A New Life - My Transplant Journey - Part Two

I had just undergone one of the biggest operations anyone could have, I knew the recovery process would be long & hard and I was prepared for it, after all it was my decision to be listed and hopefully get this second chance. However, no one could ever have prepared me for how difficult some days would be, or tell me the reasons why I would find them so hard.

Agonising pain from my wound & chest drains, making countless holes in me for daily attempts at bloods and blood gasses, being sent down for bronch after bronch, sent to sleep and feeling sick as hell when I finally wake up and out for the count the rest of the day, throwing up constantly and not keeping anything down, not sleeping a wink in almost a month and having the worst hallucinations I ever could imagine - I can handle that… I was born with CF and anything that you have to go through is pretty much standard, you just get on with it, I’ve had it for 29 years and know no different…. But to be over 180 miles away from my husband, and not be able to see him or hold his hand for 5-6 days absolutely killed me, I was barriered in my room for the first fortnight as I had a bug that I caught from ICU which meant I couldn’t go out of my room and nurses etc had to wear gloves and gowns when they entered. Unless my husband was there at weekends, I was completely on my own just me, and the sodding daytime TV.

The transplant team from the outset encourage you to have a family member / relative with you during your recovery 24/7. They are meant to be involved with all aspects of your care, know what medication you are taking, help you with rehabilitation, and learn the signs of rejection and infection. What they don’t tell you is that it will cost a fortune for them to be able to stay with you. Harefield is lucky enough to have Parkwood, a small building on the premises of accommodation for relatives of patients staying in the hospital. Unfortunately, unless you are on job seekers allowance it will cost you £40 a night for a single room (more for a double) this doesn’t include breakfast or anything is it just for a bed for the night. There are some B&B’s in the small village of Harefield and Uxbridge which you can book to but as they are slightly cheaper they are very busy and you must book in advance to be able to get a room. Your still looking to pay £30 a night.

Now Stefan’s work was amazingly supportive, but he only gets limited holiday time and once that was used up, an employer can only do what they can do and that’s of course offer you unpaid time off. For us this just wasn’t an option as we get no help with housing or council tax, we pay full rent and all our bills we have very little money to put back and or spend on ourselves. As the bills still needed paying whilst I was in Harefield, Stefan bless him had no choice but to carry on working, despite how desperate I wanted him to be with me. He was with me the entire time I was in ITU until I was moved to the transplant ward, and then things had to change, he would have to return to work, and then visit me during the weekend’s. He would work all day, go home and sort out the snake babies and try and get some sleep. Virtually impossible for us both when all we wanted to do was be together, I cried every time he rang me, I cant begin to tell you how much it broke my heart. After work on a Friday he would drive all the way up to London, the worst time ever knowing that’s when people are trying to get home… 3.30pm on the road and finally arriving to me at 8.15pm at night, shattered and starving. We’d have the weekend together all though he’d have to leave me around 10pm to get some sleep in Parkwood or one of the B&B’s and then Sunday lunchtime he’s be back on the road for Devon again. He was utterly drained and I knew he wasn’t looking after himself properly. Yet he made sure he was by my side when he could. Of course it wasn’t just the overnight prices, Stefan had to eat & drink, plus the fuel back and forth all the time. We spent around £700 in total during my time in Harefield (a lot less than some fellow tx’ers I have spoken to since) and it has absolutely crippled us financially.

If there is any advice I could give to someone waiting on the list for a transplant, it’s to make sure you start saving if you are in the same position like Stefan & I and to also make sure you have the support of a family member by your side. Recovering from a transplant is one of the biggest things you will ever have to go through, having as much support as possible is vital. I’ll be honest, and hold my hands up, there were times I was seriously thinking about curling up in a ball and just giving up, being alone 70% of the time was just unbearable… I can’t begin to explain to you how I felt, but hearing Stef’s voice on the phone telling me how proud he was of me and wanting to get back to my home and see my babies just spurred me on all the more and I wasn‘t going to let my depression win. The only thing I am shitting myself about now is having infection or rejection and having to stay back there as we will be in the same position all over again, and I know it will happen, it’s a given… It’s just a matter of time as to when.

Now back to my recovery, as said before for the first few weeks I was isolated in my side room because of an infection I had caught. Because of this I wasn’t able to start walking up and down the corridors with the physio or try the stairs until the antibiotics had done the trick and I was no longer infected, this took a lot longer than I hoped for so in the meantime my physio brought in an exercise bike for me to try a few times a day to help get my legs working again and increase my lung capacity. I started hoping on a few times a day for 5 - 10 minutes slowly increasing it as it became easier for me. I couldn’t believe I was on an exercise bike pedalling away, jesus christ did my calves hurt the following day, but what an achievement so soon after undergoing a huge operation!!

Kicking Ass On The Bike!

One of my chest drains managed to dislodge itself soon after I was moved to the transplant ward, leaving me only with one which was removed a week or so later. I had bronch after bronch during my stay, (where they send you to sleep and put a camera down your throat into your lungs) to remove all the gunky stuff from my lungs, give them a good wash and make sure everything was healing ok, unfortunately from where the chest drain had dislodged itself beforehand it had left lot of fluid collected in my left lung and during a bronch they put in another, my most painful yet as it was pretty much round my back so found lying down extremely difficult. It certainly was necessary though as collected a hell of a lot of fluid in the first 48 hours - they removed it after 5 days and I was finally drain free.

The Worst Chest Drain - So Painful!

After Having My Neck Line Out

Part Of My Clam Incision Scar

Another thing I found incredibly hard was eating and drinking. All the medications I was on were making me incredibly sick, hospital food is disgusting at the best of times but I couldn’t even keep down ‘normal’ food. I was on four anti sickness medications but they were doing jack shit and my weight was plummeting. Funny thing was, I had a discharge meeting from one of my nurses and a clinic appointment made for the end of the week after being told I was proberly going to be discharged the following day, I was concerned as I knew I wasn’t eating but thought maybe things would change as soon as I got home and became all excited at the prospect of being discharged…. The next morning I was seen by my consultant and was told in no circumstance was I being let home. My levels were all over the place and I’d gone from 55kg to 46kg in just 4 days…. I was devastated.
It was only Tuesday and I wasn’t seeing my husband until Friday night, that was even worse. The sickness continued for what seemed like an eternity, I’d eat a little, take my meds, and like clockwork, throw up about ten minutes later. It was a never ending circle. It was only when they started decreasing medication doses that I started to keep things down for longer, maybe go a day without throwing up at all….

Fed Up

Nights were even worse, I’d still have little panic attacks about my breathing at night, I couldn’t lie flat, yet I couldn’t get comfortable because of my scars. I’m used to lying on my sides at home, but this was impossible, I still had dressings which were being changed daily as the wounds were oozing, and still very painful. I was on sleeping medication but it just didn’t work. The pressure points in my back would hurt so much it felt like I needed a ten hour massage to get the bumps out of me. The sensation of my skin would burn like hell too, you know what you get that feeling someone is talking about you and your ear burns red hot? I had that all over my body, especially parts of my body sunk right into the mattress. I would lie there awake every hour, seeing bright firework type images all over the room. My head was a mess and I just wanted to feel normal again, I’m not religious but I prayed for it all to be over.

Wishing I Was Home

The days passed, some seemed to drag and some seemed to go quite quickly. It was a huge relief when I was finally allowed out of my room and could walk up and down the corridor for exercise, I’d try and do this as often as possible, if not purely for some ‘fresh’ air from my stale side room.
One day the sun was shining and a staff member took me outside and sat on the bench with me for twenty minutes. I’ll never forget that moment as long as I live, I was a little unsteady on my feet, but as soon as I got out into that sun, that fresh air, I breathed in. I was still on oxygen then but it didn’t matter, that fact I could breathe in deeply was just incredible. I knew there was a reason I was doing all this, and for those twenty minutes I felt amazing. I didn’t want to go back to my room but I couldn’t stay out there alone, another reason why its great to have a family member with you!!!

Five Minutes Of Sunshine

Breathing In Deeply The Amazing Fresh Air

From then on my recovery got better and better, I tackled the stairs with my physio, and would walk lots more down the corridor. I felt a lot better than before, I was eating again, not huge amounts but enough and I finally felt like I would be able to cope at home, it was Friday so I begged them to let me go…. I was told I could for weekend leave and come back on the Monday… I wasn’t impressed but it was better then nothing so rang Stef straight away to tell him the news, only for five minutes later to be plummeted into devastation again. The nurse came back in the room to tell me that the Dr didn’t realise how far away my ’home’ was and they wouldn’t allow me back as it was too much risk. Ahhhh I was sooooo angry!!!!!
So another weekend where Stef had to travel down and we had to shell out more money for him to be with me. I was getting really fed up now, even though I knew my recovery time was absolutely incredible compared to some people, but when your stuck there in that situation, so desperate to get home, being told you can then having it taken away from you again within minutes, there is no words - my head was a complete fuck up.

I was moved that day upstairs to Fir Tree, a lot quieter than downstairs and had my own ensuite which is defiantly a plus. The room and ward itself just felt nicer and I felt a lot more at ease. That happened to be my last weekend in Harefield, as I had to stay I was told I was allowed out and about and off the ward… As soon as Stefan arrived that night I made the most of it. We went down the road for a drink (I could taste it and then proceeded to spill it all over myself, what a waste of a Crabbies) and the following day he drove into Uxbridge and I ate my first meal that tasted ‘normal and amazing’ at Prezzo. It was incredibly hot that day and I am not supposed to stay out in the sun because of the medications I am on, so when I could, I would stop in the shade every now and then. I seemed to walk for hours in the shopping centre and was sooo proud of myself at what I had achieved that day. As the weekend consultants called in on me during the two days, there was promised talks of homeward bound on Monday, so I worked my ass off to prove to them that I would be able to cope and I was determined to get that discharge summary….

Eating Yummy Bruschetta At Prezzo

& It Stayed Down!!!

Rocking Stiffys Hat In My Room On FirTree Ward

My Amazing Man

Thank you for reading, part three to follow.

xxx