Made it! Christmas Day

At the last minute we were not sure if Roz was going to have to be admitted Christmas day. On Christmas eve she had some tests which showed her sodium was low. She had to go into Derriford on Christmas morning for further blood tests,  she came back and later the nurses rang to say her sodium level was on the way back up - probably the Walkers Crisp she ate :-)

So we are having a lovely Christmas. Loads of presents for the children, and a nice Christmas meal to come - half veggie and half meaty stuff - traditional turkey done a special way.

 Roz was determined when she went in for the transplant to have a normal Christmas at home

Christmas is upon us

We are all looking forward to a white and happy Christmas. Roz will have Christmas at their house in the morning then come and stay with us for a few days. Simon and Robert will also be coming down - weather permitting. It should be fun

Back home again

While in Derriford Roz has fought down three viruses, high temperatures, oxygen problems, etc - and of course boredom when she started to get better.

She feels a whole lot better today and after a 3 hour long wait for pills and potions is now properly discharged from Derriford to her home. Steve and the chidlren came in to pick her up this evening.

A poor couple of days - that finished more positively

Roz had a very poor day yesterday, overnight and today
She had bad vomiting over night and had to come back into Derriford very early. She also had sickness, high temperature (39C) ,probable chest and stomach infection + the CMV virus, pains in the tummy. 
She was too ill to have the extra blood transfusion, and had extra anti viral / antibiotics instead. We were all a bit worried about her.

Barbara and I took it in turns to be with her from7:30 am until 9:30 pm. She was a lot better for the last hour or so - walking about a bit, and had some food for the first time in the day.

Using a clip thing on your finger they can monitor your pulse and the bit I did not know, they can also monitor how much oxygen you have in your blood. Anything over 95 is fine. She went down to 80 in the evening, so was put on a low level of oxygen via her nose - which seemed to help by the time I left. 

By midnight her temperature was back to normal and she felt very much better.  However, we learnt that the oxygen level in her blood had gone down very low-  so she was put on the highest rate of oxygen  they could via a mask over night. She found this claustrophobic and scary, so did not sleep very well. The doctors were not sure what had caused this low oxygen level when all other signs were OK. We thought it was partly the fact she was overdue a blood transfusion so did not have enough red cells to carry the oxygen, and she had had this infection in her lungs.

Today she was gradually eased off the oxygen, but felt sick, had diarrhoea , pains in the gut - but her temperature is OK still. So the gave her the blood she had been going to get yesterday, plus magnesium, potassium, two antibiotics via the Hickman line , and of course loads of pills, mouth washes etc.

During the afternoon, Barbara went for root canal treatment at the dentist, following a week of antibiotics to cut back mouth ulcers etc. She came back into the ward, and promptly felt faint. Instead of just falling on the floor - her first aid training told her to lie the patient done, in this case she was the patient. So she lay in a feint on the floor in the corridor out side Roz's isolation ward. Doctors and nurses scurried around, took her 'Ops', got her int o a bed, cups of tea, sugary things to eta etc. Roz meanwhile had gone for multiple X-rays. I took Barbara home 40 minutes later and put her to bed before Roz got back from the X-rays. 

After a quick meal, I then went back into Derriford to look after Roz again. Roz enjoyed repeat heavy duty antibiotics, and two more blood transfusions - around 12 hours hooked up for the day. Just before I came home another Doctor came in and told Roz that the X-rays showed a small blood clot on her lungs, which is caused by all the lying down. So ten minutes later she had a subcutaneous injection of something like warfarin to dissolve away the clot - it feels like being stung in your tummy by a bee when you get the injection.

She feels a lot better now - no temperature, oxygen levels OK, no headaches, pain in stomach gone etc. She had a bit to eat and drink, chatted and lot and when I left her was cheerful even though she still had 4 hours on the drip to go. 
To end the day we Roz got a lovely bouquet of (virtual) flowers from Lois in San Francisco

Dear Roz,

Sorry to hear that you've been having a rough time these last  few days. Barfing (slang for vomiting - do you use that term?) is one of my least favorite activities. Interesting bit about different O2 saturation readings on your fingers and toes! Being hospitalized is no fun.  I hope your doctors have got it all under control now and you can go home soon.

Here's a little bouquet for you, from my garden: mint, parsley flowers, African blue basil flowers, and jasmine buds. (Richard/Barbara, please show this to Roz if she is  not online herself.)

Best wishes,

Lois

Real flowers are not, of course, allowed

9th to 12 th Dec - the CMV virus came back up again

We had hoped the CMV virus had just about gone.Roz has been taking special tablets to combat it for some time now.

However on 9th Dec Roz got called in to be admitted into Derriford and put onto intravenous special antibiotics at 4.00 p.m, as the CMV results from Wednesdays checks showed that it had reared its ugly head again.  We were in within the hour. (The results might have been caused in part by 'sicking' up her tablets a couple of days - who knows. Nausea is a real pain - if you can keep the tablets down, you get better much quicker)

• No beds available when she got there
• They offered a bed in Outpatients area - which is a bit like in a corridor
• The on call pharmacist turned up at 9:30 p.m. It took hours to contact him - the nurses thought that he had left his bleeper behind. It took 2 hours to make up the drug, which then required a second pharmacist to check it as it is a very controlled drug. She started having the drip at midnight, then we took her back to our house to sleep. She was admitted again at 9:00 a.m. and has had a bed there since then.
• The doctors and nurses were really good - and kept bring drinks etc

Seen here with her Mum at 12:30 having the drip

They actually only need here in twice a day to have the drip given - 12 hours apart. So she is getting home for a few hours in-between to see the kids, etc and sleeping in the hospital over night. Again she is having problems eating, sleeping, being sick, and headaches. The faster this CMV virus is dealt with the better, as the drugs being used to treat it suppress also suppress the new bone marrow.

Trip to Kings 7th and 8th Dec

She was a real drag. The doctors recommended that we took Roz by car, given how soon after the transplant it was. Normally that is a 4 1/2 hour journey - it took 8 hours - given M4 closed from junction 3 to 1, and the South Circular being a nightmare.
We both were seen

Richard. I lost another pint of blood, which later Dr Ho said it was a shame I could not have just given it to Roz. My ferritin level has come done a bit more (whihc is good) - so I only need blood letting once every two months now. Shame - I was just getting to know the leeches. He also gave me special antibiotics in case I get a temperature - to keep me going before I can be admitted, presumably to get some intravenously. I also have to have antibiotics when I go to the dentist - all because my immune system is not good. (Neutrophils at .7, instead of normal of above 3 and if they stimulate the white cells to improve the neutrophil level, they might bring on the MDS sooner - so what I have is just fine)

Roz was having blood tests at the same time - seen here coming to see how I was after my leeching.

They said that she was doing fine, and should come back every two weeks, bone marrow tests once a month for a while, and keep going to Derriford when needed in between
The journey home was a bit better - only 6 hours - notice the heavy ice on the plants to the left

Next time we will be OK to go by train - whihc will be much nicer and less stressful

Combatting sickness / nausea

This was a bit of a struggle, and is with most patients. The doctors can give you a variety of anti-sickness drugs and tablets, which need to be taken well  before you might be having food; or even thinking about food.
Another technique which might help is to use wrist bands that are designed to be used to stop sea or air sickness. Roz tried these and they did seem to help - only they only cost £2 !!

They other thing is very careful choice of food. Just what the patient will / can stomach. With Roz we found the following worked

Toast with margarine - not butter
Bananas - very good as give potassium as well
Peeled apples
Melon
Tea
Good yogurts - they have to be pasteurised (The one shown below at Derriford was very nice, while the ones in Kings were digusting - even if you were not ill - they were not real yoghurt)
Simple boiled potatoes
Sandwiches with nice bread and say thinly sliced freshly produced chicken
Cheese in individual packets
Ceratin types of low salt crisps
Special high protien drinks the dietician gave her

And then the number, taste and shape of tablets and liquid medicines also makes you sick. Ask if you can spread them out over a period, and try and eat or drink a bit before and after to help your stomach accept them

Donor George - what a hero

George offers to be a donor for bone marrow

Here is George working on a hedge that we were restoring. George works for us part time as a farm worker / environmental farm worker.
Having heard about Roz, George signed up to donate bone marrow. If you want to do so, please visit the Anthony Nolan site.

All you have to do is

• Read a simple form, to ensure you are able to be a donor i.e. some diseases you might have had 
• Apply
• Spit in a bottle they will send you
• And then they can check you for a match against anyone in the world (mainly the UK, Europe and the States) that might need stem cells.
• If you match then they will take you through the process of giving the donation - some tests, some pills to make you produce spare cells, filter then out of your blood stream and Bob's your uncle.

Why not sign up today?

One day at a time

During the past days we have been back to hospital with Roz 4 days out of every 7. This week she is there today, then we drive to London tomorrow to go to Kings on Wednesday. Today went well - a quick blood test, a one hour top up of magnesium, then a huge delay because the pharmacy had lost her prescription!  Most morning she still feels sick, and often is - just having to take the tablets. She is starting to help a bit around the house. Slowly slowly.

 A good thing is to get out each day, a change of location, fresh air, getting your body moving all seems to help. Here Roz is watching her dog trying to round up sheep.

You will note that Lottie is not even looking at the sheep - she is actually looking at the two sheep dogs to the right that had just brought the sheep near her :-) Well it's a start.