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
 

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