Taking Control


I now have a port-a-cath fitted. This is a small device that sits under my skin and has a line that sits at the top of my heart. It is a form of central line that has slightly less infection risk as when it is not in use it is covered completely because it is inserted under the skin. What the port means is that I can do IV treatments at home. I have started these IV treatments and I am already sleeping better because I am not feeling so nauseous at night. Doing the treatments myself is a little nerve racking as getting an infection is a serious complication, it helps to talk through what I am doing with my husband. I am certainly not the quickest at doing the treatments but this is improving, the more I do them.

As you will remember I was in hospital recently because my heart rate dropped to around 40 – which I am reliably informed is not a good thing. I put off going to hospital for 12 hours and got told off by both my hubby and my best friend – too many medics in my life to get away with anything. Anyway, after one shot of atropine they couldn’t get my heart rate up and they wanted to keep me in. I resisted this because there wasn’t a clear plan on what they would do, it seemed silly to me for me to take up a hospital bed just so they can keep an eye on me. So I went home with a promise that I would see my cardiologist. I duly saw my cardiologist and he thinks my low pulse and repeated very low blood pressure is down to the autonomic dysfunction and so has prescribed me fluids. Now I have a port it makes some treatments much more accessible to me. The plan is to start using the IV saline this week, with the help of my lovely local IV nurse.

I am trying to be very positive about my port, because of my lack of absorption one thing it means is that I can actually get medication into me, in a manner that will work. Therefore, not only do I have medications that are now working but I have control over my health, for the first time in 4 years. That is an amazingly positive thing.

Most of this week is preparing for my spinal nerve decompression surgery on Friday – this is where they will remove the mass of tissue that is pushing on my nerve and spinal cord. I have been for a check up on my elbow which is 3 weeks post op and everything is looking good. So onwards and upward to Friday and I have made a promise to my husband and my consultant that I will stay in hospital for as long as necessary – fingers crossed that won’t be too long!

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