns out, they can't! Back in August, I noticed three new lumps - in my upper arm, below my right eye and above my right eye. I can even remember the day I first noticed them - Tuesday August 1st. I'm pretty sure they were not there the day before. The lump on my arm was big enough to alarm me, so I raised it with the docs. Fast forward through a CT scan, ultrasound, biopsy and PET Scan - the lump is lymphoma. The good news is that nothing else showed up in my scans - it's just that lump (and probably the smaller lumps near my eye) that are cancerous.

I agreed today with the doctors that I will have radiotherapy on the lump on my arm. This will serve two purposes - one is to zap and get rid of that lump; the second is to prompt an immune system response that will tackle any other old lymphocytes that are lurking elsewhere in my body (such as my eye).

There you have it - back to the treatment table for me - but I am not at all concerned. I have no doubt I'll get through this too - although I am curious about the treatment as I haven't had radiotherapy before. I will also get a new permanent reminder of this - a small tattoo (just a dot) that is used to target the beam. There may be a chance of fatigue, but more than likely I'll not experience any side effects.

It definitely feels like this is my old immune system trying one last trick before it disappears forever. Once it is zapped, surely that'll be it. I'll have to figure out other creative ways of getting out of the household chores.......

Checking In - still going well

It's been three months since my last post and there really isn't much to report. All is going really well, although I had a little scare last month when I found a lump on my arm. This is still being checked out (am awaiting an ultrasound), but the suspicion is it's a lipid or some other kind of fibrous growth, as there are no main lymph nodes where I have the lump (on my bicep).

The lump did prompt a CT scan and this came back completely clear. One thing that was noted was that my spleen is slightly enlarged - but we knew that already and we doubt it'll ever go back to normal after the stretching it got in 2015 when I last relapsed. A larger spleen is the new normal for me.

My journey to handling full-on pressure and workload at work continues and I think I have reached the level of output and productivity that I had before this all started six years ago. I still ensure (as in my previous post) that I am in control of my hours worked and stress levels as I never want to go back to the stressful days of old. Make time for all of life (and enjoy it) is my motto!

Another observation - my hair has very little grey these days. I am convinced (as is my hairdresser) that it is getting darker all the time (and I promise I'm not dying it!). Great while it lasts, but I am expecting my hair follicles to give in suddenly one day and I will wake up with a completely grey head of hair! Either that, or my name is Dorian Gray and there is a picture of me in the attic that is getting older while I am getting younger - I'll have a look and will report back :-)

Lymphoma: A lesson in life

I'm not blogging as much these days as I march towards full health, and the transplant moves further away in my rear view mirror. However, my hospital appointments are now proving to be a good time to reflect on my progress and how I live my life differently as a result of five years of fighting lymphoma.

I had another visit to the hospital today. While I was waiting for my turn, I thought about what I've been through since November 2011 and how I lived my life before diagnosis compared to how I am living it now. As there wasn't a lot from a treatment point of view to discuss with the doctor, I continued my musings with him - he was very interested in how I am coping mentally as it is a very important part of the recovery process.

Before lymphoma, I allowed myself to get far too absorbed into work. It frequently took over my life, leaving little spare time for the other important things in my life. I now also realise that I probably drank too much, even though I didn't consider this to be a problem, but my socialising and relaxation was primarily based around alcohol. My free time outside work was often spent worrying about work and didn't allow me to completely enjoy the moments, weekends and holidays that I had with my friends and family.

I now realise that I can work very hard and still be successful, but leave it aside when I am done for the day. My productivity has not reduced as a result of this mindset change - in fact, I think it has improved as I approach my days with great clarity after having a good night's rest and not working late the previous evenings. It's not all that black and white, as some days office things dwell on my mind, but I am managing to stick to this mindset as a rule.
My free time is very important to me and I try to make sure I live in the moment - enjoying the experience of being with my family, or friends, or exercising, or whatever I'm doing at the time.

As a result, I feel a lot happier with my life at the moment and I also enjoy everything a lot more. It has taken lymphoma to teach me that and if the disease is all behind me now, then maybe it was worthwhile.

Recovery continuing nicely

Another hospital visit, another step towards normality. The main thing I'm watching these days is my lymphocyte count. The expectation is that this will return to normal levels a year to a year and a half after the transplant. Well, I'm in that timeframe now and, right on cue, my Lymphocyte levels have risen to the low end of normal. I'm hugely encouraged by this, as for a while I thought it would never budge from its low levels. Definitely another big step in the right direction.

Now to watch the chimerism. As I produce more lymphocytes, I want to see the ratio of new ones to old get to the point that my old lymphocytes are undetectable. This will finally mean that the old lymphocytes, which mutated and became cancerous, are gone - and hopefully the Lymphoma gone with them.

I'm feeling really good these days. Cocky enough to increase my responsibilities at work too. Although I still need to take it slowly and carefully, as I still hit the fatigue wall if I push myself too hard - often by 3pm if I've been busy all day at work (I start these days at 7am).

Still a long way to go, but I'm slowly beginning to come round to the idea that this transplant might just have done the trick......

13 months on and I've still got a big one

I've reduced my blogging frequency these days, because there isn't a lot to say other than my recovery is progressing nicely, and as expected.

First of all, the big news - my latest scan is completely clear. I am thrilled with this. The only thing to note is my spleen is still enlarged slightly - but we still think this is its new size because of the amount it was stretched previously. You all have my permission to say "there goes Trev - he's got a big spleen, you know". Plus - you know what they say about big spleens :-)

My Lymphocyte chimerism (ratio of my old Lymphocytes Vs new donor ones) is 87% donor / 13% old. This is good, and slowly moving in the right direction. The old Lymphocytes are where I had the cancer, so I definitely want them gone.

My Lymphocyte count has increased to 0.9. This is still very low, but it has increased from 0.7 last time - so it also moving in the right direction. My antibodies are low too. While these are low, I continue to be at increased risk of catching viruses and not being able to get rid of them without medical intervention. Case in point - I have been suffering from a cold for the past 5 weeks. From week to week it varies in strength - it gets worse to the point where I'm sneezing and coughing with a fever and then suddenly it wanes and becomes hardly noticeable (as it is right now).

So, it's all positive at the moment. Life is good. Work keeps me busy full time now, plus we moved house two weeks ago and we're settling-in well here - plenty to be happy about.

Happy Birthday, new immune system!

On Feb 4th, it will be one year since my new immune system was injected into me in the form of stem cells. I remember being impressed that they were flown in from Germany that day and whisked straight to the hospital to be given to me. I still can't get my head around the miracle that our bodies are - how did the stem cells know they had to form bone marrow? How did they know where to go? I find it all fascinating.

Overall, it's been a good year. It took a few weeks to recover from the intensity of the transplant but from April onwards, apart from the chest infections that put me back in hospital, I've felt quite healthy. Of course, that statement is skimming over a lot of details - looking back at the blog, there were many bumps along the way. In general, though, it's been good.

I have a scan coming up later this month to see if there is any sign of Lymphoma. I doubt I'll have any problems with that. What I will watch closely, though, is when my Lymphocyte count starts to rise - hopefully then my chimerism ratio will improve and I will not create any more mutated (cancerous) Lymphocytes.

Still healthy and getting on with life

I haven't checked-in for a while. This is because I'm still doing well and staying healthy. In spite of lots of family members coming down with heavy colds over Christmas, I have managed to remain mostly bug-free. I feel that I spent the last few weeks running from people who were sick, but it appeared to work. I also continue to avoid crowded areas where there is a chance I might catch something.
Just before Christmas, I did come down with a slight cold. I feared for the worst at the time, but it cleared up within a few days and I've been feeling great since. I'm very happy that I beat a cold - I take that as a sign that my immune system is starting to ramp up.
I am also continuing with my work rhythm of 2-3 days in the office and the rest of the week working from home. This is working well for me and I feel very productive and have good concentration levels at the moment.
The next step for me is to have another set of scans within the next month. This will show any activity by the Lymphoma. I'm not expecting anything to show up, just based on how well I feel.

Back on track

The past month, since getting out of hospital, has been great. The haemoglobins did the trick, killed the virus and protected me from other colds - there were times I was convinced I'd catch something as I met others with heavy colds. But no, I got away with it. Shame the haemoglobins only last a few weeks.

So, it's back to "normal" for me now. Basically staying fit (I'm running again), healthy (very difficult when everyone seems to have a virus), and watching my lymphocyte count in the hope it will start rising before too long. As much as possible, I avoid places where I might catch a virus.

I have found a good work rhythm which involves 2 days in the office and working from home the rest of the week. This doesn't seem as tiring as three days in the office and I'm happy with my current concentration levels.

All eyes now turn to January, when I will have my next scan to check for lymphoma. I'm feeling positive about this because I feel so well, so I think it'll be fine.

Feeling better again

Well, it took a few weeks, but I finally feel like I'm over the virus. I really take my hat off to the staff at the hospital who looked after me so well. I feel that there was no effort (or expense) spared in treating me and giving me the best fighting chance to beat the virus. Clearly the immunoglobulins and antivirals helped a lot - unpleasant as they were at the time. I'm still feeling the effects of the medication, though, as the antivirals made me anaemic. While my red blood counts are slowly rising, it'll be a few weeks before I'm fully up to speed. I have a blood test weekly to monitor this and ensure it's going in the right direction.

I am also more cautious about where I go these days and who I meet. A chance meeting with someone with a cold could put me in hospital again, until my lymphocyte count gets back to normal. I don't want that, so I'll be watching people closely everywhere I go, and will work from home as much as I can, in order to minimise my exposure to bugs. Just for a few more months until my immune system is stronger.

But, overall I'm still positive. This was a virus and nothing to do with Lymphoma. In the grand scheme of things, It's all looking good.

Back home

The drugs are finally all administered and I managed to get home late yesterday evening. Now it's all about resting and recuperating.
There is one potential sting in the tail - one of the drugs I've been taking has a side effect of making you anaemic. Indeed, my latest blood test shows my red blood count to be very low. As a result, I will probably need a blood transfusion on Thursday. Something to look forward to, as I was already starting to miss the hospital 😀
On the positive side, it's great to be home to see Sue, the kids and the dog again.

More drugs than you can shake a stick at

Remember I said that after 30 hours of IV immunoglobulins, all the medicine was in and all I need to do is wait for it to work its magic? well, it turns out I need another dose - same again, 20 to 30 hours on a drip. Not sure how that happened and how we lost track, but luckily someone was keeping count and realised I still needed more.
So, here I am back on the drip until sometime tomorrow. I think the nurses are relieved because I am starting to feel better and was getting a bit frisky - does nobody get Fr. Ted jokes anymore?
The other drawback with this new drip is I won't be able to do any household chores for the next two months. The doctor didn't explicitly say that, but I could tell that's what he meant. Actually, I think he meant six months, but I love Sue too much and will gladly sacrifice myself and help her out after Christmas.

The medicine is in, now we wait

It took over 30 hours, but the IV Immunoglobulin is all in. It finished in the early hours of this morning. Now I just wait for this and some antiviral tablets to halt the spread of the virus. I guess I'll know when things start to improve as my temperature will stop spiking and I feel generally better within myself. Dunno when this might be, so I could be here for a few days yet.

Feeling a bit tender today - probably a combination of the drugs and the virus. I think it'll be a mixture of snoozing and watching rugby today.

Beware of the goblins

I was hoping the intravenous immunoglobulins would go smoothly, but no such luck. they started the infusion slowly so that if there was a reaction it would be lighter than if I got the full dose from the start. That went fine so they stepped it up to the next level. That, too, went fine so they stepped it up again - that's when the rigors started. The most violent and uncontrollable shaking I've ever had. I'm sure they must have heard my teeth chattering from the other side of the ward. it came on really fast, but so did the medical team - they quickly gave me an antihistamine shot and the shivers died down within about twenty minutes. I'm in such good hands here.

I took a break for a couple of hours and we restarted the infusion back at the slowest rate. Fully aware that I might have another reaction, but I really want these antibodies in my system to fight this virus. It took all night, but I eventually finished the first of four bottles. I'll be hooked up for the rest of today and probably tonight, but at least I'm getting the medicine I need.

On the positive side, I've gotten out of hoovering the house for another week AND I have plenty of time while lying here to hatch a scheme to get out of more chores next week........

Goblins

Immunoglobulins are antibodies that your body produces in response to bacteria or viruses. So when you catch a cold, for example, you get over it once you produce antibodies to fight that virus.
My goblin levels are low so I will be getting a top up over the next couple of days. These antibodies will target the RSV virus directly, so I should get the upper hand against it by the weekend.
The treatment will start this morning.

Caught a virus, back in hospital

I haven't been feeling well for a few weeks - nothing major, it felt like I was fighting a cold and I was managing it fine with paracetamol.  However, over the weekend it seemed to go up a notch, my temperature was steadily climbing and I started getting the shakes.

I came into the hospital on Monday, just so see what is going on and they found a virus that concerns them. It's called RSV and in someone with a strong immune system it would cause a few days of sniffles and a minor cough. For me, there is a risk it'll go to my lungs, causing bronchiolitis. so we don't want that. But to fight it, I have to take some drugs with potentially strong side effects. My blood counts need to be monitored every day, and some of the drugs are delivered intravenously. So I'll need to stay in until the course of treatment completes and I am showing signs of being well again. I might get home this weekend. watch this space.....