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.

Out of hospital

Sorry it has been so long since I last blogged. I am now out of hospital but have been going in almost every day for check-ups and as you know you are kept waiting around for hours to be seen and then hours for test results which is very tiring. I am doing well but get tired and I am still suffering from some sickness at times.

For the next few weeks I am staying with my parents so they can look after me and take me to appointments. I have been able to see the children but going home and being with them all the time would really tire me out. I hope to go home in a week or two when I have built my strength up a bit more and can cope a bit better, after all I was out of hospital in less than four weeks and I was told I would be in for six weeks so it is early days yet and I have a long recovery ahead of me. As you can imagine I am finding it all too slow and I have been warned there are likely to be set backs along the way!

I hope all of you are well and I will update you soon.

Regards

Roz

Downs and ups of the weekend

On Saturday morning Roz was feeling awful because of the number of tablets and medicines she has to take. With her stomach lining in repair mode, and her taste buds shot to pieces it is no wonder.
She had a slight yellowing of the eyes, and a slight nose bleed, so the Consultant told her to go to Birch ward at Derriford. They checked her out and found she did have a slight kidney problem - hence the yellow, and were concerned that she was not drinking enough. The result a 1 litre of fluid straight into her Hickman line.  She was very pleased to hear that the CMV results from King's showed that her new bone marrow was fighting it off.

Today, Sunday she did a lot better. Her children are all without colds etc, so Steve and both kids came over for the weekend. Seen below - Roz and Isabel taking a walk

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

What a drag!

Roz had to go into Derriford to have her lines checked, blood tested and a top up if needed. This should have taken one and half hours in outpatients if no top up needed. In the end it took just over six hours - plus 90 minutes travel. One hour was a delay before being seen, that is after the appointment time. Then seen, and dealt with in a 'proper manner' . The nurses, doctors and catering staff were very nice and good.

After a further two hours the main blood results came back - all very good. So we just needed the potassium etc. To cut a long story short, much to the embarrassment of the nurses and doctor, several calls to the lab, the 'mislaid' sample was found and the results came back - well all but the magnesium. Roz had accidentally missed out out on the sandwiches at lunch time, so a very kind lady brought her one at around 4:00 p.m., not realising that beef sandwich is not all that appealing to a vegetarian. Roz was sent home - exhausted.

On the way we stocked up on a veggie pastie, popped back to her house to pick up warmer clothes, and came back to the farm for a hearty dinner - a great recovery sign.

A couple of hours after she left the hospital the magnesium results came in - this of course was the only one she is low in -  - so she has to go back again tomorrow to Plymouth morning for a top up.  This could have all been done today in about four hours including the top up. Grrrrr.

Then we have to drive the 5 hours to London, stay overnight, and the repeat the tests etc at Kings before driving back home again - she is not allowed to use public transport yet.

What a drag! Well not to worry if the results continue to be good.

Footnote
When Roz went back into Derriford, the Doctor kindly went through the results from yesterday - it was a bit concerning that the were different from what she had been told the day before.

The nice thing while waiting is you always find lost of lovely patients to chat to. They always have good ideas or tips that might be helpful - and lots of really bad jokes of course. Nearly as bad as Bruce's !

Out and back at Mum and Dads

Ros waiting with her luggage for the car to come around, with Mark - one of the great nurses who had brought her down from the ward

The journey home was a long one - around 5 hours in the car. We stopped a couple of times at service station on the M4. She has to go to Derriford Hospital on Monday and we have to drive back to Kings for an appointment on Wednesday - she could easily catch something on public transport. The car has been cleaned to nearly show room standard, and then wiped down with antiseptic wipes. We stocked up well with nibbles and CDs - talking books can pass the journey well

Steve and the kids came over for the week end. Isabel had to wear a mask as she had a bit of a snuffle - she pretended she was a nurse!

Going home today - but very late on

We have been waiting all day for Roz to be discharged
She has been on drips through her Hickman line since 10:30 this morning. Topping up with everything you can image, finally two pints of blood. So we hope to get out at around 10:30 tonight!!

 Above the last of the blood transfusion goes in

'Aahh that was horrible.' said Roz. That was a potassium tablet, in water

Good news - the pharmacy has turned up with all the drugs she needs, before she pops into Derriford Hospital on Monday for a checkup.

She has been eating much better and just wants to get out

So we will take her to Roberts overnight and then down to the farm tomorrow. Steve has a cold and Roz is very weak so she is not going to her own home for a while. The kids will pop over to see her though - and Steve can wave through the window.

Its so easy to get depressed

Roz had a rash and got one of the doctors to have a look at it. She was told it was not too bad, but could be a sign of host versus donor rejection. Guess how you feel when a doctor says that a few days after a transplant. So Roz was quite upset. Later the lady Professor came around, had a really careful look and said she thought it was not a problem. A dermatologist inspected Roz later and said it was not a problem and was not the host donor issue. So for hours the patient worries unnecessarily. She also got depressed yesterday morning, as she really just wants to go home, and the staff were very busy with other people - so she was on her own until Barbara arrived at 2:00. It shows the importance of relatively constant supportive care - the nurses, doctors and other staff have been great, and we have been there as long as they will let us.
She is also still  not eating much. Linda (a nurse), Barbara and I had a chat with her, we got her some Heinz soup, had it heated up and she ate it. She has now down this twice. Part of the issue that many patients get is that they can eat food that they have chosen, and have control over. More soup today. More walks. More exercises.


There is much talk about discharging Roz, so I went down to Devon by train, slept overnight on the farm and brought the car up to London. So we are ready. Its a matter of stabilising her potassium, because the anti-fungal stuff she has causes some people to get rid of potassium from the body through your urine.

We were upset to her that Roz's Auntie Pauline has had to go into hospital with gall bladder stones - very painful - and she will need an operation.

First day out of the room

Everybody keeps telling me I am looking better, but it does not feel that way. My nuetrophils are up, but I still feel sick.


I had two outings today. I went of for a short walk which made me feel a lot better. I bumped into another patient that I know, and had a chat for a while. And I like going up to X-Ray

Love Roz

Richard has venesection - blood letting to you

My MDS has this side problem of haemochromotosis - which means excess iron in the blood. A rating over over a 1000 can be dangerous to heart and other major organs. The solution is simple to take 500 mls (a  pint) of blood every now and then. When I was at 800 they took a pint every two weeks. Now I am down to once a month - and today's ferritin (iron) level was 462. Only another 412 lower to go, to get to a normal 50.

The needle they use, as above, is huge in comparative terms. (My friend Bruce says 'I've seen smaller harpoons' ) I distracted myself by telling my left arm that it was not attached to me, chatting to the nurse and Barbara, and taking these photos.
The blood is drained into a bag, and then thrown away - which is a shame as there are lots of patients with very little iron in their blood.

This is a few minutes later at around 480 mls - 20 to go. And then they have to pull this huge needle out!! You do not want a trainee nurse doing this - believe me. This nurse was excellent. (I guess giving blood is much the same - so hats off to those that do it.)

Not only has my iron gone to a more acceptable level, but my neutrophils have gone up from a miserly .62 to .8. Nowhere near Ros' s latest 11 !! All my other blood counts at low compared to a normal person, but have got no worse for a while - so that is good.

The net result is that I feel a lot better - less fatigue.
I have a bit of a sniffle in my nose today - so cannot go to see Roz until it has cleared up. Barbara is with her

Some more good signs with Roz

The GCFS is doing its business well. Yesterday her neutrophils were 1.3, which was good. Today they have shot up to 11 !! Which is way above a normal person - so that is tremendous news

She is, however still feeling rotten, mainly from nausea. So she asked us to get us a pair of those arm bands you put on to stop nausea when going on the sea in a boat of some form. We shall see if it helps.

(PS Roz is not up to doing an entry at the moment)

Things are progressing

Roz is still feeling ill - nausea, sickness, sore throats, slight temperature, mouth ulcers, etc. All to be expected we understand - but it still makes you feel pretty ill and very tired.
Seven days after the transplant they gave Roz an accelerator to encourage the stem cells that had migrated into her bone marrow. This is called Granulocyte Colony Stimulating Factor GCFS - targetted at improving neutrophils. This will encourage the production of new blood cells.  When this happens you sometimes get pains in your big bones.

The really good thing is that she has had pains in her hip bones the last few days. This is an excellent sign.

Seemingly many of these symptoms reflect the progress to the next stage of recovery. There is a book called the Seven Steps to Recovery - however Roz choose not to read it in detail, and just take things as they come

The other good thing is that all Roz's blood results are going in the right direction. In particular her neutrophils, which were down at less than .1 about the time of the transplant, are now back up over 1.3. (Mine are only .63 so she is doing well) Normal is still a lot higher - about 2.5 to 7.5, but this is one of the most encouraging signs for being sent home at some point - it means she is building up resistance to infections.

Kings College Hospital