Clinics, Bronchoscopies, Biopsies and All!

An early start, then the heavens opened!

It's just been the first full week of January and all the festivities are all over and behind us once more. This week is a bit of a wake up call after all the enjoyment of the last few weeks, where I've put aside all those niggling health worries and had no hospital visits to think about. Suddenly my next clinic visit was imminent, together with a stay in hospital for yet another bronchoscopie - I think this will be my eighth or ninth, I'm losing count now - and a lung biopsy to check if there are any signs of rejection in my new organs.

Suddenly as we get nearer to clinic day it all starts to feel very frightening and overwhelming. I think the fear is heightened as it's been Christmas time and we have had such a lovely time and been busy doing special things and seeing family and friends and I've managed to put aside a lot of my worries about my transplant.  It's not that I'm pessimistic or anything, I try hard to be optimistic, but I'm also down to earth and practical and like to be mentally prepared for any eventuality. The morning is dark and the weather reflects my despondent mood, blowing a gale and absolute torrential rain - roads are covered in flood water as we navigate along them. 

As clinic day drew nearer, I had started to get lots of pain underneath my lower ribs, which seemed to shoot upwards at times and downwards at others. It felt like my drain wounds underneath my chest were sore again, but not quite the same. I kept thinking is it my new lungs or is it underneath them? The pain got worse the day before clinic and I felt relieved I would be having a thorough check, but scared to death about what the pain might be. 

I've been walking over a mile during the Xmas period!

Rejection is a very frightening word in my world of transplant. I have to measure my weight, my lung function and my temperature every day to check for any changes, as this can be a sign of rejection - all seemed fine though on that front and I have to trust what I have been told. It is instilled in you to watch out for any signs of things being or feeling different in case of rejection, so it can be caught early and treated and slowed down or stopped. How on earth do you know what it feels like though or if you feel anything at all when it starts happening? 

You can't help wondering and worrying at every small ache and pain sometimes; you want to phone the Transplant Nurse and check, but if you do, you feel you would be phoning up every day with something or even three or four times on some days! So you have to strike a balance, but bottom line is: if you are really worried, you phone! Knowing I was going to clinic the following day and actually had a biopsy and bronchoscopy planned too, I decided to wait rather than phone up. If I hadn't had clinic and tests planned, I definitely would have been phoning up, as the pains were getting worse. 

So why are we transplantees so scared about rejection and our aches and pains? Well obviously rejection of a main organ can be fatal and in my own case I've got three organs that may reject to fret about.  There are a few types of rejection: acute, chronic and antibody mediated rejection. 

Knebworth recreation ground where you will often find me practising my walking!

Acute rejection is when the body starts to reject the new organs very quickly - it is very common in the first year of transplant and there is always an ongoing risk - but picked up early it can be treated. It is therefore imperative that you watch out for the signs and it is treated soon enough. The trouble is in those first few months of recovery, you experience all sorts of ongoing aches and pains due to the whole process of the operation and healing, let alone the fact that you have transplanted organs inside you that are settling in. These aches and pains seem to change by the day and you end up not knowing what is normal or not normal. How would you know? 

Chronic rejection happens over a period of several months to many years. As lungs are very delicate organs, this can start as early as six months after the operation. In lungs it is called 'obliterative bronchiolitus' and is where the lungs get blocked by scar tissue and then do not function as well and then the lungs begin to deteriorate over time. Infection is linked to this one: recurrent infection can cause permanent damage to transplanted lungs, that is why it is so important to try and avoid infections. It can make the difference of a long prognosis after transplant or a short prognosis. So if I am a little paronoid about infection and my new lungs, it's purely because I want to live for a very, very long time to come! 

There is also antibody mediated rejection, where your body produces antibodies to your transplanted organs. Antibodies are proteins made by your body to fight infection and foreign substances. That is why we transplantees are heavily immune suppressed, if this type of rejection occurs then there is a process called 'Immunoadsorption' where anitibodies are removed from the blood that may help.

So on Tuesday, after a bad night's sleep, off we went to clinic and in contrast to all the festive fun, I'd come back to earth with a big bump and still felt worried about the pains I was having; worried whether they would find some rejection; worried about infection; worried once again about the couple of problems I have in my trachea with the scarring and healing, which they were going to check on again and if they might say I need surgery. Basically I wanted to go into denial that I'd ever had a transplant and just stay in my Christmas cocoon and not have to go to hospital to be prodded and poked ever again! But reality has to be, I just don't want reminding of it sometimes! 

Once I got to clinic, all felt a lot better. I think on the way there it felt a bit like that first day back at work after Christmas, when you have to get back to real life, but multiply that by about a thousand to be nearer the mark, because of the unusual situation we are in and the anxiety of what may be found once there. Back in clinic, you are amongst a whole roomful of other families, who are also in this same bizarre situation and then it all becomes normal again. There are others, who have dressings on their necks, scars peeping from the top of their chests, plasters on their arms, canulas popping out from their sleeves and I'm back in the place where everyone totally understands. There are familiar and friendly faces amongst both the patients and staff and a feeling of calm, routine and order, we are back in what I call my parrallel world and it suddenly feels as though I'm back on safe ground and back in familiar territory again.

The clinic is a long, tiring morning with blood tests, x rays, ecg, lung function tests, a chat with the nurse, a chat with the consultant about the test results. The tests looked good so far, no nasty shadows showing on the x rays. The awful pain turns out to be good news - it is the nerves that have been damaged during the surgery growing back and working again - I am so relieved I can't believe it. I'm told it will all settle down in time  - thank goodness! 

Next up it's canula time, my least favourite bit, always a struggle, but this time it only takes three attempts and two nice bruises! Then it's up to Baron ward and I find out I'm sharing a room with my lovely friend Bernice! She has hatched a little plan with the nurses! We get a chance to catch up before bronchoscopie and biopsy time. It is so good to see her.

Bronchoscopies are becoming a normal procedure for me, but I still feel a bit nervous about them. It's the same welcoming team and Dr Parmar, my consultant is going to undertake it. We chat about Christmas and he stands with his hands behind his back while he chats. I know what's coming - he's hiding that awful stuff behind his back that he squirts down your throat and then it makes it numb! Next I'm waking up and it's all done with. The results are good, the areas of my windpipe that they were checking are looking better than before and looking like they are healing well. They still want to keep a close eye on things, so they will do another check in a few weeks time.

Later the following day I get the good news that there is no rejection and the better news still that they are going to start reducing my medication. The best part of the reduction in medication is that it is all the inconvenient stuff that impacts on your quality of life that is going. The Amphotericin that is taken by nebuliser three times a day, which can tie your day up and the water tablet, Furesomide, which is just a big inconvenience every single day and has been for years. Hooray to the end of that! My steroid, Predisolone was also reduced. 

I was discharged one very happy patient after all that worrying and with a new and uplifted feeling that a new chapter starts in my life tommorrow with the reduction in my medication - nebuliser and water tablet free at last! It is sun shining as we drive home, opposite to when we drove there, the weather reflecting once again my mood, this time I'm elated and happy! Thursday and I'm up to my old tricks again - I just cannot stop smiling and pinching myself and know just how lucky I am, yet again. I think of my donor and their family and what they have made possible for me!

Medication Time!

Another week has passed and this week I've tried really hard to start getting out and about a bit more and back in the real world and land of the living. We have just done it in small steps around what I feel able to cope with, as some days are better than others still and there is a lot of medication to work around, but there are always some good parts of the day and I want to make the most of these good bits as much as I can.

So after a few days resting and catching up, following last week's couple of days in hospital, I have managed to make some short trips out to get on with the Christmas shopping and visit a few cafes along the way for a cuppa or two. We went to Prezzos for dinner one night and watched the Christmas lights being switched on in Welwyn Garden City, which are looking very pretty and festive. 

On Friday we needed to go back to Papworth for some more drugs, as I have got another extra week off hospital before I go back in for a couple of days, but I didn't quite have enough medication at home to keep me going for an extra week. As this was a fleeting visit and turned out to be a gorgeous day, I decided to be a bit more ambitious and we visited Wimpole Hall, a National Trust place nearby, which we know well. 

We went for lunch there and I tried to have a walk for a while, but had to give in partly because I was flagging after the early start and had already walked around a bit at the hospital and partly because it was cold and a bit windy and my new lungs really didn't like the cold air that was hitting them and it made me breathess. Luckily we had the trusty wheelchair and Rob pushed me round the gardens. They still looked pretty, although it is the end of November nearly. We took the cameras as I wanted to capture the last of the autumn before winter really sets in. I feel like I have blinked and missed most of autumn with being in hospital, so it was wonderful to just be out in the lovely sunshine, fresh air, watch the birds and see there were still lots of trees still in their golden splendour. 

I also wanted to check out if I could still use my camera with my newly acquired shaky hands from using the Prograf drug. I was really pleased as I was able to manage it and it felt great to be out and about taking photographs again, just like old times pre transplant! Again I had to pinch myself that in such a short space of time and after so much turmoil, I'm back doing some of my favourite things already!

We finished off with a lovely afternoon tea and a visit to the gift shop to do a little more Christmas shopping. I don't think I've ever been so organised with Christmas. I think it's just me wanting to be organised just in case I land myself back in hospital, but more than ever I am just enjoying and savouring life and it just happens to be that Christmas time of year that I love. It is going to be a very special one for our family this year though, because of the wonderful changes that have happened in the last few months thanks to my wonderful donor and their family, I will never be able to thank them enough.

Back home again and it's time to check out my goody box from Papworth. So where am I at with all this new medication and its regime? Well there is a lot of it, mornings are very heavy going. 

I start at six in the morning with tablets called Itraconzole, an anti- fungal drug, which have to be downed with a glass of cola. I must say I really don't like having to have the coke at this time of day, it doesn't go very well with all the coughing that goes with my lung problems and I would much rather be having a cup of tea, but it won't last forever, this one is just for six months and I've already done two of them! Once a week there is Alendronate, a drug to protect the bones, oesteoporisis is a side effect of the anti rejection drugs, this has to be taken at least half an hour before breakfast, downed with a big glass of water, sitting upright or standing for half an hour. I do this on a Tuesday, so I don't like early Tuesday mornings, too much drinking stuff that I don't really want to have to drink, no room for a cup of tea and it's not even breakfast time yet! Thank goodness it's only once a week and the coke will be going! 

Next on, it's getting to 8 o'clock, time for the first round of nebulisers before breakfast. One is called  Amphotericin, an anti-fungal nebuliser, which has to be made up using syringes, needles, water and powder from a phial. This happens three times a day, morning, early afternoon and before bed. I haven't quite got rid of the syringes and needles yet just like my pre transplant days, but this should stop after three months post transplant if I'm lucky and I've already done two months. So not long to go and this time I only have to breath it in, not have it intravenously! All the Amphotericin needs to be stored in the fridge too, so we have had to find a spare shelf in there to accommodate it. The other nebuliser is just a salbutamol one to help with my cough and clear my chest, no mixing up and syringes, you just pop a small phial of ready made solution into the nebuluser, now that's a bit better! This one is again three times a day, but hopefully due to stop very soon.

Breakfast time and it's another nine tablets, Myfenax, an anti rejection drug, Myfenax is taken again at dinner time;  Valganiclover, an anti viral drug; Co- trimeazole, an anti biotic; Omeprazole, an anti acid; two calcichew, for osteoporosis, these are very pleasant - a bit like refresher sweets and then Furosemide and Amiloride, which are diuretics - yes diuretics, did I really believe I would get rid of the Furosemide? Three and a half years of it now and still counting... hopefully this is one that will be going! Every Monday, Wednesday and Friday another tablet is added to this concoction, Azithromycin, another anti bacterial drug. After this little lot follows Nystatin, anti fungal drops for your mouth and throat, these are quite pleasant, they taste a bit like Calpol! The Nystatin is taken every meal time and at bed time. 

Two hours after breakfast follows the next round of anti rejection drugs, Predisolone, a steroid and Prograf. Prograf has to be taken again around bedtime, twelve hours later. So once that little lot is over and breakfast is over and done with, the day is relatively free, apart from the few remaining tablets with dinner and at bed time and the nebulisers in the early afternoon and again at bedtime, so the day gets easier as it goes on. It's surprising how quickly you get used to this little lot and it is managed with the little blue book, where you record everything down. It sounds a lot and it is, but for me it is so much easier than dealing with the intravenous drugs I used to have to have and the good thing is, it will reduce over time and get easier and on top of this I should feel more recovered from the operation to cope with it all. Also I know compared to some other transplant patients, this is really  an average amount of drugs and others have to contend with much more, we are all very different in our needs and side effects of the anti rejection drugs. 

So that is week seven, another good week and more big steps and better still no hospital for well over a week yet, so I'm planning and hoping for week eight to be another good one ...

St Jude's Storm

As everyone knows at the weekend it was forecast that we had a big storm coming over much of England and Wales and Hertfordshire was predicted to be right in the very midst of it all. Rob spent a bit of time on Sunday tidying garden furniture amd making things as safe as possible. 

I have made some good progress while I've been home, but we have been having a few night time struggles. One night we were up all night because I couldn't stop coughing: the swelling in my chest where the main join is to my new heart and lungs is helping to cause this and is gradually going down, so this will get much better soon, but nevertheless it is a bit of a pain from time to time until it does. Another night I went to the loo in the night after a very deep sleep, and my new heart didn't like that one bit and decided it would tell me so, a near faint: I have to remember that when an old heart is removed and a new heart is transplanted the nerves to the heart are severed. These nerves tell the body when you are moving about and without them the body has to rely on just chemical reactions, which are much slower to kick in, therefore you need to slowly warm up before you do anything to give this process time to work. So I'm drumming into myself: warm up, warm up, warm up before you move, especially when you have been laid down for hours in a deep sleep! My mistake, but I'm still learning, sometimes the hard way! The next few nights I had trouble sleeping, because I've started getting some discomfort with my chest wounds, but again, it is something to be expected and it will pass soon, so there is much light at the end of the tunnel.

So, Sunday night I went to bed with my head full of the expected storm on top of everything else. It was a quiet but restless night again with the usual problems and when we woke yet again around 5ish the storm was raging outside. We looked outside and things looked fine though, we couldn't see any damage and the big tree that is at the front of the house was still standing thank goodness and the summerhouse roof was still on! Rob made us a hot drink and it was shortly after that, that the power in the whole village went off. We had no phone signals, land line, internet or anything to find out what was going on. We had a battery powered radio, but the most local radiofor us,  which could have given news was affected too and we couldn't find out what was happening. 

Eight o'clock nebuliser time came and went, the nebuliser only works on electric, so I coouldn't take either of them to help my breathing and one of them is an important anti fungal drug, amphotericin, helping my lungs. Rob managed to get the landline working and we needed to phone Papworth anyway with a few queries, so we explained what was happening to them. I was also supposed to be at the doctors that morning, but when Rob went down to check what was going on, they had no power or phones either and all the doctors were working from the Stevenage centre and Knebworth was left in limbo. There was little else they could have done. 

Hour by hour passed and the power showed no sign of coming back on. This made me feel really vulnerable and stressed if I'm really honest. I feel very vulnerable in my present state at the moment and to not have the full security of my own home, knowing I am missing vital drug therapy and struggling to find any information whatsoever as to what was going to happen was really beginning to upset me. We also have a month's supply of my amphotericin drug, which needs to be kept in the fridge and as hours went on, the fridge temperature was slowly creeping up, so another worry. It made me realise just how vulnerable sick and elderly people are in these types of situation. 

Luckily we have fantastic friends, who came to our rescue, they happened to be in and live in a nearby village that had power, so off we went like two evacuees to their house, so we could get warm and I could take my nebulisers. Thank you Ilaine and Richard for being there for us when I was beginning to feel really stressed and upset. While we were with Richard and Ilaine, we got word from our neighbours that the power was back on. We had lifted candles, torches and the lot out ready for later, so this news was such a relief! So after being well looked after, Ilaine had made a room all warm and cosy for us and made hot tea, we set off back home with huge relief. 

When I got back, there was a most beautiful, big bouquet of gorgeous autumn flowers at the front door, sent by all the members of Papworth PH Matters Support Group. This made me cry, it was so thoughtful and kind of everyone and had arrived at a very apt moment. Again, it is all you wonderful friends, when the going feels tough, that pull me through and keep me going and now I'm sitting here nice and relaxed again. Tomorrow will be a new day! 

On the news tonight, the storm has wreaked havoc across the country and three people have lost their lives. I reckon more lives may have been lost if were not for all the warnings we were given about what was to come and the fact that many workers and commuters heeded them, despite the inconvenience. It is better to be prepared and it not happen, than not to have warning and be caught off guard and end up in a dangerous situation. 

So all's well that ends well for us, but I'm keeping that torch close by tonight as they are still fiddling, trying to get the power back on in some of the nearby villages! Let's hope they get their power back on soon, I know how stressful it can be especially if you are vulnerable in some way.