I am having a really rough time at the moment. I'm not afraid to admit that I'm honestly just finding everything very difficult at the moment. I'm feeling quite bad, like really quite ill at the moment. The past week I guess I just haven't been myself at all, I don't feel right. It's mainly down to all the side affects I'm getting from my drugs I think if I didn't have these ulcers and my throat was better I'd maybe feel a bit better, but I seem to have also gained a bit of a infection over the past few days as well which is obviously adding to my feeling of general crappiness. I've at least managed to get rid of my oral thrush, which is great but with that meant I was taking a drug that was adding to my anxiety so I've started having panic attacks.
Panic attacks are not something I'm massively used to. I'm a anxious person, yes, but I've only ever had a few panic attacks before because I usually have a good handle on my anxiety generally but over the past week I think the meds plus the fact that my throat feels like it's not getting any air down it I just feel like I'm about to die all the time. So anxiety kicks in and then panic attacks have then been happening when I've been getting just a little bit out of breathe. It's quite frustrating and is very debilitating and is restricting me massively because I just don't want to move for fear of getting out of breathe and getting that feeling that I can't breathe and it turning into a panic attack.
I wouldn't say I'm down though mentally, like I would say I'm still pretty upbeat I'm just very mentally tired at the moment and like I miss being able to walk again. It probably seems silly but I had a picture come up on my time hop the other day and it was of this walk I did last year where there was about a billion stairs that I walked up and I remember at the time I did nothing but complain the entire way up these stairs because it was so hard and my legs were just dying the whole way up, I was out of breathe but in a good way, I was sweating and it was just hard work, but I remember being really happy that I had managed it and I just so wish I could do that again.
I'm back at a point where I'm relying on people again and I know the people in my life would have it no other way but I felt like I had reached some kind of independence after my transplant, like if I couldn't get a lift somewhere it didn't matter because I could just walk there and now I can't really go anywhere without somebody being with me because I need a wheelchair now and to be honest I don't think I can personally go anywhere without someone now because I would be too afraid of something happening by myself. I feel like that's been taken away from me again. It really doesn't matter in the grand scheme of things because ultimately my health is what is the most important thing and if for now I have to be with someone whenever I'm out and about then that's the way it has to be and I'm okay with that. I just feel a bit bad for everyone else because I never want them to feel like they have to be doing these things. I'm kind of back to that "I don't want to be a burden" feeling again.
I have my Papworth clinic on Wednesday and honestly I have never been so happy to have a clinic, I feel like a month between them has been too long and I just don't think I will let it go that long again not while I'm like I am. I'm not expecting anything in regards to lung function and in fact if I hit 25% I would be surprised, I'm hoping we can address my ulcer issues and hopefully they'll be able to tell me if I have infection or something because I've been coughing up lots of lovely green phlegm, so I'm expecting to be put on IV's. Nobody wants to see the photos on my phone right now there are quite a few gross phlegm photos because I can never cough it up when they need me to so that is how I show them LOL. I know gross and you probably didn't want to know that but that's what happens :D
Hopefully after Wednesday I'll get a little plan together and we can make me feel a bit better and then hopefully that'll help the panic attack issue too :)
I'm in my 20's and after waiting 3 years,
I underwent a heart and double lung transplant because I suffered from a illness called Pulmonary Hypertension.
This blog is where I documented that journey and will continue to document all the amazing highs and the lows post-transplant. I hope to continue to raise awareness for both PH and organ donation and I would love for you to continue to share this journey with me.