if you are hungry you can eat, if you are thirsty you can drink, if you want to bathe you can take, if you are cold you can wear what you want if you are hot you can wear less clothes, you can choose what to eat and what time you want to eat if you feel tired you can leave, if you feel like doing necessities you can go to the toilet. even then everything bothers you is the work is because it rains or the sun, or because you have to study because it does not feel anything on television, etc.
Now imagine that you can only eat 2 or 3 things because the body does not accept anything else, imagines that you always live with bone pain, imagines that you have to force yourself to eat to not stop at the hospital, imagines that you live almost every day feeling sick. you go on the bus you throw up, you throw up at the mall, at school on holiday classes other than on the holidays you get tired of so you can understand a text or a school subject that takes 1, 2 hours to understand you take days, you at the beginning of day you catch the bus you leave at the stop you need and at the end of the day you come back but you don't know or remember anything that happened during the day, or you don't get home on time and your family has to go look for you already you lost because you are no longer aware of things and end up in the hospital in a coma, imagine that you get an 11 or 12 in school when the others get 15,16 because no more. imagine being in a hospital bed being thirsty but you can't drink it because you have a n ariz to the stomach, you want to eat but your body accepts nothing and when you accept it is by tube, you want to urinate but only by tube, you want to take a bath but only if they give it to you or it is in bed or you go wheelchair, imagine you have catheters and probes on your arms legs neck feet, imagine what it is like to be in a coma but hear everyone around you but you can't communicate, imagine having to walk if you fall into the street in a coma or passed out and can't talk, imagine you in a bed hospital you have cold or heat but you can not talk, imagine not knowing when the next crisis will be, how long you will be hospitalized, you plan where you will spend the holidays where you will make the years. but still you find life a dry or Boring others don't have this possibility because what counts is to live just one more day, this was my movie since I was born. So you must be silly and live life

as already know for 2 years that fis a transplant, for many this means that I'm healed which is not true, a lot has changed is right the quality of life has improved a lot, but a genetic error is impossible to cure, although I already make a practically normal life, the mistake is always there I went from being a person with an active disease to a person who has a disease that is in the body but not active, does not mean that if I had a child I could not pass this same disease.
It is clear that although life is already more normal, even though I don't know what people mean by "normal" because normal for me may not be normal for the person next to me or normal for me. us in this country may not be normal for the neighboring country but finally let it for those who want to shoot elsewhere kkk, he left unseen but sometimes complicated marks for those who have to live with them daily ie I suffer from osteoporosis whatever you do be careful with falls and all this is good to remember that a few years ago I broke a wrist when making a bed, I have venous problems, only these 2 problems give me headaches, because or the weather (humidity, cold, heat, etc) I have pain is in the arms legs back muscles etc, the hair is almost always falling out because of the nutrient medication, etc, the stomach is all broken now because of the physical and aggressive extent of either food that was also required to do because of the disease, the head that poor thing kkk ta as you can after so many comas, loss of orientation memory I have to send messages and alarms everywhere if I do not forget everything, what comforts me is knowing that I am so due to illness and not stupids that most young people and even adults make or do to their bodies like (alcohol, drugs, charros), etc ...
the gut also got all havaria from time to time is diarrhea after diarrhea
the blood is so damaged, too, I have to be on medication not to clot or thrombus.
eating normal food is hard because I want and I know I can but it seems that my body doesn't like it very much I usually say that the body is not shaped for it kkkk
if by chance one saves something i'm honest i don't know kkkkk, who says yes to someone who says no one thing i know bad livers i know k can't accuse me of that anymore because the piece has already been changed kkkkk
so goes life

hello friends the last time I wrote it was in 2015 because well the removal was due to my illness getting worse.It was so bad that I was near death.What saved me was a liver transplant, things are better now and I'm adapting to a new life, everything is different the medication the food the routine all the same, it's all different and strange but little by little I'm learning to live my new life my new reality

this year survived three comas because of my illness and I owe it to great team of doctors who follow me, the first coma was due to a gastroenteritis, the second was due to a urinary infection, and the third was because my body stopped produce an amino acid (citrulline) but thanks to rapid medical intrevençao they found ok went and put me to take citrulline and also wanted to thank all the friends who never dropped me

quando temos amigos temos tudo

este ano de 2013 foi um ano muito dificil para mim  pois começei o ano com uma virose pulmunar depois tive em coma  nos quidados intensivos e estive internada por cerca de 15 dias,depois tive constipaçoes e gripes,mais tarde tive uma bronco pneumonia,em seguida tive uma otite depois tive herpes zooster segudo de uma paralesia facial entre outras coisas mas uma coisa posso dizer que tirando as pessoas que não chagaram a saber destes problemas de saude e algumas pessoas que souberam mas fizeram de conta que nada se passava tive meu pai sempre ao pe de mim tal como amigos  e imensas pessoas que  me telefonaram mandaram sms ou mensagens via  internet  a esses agradeço imenso e para terminar so posso dizer  aquilo que ja o ditado dis quem tem amigos tem tudo bjs para todos

as coisas simples que nos fazem sorrir

por veses sao as coisas mais simples que nos fazem sorrir e nos dão a alegria de viver.
enquanto ums passam a vida a martirizar-me por nao ter emprego e so dizem mal de mim principalmente nas minhas costas a outros que sem pedirmos nada nos estemdem a mao e exemplo disso sao as minhas amigas micahella,diana(licor beirao),celia e por ultimo a estrela cintilante a vania que telefonam-me quando estou bem mas principalmente quando estou mal,ajudam a divulgar o meu trabalho e estao prontas a ajudar em todos os sentidos .
a estas estrelas quero deixar aqui um enorme agradecimento

Quando aparece a doença

quase sempre o quadro clínico apresenta-se durante o período neonatal por uma deterioração neurologica rapidamente progressiva que começa após um período de 1 a 2 dias de normalidade aparente.

a medida que os níveis de amónia aumentam os pacientes afectados desenvolvem recusa alimentar,anorexia,alterações do comportamento,irritabilidade,vómitos,letargia,ataxia,convulsoes,coma,edema cerebral e finalmente colapso circulatório e morte.as formas menos severas podem apresentar-se em qualquer idade,ate mesmo na fase adulta,com sintomas intermitentes de hiperamonemia,transtornos do comportamento,ou disfunção neurológica.

quando da apresentação inicial devem ser recolhidas amostras para perfil de aminoácidos quantitativos no plasma,analise de ácidos orgânicos urinários e dosagem do acido acido orotico na urina.o padrão de de alterações aponta geralmente a um distúrbio especifico.para muitos dos distúrbios a confirmação da deficiência enzimática suspeitada pode ser feita com eritrocitos periferiais ou com fibroblastos cultivados da pele,outros distúrbios requerem a biopsia hepática.alguns dos distúrbios podem ser confirmados por estudos genéticos moleculares.

Por:Julieta Rocha