3.10.2012

Transplant part 2

Progress continued to be slow. The journey was such an immense and monumental one it just doesn't feel like there are words to do it justice. Every day seemed to last an eternity and no two hours were the same. I couldn't wait for the hours when mum could visit but was so frustrated by the fact that the ventilator still prevented me from speaking, I was exhausted much of the time and felt quite low because I wasn't seeing any improvement. I was so petrified that my breathing wasn't feeling any easier and couldnt communicate this properly because I couldn't speak. Everyone reassured me but it was so tough, breathing exhausted me and I felt like such a failure.
Despite not feeling much improvement in my breathing or energy levels, I was slowly improving, losing some of my drains and my neckline. Unfortunately this meant that iv access was still needed and my veins were awful by now. We spent nearly an hour trying to get an arterial line in but to no avail and for one of the first times I was incredibly freaked out, I knew it would need to be done again the next day and I was terrifed. The next day I woke up and instantly knew something was wrong. I wanted my mum so badly but every time I asked if she could come the nurse said it wasn't visiting hours. I didn't feel well and was really worried about why I felt so bad and the fact that I needed this new art line. I was beside myself and can honestly say that was probably one of the worst times, I wanted my mum more than anything and the more I was told no, the more panicky I got. I was shaking so badly my teeth were rattling and i couldn't even mouth words. I wrote some garbled messages and sent my mum some texts but they made no sense. I was so so frightened. Little did I know my C02 had risen again and after another "zoning out" like last time I woke up freezing cold, soaking wet from where I'd been sweating and feeling awful. Mum was finally allowed in and I've never been so pleased to see her, I had no idea what had happened to me and was very tearful. I wrote down "have I had a stroke?" it sounds silly but I just thought something awful must have happened to me, I was as cold as ice, white as a sheet and so exhausted, shaky and terrified, I wouldn't let go of mum's hand. It took a long time but later when I had calmed down and felt a bit stronger, I sat in the chair and the nurse managed to wash my hair for me. For anyone who doesn't know me, my hair is down to my waist so quite a palaver to wash! Somehow we managed it in a sharps bin with a cup, difficult but it did the job and felt amazing after so long. The doctor agreed that my arterial groin line could stay in for a while longer so at least I didn't have to worry about that for a while.

After an eventful day the next couple of days were quieter. They continued to wean down my support, changing my type of ventilator and making me take more of the work of breathing. I found it so exhausting, I can remember counting down the minutes till I could stop and just despairing that I would never feel the easiness of breathing that everyone had promised.
I must give credit to the fabulous and amazing nursing staff, they were so supportive, kind, caring and just kept me going. I lost count of the times I wrote down how worried I was or how I felt like a failure and they always reassured me that although I couldn't see it yet things were going well. On day 14 I managed 1 1/2 hours on the vent and mum writes "You said for the first time you had taken deep breaths". It was still unbelievably hard but I could see tiny glimpses of hope.
Day 16 I didn't feel great again and needed another blood transfusion. I'd like to say a huge thank you to all the people who are blood donors, my donor saved my life but so did those people who donated their blood. It really is a selfless and amazing thing to do, I needed several transfusions during my time in hospital. It was also a landmark day in that I was able to try a speaking valve on my trackie meaning that I could talk for the first time since transplant. Of course what happens when you're able to talk and ring your family to demonstrate said speaking valve? No one is home! I ended up phoning 3 different people and getting voicemails each time. When I came home I heard the message I'd left for my dad, my voice was so weak and squeaky. It was a real effort for me to talk and I could only manage it for an hour or so but it was progress. I spent most of my time apologising for not progressing fast enough, I was so worried everyone would think I wasn't trying hard enough with my second chance.

The next day I was brighter again and was set to try a new ventilator that was the next stage in weaning down support. Amazingly I found this the most comfortable of them all despite it being the least supportive and managed to breathe on it for several hours. Everyone was really suprised, and once again I had baffled them all!

Sadly the next day brought some heart breaking news, my dear friend Rachy who had been such a support and inspiration to me during my wait for transplant, had passed away. Rachy had recieved her life changing call but sadly due to complications had been severely ill for months and lost her fight. It was gutting for me, because she was the bravest and kindest person I have ever known. She had some unbelievably terrible times but never seemed to feel cheated for what life had dealt her and always considered herself lucky to have been given a second chance. She will always be a constant reminder to me that life is short and how to go through it with grace, bravery and compassion. I miss her so much.

I knew Rach would want me to keep fighting but it was a bitter blow to have lost such a good friend. I wanted to cry but I couldn't. My canula's failed again and the doctor spent ages trying to get another one anywhere he could, they tried my hands, arms and feet but to no avail. In the end my feet were actually weeping due to excess fluid seeping out of all the canula holes. My last canula had tissued while I had IV fluid going through and so nearly a litre of fluid had gone into my arm, causing it to swell up to 3 times its normal size. It was so uncomftable and itchy and had swollen so badly that I have loads of stretch marks. Despite these hard times there were also some positives, I was able to start trying mouthfuls of food although I had no appetite and doctors were pleased with my progress. There was even talk of me being able to move to the transplant ward when a bed became free which was a huge milestone on the way to recovery. The doctor told me I was the "wellest" patient on ICU, to which I replied "I can't remember the last time i was the wellest person anywhere!".
Of course me being me it couldn't be as straight forward as that. The next day, mum was called in early as my heart rate had suddenly jumped to over 200 beats per minute for no apparent reason. The doctors crowded in and after several attempts to bring it down it wouldn't budge. They ended up giving me a shot of an IV drug which made my heart rate drop from 200 to 30 in about 10 seconds. It was the most horrible feeling as though someone was tightening my chest and I was having a heart attack. They tried this 3 times but everytime my heart rate soared back to 200 again. In the end I was put on a drip infusion of the drug for 24 hours which brought it back down to an acceptable 103. While this is apparently a common occurence after transplant it felt like a step backwards once again.

However my disappointment was short lived. The next day I had one of favourite nurses who decided it was about time I went outside after 23 days of being stuck in my room. It really was amazing the effort the staff went to to get me out for half an hour. I needed a high tech wheelchair, a trolley with all my machinery, a technician in case anything went wrong, my nurse and a doctor as I still had my trackie in. I managed to walk around my room for the first time before I got into the chair, even though my legs somewhat resembled Bambi's! Although I was a little scared of going outside it was just what I needed. With plenty of blankets and the wintery sun beaming down on me, breathing clean fresh air was bliss. Mum had brought me a hot cup of tea and I sipped it in the sunshine as we walked around the grounds, laughing and just enjoying some time out. When we went back to my room I managed some lunch for the first time and then we packed up all my stuff, we were finally moving to the transplant ward! Again it was a bit of a scary prospect but I felt ready for it. In ICU I had nurses with me 24/7 but the new ward would offer more independance. By now I was also managing some time each day on just oxygen which was still tiring but definite progress.


Unfortunately canula access was still a big issue, yet another venflon had stopped working and with no where else to site one it was decided I needed my neckline back in. This was my absolute worst nightmare as the neck line was my biggest fear. I thought I would be put out to have it in but as they had no canula in they couldn't sedate me. Mum came into theatre with me (she actually quite liked wearing the scrubs and was convinced she could carry out a procedure now she had the right outfit) and I somehow (I don't know how I did it) I laid still while the doctor made several attempts at getting a new line in my neck. Even as I lay there I couldn't believe I was somehow getting through it, I was conquering my worst and deepest fears. Eventually it was done and I was so relieved if very shaky. The neckline remained in until a couple of days before I went home which saved me lots of pulling about but I wouldn't be queing up to do it again.



I had another episode the next night (you see why I felt I wasn't progressing?!) my SAT's plummeted and I needed an emergency xray and possible bronch. Thankfully things stabilised a bit and they felt the bronch could wait until morning. They did it the next day and nothing major showed up thank goodness. Mum was really suprised by how awake and with it I was.

During the whole time I was in hospital I had a bad stomach and had been suffering with diarrhea and sickness but suddenly once I was on the transplant ward this seemed to get much worse. It was one of the most draining, embarrassing and depressing parts of the whole journey because it just felt like it would never stop. No one quite knew why it was happening and several times I nearly had to go to another hospital to have things investigated. At the height of it I was using the commode more than 30 times a day. I was in such a weakened state there were times when I'd cry because I just couldn't face getting up to use the loo again. I wasn't sleeping properly because of it and generally it was a pretty shit time (pardon the pun). After virtually 5 weeks of diarrhea I was at the end of my tether, because we weren't entirely sure what was causing the problem it was difficult to treat. Finally I was allowed to take something to stop it and it was a real turning point for me to start gaining strength. I had been able to do some exercise but then had been so ill with my tummy that I hadn't been able to do much.
One day my physio came in and I was having a down day, she asked what I wanted to be able to do, I replied "Walk around and not be out of breath". She said "Ok we'll go for a walk then" and we did. I walked with a zimmerframe and oxygen down the ward corridor occassionally stopping for rests then came back in the wheelchair. I was so chuffed and it really was the boost I needed. After that I tried to walk everyday and although it was hard I was getting further without so many stops. The only thing hindering me was the fluid retention in my legs. I had gained a massive 10kg of fluid and my legs were so heavy to move as well as being extremely out of condition. But I finally felt I was getting somewhere.




That said my appetite was really poor and the battle to eat was raging. I felt sick and wasn't in the slightest bit hungry but everyone was on at me to eat. I got really angry some days because I was trying so hard but still not eating enough. I was still doing overnight feeds but was struggling to find one that didnt make me sick.

I was still finding breathing difficult but was on much less support. It had taken a long time to build up my time off the vent and I still found it very tiring. I was now using o2 during the day and the vent overnight. One day the nurse told me I needed to start weaning off the oxygen too. It was a huge step and I was very nervous. I was convinced my oxygen levels were going low and repaeatedly asked for them to be checked. In the end my nurse said to me "Look they are almost 100%, I'm not doing them anymore! You need to trust these new lungs" it seemed harsh at the time but was just what I needed. I started to have a little more faith and gradually things got better. Losing the vent overnight was the hardest thing as I still got tired without it but I had to just bite the bullet and keep pushing through the hard bits. I also started to take over my own drug regieme and the nurses taught me all my new meds and their doses so I could be in charge of them myself. I think that was the first time I realised going home was just in sight.

On day 50 I went for a routine bronch, because of all the diarrhea and the toll it took on my body the doctors had decided to leave the trackie in "just in case". When I came back from my bronch my neckline had been removed and so had my NG tube so for the first time I was tube free! I was also moving to a side room nearer the doors so mum was busy moving all my stuff. She literally left the room for 5 minutes and my consultant came in, he said "oh your trackies still in, lets take that out. Give me a big cough" I did and a second later it was out!! Mum was shocked when she came back. So there I was completely free from all my equipment. Then the really great news came, my doctor said if I could do the stairs I could go home! It seemed unreal.

While the trackie had been in I hadn't been able to shower. I can honestly say that during the really really hard days when I couldn't imagine things ever getting any better, it was the little things I missed more than I could say. You don't appreciate the things you do everyday without thinking until you don't have them anymore. For me it was baths that I missed most. Having to be washed by nurses wasn't the best and for weeks I literally used to sit and dream about the amazing bath I would have when I got home. I used to dream of my own bed too, and when I had the trackie in I would have given anything to have a sip of ice cold water. It really is these unassuming little things that make the most difference in life, believe me. Once my trackie was out I couldn't wait to get in the shower, you cannot imagine how good it felt to have the lovely hot water running over me, being able to use my own shower gel and have a good wash, to feel clean and fresh for the first time in weeks. My mum thought she'd never get me out of there!

Home was in sight now and as much as I desperately wanted to get home, I was nervous about leaving the safety of the hospital. I had undergone such huge changes and so many up's and downs it was slightly scary to think of being on our own without a nurse just a buzz away. However once I'd been told that the stairs were all that was holding me back I was determined to conquer them!




I went up a flight of stairs the same day and then again the next day. On the Friday they said I could go home, we had reached the end of part of my journey and it was time to move on. The nurses all gave us hugs and various people called in to see us. We packed up our mountain of stuff accumulated during the stay and feeling completely surreal we made our way home. When we got there I felt overwealmed. I was still very weak and even the step to get in my front door was hard work for me but I had made it. After 7 long weeks I had finally reached normality again, it would take a long time and I'm not sure the journey will ever end completely but this was a huge milestone. All thanks to my incredible donor, and their family. God bless them all.

6 comments:

  1. So wonderful to see that last picture and know the story behind the smile! You're an inspiration!x

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  2. Have worked as a transplant driver ( moving the organs) for many years and your story makes it all worthwhile. Brought a tear to my eye, your smile is such a beautiful advert for donation. Thank you.

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  3. You're one of the most amazing people I know, Pickle, totally inspirational. You look fantastic now, btw, gorgeous! xxx

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  4. Great to hear from you again Tor - hope everything's continuing to go well for you. xx

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  5. You had such a hard time of things, and you have done so well.
    I am glad to see this blog as it is another piece of the story completed for you.
    It can be so hard to look back, I found myself reliving my experiences with you.
    Love the picture of you at the top of the stairs,you have truly moved up to another level in your life now, and hope you can now continue up and up:)

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  6. Thank you so much for this update. You are an utter inspiration.

    J x

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