Post transplant life

It is of course bank holiday weekend and so obviously I have too much time on my hands!
I wanted to talk about post transplant life and I guess the necessities of it.
I'm going to start by saying it is NOT easy. It's harder than I ever imagined it to be and I think than I was even prepared for. To be honest nothing, no book or leaflet could have ever prepared me for post transplant recovery and life. I've been asked if I'd like to give talks on my experience and recovery, I don't think I could, nothing I could ever say would prepare someone for the recovery I had. Having said that my recovery from the procedure was not exactly straight forward, everyone's experience is different. Alot of what the recovery depends on is physical, mental and nutritional well being at the time. Physically having muscle and energy is so important, at the time when I went into transplant I was dependent on a non-invasive ventilator, I was able to do very little exercise wise, though that didn't stop me trying to do yoga on the Wii! But my muscles generally were very deconditioned and my respiratory muscles were unable to support me and my breathing post transplant, as a result I needed an extended stay in the ICU whilst I recovered on the ventilator with a tracheostomy.
Mentally I wasn't in a good place, facing imminent death at 22 does that to you. I was getting no extra help or support mental health wise and I think I'd have benefited from that.
Nutritionally I was able to eat very little and lost exactly half my body weight in the run up to transplant, food seemed to bloat me up and made it feel impossible to breathe. I was prescribed yucky milkshake meal replacements but they made no difference, I just had no interest in food itself or even trying to maintain good nutritional status, it just didn't rank high on my list of worries. Then trying to eat a full meal when it seemed so alien to me post transplant was hard, I was supported via tube feeds and still am today.
Anyway recovery is on going and the first year out of transplant is the most difficult. I wondered if I'd ever actually get stable and well again. Now things are more controlled, we have plans in place should things go wrong anyway, that's more than we had last year. Not only that but I now have confidence in myself, I know my post transplant body very well, I'm learning all the time what's normal and what isn't. Post transplant I explained (not easy with a trachy!) that my right lung didn't feel right, it felt 'heavy' my doctors were puzzled and did a bronchoscopy to see if there was anything there. My right airway had narrowed to the size of a pin head and I needed to go to theatre eventually to have it widened. Last year when my lung collapsed, I was in clinic once a week almost 'moaning' things weren't right yet my chest xrays were unchanged. Eventually I was given a CT scan and there it was, my right lung had collapsed, I ended up with a chest drain for 6wks and eventually the lung had to be 'glued' back up. I can predict a spike in my infection levels before its even visible on blood tests. Doctors actually ask me "Rachael is your CRP up?" and I can answer before the blood results are even in and I've not yet got it wrong.
Post transplant life generally revolves around three things, treatment, support and getting out and having the confidence to live it. Treatment I've already touched on recently, my treatment and drugs are increasing all the time. Before my transplant there was nothing I could do to help myself except for what I've mentioned above but I mean drug wise. There was nothing I could take to relieve or help my symptoms apart from what I call 'the dying drugs' like oramorph and diazepam which were there to make life easier rather than treat my rare lung illness. Now post transplant there seems to be a drug for everything, I guess it shows how much time and effort has been put into post transplant medicine which is improving all the time. Pre transplant nobody understood my lungs or lung disease so there was nothing they could do about it, we had to sit back and watch it slowly take my life. Now I have an extensive drug list and it requires a very strict routine to get it all taken and done on time. But it is something I can do for myself to keep myself well, I've never had to work so hard in my life to actually stay alive but it makes me feel like I'm in control of my situation. I could sit back and say "I'm not taking that or this, I don't see the point it doesn't make me well". But I don't, I choose not to. Myself and mum work extremely hard to maintain a good regime, I may not be 100% on time with every medication and every nebuliser but I don't ever miss a drug. And the support I have from mum to unable me to do that is vital.
As is the support from my friends. Without them, well I guess life would just be boring? They're there for me and keep me going when things are tough. Some days when I really don't feel like smiling a flying visit from a friend is the pick up I need. I know my friends have their own lives and can't be here as often as they'd like but when I do see them it then makes the catch up even better! I got a visit from a close Internet friend recently, we met online some 4yrs ago and she's been a constant support to me since, right now and she's on a tour of the UK and she dropped in with her 'mom' to see me. I think my smile in this picture says it all :)
And finally the confidence to get out and live life. I have my limitations again, I'm on a stupid amount of oxygen and my breathlessness is at times worse than before my transplant. I have to plan my 'moves' carefully in my head like playing a boardgame. "Next move sofa to stairlift, rest, next move stairlift to bathroom". That really is how limited I am, I couldn't sit on the sofa and just get up and do something, say for example the doorbell rang, I'd need to swap my oxygen over to a higher % mask, take some deep breaths and then get up and pace myself to the door, I can't take more than 15 steps in one go, that I already know from advanced planning! Some days I have to dig so deep to find the trust and confidence in myself to even make my 'moves' but I find it, I have to because living in my bedroom 24hrs a day would ruin me mentally. I think that's all I have to say on post transplant life. Hope you enjoyed my rant!

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!

boing...

After a fairly productive and stable week (have a look at the LLTGL Ambassador's blog I wrote last week by clicking here, my call in my own words) last week of course I couldn't have a straight forward weekend, they just aren't my thing anymore!
On Thursday morning I was woken at 6.30am with stabbing chest pain. I sat bolt upright and tried to work out what was going on. It felt like heartburn but far worse, I quickly reached down and turned off my PEG feed and text mum to come in and help me. I didn't know where to put myself, no position was easing it, I sent mum downstairs for Gaviscon incase it was 'just' heartburn whilst I started taking painkillers, oramorph and co-codamol. I was doubled over in tears by this point and we just didn't know what to do. I was so scared it was something heart related, my grandad has recently passed away from a heart attack, he thought he was having heart burn and left it 12hrs before getting help. After half an hour things had eased a bit, Thursdays are clinic days, my hospital are cardiac experts so I decided I wanted to wait it out until clinic at 9am. I really wasn't very well and don't quite know how I made the journey but I did. As soon as we got to reception we told them I was having chest pain and I was seen by a nurse and doctor straight away. They checked my obs, my heart rate and blood pressure were raised but that's normal for me right now. I also had an ECG which thankfully looked ok. I was told I was going to be admitted though so things could be monitored, I agreed, after how I felt earlier in the morning I was almost relieved! I was sent for a chest xray then sent straight upto the ward. I got onto the bed and just slept, I was so exhausted.
On Friday I was seen on the ward round and had a chat with my consultant, he said he felt it wasn't anything cardiac related despite my blood pressure and heart rate still being abnormally high and what I had experienced was an esophageal spasm from acid reflux from my PEG feed, basically heart burn had caused my esophagus to go into spasm. It's said to be a very painful condition and can be likened to that of a heart attack. He reviewed my reflux treatment, very important as I have a hiatus hernia too and also prescribed Gaviscon for after every meal and pre and post feed. I agreed seen as my blood pressure was still very high and they had been playing around with my cardiac medications to stay and be monitored for the day and go home Saturday. And that's exactly what I did! So I'm home again and looking forward to a slightly more organised week. On the subject of being organised, we saw my GP yesterday to sort through my medication. I'm going to leave you with a pic of what I take on a 'normal' day. Enjoy!

One days worth of medications, this doesn't include my IVs of which I have 7 (!) a day, my continuous Nozinan infusion and any other painkillers or antisickness medications I may need.Breakfast!

Quick admission

The Royal Wedding bank holiday weekend, a bright, sunny and beautiful event that got everyone in a good mood, shame the same couldn't be said for my little puffers. May 29th saw me struggling to move and after snoozing on the sofa all day I had mum call the ward for advice. They didn't really have any suggestions other than go in and get checked over because the previous day I'd had clinic and my IV antibiotics had been changed. So I agreed, I was fit for nothing at home anyway. I went in that night and had the usual checks, xray and bloods and after an extra shot of steroids managed to get some sleep.
For the last couple of weeks now in clinic, it was actually spotted in A&E when I went in with my port blockage it was noticed that my heartrate and diastolic blood pressure we're raised. I had had a chat to my doctor about it in clinic and we decided to up my diltiazem (calcium channel blocker) a drug used to bring down blood pressure as I was only on a small dose. When I was admitted to the ward my heart rate was around 140bpm the typical healthy resting heart rate in a healthy adult is 60-80bpm. Now I'm not your average healthy adult but having a heart rate that high does not feel nice. And my diastolic blood pressure was also raised, all in all my heart was working hard. I saw the doctors properly on the Sunday and they were pretty concerned and eager to get on top of this and so they began to play around with my drugs. That Tuesday it was agreed that I did have some Pulmonary Hypertension (PH) now, my heart is struggling under the pressure from my lungs. My heart has done so well to get me as far as it has and come through what it has, its unsurprising it's now struggling. I've been started on a couple of drugs, Ivabradine, used to bring down heart rate and yes as you can see from the picture a small dose of Viagra also known as Sildenafil.This drug works by relaxing the arteries thus reducing the work load for the right ventricle in the heart. It's going to be a case of fine tuning drugs now but PH is manageable and their are alot of treatment options available.
Anything but ordinary!