Just popping in to update you on my transplant journey. I ended up only being on the waiting list for 12 days (so fast!) and received my transplant on November 11th. My recovery didn't go entirely smoothly and I experienced acute rejection very early on, meaning I spent four weeks in intensive care and ten weeks in hospital overall - just got home last week. My mobility has taken a massive knock after being in intensive care for so long (I've lost 2.5 stone, a lot of that being muscle) and I'm having pretty horrendous side effects from the medication still, as well as some wound problems caused by the treatment for rejection. But all these issues should be temporary (6-12 months I'm told - ugh) and the main point I'm trying to hold onto is that my new heart is functioning really well. Even my untrained eye can see the difference on scans - my new heart looks nothing like my old one.
So basically I've gone from having everything but my heart working to having nothing but my heart working! This means I feel absolutely rotten at the moment but should mean that it will all be worth it EVENTUALLY. I really underestimated how tough the transplant process would be and I'm not sure when I'll feel able to return to work but just going to take each month as it comes and focus on regaining my strength. I'm hoping I've had my share of bumps in the road and that recovery will be a slow and steady upwards trajectory from now on...touch wood!
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laura_dropstitch
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Hi I was just thinking about you and wondering if you were home when I seen your post. I am so glad your recovery is going well now and I know exactly what you mean about the meds at some points I felt worse than pre transplant!! but as they were reduced the days got so much better and then eventually the steroids went as well, along with the moustache 😅😅 I was worried about catching covid but somehow I managed to and to be honest I have had worse colds which was such a relief. I had imagined because of my imune system or lack of it!, I would be hospitalised but thankfully it was just a week stuck in the house. I hope you continue to get stronger every day, Keep us posted take care char xx
So glad you are on the path to recovery Laura. What a journey but well done for always fighting. Your blog and updates inspired me when I was recovering from open heart surgery a few years ago. Your honesty & positivity is really inspiring. Really hope you continue to recover and remember to take it one day at a time ❤
I thought I had not seen you post in a while but the reasons for taking a break from the forum are multi-faceted.
I can imagine how you feel as when I had my amputation in 2019 I had developed a massive infection (they said I was hours away from sepsis). During those initial 5 weeks I shed 15kg (33lb) excluding the leg. As you say it is mainly muscle. When I first entered a non-critical care hospital the consultant was worried I looked so thin. Anyway with physio and better food I gained 10kg in the next 8 weeks.
All I can advise is get as much physio as a available and unless there are other issues get plenty of lean protein andoafs of veggies/salads/fruit. To many fats and carbs just up your body fat percentage.
Omg Laura I haven't been on here for a long time and shocked to hear you have been through a transplant... It definitely sounds like a long journey back... But great they got you in so quickly and that you are now in recovery phase. 🥰Sorry that the CRTD Device didn't hold everything for you.... Altho it did give you that help for a while.
I am wishing you a great recovery... You are such a strong and amazing inspiration
Big hugs and do let us know how things are progressing. Lots of love Karen xxx
Hi Laura_dropstitch, that's a fantastic post, and fantastic news 😀😀. Never seen you post before and have never met you, but I'm really happy for you ❤❤
That's brilliant to read, hopefully you are over the worst now.My twin brother had a VAD fitted at The Freeman in Newcastle and he was on the waiting list for a transplant, I saw how ill he was so I can appreciate what you've been through.
Unfortunately his angel wings arrived before a new heart.
Best wishes for a brilliant recovery and return to a normal life.
Hi Laura- sorry I haven’t kept in touch with you for a while. You were helpful in answering my questions a while back. Wow now you have been through a massive and amazing journey of a new heart. You are so brave and inspiring. I am still waiting to see if I will also follow the same journey as you or stay on meds. What a difficult time you have had. But wow you are here. How amazing. Please look after yourself. Your family must finally feel so lucky to have you back too. 💕 take one day at a time. Keep us all informed on how you are getting on. Andrea xx
Laura ,one step at a time darling ,, its marvellous to think you've been given a second chance of life 😀, grab it with both hands ,im sure your do well ,onwards and upwards listen to your body and just relax and all will be well ,thankyou for sharing with us all your journey Laura my lovely xx 😀 Jan
That's great news and hope everything goes well. A friend of our family had a heart transplant and it served him well. There is a mention that I may need one but that may be a long way off. But you can always read my bio on hear, Regarding my congenital heart disease. Glad you are doing well our friend when he was well, after his heart transplant done people's gardens. Keep strong.
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