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 still not quite adjusting to this whole chronic rejection thing as much as I would like. I think that's because I don't want to be ill again so I'm rejecting the idea of it, I know people don't want to be ill but I think mentally I'm just actively rejecting the idea that I'm this poorly again like my mind just won't accept it if that makes sense. I'm literally viewing this whole process like we've just pressed pause for a little bit in the "Well" part of my life I'm just needing a few touch ups before we can press play again. I'm really trying to be positive and hope I don't have a really long wait like last time because quite honestly I'm petrified that this could last any longer than 6 months, I don't ever want to end up at a point where I'm spending more of my life in hospital than I am out of it, that has never been a point I have ever wanted to get to and I certainly made sure I didn't get to that point the first time round. The problem is I know it's different this time round and that is always going to be a possibility for me this time.
I don't know if I ever said before but because it was both my heart and lungs that were both failing at the same time, they kind of had this nice balancing act going on which gave both me and my doctors reassurance it's what gave me the time I needed to wait for my transplant, there was always going to be warning if my organs were going to go into a downward spiral last time. That's gone this time I don't have my little safety net this time, that's scary.
I'm a little more worried at the moment because I'm a bit ill at the moment. We've been trying to get my steroid dose down for when I get my second transplant but every time we try to bring it down the inflammation in my lungs flares up again and then my breathing goes to pot and then it takes another 4 to 5 days to get it back up to where is was because we just have to up the steroids again. It's really frustrating because I'm spending a lot of my time just going from feeling ok to then feeling like crap again and having to rebuild myself up again and readjusting back on a higher dose of steroids which makes me so edgy and basically a moody cow who finds even the littlest things annoying. Then with all this steroid dose changing I've gone and got myself a lovely case of viral ulcers and oral thrush which as you can imagine is the funnest thing ever! LOL. We've managed to get a handle on the ulcers, although some are still lingering, with just Nystatin but the oral thrush has been a persistent bugger and decided to create inflammation around my vocal chords. Also once again not sure if I've mentioned it before but I have a lazy left vocal chord or vocal chord paralysis which is a result of many years of tubes being put down my throat. So currently the inflammation in my throat is making me sound like a squeaky toy. I sound funny to start with and add in this I just sound ridiculous. It's also extremely draining for me when I talk because it's requiring a lot more energy to speak with this. I literally just want to stay in bed all day at the moment and sleep till it's gone. One of my surgeons decided to describe my normal voice as fruity the other week so I'm not sure what he'd consider it now LOL!
They do say that once the inflammation around vocal chords is gone it should help with my breathing even if just a little bit which I'm looking forward to. At the moment everything is just baby steps you know? Getting changed is an achievement, having a bath is a achievement, doing a bit of sewing is something, getting out of the house for an hour or two is good. I'm trying to get all the little things sorted this week though because next week is super busy; I have Papworth, Bernice's hen do weekend and then I'm off to London with the boyfriend for a few days to do lots of exciting things and I am absolutely determined that I'm going to enjoy every second of all of it! So by next week my breathing will back at a okay bearable level and my throat will be sorted.... we hope... fingers crossed ;-)
I hope you're all having fun whatever you're doing :)
Hi guys!! So ths morning a blogger friend of mine messaged me to let me know that Cosmo have brought back their blogger awards by a new name "Cosmopolitan influencer awards" which I actually think soumds really good. I debated whether I should do this post because I was shortlisted for Best Lifestyle blog back in 2013 and 2014 and I got to attend two amazing parties which I enjoyed a lot. The thing is that was in the thick of waiting for my Heart and Double Lung transplant and I feel like I was reaching people a lot more then. I've also been debating whether I can be seen as a "influencer." I've come to the conclusion I can.
I'm not the biggest blogger out there and I don't take any of the offers that are offered to me simply because this blog is for me. This blog is me, when you read it you are reading me, I write this for me for my sanity really and it helps me more than people know. I don't write it for views however people do read it and with that I just hope that people leave with a better understanding of Organ Donation and what it can do. I hope I provide positivity but with the honesty and openness that I'm known for, I don't sugar coat things and will never do so. I hope that if I am influencng people I'm doing so in a positive way, I've recieved a lot of messages off of people over the 4 years in similar situatons to myself and even people who have no connection to Organ Donation or Pulmonary Hypertension whatsoever that suggest they take something away when they read my blog and that has always left a warm fuzzy feeling inside that I'm able to affect or help people in even the smalest way. I hope I influence anyway and if not I hope I at least show people that even in the most adverse situations, which I've been in a few, that life is never over and there's always somethng that come from any given situation
I'm having a weird day. I found out this morning that I have been back on the Transplant waiting list since last Wednesday. So as of Wednesday 7th September I am once again considered someone pre transplant which is weird in itself because I'm also considered post transplant, a very odd situation to be in.
I'm currently sporting loungey pyjamas and don't plan on getting out of them, I've been working my way through a tub of Marks and Spencers crispy chocolate biscuit things, I'm catching up on "Victoria" and "Poldark," and the only makeup on my face is on my eyebrows so I don't feel entirely non human at least and I would be able to answer the front door should somebody happen to knock.
I honestly didn't think I'd feel weird when I found out that I was back on the list, I just thought it would feel like it did before but it's different this time for some reason. Last time I remember being so excited about it all but I also remember being okay if I had to wait a while because at that time I wasn't too bad so I knew I had the time unless something seriously bad happened, but that was comforting for me knowing that I had the time to wait. I don't have that comfort this time I keep being told I just don't have the time I had last time and that's extremely scary and frightening to know that and I know towards the end of my last wait we knew I didn't have much time then but in my mind I knew I couldn't have waited as long as I did for it not to happen so I was always sure I'd get there in the end.
This time I feel like there's much more on the line and a lot more pressure for me to stay alive not just for me but I've got to keep my current donor alive if only partially, she's kept me alive for the past year and I feel like I have a duty to at least keep the part of her alive that I can and the only way I can do that is by getting new lungs and by doing that I'll be gaining the responsibility of another person, it's a lot.
I really do wish I wasn't having to do this again, I feel like it's not fair on me or my family and i know that sounds really just childish I guess, I can just imagine me as a child or teenager whinging saying how my life isn't fair and "why me? what did I do wrong?" but I'm trying not to view it that way because that gets no-one anywhere and there are people worse off than me who can't even get on the transplant list for the first time let alone a second time so those people are probably thinking I'm extremely lucky to be in the position I am in and I am very lucky that I have this opportunity. I'm just tired you know, mentally and physically, I wanted my break and I barely got one.
The good thing this time is I'm not waiting to do anything, I know how fleeting life is and I will do as much as I can while I'm waiting and I will make the very most of my good days and do everything I physically can to enjoy everything whilst I'm waiting, be that sewing something, colouring (which I'm really enjoying at the moment lol) a day out with the family, a trip with the boyfriend or simply just watching a movie on the sofa with the people I love most.
We'll get there again guys and this time I promise to try and make it stick.
I can sort of say I'm stable for the first time in about 2 months my Lung Function didn't go down! My Lung Function was 31% :-O I was extremely happy! Now I know that's only 3% higher than it was 2 weeks ago and I know that technically that doesn't suggest I'm getting better but all I've wanted for weeks now is to remain stable and now I am. I personally didn't want to stabilise at such a low level but stability is literally all I want for the moment, if I manage to get anymore improvement that will be a big bonus but I won't expect it to happen.
Clinic though went well, it was a really long day because I had a bunch of other things to do on top of my clinic appointment. I did a 6 minute walk test which I haven't done in over 18 months. I managed 137metres which is actually better than I was managing pre-transplant as I had hit 90metres then so I'm seeing that as a positive even though I do know how crap 137metres sounds. My O2 stats are actually really good and staying at 96 at the lowest it's just my heart rate that seems to get up to nearly 200bpm which doctors aren't surprised at because my body is already working overtime so when it's walking it's obviously going to be working a lot harder. Now that I seem stable and we know my oxygen levels are doing well too I can start to sort of build up my exercise again, it's never going to be amazing and I'm not going to be walking for miles of anything but I need to make sure I keep up some kind of exercise level so my muscles don't start deteriorating either.
I had to have a "discussion" with a psychiatrist which was probably as useless as I was expecting it to be. She told me my anxiety was reasonable and to come bak if I thought it was getting worse. To be honest the woman seemed far more interested in my family feud and the fact my dad has been married 3 times and has 6 kids. See so a bit pointless.
We then had the big discussion with my consultant and I feel like we got a lot done. The past sort of few weeks I haven't felt like everyone has been on the same page so that was one of my big aims for this appointment, to get everyone in the same place with regards to meds and just where my condition is the trajectory of it, when I'll be on the list all that type of stuff. So I feel like we got a lot accomplished. It's not like I haven't been getting amazing care it's just because of how fast my deterioration has been it's easy to get lost in the timeline of it so now I feel like everyone is in the same place and we all know where we are now and the plan is place and everything seems much calmer to me.
Following this we had a meeting with one of the surgeons and I've met him several times before in the past and he's still lovely. This meeting was maybe more intense than my original surgeon meeting before my last transplant because unfortunately there were a lot of questions. I was told that Papworth haven't done a heart and lung transplant at all since they did mine which is 15 months ago! So the likelihood of me getting one is just so slim so it will probably be a double lung transplant which is quite risky. It's hard for them to give you number because they've literally done two of this kind of operation but they have to try and give you numbers so they kind of just pulled 75% out of the air but they're basing the numbers of actually Double lung transplants, essentially though they did say really the risks are unquantifiable and they can't really give me a accurate number, which is fine I guess. See as positive as the whole appointment was i still worry about little things, they were telling me about all these new things they might do on me to improve blood flow in the lungs like turning my blood into a an electrolyte paste and taking some of my muscle from my rib and wrapping it around the joins and all this super cool science stuff and yet the stuff I'm worried about is having a god awful massive scar across my chest! Because they can't go in through the last scar because scar tissue and they don't like to so they'll be going in under my boobs and because of the previous transplant they will likely have to go the whole way across plus all the drain scars I'm going to have again. I'm basically going to look like Frankensteins monster. Then there was the fact that they said they were going to have to put in a line in my groin arteries well that was just the cherry on the cake for me. I know that is a common thing and I have had ALOT of procedures through my groin arteries but I don't like it at all, it might seem ridiculous but I guess I fixate on the little things rather than the bigs ones because that makes things easier for me. Also I guess with the groin artery thing I nearly bled to death through one when I was 5 years old and I'd just rather not have that potentially happen again :-/
Overall though it was a great appointment. I got all my papers signed and once they get all the measurements for my arteries I will be back on the transplant list as of the end of next week beginning of the week after which is scary and exciting I guess. Me and Mark are off to Wales though tomorrow just to sort of getaway and we were meant to be in Europe right now so at least we'll feel like we haven't completely missed out and get a nice little break in. It's not like I'm going to forget about everything that's going on but at least it'll be a different place with pretty surroundings and there will be a hot tub and it'll be quiet and just lovely. I'm very excited for it :)
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.