What a week! I'm going to start with at Tuesday May 17th, the day wasn't really significant itself, that evening I received a message off friend we'd met through our transplants some 10mths ago now. She was 22 and we were in hospital together when she got her much needed heart transplant. She sent me a message saying she wasn't well and was at clinic the following day for a biopsy. We exchanged a few messages and I was shocked she hadn't gone to clinic or even A&E if she felt as unwell as she said she did. I suggested maybe she should and she said she wouldn't know where to start and she'd be ok to wait for clinic where they knew her. And so I wished her well and that was that. The following evening I left a message asking how her biopsy had gone and was planning to pop up and see her if she was in hospital, I had a feeling she would be as she really didn't sound too good. A couple of hours later I got a message off her sister she wasn't well enough for the biopsy, was taken upto the ICU and passed away suddenly just hours later. I was shocked to the core and burst into tears. What if I was the last person she spoke to? Should I have pushed her more into getting help sooner? A million and one questions now I could ask but I know I'll not get the answers to them. For now I'm not going to say anymore on this just may she rest in peace xxx
The following day was Thursday, Thursdays are of course clinic days. Clinic was not a nice place to be in that day, my friend's death the previous day had clearly left its mark and shaken up everyone involved. Anyway this particular Thursday I was double booked, clinic and maxillofacial (dentist, I have a nasty broken tooth, my normal dentist will not come anywhere near me!) So it was just crazy. I got checked in at 9am, got my bloods done and my port needle changed, then dashed off to maxfax and saw the dentist and tried to hurry them along so we could get back to transplant clinic in time to see my consultant before lunch. Mum then had to leave me in reception, I threw my tablets down whilst she went to pharmacy and to the ward to get IV supplies. By this time it was 1.30pm and we were just leaving. We stopped off to pick up some lunch and then left for home just in time for my IVs and the district nurses turning up to change my Nozinan syringe. By the time my IVs had gone through I was shattered and it was around 4pm I had a nap and before I knew it it was 5.30pm, mum had nipped out to pick dad up from work. She leaves me for 15 minutes twice a day to fetch dad to and from work. After having such a mad clinic I realised I'd forgotten something, I hadn't had a chance to have any of my nebulisers all day. I do have a portable nebuliser but we left it in the car during clinic and I just didn't even think about it. I could feel my lungs getting tighter and tighter the space to breathe just felt smaller and smaller. I used to have wheezy type, asthmay attacks before my transplant, this didn't feel like that. It didn't feel like airway closure just restriction the only thing I could think to do was nebulise, I started setting up my neb, trying not to panic, of course nothing was to hand and I struggled to rip open the nebulisers. By this time I was gasping, I'm still learning and getting to know my post transplant lungs and just didn't know what to do. Thankfully the nebuliser kicked in with a good affect within a few minutes I felt almost back to normal but whatever it was it was a very nasty episode and left me in tears and exhausted. I just went and flopped on my bed. Just... No words.
Next day (Friday) I had an appointment at the hospice for some reflexology, finally a treat and a chance to relax after the previous day I'd had it was just what I needed. I hadn't relaxed that much since well before my transplant, it was just amazing. Afterwards we decided to go out for lunch, I wasn't feeling 100% though, I was getting random shivers. By the time lunch came I just couldn't eat it I was forcing it down myself. I couldn't think straight, I had goosebumps from the shivers I was getting and just felt outside myself. We asked for a 'doggy bag' and paid the bill and left. When we got home mum phoned the transplant unit for advice, the doctors advised we went to A&E but did mention my consultant was on call in the morning and I could 'drop in' for the ward round if I wanted to see him. I hate going to A&E, transplant is such a specialised field, my case is already complicated as it is, I'd freak most A&E doctors out with my medication list alone. So I decided to have some oramorph and just sleep on it. I felt better after my nap and decided to wait to see my consultant in the morning. We arrived on the ward for 9am and had a chat with my consultant, he decided I needed extra antibiotics, my heartrate was high, my blood pressure was high, I was shivery and my lungs were crackling I just generally wasn't well. So I was shown to the 4 bedded bay and that's where I've spent the past week.
Generally its been a bit of a crappy week. I been through every possible emotion following my friend's death and its been hard to focus on just getting well but a reassuring chat with the lovely Holly has put my mind a rest and I know now I did my best and I couldn't have changed what happened. Health wise I'm going to be here sometime whilst the team figure out exactly whats going on and this blood pressure and heart rate trouble which seems pretty persistent and annoying now. They are as usual pulling out all the stops to get things sorted and I have to say I couldn't feel more safe. They are experts and don't miss a trick. For now I think I'll leave it there!
Sending some smiles!
4 weeks ago