Friday, 25 October 2013

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!

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