The Amyloidosis Strongman

[Clint]

The Amyloidosis Strongman
By Clint Gaskin

In November 2013 I found myself on the 10th floor or the Royal Free Hospital in Hampstead London; great view of the Heath and surroundings, but if I am honest it didn’t count for much, as I was stuck on a Heart failure ward and had been told I may have as little as 2 Weeks to live. See I had been diagnosed with AL Amyloidosis a rare but extremely deadly disease that had managed to attack most of my internal organs, at the time I was unable to walk as I my blood was not clotting and I was bleeding into my muscle sacks, my liver was about twice the size of what it should be, by kidneys working at thirty odd percent, and my heart on the brink of failure with really thick walls and constantly in a dangerous arrhythmia.

My stay at the Royal Free wasn’t the start of my troubles, my diagnosis was a long time coming, my symptoms were classic looking back, I was having trouble with my heart and arrhythmias for just under a year, my spleen ruptured for no reason ending up with its removal and being in a induced coma for 4 days in my local hospital, then I had the most severe pains in my legs which meant I was pretty much wheelchair bound for 6 months, Doctors seemingly at a loss as to what was wrong.

My care teams at the Royal Free have all said they really didn’t think I was getting out of hospital, but equipped with an ICD, I did exactly that a day before Christmas, that was spent at home with my Family, my wife Sharon, and four Children certainly a gift for us all. The following 6 months were incredibly hard, but I responded well to the treatment and by August I was off most the harsh drugs and recovery could begin. Sharon pushed me to go for walks; I had no fitness found it hard to breathe and had no strength at all.

As much as I didn’t want to do anything the walks continued, we live on the North Downs and our walk included one face of the Hill, at first I could walk about a third before having to go back, but as the weeks passed I managed to get to the top, I still remember the feeling its was just like the film Rocky when he ran to the top of the steps. (today on our walks we walk over the downs 3 times covering 7 miles and its not me wishing for it to finish anymore)

In January 2015 I was told my bleeding issue was also back in check and that I could go to the gym and train. The disease had really taken its toll I was so so weak but I knew how to train so started on a progressive training system and after about 3 months I had enough strength to start training properly. I then enlisted the help of a former Power lifter at a well know gym that has many champions training with them. I have now been training with them for 4 months and can now see that not only will it be possible for me to regain the strength I once had and compete in a local novice strongman competition.

My focus now is to reach the strength and fitness levels required to compete by mid 2016. I will be keeping a diary on here so you can all see how I am getting on.

I hope this helps some of you by giving a little hope to survivors of this illness.
I can’t thank enough my family and all the lovely staff at the Royal Free Hospital and the NAC for putting up with me for so long ☺

[Lesley]

Hi Clint

Lovely story.
It is nice for newly diagnosed Amy patients to hear some positives. When I was first diagnosed there only seemed to be bad news, now two years on, prognosis seems to have improved.

All the best
Lesley

[patpinchin]

Clint, what a truly amazing story. The very best Doctors treating and advising you, your impressive courage, determination and love and support of your family have enabled you to come through this. A journey of deep anxiety, and tough treatments with a successful outcome.  I am full of admiration at your not letting this cruel disease beat you. Such perseverance in gradually returning to fitness. An inspiration and role model for us all, proving there is genuinely more hope for many. 

[alisonjayne]

What a brilliant outcome. Quite inspirational.

[Clint]

I spent this morning training with weights on an exercise called overhead press, I am training with 80Kg of weight, which is the weight lifted at last years competition, so just need to increase the amount of reps at this weight.

This afternoon not so good, I have a lump on my Kidney and got the results of the biopsy I had last month and they want to remove the kidney, The Amyloid has already had a drastic affect on my kidney function so losing one could be life style changing, off to have a differential function test to see what percentage of function either kidney has so we can guess what we would be left with once the bad one is removed. That won't be till the end of the year so its carry on as normal for now.

[Clint]

I had my six monthly at the NAC today and had the best result I could have hoped for, a lovely clear scan.

Its seems I am one of the lucky ones and can clear the Amyloid deposits quite quickly, for those you you who are suffering like I was 18 months ago, never give up, I always knew I could beat it..... you can too.

The good news is when it returns I can be considered for SCT something that I was told I could not have before.

Onwards and upwards.

[patpinchin]

Well done Clint. Good to hear. You are very fortunate that your deposits have clearied so quickly. For some it take years, some never. It's been 13 for me, and no regression.  It will never happen, because my deposits are in the soft tissue. Believe me the relentlessly ferocious residual symptoms are incredibly hard to endure.

[Michael]

Hi Clint
Been reading through lots of post to try and get some sort of understanding of the condition I have recently been diagnosed with.
Although I don't know the full extent of my Amyloidosis at the moment ( I'm due into the royal free on the 18th August) I have been uplifted by your story.
After much research, most of what I've read ties into how I've been feeling for quite some time now and I'm now looking forward to my visit to the royal free so I can start some treatment.

Best wishes
Michael

[Sharyn Boyd]

Dear Clint

Your story has given me much hope.

My husband has cardiac AL Amyloidosis (derived from Myeloma) and has just experienced 5 very scary arrymithia attacks last week, his heart stopping each time.

He has just come home from hospital this morning and I am beside myself waiting for another attack.

He has had an ICD fitted and I am very interested in your experience with your ICD.  Have you had any interventions? If so, how were they for you?

You are so brave and an inspiration.

Thanks Sharyn x

[Clint]

Hi Michael, you can't be in better hands than the Royal Free, they are simply awesome, all of them, fingers crossed for you.

Hi Sharyn, I was in Atrial Fibrillation for ages which was kept under control with Amiodarone, when I was having Velcade I crashed with extremely low blood pressure, the ICD also paces and I am set to not drop below 60 beats per minute, my natural rhythm was low at 48 bpm at rest so with the Velcade it was dropping that causing me to crash, so my ICD still paces me when I drop below 60bpm, but you can not feel it pacing, I have a finger pulse oximeter and when it reads 60 its a perfect rhythm; because I am being paced. As for an actual intervention of shock, no nothing yet.

I dont really know I have the ICD it sticks out a bit and I often hit it with the weights bar when I press heavy but you just get used it it and it becomes a part of you. Funny enough I refused to have it at first, really didn't want it but I needed it, now even though I probably don't need it I would not want them to remove it as I think of it like a guardian angel

All my love to you, the hard times will make the good times to come even better, sounds mad but I have never felt more alive.

[Clint]

So training still going well, my legs are still weak from the bleeding issue and where I could not walk for 6 months, that said I have been slowly working on my deadlifts, that's pulling the weights from the floor to waist level, this week I pulled a fairly easy 170Kg, this is 10Kg above lasts years novice competition weight.

My team at the NAC told me my Kidneys maybe just sulking and not as damaged as first thought, so I have also not taken water tablets for a week now, I am 1/2 stone up in weight but stable for now and no retention on my ancle, will try and go as long as I can before needing to take the tablets (I get a bit breathless when I hold too much water) with the idea it might make the things wake up and do some work.

[koontzkg]

Clint,
Thanks for sharing your story.  It's always encouraging to see someone return to their prior level of strength and fitness.  I, too have been able to return to my cycling after my "amyloidosis detour".  This weekend, I will ride 180 miles over 2 days with 7,900 other riders to raise money for cancer research at the cancer hospital based at our local university.  When the riding gets hard, I remind myself I've been through much worse!

I carry a list of those effected by Amyloidosis.  If you'd like me to ride in your honor or in memory of a loved one lost to Amyloidosis, please enter the name here.  I will carry the list with me for the ride, thinking and praying for all on the list. 

https://docs.google.com/forms/d/1zm4d01YAY6G51gXGVqbMct8YJuLIAAsLfAJM-31jUHo/viewform?usp=send_form

Blessings to all,
Kathy

[patpinchin]

Good luck Kathy. Your cycling venture this weekend is a remarkable challenge.
Your thoughts of Amyloidosis sufferers far and wide, as you ride is a most touching gesture.
You have probably noticed I have added a number of forum members via the link you have posted elsewhere. xx

[Clint]

I just thought I had better update this thread, its been ages since I last looked on here (I lost my password for a bit and had to have it reset).

I had my left kidney removed in November 2015, took a while to get over surgery but I feel so much better now, I got back into the gym in January but promptly ripped my operation site open going too heavy, so took another 4 weeks or so to stop the pain from that, since then I have managed to build back up to full strength.

After the operation the surgeon also told me that my spleen had regrown, so right now I still am taking the penicillin required for people who don't have a spleen but hope to be able to drop that as well soon and then I will not be on any tablets, which is fantastic.

Light Chain tests are still coming back within normal range and they are letting me take my own blood now so I am not even inconvenienced for hours at a hospital, just do it at home and send it up in the post.

I have no intolerance for exercise now, so I can do as much as I ever could do, in fact I think I am training with more weight now, I have kept my old training notes so will go back and look but I am sure I am above my previous weights. I can also run quite well ( I left something in my car and ran back to it it was about half a mile, didn't need to stop once).

In January 2014 I had dropped to 12 stone (168lbs 76Kg) today I am at a steady 16 stone (224lbs 101Kg) I am still eating to a very structured diet, I have not deviated from this apart from the odd holiday.

So for someone who was given 2 weeks to live in November 2013, I feel I am very lucky and proof that you can recover if you don't give up.

Love to you all x

[Nmaylor]

Hi everyone.I only got diagnosed in March with Wild Type Amyloidosis so I'm still feeling a bit sorry for myself.After reading your stories I feel a bit stupid really.Some of you have really gone through the mill,I'm really a novice!.Clint you have got what it takes my friend keep the faith.I have 25 years experience with the Royal Marines so for me not to be able to climb the stairs without breathing out of my ears is hard to take.Part of the Marines ethos is Determination so it's not going to get me without a fight.I just hope I can handle it the same way you guys have.I wish every one of you the best health.Nick the optimist.