Surgeon Visit!

Hello again!

Monday 18th I was back at Wythenshawe transplant outpatients to meet my surgeon Mr Venkat, there are 5 transplant surgeons so it may not be him that does my actual surgery but he is one of them and he met with me to explain further about the transplant surgery.

I asked if I could record the meeting and he said that was fine, and it's a good job because he told us a lot of stuff that I can't remember already!

So, first I had my bloods done, they redo one of the blood typing ones to double check that it's right and just some normal bloods like the heart failure measure BNP.

So, Mr Venkat began by asking me about my daily life, things that I now struggle doing like making the bed, I don't go out of my house much and I get a tight chest when I'm not even exercising. Then he went through my three main tests. So, he firstly showed me my echocardiogram which shows that my atrium are huge!

The ventricles are the muscular pumping chambers of the heart at the bottom, and the majority of heart failure patients have enlarged ventricles which makes them weak and they cannot pump sufficiently. The atrium are the filling chambers of the heart, so the blood trickles into the atrium and then into the ventricles and the ventricles then fire it out to the rest of your body. (The top is a normal heart and a drawing of mine is underneath)

There is nothing wrong with my ventricles, they pump the blood fine but the atrium are reluctant to open up to let blood in which means there isn't enough to fire out to the body, this has then resulted in my atrium being humungous and why I have to take a blood thinner, because the blood is pooling I had a blood clot in my left atrium. Because the heart then isn't functioning properly, I have a lot of fluid retention around my chest and my lungs which can then cause problems for the liver and the kidneys if it's just left. This is why I get so out of breath but also why I'm always tired because there just isn't enough oxygenated blood going round my body.

So the echocardiogram just shows what my heart looks like, but then he also explained my exercise test which I did in October. I hate doing an exercise test! I did one in February 2017 and I was at about 54% of what someone my age, size and gender should be able to tolerate, so they measure the point where even if you increase the exercise amount, no more oxygen will be pumped (which is why you pass out then if you push yourself). They repeated the test in October and I was down to 43%, and studies show that once you are less than 50% exercise tolerance 80% of people die before 2 years. So basically if they don't do something there is only a 20% chance that I'll be here in 2 years time. This is a scary statistic but I think it's important for people to know, transplant isn't a treatment option to improve my symptoms, it's something that I'll need to be able to live (it took me a while to realise that, as I don't feel sick enough at all).

Then there is my right heart catheter which I had done while I was admitted and that shows that the pressure in my lungs and veins is too high, so the number should be about 15ml for my age and I'm at 54ml. Once that gets to 60ml it would be too high for me to have a transplant, so that's why the surgeon thinks that now is the time to go on the transplant list. I have to take a second furosemide (water tablet) to try and get the fluid pressure down and then if I continue to get worse I'll have to be admitted and have a furosemide IV. 

So, I will be discussed on Friday after all and they'll call me on Friday to let me know what they decide. When I was on the ward this week I didn't think I would be listed because I just don't feel like I'm sick enough to warrant a heart transplant (compared to other people on the ward), yes life is tricky but it's just normal for me! But when they tell me my stats I realise that actually my poor heart is struggling and the important thing is to get it done before the rest of my body starts suffering. 

Obviously, he gave me the statistics of 1 in 10 people don't survive a heart transplant but also explained that these people are very sick, may have had multiple surgeries etc. and the statistics of me dying if they do nothing is much higher than me dying because of a transplant (so it's a no brainer!) I see transplant surgery like a crocodile infested waters, under any normal circumstance you wouldn't ever contemplate crossing it, but if a lion was chasing you you'd probably take your chances! (I saw this picture on John Fisher's website when I first started looking into transplant and I think it's brilliant)

All being well then I will be listed just after Christmas, the radiographer that saw the lesion on my liver on the CT thinks it's nothing to worry about but it may be they just do an MRI to be sure. And then I'll just have to wait for the call! If I get worse while I'm waiting I will have to let them know and they will see me in clinic and I might end up on the urgent list which would then mean I'd have to stay in the hospital as an inpatient until my op. I'm not sure if I mentioned in a previous post but I am A positive which means that I can receive and A or O heart but if a heart comes up that's an A only my blood type could have it (or an AB person), I'm also pretty small so I don't need a big heart (you'd be waiting much longer if you were really tall). But because my heart is currently massive, I could actually have a much taller man's heart because I have the space in my chest cavity.

So fingers crossed I wouldn't be waiting too long, which is actually really scary! I talk about transplant all the time and I know all the facts and ins and outs but if I got a call in a couple of months I think I'd smack me in the face that this is actually real! But it would be nice to have it done before I get really sick, so I leave it to the universe that what will be will be :) Thank You everyone for your continued support, all the comments that I get are really sweet and it's very much appreciated x