I am blogging on this as a shout out for help! I still dont have a crystal clear understanding of MC's condition. Slowly but surely, I am reaching out. My husband took time to show me all her medical records and explained the numbers and bla-bla medical terms. I am happy to report my progress.
As I explained, numerous blood tests were done, and would be continuously done, to check on her condition. Now, whenever they check the blood tests, they focus on the results of her hemoglobin and bilirubin levels.What is hemoglobin?
Hemoglobin is a protein that is carried by red cells. It picks up oxygen in the lungs and delivers it to the peripheral tissues to maintain the viability of cells. Hemoglobin is made from two similar proteins that "stick together". Both proteins must be present for the hemoglobin to pick up and release oxygen normally. One of the component proteins is called alpha, the other is beta. Before birth, the beta protein is not expressed. A hemoglobin protein found only during fetal development, called gamma, substitutes up until birth.
The normal level for MC's age (5 years old) is between 11-14.5; her records showed fluctuations from 8.5 to 10.4. For her condition, reaching the 10 mark is already a good sign.What is Bilirubin?
Bilirubin is a breakdown product of hemoglobin, the substance in blood that carries oxygen. Normally when blood cells become old they are trapped and destroyed by the spleen. When this occurs, the hemaglobin must be broken down in the liver to bilirubin in order to be disposed of. Bilirubin is eventually excreted in the bile and leaves the body in the feces.
The normal level of bilirubin depends on the individual laboratory. Most laboratories consider a level of 1.1 milligrams per deciliter (mg/dl) or lower to be normal.
When the bilirubin level reaches about 3 mg/dl the white parts of the eyes become yellow ("icterus"), the urine becomes dark, and the skin becomes yellow ("jaundice"). Patients with high levels of bilirubin also experience itching. (From Hepatitis C Information Central)
MC's records states her level seesawing from 1.9 to 3.5.
It is really frustrating not to know everything; how would you expect me to understand those medical reports in Deutsch when I cannot even decipher them in the medical English terms! At least now I can sleep better.
2 comments:
hiya - yep my sisters two kids both have HS and they have blood tests done every month. I have HS and my tests were done monthly till I was 6 - my spleen was taken out then and they continued to test me every couple of months after that till I was about 8. The haemoglobin test is another sign of anemia - so if too low you go into what they call anemia aplastic crisis and sometimes may need a transfusion to get that up to normal again. The bilirubin is from the red blood cells dying too early and the liver trying to work its way through all those cells (which the spleen kills off too early seeing them as abnormal and also causes anemia). I was pretty much white as a ghost as a kid until I turned yellow and then they took my spleen out. Now just pale because I'm Irish and cant tan well ;-) If you ever have any questions drop me a line - its scary being in a different country and dealing with medical issues esp for kids. Sineadborg at gmail dot com. Best of luck and thinking of ya! I just got my doctor here to get things ready to test our baby when they come into the world so we can find out if they have HS as well. Turns out the hospital didnt have any protocols for testing HS in babies so we're inventing it for them ;-)
hi there, thank you very much. you would hear from me, too. dont you see the things we have to get through -- teaching the doctors and inventing protocols for them. pls. tell the doctors there to share the invented protocols for testing to all doctors (esp here in germany.)good luck!
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