Wednesday, 10 January 2018

A broken heart...... a long story

Don’t panic! My heart is not broken…… This is a catch up on why there has been such a long gap in between my posts. It has all been a manic and emotionally draining time hence no posts.

I last wrote about chest pains that Lucy was getting which seemed to have been attributed to the change to hormone tablets. Lucy didn't get on well with the gel so reverted back to patches but these pains didn’t go away and increased in intensity and frequency to a point where over a 3 week period she was having 5 a day. The pain affected both her arms and made her hands feel so weak she couldn’t pick anything up and she was just getting so breathless just walking short distances. Reading back what I’m writing it all seems so obvious but our GP didn’t think so!

Four trips to the GP ensued (and a game of football which she refereed) where they seemed to be baffled even though her maternal grand parents had a history of heart problems and her mum had a heart attack at 50 (Lucy is only 46) and now suffers with angina so all this was disclosed. On one visit, it was a locum who said it was unlikely to be heart related and Lucy was diagnosed with acid reflux and given the relevant prescription. At one point our usual GP did a blood test and organised a heart check up with the nurse who did height, weight, diet, exercise and took results from the blood test, good and bad cholesterol levels (which were great) etc and gave Lucy a 1.8% risk of a heart attack.

In the meantime the pains still continued and I was getting more and more worried about her as she was looking really poorly. She wouldn’t let me take her to the hospital and booked another appointment on 21st December with the GP. I know Google is dangerous for looking up symptoms and self-diagnosis however she had all the symptoms of unstable angina so she went armed with this information. The GP didn’t seem too interested in anything she took and seemed unsure what the issue was however when he took Lucy’s blood pressure she had a pain attack where her pulse and blood pressure went off the scale and he was immediately on the phone to the hospital to get Lucy into A&E. I rushed home from work and took her straight to the hospital.

She had a wait in A&E but luckily nowhere near as bad as has been recently printed in the press and blood was taken, she had a chest x-ray and an ECG both of which were ‘normal’ however the ECG only shows your heart as it is at the time of the test and unless anything has happened that permanently affects your heart, it doesn’t necessarily show if you have had a heart attack. Lucy also has an Apple watch and as she wears this loads it recorded all the times she was in pain and showed the effect on her pulse and blood pressure. This was great to be able to show the consultant this data so there was evidence of the attacks - how clever and who would have known how useful this watch would have been! 

The nurses struggled and kept misgendering her but to be honest we just wanted her checked over. The consultant was great, didn't misgender her once, and moved Lucy into a private room in A&E where he checked for asthma as well which was negative. One lot of blood tests where they were checking for infection came back clear so he came and sat with us and said he was waiting for one more set of blood results to come back. If they were negative he would let her go home but book her in to the cardiac clinic so they could do 24 hour monitoring and hopefully find out the cause of the pain.

The final blood test was for a cardiac enzyme called Troponin which indicates damage to the heart muscle. The level of Troponin indicates the level and potentially number of heart attacks and the consultant explained that based on Lucy’s level she had been having numerous heart attacks over the previous 3 weeks, more than likely each time she had experienced chest pain, and that she would have to be kept in as it was too dangerous to send her home. It was estimated that at this point she had probably had 40 attacks, morbidly amusing that she had probably had 30 at the point the GP nurse gave her the 1.8% risk score and a further 10 or so after!

It was a long wait for a bed in a ward. While we were waiting a head paramedic came into the room, introduced himself and loudly pronounced

that he had been appointed (we think he is some sort of self appointed ‘expert’) to come and speak to us and he has in his words…. dealt with many sex change people and non binary people, male to female, female to male….  And that he was “the only one that can deal with people like her”. This chap was in your face and so loud and just kept going on and on about his own ‘sex change expertise’ and that he was there to discuss the ward situation. Lucy had to put him right on his terminology and said that he obviously meant ‘transgendered’ not sex change. To be honest we were shocked at his attitude as although the nursing staff may have misgendered Lucy on and off, none of them had had any issues in discussing the situation with us so we didn’t see the need for him to be there as we would have been comfortable having the conversation with the staff we had already met. He told us that we had no choice of ward and that as Lucy was pre-op and still had ‘her bits’ that she would have to go to a male ward just like it would be if she was sent to prison she would be in a male prison. I kid you not! This was the comparison and conversation! There was no mention about her other body changes due to hormones. To be honest we were both reeling from what he had said and how he had said it (bearing in mind Lucy was also seriously unwell) and when we expressed concern about her being on a male ward (this wouldn’t have been our first choice) with a female name above her bed all he said was that we could come up with a nickname she could use instead! Well the only nickname I have for Lucy is ‘babe’ and don’t think that would look great on a male ward so we came up with something derived from our surname to be used but that is not what Lucy is known as! At no point was any other bed option or individual room discussed – we were not given any choice.

It wasn’t until much later Lucy was moved to the ward and unfortunately the same paramedic guy moved her and when they arrived  announced in a loud voice that he needed to speak to the ward sister where he loudly explained Lucy’s situation which could have been overheard by anyone. She then loudly called a meeting of all the nursing staff and again indiscreetly related Lucy’s circumstances. Luckily this ward was full of deaf old men or every word would have been heard. Poor Lucy was cringing.

She was put in a bed next to the window with the chosen nickname on the board by her bed. The nursing staff tried but they kept misgendering her (probably as she was on a male ward) and one of the old men in the bed opposite Lucy chatted with another patient about he was sure it was a woman in the bed opposite and commented on how long Lucy’s hair was. As you can imagine Lucy didn’t feel particularly comfortable and I had to bring in the handful of male-ish clothes she still has as we just didn’t want to draw any further attention to her.

They did further blood tests (having problems in getting any blood out each time) which still showed the Troponin level as very high. The cardiac consultant said that she needed an angiogram but they also were certain that she would definitely need stents which could be done at the same time however this particular hospital couldn’t do the stents so she would need to be moved to one of 2 hospitals with the speciality to do this. No point putting her through the same procedure twice when they thought they knew what needed to be done. Neither of the 2 hospitals are particularly local to us (furthest was 25 miles away however that one is in the road next to where I work). In the meantime they moved her to a proper cardiac ward….. male of course! They were waiting for a bed to become free at either of the other hospitals and they said there was one patient in more need ahead of Lucy but it should be soon. Unfortunately days came and went, I was up the hospital every day spending time with Lucy, balancing life at home, doing her washing everyday (limited ‘male’ clothing) and making sure she had everything she needed but she still wasn’t moved and Christmas Day was looming.

We asked one set of nursing staff if there was any chance Lucy could come home for a few hours on Christmas day. They didn’t think there would be too much of a problem as she was now on all sorts of medication and although still getting attacks they were less frequent and less intense. They said that they would need to speak to a cardiac consultant and let her know. Christmas Day came and Lucy had a Christmas Dinner at lunchtime before we got there. Yum!

I went to the hospital with our daughter and took some presents, Christmas hats, tinsel, games and bottle of Bucks Fizz. We had to make the best of a horrid situation. We again asked the nursing staff on duty if she could come home for a few hours and they said that they couldn’t let her go without a cardiac consultant’s agreement and that was never going to happen as none of them would be available until 27th Dec due to staff absences. Lucy was gutted as you can imagine however we had no choice and I wanted her to be safe but we did feel the previous staff should have just said no rather than raise our hopes. I couldn’t take all her presents up to her as they are all girlie however I did take up Lola the Lion which was a large cuddly stuffed toy she had been eyeing up when we had gone Christmas shopping and I had gone back and bought. Lucy loved her and she became her hospital mascot and was with her all the time.

This was a completely frustrating and draining time. The Christmas period came and went and we made the best of it under the circumstances. We were both worried….. what if there was a big attack just waiting round the corner, how bad was the damage to her heart (we wouldn’t know until she had the angiogram), the surgery carried a risk of further heart attacks and stroke…. what if she died……. The emotional impact on us both was huge and I missed her so much not being at home. In 17 years together we have not spent much time apart and if you know Lucy, she is a larger than life character so left a huge hole in our home life as well as an empty side of the bed. Despite all the misgendering one of the nurses was very friendly and had asked Lucy some questions so Lucy showed her photos of us out and about. She was very complimentary.

Eventually Lucy was moved on the evening of 27th Dec over to the hospital next to my work with a view to them operating the following day. She was blue-lighted over in an ambulance and arrived in the cardiac ward, male of course, with Lucy written on the board above her bed…… she got that changed before anyone noticed and the nickname was back. The misgendering continued but by this time we were just shrugging it off. In the morning I popped in before work to see her. She was quite distressed as they had tried 5 times to get a cannula in her arm but they had been struggling and due to the continual blood tests her arms looked like bruised pin cushions and her tummy was just as bad as they were giving her a blood thinning injection every day. She was scared about the operation, I was scared for her too but managed to hold it together until I had left her….. so many tears had been shed by us both…….

Eventually on the 6th attempt the cannula was in but she did not get taken down for surgery until late in the afternoon. When I turned up to see her she was still not back so waited so I could be there for her. About 45 minutes later she was wheeled back. It had all been done with a small amount of sedation she was able to watch it all on a screen. What was amazing was that all of this had been carried out via a 5mm cut on her right wrist where they had fed a wire (and stents) up into the arteries of the heart. Bloody amazing! She had 2 stents put in 1 artery however needs to go back in 4 weeks (25th Jan) for another stent in another artery which they did not do at the time. While I was there they came and did an echo (heart scan) which was amazing and I could see all the valves of her heart and watch her heart pumping away.

A nurse came and said that there was a possibility that she could go home later that evening once the cardiac consultant had given the okay. Well that was the news we wanted to hear and I was back at 8.30pm to bring her home.

The day after she come home we had our Christmas dinner. Not the same as having a Christmas Dinner on Christmas Day but made sure she had everything and all the trimmings. 

She is also on so much medication I have bought her a tablet box so she knows what she is taken and when. Trying to make it as easy as possible.
I would like to say she is out of pain and feeling better but at the moment she is still getting pains every day but generally only once a day and no where near as bad as before. She has a GNT spray that stops them developing into anything else but is still very breathless and not sleeping well despite taking sleeping tablets. We are looking forward to 25th January where hopefully the final stent will resolve these issues however any recovery goes back to day 1.

It is hard to tell if all this has been caused by her being on HRT, is genetic or is just one of those things. She came off the patches while she was in hospital but is back using them again now. I just want her to get back to full health.

And yes, we are going to raise the subject of how to treat a transgender patient with the hospital involved......