All Things Medical

We had a hectic weekend taking Rose and her friend Emma and one very loaded up car back to Bournemouth after their reading week at home. It was great to have Rose back and spend lots of time with her.

Lymington Marina

Always eager to explore a new place or two, on the way back we decided to travel through the New Forest. It was perishing cold all weekend, but we drove along the coast and managed to visit Lymington, which is a picturesque and busy sailing town and ferry port. It has a pretty cobbled street, which leads to the marina and a busy high street with Victorian and Georgian buildings some interesting shops, market and cafes. The good thing about visiting at this time of year is that parking is easy and everything is quieter, so everything feels much more manageable than it is when you have to push your way through crowds and hoards of holiday makers.

Coastal drive

Lyndhurst

We then drove through the New Forest, a scenic drive where there is lots of heathland, woodland and wild ponies and visited Lyndhurst, which is known as the capital of the New Forest being a travelling route between the South Coast and Southampton. This is also an historical market town with a narrow high street, Victorian and Edwardian architecture and plenty of shops and cafes. It also has an interesting museum and a church dating from 1860, which are both worth a look.  

Lymington

Exploring new places always helps to keep us busy and take our minds of transplant and the endless waiting. I bought a guide to the New Forest and East Dorset as we will be coming and going to and from this area quite a lot over the next year or two while Rose is at university and I intend to do a lot of exploring and sightseeing!

www.thenewforest.co.uk/

Walled garden, Chewton Glen  

After that busy weekend, it was back to all things medical - there is never much escape, it's like managing a full time job-  it all started with a visit to the warfarin clinic on Tuesday. This time I had hoped to be stable like I have been for the last few weeks and was hoping to get a months reprieve from the clinic, but no such luck, my INR blood test was a little on the high side this week, so I have to go back in two weeks time.

On Wednesday Papworth phoned and gave me a date in March for going back in hospital, I seem to be on the phone to them every few days at the moment with one thing or another and between the the two teams.

I also had to spend a bit of time chasing up the Lister Hospital about the scan I need for my ear, so far they have ignored and failed to respond to the two letters Papworth Hospital have sent them and my first phone call chasing them up. In the end I found out they were simply just ignoring them until I had had my next appointment with the consultant. Now I had specifically been told to cancel this, as I couldn't get my scan in time for it and had rearranged it for April so they could manage to sort the scan out before I went back. So you can imagine my frustration. They have now agreed to do a CT scan instead, which I'm very relieved and pleased about and they have promised it will be done before I am admitted back into Papworth in March. So fingers crossed that that will be sorted out very soon.

Wednesday was also the day I decided that once and for all I need to try and sort out the mess that eczema is causing all over my arms, legs, hands, ears and back, there is not much of me left that is normal nowadays! After talking at length with my PH consultant last week, it was decided that the Epoprostenol is not the cause, but the flushing it causes is really exacerbating it and the diuretics I need are adding to the problem of drying my skin. My many allergies to one thing or another are probably what triggered it, but the drugs I have to have are preventing me getting rid of it so easily and now it is becoming unbearably itchy and sore. So I've another appointment at the doctors to make and in the meantime I'm going to have to spend time religiously creaming my arms, legs and back every day at least three times a day, to try and help things and keep it at bay, just adding to the long list of medical requirements and routines of each day. I don't think I will be able to do much about this problem, as I cannot come off any of these drugs until I get my transplant, so I hope I can just keep it at bay.  

The spare yellow sharp bins make good storage boxes!

Typical months delivery

Thursday saw what we now call 'the drug run' in our house, when I have a months supply of drugs and equipment delivered to make up and maintain my intravenous drug Epoprostrenol. Obviously someone needs to be in the house when it is delivered and there are always quite a few box loads of the stuff and we have had to find storage space for it all. It always takes a while to make a list up of what I actually need for the month, which I have to tell BUPA the week before, in fact my very organised husband does a spreadsheet there is so much stuff! I always get a phone call from a dedicated person at BUPA to ask what I will need for the coming month a week before delivery. Then it arrives in box loads and all needs unpacking, checking carefully that all is correct and then sorting and storing.   

Each month I also have several different tablets to help my condition too, I usually have to take 12 tablets or so a day so I'm positively rattling around, as well as having an intravenous drug whirring round all my blood vessels. The medication includes blood thinners, various diuretics, anti sickness and diarrhoea drugs and these I get on repeat prescription from the doctor and local pharmacist and I have a yearly prescription card, which means I just have to pay £100 a year or so for them, rather than the £50 plus it would cost each month if I paid for them monthly. Friday was time to collect my monthly prescription drugs, where I am almost on first name terms with the pharmacist and staff in the shop. They will get a shock in there one day when I walk in with a new prescription for a whole new set of drugs when I get my transplant.

I suppose you could call me a firm, well seasoned and hardened drug addict now!

We were recently in the local Stevenage Comet newspaper and I couldn't get an online link to our piece so here's a piccy.

We also managed to be in the Welwyn Hatfield Times again this week, as they did a follow up article about the record number of people who had signed up to become organ donors since the ITV 'From the Heart' week. It was great to just keep the story going and hopefully may prompt a few more people to sign up to be organ donors.

http://www.whtimes.co.uk/news/knebworth_mum_s_delight_as_nearly_150_000_join_transplant_register_1_1953440

We also got a lovely card from NHSBT, thanking us for playing a part in their campaign that week, which was a really nice touch.

It is now 528 days that I have been waiting for my transplant, the last 28 days have been hectic, but during that last month of February 84 people will have died while waiting for their transplant and while I have been waiting 1584 will have lost their lives. So if you haven't already, please use the link below and sign up.

If you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

     

Between a Rock and a Hard Place

'Waiting has never been our choice in the past, nor is it in the present. We are always striving, anticipating the future and preparing for it'  

Flowers amidst the bleakness

I realise that as we go on each day, week and month and years even now, my illness has become 'normal' for me, what was once my normal world of busy wife, mum and teacher has been completely lost now and has somehow slowly slipped away and the reality of being ill and all that goes with it has become normality. Waiting in for drugs, collecting drugs from the pharmacy, visiting the GP, hospital stays, visiting the warfarin clinic, visiting the PH clinic, visiting the transplant clinic, blood tests, walk tests, lung function tests, CT scans, X-rays, echo- cardiograms and ECGs and managing the actual physical symptoms of being ill, which are many, plus all the various medication and intravenous drugs are all the norm for me now, where once upon a time even a visit to the GP would have been unheard of. In fact when we moved to our house seven years ago, I didn't even move GP surgeries for about the first three years! Now it's all normal to me and in the course of our everyday lives, sometimes it feels like I've carved out a career in being ill, which is not how I want to be or be defined, but it is difficult to stop it completely taking over and getting buried underneath the towering heap of it all. It takes a tremendous lot of effort and hard work sometimes to breathe normal life back in amongst it all, but we all keep trying our best and keep striving towards the future and trying to be prepared for my transplant when it comes.

This week has been a difficult one, on Wednesday I went back to Papworth for my three monthly visit to the Pulmonary Hypertension team, this time a full MOT on the day ward. I've done this before and knew what to expect; a deluge of more tests to go through: blood tests, walk test, lung function tests, x- ray, echo-cardiogram, ECG, MRSA tests, Hickman Line and pump checks, plus a thorough checking out by a doctor or consultant. So we prepared ourselves for a very long day.

I don't mind most of the tests now, as I've said, they are all a normal occurrence to me now, but for some reason I absolutely hate and detest the Lung Function Tests. I don't know why really, as they are not painful or anything, but there is just something so humiliating about sitting with a peg on your nose and some technician ordering you to blow this way and that way into a tube, then making you keep repeating it over and over again until they think you have done your best.

'We have to make history and approach the future with steady steps, not wait for the future to come to us'

A whole year ahead of us!

Following all the tests I had a thorough checking over by the consultant. It was at this point, when all seemed to be going well, but then after some discussion about the tests and about my quality of life that she broached the idea of having my intravenous drug increased. She thought my quality of life could be improved by having a higher dose of my intravenous drug and also that by doing this it would be preventative measure against further deterioration while I wait for my future transplant. I also had some signs of deterioration before Christmas and it is two years since it was last increased.  She thinks I need to be able to enjoy a better of quality of life now, not keep putting up with so many restrictions while I wait for the transplant that always just seems to loom in the future and be just outside of my grasp.

Now having the Epopostrenol increased may not usually be too big of a deal for most patients. It involves being admitted into hospital for a few days, the nursing staff will then either increase the flow rate of the pump gradually over a few days or slowly increase the amount of drug in the syringe on the pump, whilst you are wired up to and monitored on a heart tracing machine. All should be sorted within a few days and then you are allowed home if all is well. Some people get some mild side effects: headache, nausea, jaw pain and flushing are the usual ones, but then that normally will subside and you go home and feel much better.

For me it is a different story, unfortunately I have had a worse reaction to Epopostrenol than most patients usually do.  The first encounter, actually, being put on the drug resulted in three weeks of being sick, diarrhoea, searing headache and jaw pain and flushed skin. The sickness and stomach upsets resulted in me being placed on drips because of dehydration and I was unable to eat or drink anything, not even a mouthful of water and became bedridden for days. It then subsided and I had minimum side effects by the time I was allowed home.

Then came the time for the first increase, for this I reasoned well maybe I'm used to the drug it may be easier this time, but this wasn't to be. I came into hospital just supposedly for the weekend and two weeks later after a repeat performance of last time I was allowed home. This time I was still being sick and felt very ill and it took a few months to feel properly back on my feet again, but I have never really been the same again and I still have some side effects two years on and have to have medication for the sickness and stomach upsets and suffer badly from headache and flushed skin. On the other hand the drug saved my life and has improved my Pulmonary Hypertension. Love this drug; hate this drug.

'True joy is that which comes from progress and success.'

Now the consultant is aware of all this, but thinks there may be a chance my body may cope better this time, as I am now well established on the drug, but she cannot promise anything and she did give me a wry smile when she mentioned coming in hospital just for the weekend, indicating well yes it may be weeks!  

Spring has sprung!

So for me it is quite a big deal to put myself through this again, but my biggest worry is what state I will be left in afterwards. It will almost definitely keep my Pulmonary Hypertension at bay and maybe improve my exercise capacity, but it may come at a price of worsening side effects that drag my quality of life back down. We also discussed the transplant with her, and again found ourselves considering similar odds for surviving PH and surviving transplant. As Rob says, for both situations, 'we are stuck between a rock and a hard place'. Impossible decisions. Decisions we wish we hadn't got to make. Sleepless nights. Tears.

Well the transplant decision is made, sometimes I wish I'd just had my transplant right away and then all this would be taken off me, but then again I would be facing new problems, but at least the deed would have been done; however, the transplant decision is made, questioned sometimes and that's healthy I suppose, but the same answer is always forthcoming, transplant is my way forward and the only way I can see to make some proper progress in my future.

I have also made the other decision, a no brainer really in the cold light of day, Pulmonary Hypertension is life threatening, sickness and upset stomachs are not, so with some trepidation, well a lot of trepidation, I am going back in hospital for the increase and I will just have to get on with it afterwards whatever happens. I have asked if I may wait until after Sarah's twenty first, as I don't want to ruin things for the surprise plans we have made. So it looks like the middle of March will be the time.

Sometimes it's along and winding path before you get there! 

So I've got a few weeks respite to pick myself up, brush myself down and go for it. As a friend of ours once said when facing secondary cancer, 'time to get my walking boots out and get ready to climb the next mountain'. And she did, and I will! The consultant told me to stay positive, well for me being realistic is my positive in this matter. Expect what I have experienced before, after all that is all that I have got to measure things from and who knows I may be pleasantly surprised after all. Believing that all will go swimmingly is asking for a fall at the first hurdle if it it doesn't, but I do believe that we will all manage this as a family whatever happens, just as we have always done.

Decisions where the outcome is life changing or even life ending seem to be happening too often for us and Rob is wishing for the time when decisions we have to make are just simple ones again. Decision, decisions and more decisions about illness and life are a thing many sick people have to face and I know I am not on my own this week. One PH friend is facing a decision about life threatening treatment and another is facing the impossible decision about transplant. It would be so good to see into the future sometimes and not have to weigh things up on sterile medical data, which we often end up doing. So here's hoping anyone facing a tough decision this week, can come to a conclusion they feel brave enough to cope with, even if they are unsure in any way.

'People naturally like comfort and relaxation, but it is more satisfying to work hard and enjoy your achievements'

The most amazing news this week and news that gives me some strength and hope amongst all of this is that 147,000 people have signed up to be organ donors. How fantastic is that? Somewhere lives are going to be saved and again, I can't thank ITV enough for raising awareness of organ donation and the plight people like myself find themselves in. The bravery of the donors and the generosity of their families during such a testing and tragic time has also been discussed and the difficult times families have had to face losing a loved one while waiting for a transplant. People are discussing organ donation and that is a wonderful thing. It has been uplifting to play a little part in all of that and I'm sure there will be lots more opportunities along the way to continue the campaign. It was a busy week or so, nerve wracking and fun both at the same time and it's good to see such high rewards after such a big concerted effort by a lot of people.

Rob says that since I said, 'I would like to do something about raising awareness of organ donation and Pulmonary Hypertension, but I'm not sure what', back in autumn, we have managed to do quite well really, talking in the House of Commons, being on the local radio, being in the local papers and being on the regional and national news. We are really thankful for the opportunities that came our way to do this and I'm hoping it will not end there and we will seek out more opportunities to keep up the campaign in the future.

I have put the link to the ITV website below, which is full of transplant stories, so you can see it if you happened to miss anything (you probably needed to be out of the country for that), but really I just like scanning the page because both me and Stacie are on it, doing our little bits and it's a lovely souvenir of the week for us both!

 http://www.itv.com/fromtheheart/

The little proverbs are Arabic proverbs, three years ago during February half term, we were lucky enough to visit Dubai and every day a little proverb card was placed in our bedroom. I just came across the cards recently as I had saved them and thought them apt!   

     

Just a reminder if you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

     

From the Heart

Late last Friday afternoon I got a call from my Transplant Co-ordinator, she began the conversation with 'don't worry it's not your transplant call', as she always does, so I know not to start getting in a panic and went on to ask if Rob and I would like to be interviewed by ITN news about living on the transplant list. Of course we were happy to try and help. She explained how ITV are running a whole series of features, interviews and programmes during the whole of next week - starting Monday 11th - to help raise awareness of need for people to stop and think and register on the organ donor register. She explained that the ITN news are reporting from Papworth for their main news bulletins and will be filming for two weeks starting this week. This week they are filming interviews and features around and about the hospital and at various other locations with pre and post transplant patients and next week they will be broadcasting these features live from the hospital. They are also on standby should a transplant operation take place and I know several of us have agreed to have our transplant story filmed, should we be lucky enough to get the call, it would really be the icing on the cake for promoting organ donation should a transplant happen, so fingers crossed some lucky person gets their call.    

It was only after when I thought about this phone call, that I realised it hadn't even entered my head when the co-ordinator rang that it may be my actual call, it should have done really being the end of the week and end of the day. I think this is the result of waiting for so long, it's as though it isn't really going to happen and it's becoming a bit of a fantasy. I think I'm going to be in for one big shock when that call actually comes and I've needed to just remind myself that this will happen sometime.   

The filming was scheduled for Wednesday and as we got to the morning I began to feel a little nervous and apprehensive about what was going to happen. Do you ever stop for a minute and wonder where life has brought you? Here we were anticipating ITN news coming round ours to chat about waiting for a heart and lung transplant- a situation that would have been beyond our wildest imagination less than three years ago!  

Well they actually arrived and it wasn't a dream and we were even more surprised when we saw that the reporter was Lawrence McGinty, the Science and Medical Editor for ITV news. We have often seen him reporting on TV and had even joked in the past about how we need someone like him on the case of PH and Organ Donation and then here he was having a cuppa with us in our kitchen!  

It was all relaxed and informal, although I did feel nervous and think I did waffle on a bit; I hope I did manage to say some of the right things to get people thinking. I know too, that PH and organ donation are both huge topics and could be discussed for ever and a day, so to think of everything in just a few minutes, with lights and camera and people watching you intently was a difficult one, I knew I couldn't possibly say everything!  

We are so delighted with ITV, that they are taking the bull by the horns and giving organ donation this most valuable air time. It is a real boost for people in our situation to know that somebody, somewhere is standing up for our cause and people are getting together in a hugely co-ordinated and concerted effort to help us in a big way, at last we are not slipping by unnoticed. It has got to get people talking about organ donation and discussing it with their families and hopefully get lots of people coming forward to sign the organ donor register. I personally cannot begin to thank them enough and I will be staying tuned to the TV for most of the week next week! 

So what to watch out for each day starting Monday, February 11th:  

Daybreak

This Morning

Loose Women

ITV Lunchtime, early evening and evening news with features live from Papworth Hospital

Wednesday 13th 'Tonight' Programme and 'From the Heart' entertainment special

Daily local TV reports and features about transplant

And don't forget: Our interview with ITN news will most probably be on Monday lunch and early evening news, but keep an eye out; my friend Stacie on Daybreak on Wednesday 13th; follow Will Pope's story on Tonight on Wednesday evening!  

www.itv.com/presscentre/ep1week7/heart

Following our excitement of Wednesday, we have had a flurry of local media attention through my blog and a husband, who has taken to 'tweeting' about transplant and organ donation. So the week has continued being busy, busy and I will tell all about the excitement of the next few days in my next blog soon!

Meanwhile if you want to register as an organ donor: www.nhsbt.nhs.uk/  

Support the campaign for an 'opt out system for organ donation: http://epetitions.direct.gov.uk/petitions/38220