If anyone follows me on Facebook, you’ll know that I have been really nervous about this appointment. The previous appointment was very dramatic as I came across a very obnoxious doctor who made me cry which in turn forced me to leave the room. I could feel myself shaking this time as I was really worried which doctor I’d come across.
Fortunately, I met a lovely Hepatologist who is also a Gastroenterologist. He was very knowledgeable and humble at the same time and can I say, normal? He listened to me and didn’t fob me off with, “when we see you next time....”, which I have been dealing with for over a year. I think his panic alarm set in when I informed that the diagnosis I received was bile reflux and that I had seen a private surgeon through Bupa for a very big surgery called Duodenal Switch so the bile would flow downwards without causing me so much pain. He, however has restricted me to no surgery and that they do not want anyone outside of QE touching me to perform surgeries.
I need further tests to rule out many other problems but also referred me for all these tests and also a nutritionist at the same time. My kidneys are not doing great unfortunately and this has been the case for the past year so I will also now be seeing a nephrologist. Between Aleena and I, I think we have got the whole NHS covered!
My kidneys do not concern me. I do not even panic over abnormal liver results but this mysterious pain has really taken the life and soul out of me. I avoid social circles because I cannot eat and drink everything. My diet is extremely limited. And I always worry when the pain will strike. I have been in pain in family members home and even ended up vomiting in their home. It isn’t pleasant and can really bring your confidence down.
I do not expect anyone’s life to stop for me but sometimes I do expect a little sensitivity towards my limited diet and what I am going through mentally and so sometimes avoiding parties and family functions is the only ideal thing for me. I do not want to burden anyone with my sufferings and although I never have an unfriendly face, pretending to have a fake smile also upsets me. My life takes a lot out of me and I’m not complaining but some days are hard.
I feel like I’m carrying a broken body around with me which the doctors are gluing bit by bit. My liver, my kidneys, my stomach and let’s not get into the side effects of the medications. The worst of all is, I forget things. Sometimes I genuinely cannot remember certain things and it has been irritating me but apparently Prograf can cause some memory issues.
Some days are so hard to get out of bed when I have debilitating tiredness and get my children ready for school. My son comes home with weekly homework and at least 2 books a week to read. Trying to keep on top of everything within the house and managing the children is becoming tiresome. Aleena has finally started respite which gives me a few evenings to catch up with Isam on his reading but also some evenings I just rest in bed.
I stopped this blog in the middle and just getting round to finishing it up. My liver doctor called me and well, I’m very anaemic hence the breathlessness and feeling suffocated and really exhausted. I have to have another endoscopy and a barium swallow test and maybe an angiography to see if there are any blockages. Let’s hope that’s what it is and they can treat it and I can be on my merry way to a healthier life.
Winter is wrapping itself around us and I hope it will be pass by soon and spring will be on its way. I do love the beautiful decorations and all the happy and cheery people because of the festivities. It is nice to see people smile. Just being around happy strangers can bring warmth into my heart and life. Let’s hope soon I will be one of them too!
