Afternoon Tea? Why Don't You?

We had a fabulous afternoon at Luton Hoo last week. Luton Hoo is a large mansion house, which is now a five star hotel, on the borders of Hertfordshire and Bedfordshire. It has some stunning formal gardens designed by Capability Brown and is surrounded by glorious parkland and meadows. We were delighted to have received a Christmas gift of an afternoon tea there from our friends Ilaine and Richard. 

The present house was built in the 18th century, which makes it a perfect venue for a traditional English afternoon tea seeing the concept of 'afternoon tea' was developing at this time; however, it was during the early 19th century which really saw a rapid rise in tea consumption, as the upper classes increased the tradition for serving afternoon tea following a trend set by Anne, the seventh, Duchess of Bedford. She started taking a light meal of afternoon tea each day, then started asking her friends to join her. This soon developed into her throwing big afternoon tea parties and this trend soon caught on amongst the upper classes and everyone began throwing afternoon tea parties. 

The demand for tea increased greatly, resulting in the 18th century clipper ship era, where regular tea runs where made between India and China by ships like the Cutty Sark, which is now based in Greenwich, London. 

Eventually, as people began to travel more and more, many of the big hotels began to serve afternoon teas and tea shops began to open up everwhere. A traditional afternoon tea usually includes a range of sandwiches, various cakes and scones, jam and clotted cream, typically served with loose leaf tea in a pot and sometimes a glass of champagne. 

Nowadays we still enjoy our tea and cakes amidst our busy lives as we stop to enjoy a break from shopping or sightseeing. It is more of an occasional luxury or treat though to be able to get dressed up in your glad rags and enjoy an afternoon tea in a large country house or fancy hotel together with a glass of champagne. 

We had been really looking forward to this, getting all 'poshed up', visiting a historic house and enjoying a treat of sandwiches, cakes, scones, tea and champagne. We weren't disappointed. The service was very attentive and we felt well and truly pampered. They presented us with a beautiful platter of cakes and scones and as I am unable to eat various foods because of my poor immune system they went out of their way to provide sandwiches that I could manage. They offered us a selection of various teas, brought as many fresh pots as we needed and even poured it for us! Then we rounded off the feast with a relaxing glass of champagne. I am allowed a glass of alcohol now and again and it's nice to be able to relax and enjoy one now that I'm feeling much better than I have for years. 

It had been a very stormy day, but as we were ready to leave, the sun was peeping through and shining on the stunning gardens. We could see the sweeping view through a very tempting pair of glass doors as we left, so we decided to venture out there and explore, as usual, a camera to hand. The sky was looking stormy and at the same time very spectacular as the late afternoon sun was about to set. It cast a beautiful red glow over everything. 

We wandered around the gardens, admiring the views and I was deep in thought about what it would have been like to live in those grand old days of glamorous afternoon tea parties - I think I had been enjoying myself too much, had got myself into the spirit of things and have watched a bit too much of Downton Abbey! I was abruptly brought back to earth as I skidded on the slippy pathway: the paths have suffered with all the wet weather and were mossy and slippy and I did have my high heels on after all! Luckily my balance is back and my legs are strong again following my transplant and I managed to save myself from falling. 

Returning to the 21st century once more, I suddenly realised how different life is today. I wouldn't have survived my illness if I had lived back then as there were no such things as Hickman Lines and no medicines for Pulmonary Hypertension, no technology: in fact Pulmonary Hypertension wasn't even heard of. It is only a recently identified illness and work is still in progress to find more effective treatments and a cure. Fortunately for me, the drug Flolan had been developed and it helped stabilise me until I could receive yet another feat of modern medicine and science, my transplant. 

I think we are blessed to live in these times and I couldn't help but feel, yet again, as we continued to walk around the grounds, how lucky I have been. A truly modern day woman, in my own quirky way, and not through fashion, not through lifestyle, but with what I always carry within me. 

As I looked up to the sky and saw the red glow of the sun shining out through those dark storm clouds I thanked my donor and their family once again that I am able to enjoy these precious moments in life. Somehow it seems an aptly timed moment after such a perfect afternoon.

Home Again, Home Again!

Getting back to hospital on Sunday evening didn't feel so bad. I was still in the same room, I hadn't been sure whether I would be or not, so it all felt very normal and secure and I knew what was what. I had a gruelling few days ahead that if I'm really honest I wasn't looking forward to.

Monday started quite easily and I was shown how to take my own lung function tests. When the man came to show me how to use the little hand held device, which records it for you, we recognised each other. I had met him regularly as he had done lots of my lung function tests when I was under the PH team, so it was good to have someone I know show me. Using the little device is easy, you just take a deep breath and blow into it, you have to do it 3 times and then record the best reading in the famous little blue medication book. The lung function test has to be done every day, along with taking your temperature and weighing yourself. All these things can give indicators that you may have infection or rejection and you may feel alright and not know. If you suddenly gain a few kilogrammes, then you have to phone the transplant team; if your temperature is suddenly higher, then you have to phone the transplant team; if your lung function suddenly drops more than ten per cent, then you have to phone the transplant team. They drum it in to you, you do not sit and wait to see if things improve, you phone them straight away. This will be a bit of a learning curve for me as I'm a bit of a wait and see how I'm doing person, but I know I will not have to hesitate or it could be life threatening. I guess you learn to live with this. 

Lung Function Monitor

Tuesday came and for me this felt a big day. I had been getting myself quite worked up about it since Sunday, it was time for another bronchoscopy and a biopsy of my new lungs. The biopsy would show if there was any acute rejection. Just being newly transplanted that word 'rejection' fills me with complete horror, I think it will always scare me, but I hope over time I will be able to make an easy peace with it and live with it. They explained to me that it is quite normal to find some rejection at this point and that if this happens they will treat me with intravenous steroids for a few days then all should usually be fine. This reassures me, I have every faith that the transplant team will be able sort out whatever happens to crop up, I have to have. It is all done and dusted and I'm a bit sleepy. The plan was to go back to theatre an hour later to have my Hickman Line removed, but it was postponed at the last minute until the following day and I was glad, one procedure like that is enough for one day. It was PH clinic day and I had a lovely visit from Denise and her husband, which cheered me up. Ruth's husband popped up with a card and pressie too and I was disappointed I had put her off visiting as I had expected to be back in theatre, so I missed meeting Ruth unfortunately. I can feel a trip to Norfolk coming on when I feel better! 

The Famous Transplant Bible

The results of the bronchoscopy and biopsy would be through later in the day on Wednesday, and I was told if everything was fine, I would probably be able to go home. So I both dared to hope and dared not to! 

Wednesday came and I was taken back to the operating theatre to have my Hickman Line removed. This felt very unreal, the last time I was wheeled in there, it was for my transplant, I felt unnerved and also scared as I didn't know if this was going to be painful or not. Tuesday had felt difficult as they had had to make many attempts at putting a cannula in before my biopsy, which had been painful, three different people tried several times, my veins were just saying enough is enough! Wednesday they needed blood tests, same again, several attempts. I never used to have a problem with this, but it was all getting painful and my arms and hands were black and blue, so I didn't really feel like facing much more at this point. Probably very pathetic I know compared to what others have to go through and that's what I kept telling myself. Removal of the line wasn't too bad, it just hurt when they injected the local anaesthetic, there isn't much fat for injections on your chest and neck! Then they calmly talked me through as they did each bit. It was soon over, I had to have stitches, so I've acquired yet another war wound! 

The most significant thing for me was that the removal of the Hickman Line finalised the removal of Pulmonary Hypertension. It is all gone now, there is none left and nothing of it anymore and I am more than daring to hope for the future, hoping to go for a walk, hoping to walk round the shops, hoping to feel better again. When all these chest wounds have healed I'm going to stand under a shower and sing! One of the nurses found me in tears, I just said I'd had enough. How could anyone, unless you have had to have this medication and illness, and there are only a few of us, ever begin to understand what the moment feels like when it is gone?

The nurses worked hard all day on Wednesday to make sure everything was ready for me if I was able to go home. The Transplant Doctor came to visit me around 5 o'clock with a massive, beaming smile and told me excitedly that I had no signs of rejection and therefore I would be able to go home, which was brilliant news. Unfortunately, as well, they have found a problem with one of the 'joins' they have made to my new heart and lungs and they want to keep a close check, so I will have to have another bronchoscopy in a week's time, which they would not normally do at this point. I've also got a persistent, awful cough, which could be connected, but again, in these early stages it is hard to tell. I am going to be admitted to the day ward, so they can do all the checks they need. I am not going to worry about this, they will have had to deal with this type of problem many times before I'm sure. I'm just going to get myself home, get myself fitter and build myself up more, ready for when I go back. 

So Wednesday evening and it's home again, what a lovely feeling, this time home properly ready to start a whole new journey and new life after Pulmonary Hypertension. 

Welcome home!

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