A long day and what doctors say can have a big impact

On Tuesday afternoon we drove for 5 hours from Devon to London, stayed over night and then went early to Kings College Hospital. Before she went in she took the morning batch of drugs - see photo.

It was a good job we did go in early. It was a very arduous day.
Ros had her blood tests. They took a lot of extra blood for research purposes. No problem.

As this was going on she was informed that they wanted to do a bone marrow biopsy. That is not very nice, as as they have to drill into your hip bone and extract bone marrow. They also needed to chip off a few bits of bone on this occasion. Many people have a general anaesthetic, we just have a local anaesthetic  put up with the pain and strange feelings as it is lot quicker. The good thing was that it saved another long trip to London as it needed doing anyway - Roz got 'lucky' as they had a cancellation and could fit us in.

The photo was taken off the Internet and shows bone marrow being extracted. As a patient you do not see this, it all happens behind your back

We went to see a consultant. This was a young German doctor who told us he had only been at Kings a very short while and did not know the procedures. He examined Roz, during which he was teaching a young doctor from Spain. This was fine until he looked at the rashes that Roz had - he said he was not an expert at rashes but he thought it was definitely a graft Vs host rash - which is one of the three things that transplant patients fear most. He kept asserting this. Roz was immediately very upset and frightened. The doctor could not get through to his boss and asked if we had anything else we needed to ask him. Well we had a few things, so we started asking and he obviously did not know the answers. Our confidence was shot.

He left the room and sometime later came back with a more senior and very experienced Consultant who thought the rash was not graft Vs host, and put our minds at rest. He called in the dermatology team who confirmed this and switched the creams being used to sort out the problem. He also answered all the questions we had and Roz gradually calmed down.

Our view was:
1. The first consultant you meet on return to hospital for the first time should be experienced
2. No consultant should assert something that serious without a second opinion. All he had to say was 'I am not a rash expert, so I think we will just get someone else in to have a look at them'

The test results were very good, so they said she only need be checked one a week, alternatively at Kings, Bone marrow tests once a month for a while, and steady as you go. They cleaned her Hickman line, so she could last out until next Wednesday. So that was great.

We then spent another 5 hours driving back to Devon and got back exhausted

In the morning we heard from Derriford that the tests they had done on Monday had identified an early sign of CMV. Cytomegalovirus, or CMV, is a moderately infectious herpes group virus which has to be stomped on very quickly. They called her in to switch the tablets and said that she would have to be checked twice a week for two weeks until it cleared up. When the lady Consultant was telling us about this she also told us that a small amount of graft Vs host is a good thing as it shows that the new bone marrow is doing its job, and as a consequence will be fighting any possible residual MDS or other problem - which is what we want.

Roz went home and slept a lot. Hurrah - no hosptial visit until Monday