Well I'm glad that day is over, hopefully never to be repeated.
I slept poorly on Monday night. I don't know why people say that knowing what's coming makes things easier. In my opinion it makes things harder, especially if your first experience was difficult. So I was a bit like a Zombie driving into London Tuesday morning, in appalling weather I might add. To be fair the traffic was light and we arrived before time and had no trouble parking. Of course as soon as I stepped through the hospital doors the sun came out, damn it.
I went up to the ward where there was a modicum of confusion because they didn't know I was coming. I showed them my letter which only seemed to create more confusion until Phil my consultant showed up and explained that I was a day patient. He looked me up and down and declared I looked 'fabulous', one of three fabulous comments I'd get before the day was out, before giving me a big hug and seating me in the day room while he went to fetch Carl.
I had a long chat with Carl who apologised profusely as the new medication was not available so I'll have to return in a couple of weeks for that. However everything else would be going ahead and first thing first my line was checked. Thankfully it is in prefect shape. There are no leaks or splits and the repair, where I spilt it about a year ago, is still holding well. The sight is clean and dry and there is no sign of infection so there was no need to interfere with it. To be fair, as I'm on the transplant list, they would do their best not to change it unless they really had too as hopefully I won't need it much longer anyway.
With no new meds and no new line I was packed off for something to eat before going on to my ECHO.
An ECHO, for those that don't know, is a bit like the ultrasound pregnant ladies have. The difficulty for ECHO's though is that, where in pregnancy they only have to see through skin and flesh, they also have to see through bone and in the case of us ladies get past two very obvious obstacles. With me there is a further problem. Due to my open heart surgery my sternum is deformed. In those days they were more concerned with fixing the fault than making you look pretty afterwards. The result of my op is that my sternum did not heal flat and is 'V' shaped with the left side slightly tilted and thicker than the right. This is the bain of my life as it is really difficult trying to get bra's to sit properly. The bone is also quite sensitive so ECHO's tend to be difficult for the operator and painful for me.
It was my misfortune on this occasion to be landed with a trainee. I was asked before they started and, although I won't let anyone in training and welding a needle anywhere near me, I was pretty OK with this. I now wish I'd said 'no'. How can I put this politely, he was the clumsiest person I've ever met.
First off he laid me down on the bench and whereas I'm usually told to lie on my side in, what I must say is normally a very comfortable position, he got me to lie at this weird angle. My lower half was on it's side as normal but he wanted my top half to lie slightly tilted towards my back so I was half on my side and half on my back. This was very uncomfortable and very difficult to maintain and I soon started shaking with the effort. I said I couldn't stay in that position so he let me had a short rest and then yanked me back into the contortion. He continually got his hand caught up in my line and pulled and yanked at it so hard I though he was going to pull the thing out. In the end I grabbed the line and held it down by my side to keep it out of his way. He sat on my line cutting off my drug supply and set the alarm off. And when he told me to hold my breath he forgot to tell me to breathe again so I would turn blue and the have to gasp for air before he remembered and said I could breath again. I was not impressed.
As if that wasn't bad enough he skimmed the wand over my ribs as though he was playing the xylophone and each bump was agony. He also didn't put enough of the gel stuff on it so occasionally he'd drag my skin. After almost one and a half hours and with an extremely sore sternum he called his mentor in and explained in a panic that 'no matter how hard I pressed I couldn't see the pulmonary.. ' The mentor asked it he could have a go but battered, bruised and with a fair number of friction burns I'd had enough. The trainee was not used to seeing anyone with a Hickman line either and talked about 'foreign bodies' etc. I left ECHO with a red raw sternum, a stiff back and a cricked neck. I will remember his face and won't be letting him near me in the future.
Back on the ward I waited for the results with a feeling of doom. I always anticipate the worst when it come to ECHOs and I wasn't expecting great things of this one due to the inexperience of the person doing it. However I was in for a pleasant surprise. The pressues in the heart have gone down a little bit so despite having felt really under the weather over the last few months my PH is actually well controlled. The problem, and the reason for the constant cough and congested feel, is water. I appear to be retaining quite a bit and there is a lot of it sloshing around in areas where it shouldn't be. So my furosomide has been increased from 40mg to 80mg a day for the next two weeks. After that I can return to 40mg and just take 80 every other day. They will review this at the next clinic.
So I was finally released and headed straight to the canteen for a cuppa before we finally headed home. Of course by then it was rush hour and it was raining again so the journey was long and tedious. I spent the evening on the settee and then had a soak in the bath before bed. Partly to try and ease my aches and pains and partly to get rid of all the residual gel that had now turned into a glue type substance and kept sticking my boobs together.
I woke up very late this morning and was greeted by the delivery of my sales stuff from Lush. Delighted I ran another bath and relaxed while I finished my book. Fortunately most of the damage to my chest was temporary and apart from a bruise over my ribs and a bit of raw skin on my sternum I've faired better than I thought. My shoulder is stiff and sore from all the line pulling but the line is fine and the entry site seems OK. Of course I've still got to go back to have the new meds but at least that is all I will have to have and hopefully there will be no hiccups.
I'm back at work tomorrow for just one day before my weekend off and then next week I'm back to normal, though hopefully with less coughing to annoy my colleagues. Unfortunately I'll have to take another day off at some point to get my new meds but that cannot be helped.
The 365 challenge is still going well, though as I'm only eight days in I should hope so. I just wish the weather would improve so I can find something a bit more riveting to take but that will come. I've included the latest pictures in this blog.
My paints have finally arrived and I'm itching to get started only what did I forget to buy? Yep paper and canvass. What a numpty! So Friday will see me hot footing it to the nearest artist suppliers to get some of both. I still can't believe I did that.
Right time for a bit of Father Brown and a nice cuppa. Next blog Friday.
I slept poorly on Monday night. I don't know why people say that knowing what's coming makes things easier. In my opinion it makes things harder, especially if your first experience was difficult. So I was a bit like a Zombie driving into London Tuesday morning, in appalling weather I might add. To be fair the traffic was light and we arrived before time and had no trouble parking. Of course as soon as I stepped through the hospital doors the sun came out, damn it.
 |
| Sign in a corridor at the Royal Brompton |
I had a long chat with Carl who apologised profusely as the new medication was not available so I'll have to return in a couple of weeks for that. However everything else would be going ahead and first thing first my line was checked. Thankfully it is in prefect shape. There are no leaks or splits and the repair, where I spilt it about a year ago, is still holding well. The sight is clean and dry and there is no sign of infection so there was no need to interfere with it. To be fair, as I'm on the transplant list, they would do their best not to change it unless they really had too as hopefully I won't need it much longer anyway.
With no new meds and no new line I was packed off for something to eat before going on to my ECHO.
 |
| My new painting set |
It was my misfortune on this occasion to be landed with a trainee. I was asked before they started and, although I won't let anyone in training and welding a needle anywhere near me, I was pretty OK with this. I now wish I'd said 'no'. How can I put this politely, he was the clumsiest person I've ever met.
First off he laid me down on the bench and whereas I'm usually told to lie on my side in, what I must say is normally a very comfortable position, he got me to lie at this weird angle. My lower half was on it's side as normal but he wanted my top half to lie slightly tilted towards my back so I was half on my side and half on my back. This was very uncomfortable and very difficult to maintain and I soon started shaking with the effort. I said I couldn't stay in that position so he let me had a short rest and then yanked me back into the contortion. He continually got his hand caught up in my line and pulled and yanked at it so hard I though he was going to pull the thing out. In the end I grabbed the line and held it down by my side to keep it out of his way. He sat on my line cutting off my drug supply and set the alarm off. And when he told me to hold my breath he forgot to tell me to breathe again so I would turn blue and the have to gasp for air before he remembered and said I could breath again. I was not impressed.
 |
| Lots of lovely bath stuff |
Back on the ward I waited for the results with a feeling of doom. I always anticipate the worst when it come to ECHOs and I wasn't expecting great things of this one due to the inexperience of the person doing it. However I was in for a pleasant surprise. The pressues in the heart have gone down a little bit so despite having felt really under the weather over the last few months my PH is actually well controlled. The problem, and the reason for the constant cough and congested feel, is water. I appear to be retaining quite a bit and there is a lot of it sloshing around in areas where it shouldn't be. So my furosomide has been increased from 40mg to 80mg a day for the next two weeks. After that I can return to 40mg and just take 80 every other day. They will review this at the next clinic.
So I was finally released and headed straight to the canteen for a cuppa before we finally headed home. Of course by then it was rush hour and it was raining again so the journey was long and tedious. I spent the evening on the settee and then had a soak in the bath before bed. Partly to try and ease my aches and pains and partly to get rid of all the residual gel that had now turned into a glue type substance and kept sticking my boobs together.
I woke up very late this morning and was greeted by the delivery of my sales stuff from Lush. Delighted I ran another bath and relaxed while I finished my book. Fortunately most of the damage to my chest was temporary and apart from a bruise over my ribs and a bit of raw skin on my sternum I've faired better than I thought. My shoulder is stiff and sore from all the line pulling but the line is fine and the entry site seems OK. Of course I've still got to go back to have the new meds but at least that is all I will have to have and hopefully there will be no hiccups.
 |
| Hung on a wall at the Royal Brompton |
The 365 challenge is still going well, though as I'm only eight days in I should hope so. I just wish the weather would improve so I can find something a bit more riveting to take but that will come. I've included the latest pictures in this blog.
My paints have finally arrived and I'm itching to get started only what did I forget to buy? Yep paper and canvass. What a numpty! So Friday will see me hot footing it to the nearest artist suppliers to get some of both. I still can't believe I did that.
Right time for a bit of Father Brown and a nice cuppa. Next blog Friday.
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