A Birmingham woman may only have months to live if she does not get a liver transplant soon. Sunina Paul is 31 years old was born with Biliary Artesia and has taken a turn for the worst.<\/p>\n
Doctors say her need is now \u2018super urgent\u2019 and her condition has deteriorated alarmingly.<\/p>\n
To make matters worse, she has a rare blood type B drastically restricting the chance of a donor.<\/p>\n
How long does she have left? \u201cHow long is a piece of string,\u201d she says.<\/p>\n
\u201cI might not get it in time. I have to face that. I don\u2019t know what is going to happen.<\/p>\n
\u201cMy liver might not survive for another six months. I take a day at a time.\u201d<\/p>\n
Born with biliary artesia, which blocks the bile ducts so bile builds up in the liver and damages it, the clock has always been ticking.<\/p>\n
An operation at Birmingham Children\u2019s Hospital when she was an infant helped slow that clock.<\/p>\n
Earlier this year, Sunaina, from Edgbaston, became very ill, worse than before.<\/p>\n
\u201cUsually I have two weeks of intravenous antibiotics and it\u2019s fine,\u201d says Sunaina.<\/p>\n
\u201cBut I just got the infection back and even worse. That was February and I am still on them now.\u201d<\/p>\n
Matters have reached the stage where only a liver transplant offers the chance of a longer life \u2013 but so far the outlook remains bleak.<\/p>\n
\u201cI was really optimistic in the beginning,\u201d she says. \u201cI thought I would have it in a few weeks. But a month passed, two months passed \u2013 and it\u2019s six months now.<\/p>\n
\u201cI am trying to be positive but I am also trying to be realistic because I don\u2019t want to lie to myself.<\/p>\n
\u201cIt\u2019s not just me that\u2019s out there who has this rare blood group. I know there has got to be others.<\/p>\n
\u201cSome doctors seem really positive and believe I can get a liver. Other doctors are telling me to prepare myself because it might not happen.<\/p>\n
\u201cThe first time I heard that, I think I was in a bit of a shock. I don\u2019t really cry about it.\u201d<\/p>\n
Despite her brave smile, Sunaina is suffering badly.<\/p>\n
\u201cI am always in pain,\u201d she confesses. \u201cConstantly. It is always there.<\/p>\n
\u201cIf anything, I moan about the pain because the pain is just ridiculous. It\u2019s like eight and nine out of ten when they ask me to score it.<\/p>\n
\u201cWhen they look at me, people are like \u2018Oh you look amazing! How can you be ill?\u2019<\/p>\n
\u201cI look okay but inside I am slowly dying.<\/p>\n
\u201cIt is what it is. I try to see people and enjoy special quality time with them but the nurses come three times a day so I\u2019m not really able to get out much.<\/p>\n
\u201cBesides, if I\u2019m in pain or feeling really sick, I don\u2019t want to do anything anyway. Most of the time I feel really drowsy, tired, fatigued. I sleep a lot.\u201d<\/p>\n
\u201cI think until it happens to maybe a family member or a friend, you don\u2019t realise how important it is to save someone\u2019s life.<\/p>\n
\u201cIn general, we don\u2019t donate as much as we should. I don\u2019t really understand why. With one body, one person, you can save so many lives.\u201d<\/p>\n
Mum Sianne said \u201cShe was my first child,I had no idea, no concept of what babies were meant to look like\u201d.<\/p>\n
\u201cShe was jaundiced. The nurses basically said \u2018It\u2019s normal, give it two or three days and the jaundice will settle.<\/p>\n
\u201cOn an Asian person jaundice is completely different. She had a greeny colour to her, and the whites to her eyes were slightly pale.<\/p>\n
\u201cAfter five days it didn\u2019t settle. A month went by, and the family GP saw she had a distended stomach and an odd greenish colour, but he just said it was just colic.<\/p>\n
\u201cBy the time she was six weeks old, my health visitor said we should see somebody else about it.\u201d<\/p>\n
Sunaina\u2019s case was referred to Birmingham Children\u2019s Hospital where she was admitted as an urgent case, rushing her infant body into surgery for corrective treatment.<\/p>\n
The operation, known as the Kasai procedure, would act as a temporary measure to re-establish bile flow from the liver.<\/p>\n
Biliary Artesia cannot be cured, but this procedure was the best way of treating the disease if done as early as possible.<\/p>\n
\u201cIn Sunaina\u2019s case, she was lucky,\u201d says Sianne. \u201cShe has gone on up until now with that little procedure that was done to her tiny body.<\/p>\n
\u201cShe has managed to somehow fight back all these years.<\/p>\n
\u201cI didn\u2019t know the enormity of what was going on. I had her at the age of 21, and I don\u2019t know how I would have prepared myself.<\/p>\n
\u201cI don\u2019t think I am prepared even now and I am a lot older.\u201d<\/p>\n
Although many black and Asian patients are able to receive a transplant from a white donor, for many the best blood and tissue match will come from someone of the same ethnic background.<\/p>\n
Sunaina is using her story to campaign for those from a minority ethnic background to register for organ donation to save a life just like her own.<\/p>\n
It may not be in time for her, but it will be a lifeline for others.<\/p>\n
You can register as an organ donor at www.organdonation.nhs.uk<\/p>\n
<\/p>\n
<\/p>\n","protected":false},"excerpt":{"rendered":"
A Birmingham woman may only have months to live if she does not get a liver transplant soon. Sunina Paul is 31 years old was born with Biliary Artesia and has taken a turn for the worst. Doctors say her need is now \u2018super urgent\u2019 and her condition has deteriorated alarmingly. To make matters worse, […]<\/p>\n","protected":false},"author":1,"featured_media":30234,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[37,3,112],"tags":[],"class_list":["post-30233","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-local-news","category-news","category-top-stories"],"_links":{"self":[{"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/posts\/30233","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/comments?post=30233"}],"version-history":[{"count":0,"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/posts\/30233\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/media\/30234"}],"wp:attachment":[{"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/media?parent=30233"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/categories?post=30233"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.theasiantoday.com\/index.php\/wp-json\/wp\/v2\/tags?post=30233"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}