the saga continues
 

Sorry its been a long time since I posted. Today is Nicks 1 year anniversary and its been a long and difficult journey.
The good news is that the transplant has been successful, blood levels are mostly normal. The downside was the PML that has caused some devastating mobility problems, and the GVHD which surfaced in his skin, liver, gut, eyes and salivary ducts. We are still working through the complex issues and have many hospital appointments mainly for skin PUVA and also following a corneal transplant.
He has also had issues with pancreas insufficiency and needs Creon capsules with food. The hardest for him is his lack of appetite and saliva, so he seems unable to gain weight.
Still a long way to go, but he is trying to fight his way to health.
Starz

Thank you for updating us. Having normal blood counts is a victory, but it's hard to declare victory with everything else that's happened. You and Nick have had such a range of problems and I really feel badly for you both.

Is the PML virus gone? That had me worried the most.

Do the ultraviolet A treatments seem to help Nick's skin?

I guess the Creon helps with digestion but only if he's able to eat in the first place, and that depends on saliva. Are you trying to rely on liquids for a good part of his nutrition?

Thanks for the update Gem! Congratulations on his first rebirthday! It's hard to celebrate with so many ongoing issues, but you have to take your victories when you can with these diseases, and normal counts is nothing to sniff at! And remember what the doctors thought his prospects were, and he's shown them all... He's shown everyone what a fighter he is, and what can be done when he puts his mind to it, so who knows what the next year will hold for you...

melissa

Nicks PML diagnosis was made from an MRI scan, and a 2nd MRI a few months later showed some improvement, although another small area of his brain had showed new signs. Its hard to say that its gone... although he did make lots of big improvements, however some things are getting worse again. His mobility is the worst affected and he uses a wheelchair when he is out.
It really is a horrible virus to reactivate.
His skin has definately improved with PUVA, it doesnt have active GVHD but has been left a bit mottled in places. I think that will improve. It has been shown that he relies on extensive mosturising, Hydramol is used every day.
Nutrition has been another big issue and he does seem to exist on liquid supplements like Scandishake and Complan shake and everything else he eats is a bonus. As he had a high metabolic rate he needs a very high calorie intake, and that is so very difficult.
We keep hoping things will improve for him.
Starz

I am very sorry to say that Nick died yesterday after another battle with his GVHD. He had been readmitted to Kings in August to address the issues around his weight. He had a PEG feeding tube but still needed to eat as well, which he found too difficult.
Eventually I feel he was too tired to battle any more, and had a very peaceful death.
Thank you all for this site and your contributions. I hope it helps to inform people to find the cure for this horrible disease

Gem

I am so sorry to hear this news Gem. I know it's been long and difficult journey. I hope you find some comfort knowing he no longer has to deal with all the problems this disease can cause.

All my best,
Marlene

Gem,

I'm so very sorry for your loss. You and Nick fought a long, hard battle. Hopefully, Nick is at peace now. I hope you will find peace over time and hang onto the happy memories of your time together.

Karen

Gem,

I am so sorry to hear about the loss of your dear Nick. Words can't express our sympathy for you and your family. You are all in our prayers.

Mary

Oh Gem, I'm so so sorry to hear of Nick's passing. He fought so hard and just couldn't catch a break. I'm comforted to hear that he at least had a peaceful end.

Please accept my condolences.

melissa

Gem, My heart goes out to you. He will be in a better place with out disease. Be sure you take care of you now. Lori

Nick
 

I am so sorry that you lost your husband Nick and that he had to die so young. I do thank you very much for sharing his story here with others.