Saturday, 30 June 2012

Tube Leak Disaster!

Tube Leak Disaster!

What a disasters’ weeks it has been first the PEG-J infection then my PEG-J being broken. Yes that’s part of life with gasroparesis.

My PEG-J has been leaking from the gastric port not so much but I did not want to make the same mistake I did last time. Previously this occurred I did not give it any attention so as you can imagine the leak got worse overtime until it was leaking so much that the gauze I would put around it were not able to stop it. The situation got so worse that it burned my skin. The acid penetrated my skin leaving it sore and irritable. That time all I had to do was call the hospital from the letter that they had given me if anything happened with the tube. On the same day I went and they replaced the PEG-J ports; this only took 5 minutes.

Unfortunately, this time it wasn’t as swift. I called the same nutritionists again but they refused me because I was no longer under the royal free gastro team. However since I was discharged from there I did not know who my nutritionist was till this Friday. The royal free told me that I should then call Abott they would be able to help me, they gave another number which I called who told me that she does not carry the equipment’s around with her so she gave a number to someone else. And guess who it was? Yes it was the first person I contacted (lol) who gave me an even longer lecture this time. By the end of the boring long lecture I was finally given the number to my “nutritionist” at the royal London hospital whom I called, I basically first told her that she is “my last hope!”  I told her that my symptoms have flared up and that I cannot come to the royal London because I feel light headed, dizzy and sick the long journey will only worsen my symptoms. She was very kind and said that I shouldn’t travel when the royal free is my local hospital they should be able to do it without any trouble. Similar to what my consultant had said the day before. She said she will give a call to the nutritionist at the royal free.

 After waiting for what seemed like years I finally received a message from the nutritionist at the royal free (who sounded sort of angry lol) who said that she was leaving so she could not do it for me. Therefore, she had left the spare parts of the PEG-J ports at the endoscopy reception I was to collect them I then had two choices I either call the Abott nurse to come and fix it for me at home (which was the easiest option for me) so I did and she said to me she will not be able to come until Tuesday. The other option was I stay and wait in the endoscopy reception for the surgeon to finish his surgery then he might see me so I had no choice and I stayed there. The clock was ticking by so slowly yet I had waited over two hours now and I could see most of the staff leaving. I felt as though I was not going to be seen but the receptionist assured me and checked that I would be seen.

Finally, at around six o’clock I was finally seen. I was taken to one of the theatres where they carried out the endoscopy; it brought back some unwanted memories. I joked with the surgeon that I hate this place ad he said he could tell by my face lol. So he saw my tube and changed the ports. He was really kind; I guess the wait was worth it as the weekend was coming.  He checked and flushed the tubes. He then told me that in the future if anything happened to the tube I should directly come to the endoscopy reception where I should ask one of the Doctors on duty to have a look at it. He apologised for the inconvenience and that if this is the hospital that I had it inserted it and furthermore, that it’s my local hospital there should be no problem for me to come here.  (aaahhhhh J finally!) I’m thankful for him that he has saved me from future hustle. He gave some extra tape, ports and plaster bandages.

I finally went home with my new clean PEG-J ports. I seriously think there was no need for the massive hustle that took place for the last two days from being passed from one person to another like a ping pong ball! This caused me extreme anxiety and everyone knows what that does to the symptoms of Gastroparesis L and since my symptoms were already on a flare up they blasted out of the room. Leaving me shattered!

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