Tip of the day

Yesterday and today were a bit weird, as Ros went into Derriford yesterday morning for a blood test and I went in after lunch to get formally put on their books.

As you might expect I took all my blood and bone marrow test results in to help speed them up. They decided to give me a venesection - blood letting again, which did not happen for 4 1/2 hours - at which time the male nurse, who was getting tired as they were short staffed, failed to get any blood out twice - which is very painful.
Today I had to come back in before lunch and try again - a female nurse, as it happened, had a go at the venesection which worked first time. The male nurse was stood next to us. We figured out what the problem was - during the whole 4 1/2 hours I was in yesterday, I had not had a drink, my veins would contract, they would be hard to find, no blood, …
So the tip from the lady nurse was:
 

• 'If you are having blood taken for any reason, have a lot to drink during the couple of hours before. Say a big bottle of squash or something
• That way your veins pop up and it’s much easy, and less painful.

Then Ros was in during the afternoon to see the consultant - her haemoglobin is down, and she is on the border line of being neutropenic so may need a blood transfusion next week. The trouble is, if you give too much blood, the bone marrow gets lazy and does not do its job. She was able to reduce one of the nastier tablets again today - so that will help.

Ros's son is worried that he might have something wrong with him - so a strategy was devised where the GP can put his mind at rest, or even take a blood test to show him that he is OK. He is a smart lad and heard about hereditary problems and put 2 and 2 together.

We are both feeling fine, other than the tiredness you get with these issues, and after all that we did not even meet up for a coffee.

Day 67 - Things are getting better

On Saturday Roz drove her mini for the first time since she had her Hickman line put in some months ago. She was then able to drive herself to the Hospital on Monday where they took more tests and had no need to do any changes - which was good.

Today she went back in, met up with Hanna a senior consultant who said that her CMV had been negative the past two blood tests, so they could reduce the 'pink' tablets - these are very very strong anti-virals that combat the CVM, but also dramatically slow down the bone marrow.
Today she also had been told to further reduce her tablets that counter rejection of the transplant. Both of these are great steps forward, although it might bring on a form of host Vs graft (or vice versa) side effects, which the Doctors want a bit of for some reason.

So a very good day. She sounded very bright and cheerful. Steve's mum is down to help, and its Ros' birthday tomorrow - so we hope to all go over for dinner at her place

The only down side to the day is that Josh, my lovely sheep dog who was run over before Christmas and has already had two operations to put his hip bone back in its socket, was X-Rayed and showed that he has to have it put back in and wired in for a third time tomorrow - he is not a happy dog, and lots of general anesthetics are no good for dogs.

(The photo is a library shot of the hospital)

Transplant reunion

Dad and I spent the whole day in Kings College hospital yesterday. It was packed.

You must make the effort to talk to people in the waiting rooms. Everyone sits there looking gloomy. We always try to chat to anyone and everyone. Lots of patient have good news to tell, and by sharing it amongst the Outpatient  'family' (other patients, nurses. admin, doctors that you have all met lots of time) it can help pass the time, lift your spirits, and make you feel that it is not just you. We all become too self aware, and pre-occupied with ourselves. There is real hope out there and the team does its best to make you feel at ease and be positive.

It can be much harder for the younger patients,  as they always seem more upset, nervous etc. This is understandable as they should have a long life to look forward to and diseases like ours can change this potential. And in fact they have far better chances of recovery than older people. So do spend extra time with them.

I am doing really really well. That is what the Doctors and nurses who know me say. I am starting to come off some of the horrid tablets. I am able to do more each day and I am generally feeling more and more normal but I am aware I still have a long way to go.

Even with the Hickman line in, I think I will have a go at driving the Mini soon. Yesterday we sat in a cab in London with the strap over it and it felt fine.

I had a bone marrow biopsy, blood tests, and two lots of blood that took all day, so in the afternoon we watched a movie on Dad's computer with earphones on.

Dad is doing well too - no worsening off his figures. We watched another film on the train back home. We were both really tired by the time we got picked up from the train but very positive.

A tip on taking tablets or liquid medicines that taste horrid. The Doctor suggested a sip or two of Coke. I tried a bit of juicy strawberry, which worked well too!

Love

Roz