The journey home - Henry's Diagnosis

For those of you who follow what I write about Henry this a lengthy update. Feel free to ignore though.

I hope you would have no idea what he has been through so here goes: Echocardiogram of the heart; X-Ray of the heart; bloods, bloods and more bloods; abdominal scans; liver scans; scans of the vascular system; lung function tests; meetings with the psychologist; observed during play.

We have met with the surgeon, several cardiologists, the transplant coordinator, the psychologist and the nursing team. We have been questioned, questioned and questioned some more. We are all totally shattered!

He needs to see an endocrinologist as his thyroid glands are not fully functioning (a totally new problem falling out of the other problems he has) and have a 4 minute CT scan in Birmingham which will involve him being unmoving and yet more bloods!!

However, early reports are looking positive (a pile of results are yet to come back). When all this is done the theory is that he has entered the ideal window for transplantation. He remains by Newcastle's standards in remarkably good shape and all his activity and walking has given him remarkably good muscle tone and he has an advantageously big chest. He is therefore safe to be at home at present and won't go on the urgent list as he still has a reasonable quality of life. If he deteriorates so that he was unable to leave hospital, he would then move to Newcastle so that he could be supported permanently by intravenous drugs and go from the critical to the urgent list.

In any event by a quirk of fate he currently is almost the only child of his age requiring a transplant in Britain at the moment so he is close to the top of the list for receiving a teenagers heart. They sincerely hope that he will get a transplant whilst still in this condition and still at home.

In another great quirk of fate a Birmingham registrar three years ago was deeply involved in his care and got to know us well. She describes Henry as a 'truly favourite patient'. She left Birmingham to become a consultant in Newcastle and said to look her up if we ever arrived (we now know that she believed this to be inevitable). As if by magic she is now in charge of the whole paediatric cardiac transplantation team in Newcastle, and once again Henry has found a friend in just the right place.

The transplant process itself is relatively straightforward if risky, but the after care very complex. He is likely to be in hospital for a two months or so; return to Newcastle twice a week for three months; once a week for a following three months; once every fortnight for three months and once a month for a further three months more. Thereafter, every three months for life!!! Apparently if it works well the transformation will be 'staggering'. Henry B on full throttle would be a sight to behold!

Lastly, and really importantly we discussed with the transplant coordinator how Henry would be functioning now and how he should be living his life. She said that we should still be doing as many normal things as possible including some school and mixing with friends, but that he will now be severely effected by his physical condition. The combination of 'end stage heart failure', thyroid problems and protein loss will leave him struggling to concentrate, fully process what is going on, make him very tired (sometimes for days if he has made a supreme effort to do something) and much colder than previously. He will need to conserve energy for the most important things in life for him and those that make him happy and keep him positive.

I hope that this very long caption helps you understand the process that we have been through and the challenges both Henry and ourselves are facing.

Best wishes

StRoberto