Elephants and Sheep

Views from Voi Lodge, Tsavo East, Kenya 

A friend of mine recently described the aftermath of her recent transplant assessment as the 'elephant that is transplant'. Anyway that got me thinking about 'elephants' and the 'elephants' that have now taken up residence in my own life.

I have a lovely memory of elephants, when we got married Rob and I were fortunate enough to go to Kenya for our honeymoon and we went on safari. Here we enjoyed many a precious moment watching elephant herds come to the watering holes at the  safari lodges we stayed in and spotting elephants meandering on their way through the grassy, hot savannah to find their next rations of food and water. I can remember stopping in the safari van for quite some time as we all quietly watched a most gorgeous baby elephant just wandering aimlessly along the red and dusty dirt track we were travelling along. I recall it being so cute and endearing I wanted to take it home with me. We also had to be wary when a large elephant bull was hovering in our wake and I remember that being one of a few scary encounters when we had come face to face with the wildlife out there.

Drinking and bathing

Little did I know that I was carrying a baby 'elephant' of my own at this time, that was quietly and slowly growing inside of me, called PH; it didn't really hurt or affect me then, but today it's turned into one of those enormous, scary bull elephants, lurking and threatening as I face it head on, living day to day with it and all the restrictions it brings as well as feeling unwell on a daily basis, which is just becoming normal to me now, but it isn't normal.

Take me home, I'm so cute

On top of that there is the 'elephant' called transplant, as my friend describes, it's another looming, immense, bull elephant too. There is always that hard decision to go ahead with it all weighing on our minds and all the hundreds of questions and 'what ifs' that that decision once made might bring. Whatever you are doing at any moment in your life there is always the thought the call could come at the moment, what is the plan if the call comes at that particular time; there always has to be a plan wherever you are, whatever you do and a plan for everyone else that is involved. There is always the dark threat that you may never get the call and all the what ifs that go with that; that is a no go area in my mind, just so I keep sane, but it is also a reality. Then there are all the 'what ifs' that come with having the transplant; will it really give me a better quality of life than I have now? Will I really feel better after a while and be able to do things again that I can't do now? What if it makes me feel worse? No-one can give us the answers, everyone is different and unique, but it is a chance we have decided to take, because it is the only option that offers real hope. Still it feels like the weight of an elephant on us at times.

Don't touch my baby, I'm a big bull

My other large elephant is my intravenous drug Epoprostenol and living with all that entails on a daily basis; then again, I love this elephant too: I wouldn't be here living life as fully as I am trying to without this elephant, so this one is perhaps the mummy elephant, giving me a good quality of life while I wait, nurturing me on, but being a pain in the back sometimes while she has to do it. There are a few small baby elephants kicking around in my day too, the warfarin and the yo yo that is INR levels. The restrictions of diuretics when really you just want to be getting on with life; sometimes I think my life's new calling could be to be a toilet inspector or reviewer. Woe betide you really, should you dare take the spironolactone and furosemide drugs when you are on your way out!

Visitor amongst the spring crocuses

River Levens

Everybody has their 'elephants' and their own way of dealing with them. For us, keeping busy and trying to enjoy life to the full helps keep our 'elephants' tame and under control. Just after Easter Rob and I enjoyed a week back in the Lake District, here we are lucky enough to have our own place, which we have lovingly restored over the years. We had spent years visiting Cumbria with our children prior to this and I have many childhood memories of holidaying there as my parents always owned caravans in this area. I was also brought up in the North West, so the Lake District was always within striking distance for a good day out and these days it is near to my family, who are still in Lancashire.

The world famous topiary garden at Levens Hall, stunning as always

So it is a very special place to us, we are always content when we are there and there are always new places to explore and favourite places to revisit. When we are there our 'elephants' feel more like 'sheep' and feel further away from us, we relax and unwind and just enjoy being carefree and getting out and about, often just experiencing simple pleasures like sitting by a lake and watching the world go by, or driving around admiring the scenery, especially the new born lambs and daffodils at this time of year.

Post office, Beetham

Foraging amongst the reed beds at Leighton Moss RSPB reserve

Just the two of us, Blakwell Arts and Crafts Centre, Winermere

Pots all bright and tidy now!

Sunshine on the rocks! 

 Windermere peeping through the trees

Only sheep allowed in this house

We had a lovely time and managed to catch up with family in Lancashire, which is only a stones throw away, we tried a few new pubs for lunch and this time just visited places that were nearby, but as stunning as ever. We pottered about locally with our cameras, caught up with friends and did a bit of spring cleaning and tidying about the house.

The weather was cold to start with, but soon began to get milder, with a bit of spring sunshine, which in turn also gave us a lift, I think it has for everybody. We are back home now and it is much milder and sunnier and everything else feels that way too. For now I've brought back some sheep to replace the elephants and things feel easier to cope with.

Just spring lambs now!

I have been waiting for my transplant for 575 days now and one day I feel in my heart that that call will come and things will go well, somehow I just have that feeling that things will be alright.

One day I would like to have a ride on an elephant, perhaps in India or in the Far East. I feel like it should be easy, by the time I get to that point I will have ridden one many times mentally and emotionally and negotiated myself around them over and over again...    




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Just learning to negotiate the elephants

   

Spring, Snow and Feeling Inspired

No spring flowers, enjoying the orchids indoors instead

I am back home again now after a very positive hospital visit. I'd aimed to be home for Easter and today I cannot wipe the smile off my face because I've got to come home a whole week earlier than I anticipated. The up- titration of my intravenous medication went really well and I've managed to undergo and tolerate three increases. As each day went on, each day I was more and more chuffed, each day the doctors were more pleased. By Friday they said I could go home and it was smiles of delight all round; Rob and I were beaming and all the doctors and nurses were too! It had all gone unexpectedly well and the only reason they didn't go for a fourth increase was that it would mean a complicated switch to using two phials of Epoprostenol rather than one, which would be expensive as well as a whole new routine to adapt. One small increase wasn't really worth the expense or the hassle. We will start from there when they next need to increase and it will then be worth learning a new routine to make up the drug and the extra expense of using double the drug.

It's becoming the usual view!

I am so pleased how this has gone, not having to go through all the illness it has caused me in the past has been a massive bonus and to come home feeling as well as I was when I went in hospital is a first for me, and a wonderful and pleasant surprise. Best of all though is the knowledge that I am tolerating this drug, Epoprostenol, quite well and that gives me some security and promise for the future now; if things deteriorate again they will still be able to increase the drug now and I should be able to cope. For a long time, the ability to do this was unknown and it was always yet another major worry in the back of my mind. So the future while I wait this long wait now feels less frightening and I know there is still quite a way to go yet with increasing the medication, something I had no measure of confidence in prior to this week. The nurse even gave me some brand new pumps and spare kit for my IVdrug, so it feels like I'm starting over all again with this Epoprostenol, but this time on a much more and very positive note.  

Rob and I are feeling a bit shell shocked today, but for all good reasons!

Where are the daffodils?

I cannot thank the PH team at Papworth enough for all their love, patience and care while they looked after me this week. It is so nice to be with medical staff who know you well and all you have gone through; two of the doctors looking after me on the ward this week have been with me right from the very beginning of my journey with PH and were so supportive and encouraging, along with the specialist PH nurses and the other ward staff, many who have known me from day one as well. So, yet again, I can't thank them all enough. I also managed to see and chat to a couple of the Transplant Team too while I was there, which in turn helps me to get to know them better for when I go completely under their care. I was on the ward with my friend Sita too and it was really lovely to spend some time with her, she and Mikey are such an inspiration as they cope with one hurdle after another following Sita's transplant. It was so nice to see them both still smiling despite everything they have had to face.

I had been looking forward to seeing all the daffodils out in the garden when I got home, Rob had planted lots more bulbs in autumn, then we would get a good show to enjoy in spring. There hasn't been much chance of that though because, like everyone else, we have had heavy snow and it is still snowing heavily out there. The daffodils are now hiding under a thick blanket of snow, but I'm hoping they will be resilient and spring back when the snow thaws.  I am so looking forward to that, but for now I'm just enjoying simple pleasures, enjoying being home, having a lazy day and feeling very positive about spring when it decides to come, as well as having a lot more confidence in the future while I wait for my transplant.

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Epoprostenol

This last day or two I've been busy getting ready to go back in hospital to have an increase in my dose of my intravenous drug Epoprostenol. This hasn't been done for a while and the doctors want to try and keep me stable, there have been one or two signs of deterioration lately and they also want to try and increase my exercise capacity to give me a better quality of life. Although they are quite pleased how my heart is coping, it is still not working like a 'normal' heart with its irregular beat and its extra loud sounding beats and murmur and the fact that it's still dilated on the right side, it is having to work extra hard to keep up with me all the time. I still find it hard when I see this written in black and white and when the consultant says it's not like a normal heart, although I have been living with this knowledge all this time now. I suppose it's another of those things that goes into that little set of compartments at the back of my mind, so I can carry on going forward into the future without thinking too hard about it. So this increase in Epoprostenol is planned to help my heart cope and work better.

Crono pump

Epoprostenol is a prostacyclin drug which relaxes and expands the blood vessels and stops blood cells clumping together. It increases the survival rate for PH and is similar to the natural prostacyclin produced by the cells lining blood vessels. It is only active in the blood for five minutes so has to be taken as a continuous intravenous infusion twenty four hours a day. The delivery system is complex and requires you to learn sterile preparation, operating a pump and caring for the catheter, line and entry site. I change it every twelve hours, to leave it longer would be at risk of causing an adverse reaction, my heart would suddenly have the help it needs to work withdrawn.

All the bits, twice a day! The orange line is every other day

It is stored as a powder and it's a complex procedure involving needles and syringes and dilutant solution to prepare it. Sterile conditions are needed for this preparation as the drug enters the blood system and is directed straight to the blood vessels in the heart and lungs, before it also reaches all the other blood vessels in your body. So infection is also another major risk as well as interruption of the drug.

I have to carry a spare drug kit and pump with me at all times in case of emergency and an interruption to the pump and I have to check the catheter entry site daily for any signs of infection and report any unusual symptoms I may be experiencing in case it's due to infection. An infection getting into the blood stream can cause septicaemia, which is life threatening. So having this drug does bring its challenges, but being well prepared and knowing the signs for infection these risks can be minimised.

All the extra bits: keeping sterile, sharps bin and waste tray

For many people on this drug there are some side effects, amongst them: flushing skin, jaw pain, headache, nausea, diarrhoea, palpitations and rashes, but they usually settle down once you are established on the drug. If you are a regular reader of my blog you will know that the side effects I usually experience are unusually severe, so I am preparing for a rough couple of weeks. It usually takes just a couple of days in hospital to have an increase, but my past experience has been at least a couple of weeks and then a good month or two to recover. I know it is the right thing to do though and can only follow the recommendations of the experts, I also need to demonstrate to the transplant team that I will follow the medical advice given, there will be no 'shall I, shan't I' when it comes to post transplant drugs.

Dressing change time

Obviously I am not really looking forward to all of this and will be going into hospital with some trepidation, but I keep asking myself, 'what is the worst that can happen?' Well at worst it may be several weeks of being ill and a month or two to recover then I will be back on my feet and feeling better with the added bonus of being half a stone lighter and energised for summer or at best I might be pleasantly surprised and be out of hospital in a few days with a new drug routine and a spring in my step! So I have been checking and repacking my hospital bag and trying to keep all the household chores up to date so I'm organised for Tuesday.

It had been crossing my mind whether to ring ahead to Duchess Ward and give them a few weeks warning that I am coming so they can book their holidays while I'm in there. Some people are remembered for all the wonderful things they do in life, but not so me with the ward staff at Papworth. I know I am well remembered as the 'puking patient'! Even the lady who kindly brings the tea  round commented to me at Christmas how well I was looking compared to usual, on that occasion they hadn't increased the medication! Really though I am looking forward to seeing familiar faces more than ever, if things go badly they are warm and compassionate and treat me as family and they will help me get through it and get me home again like they've done more than once before. Because I've been through the minefield of Epoprostenol, the specialist PH nurse at Papworth has asked me a few times to speak to patients who are facing having the treatment, so perhaps I haven't done that badly after all.

Aside to all of this, I was brought back down to earth even more by a letter I received from the Transplant Team, along with all the other patients waiting for lungs. The letter explained about all the various types of lungs I may be offered: smokers lungs; lungs belonging to a patient with a brain tumour; lungs from an older person; lungs from a drug addict or someone with high risk sexual behaviour; organs from a donor following a cardiac death; organs that have been placed on a machine to improve their function before transplantation. Now all this sounds very daunting and also highlights what a chronic shortage of organs there is. This had already been explained to me during my transplant assessment, but it is hard to see it all noted down in one long list, but I have had to agree to have whatever can be offered, the alternative isn't much option. I also trust the Transplant Team fully  that they will check the organs are fully suitable before going ahead with a transplant and I'm not going to dwell on it any further, it's yet another thing that can go into one of those storage compartments I have in my head.

We did have a chuckle though trying to imagine different scenarios of receiving lungs from someone who had the whole range of problems, what would the chances of that be? Well as long as they are good strong lungs, I would be more than happy to accept the wonderful gift and be grateful for evermore!

It's a good job there is a lot of support around at times, support from other patients who are going through the same, there are quite a few of us and support from patients who have PH. On Saturday it was good to meet up with the Papworth PH Matters Support Group in the Papworth village library. This group is for patients and anyone else who has been affected by PH. We had some excellent speakers, the chairman of the PHA Association UK, who just happens to be a PH specialist nurse too and specialist nurse from Papworth informing us about many aspects of PH. We enjoyed a lovely buffet, raffle and a good chat. Everyone is welcome to the meetings, you do not have to be a Papworth patient and next time in June we are going to get a tour of the path lab at Papworth and see what they get up to with all those blood samples they like to take, we will also have a talk about all the different blood tests we have to suffer! We will also be having a talk in September from one of the PH research team from Cambridge University. The help, support and professional information we get from the group is invaluable to us patients, so thank you to all those who voluntarily organise everything for us. The dates for the next meetings are: Saturday June 22nd; Saturday September 7th; Saturday November 30th. The meetings are held in the Papworth Everard Library Complex and start at 12 noon, everyone is made really welcome.  

Well it's time for all guns blazing: dentist, eye testing and a visit from BUPA to service my medical pumps on Monday and warfarin clinic on Tuesday morning and by Tuesday mid day I will be checking in on Duchess ward at Papworth. Mr G is now in charge of updating my blog ...  

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