Hannah had her six-monthly blood test today. I was so proud of my brave girl, who despite flinching a few times did not make a sound or shed a single tear. Once it was over ("I can have my sweeties now?")the production of a lollipop and a Winnie the Pooh 'braveness' certificate was enough to make the whole thing worthwhile for her.
We shall get the results back when we go to Dr Coad's clinic in a week.
Friday, October 27, 2006
Wednesday, October 11, 2006
Mainly Portal Hypertension
I emailed Dr McKiernan last night to clear up the questions I had following Hannah's ultrasound. I had hoped to catch him at the CLDF Conference last Saturday but didn't get aorund to it. What I did get chance to do was to thank Professor Millar personally for the clearly excellent job he did with Hannah's Kasai, and to show him just how lively and full of beans she is.
Back to Dr McKiernan....kudos to him for emailing me back straight away first thing this morning! Sadly, Hannah's enlarged spleen does mean she has some degree of portal hypertension. The fact that the spleen cannot be felt means that it is not too severe. He doesn't think there is a need to rush to check her platelets unless she is bruising more (an enlarged spleen can cause low platelets....the spleen sort of eats them up and the bigger it is the more it eats up....and low platelets can mean easy bruising and bleeding) and an endoscopy to check for oesophageal varices is not really indicated at this point....if her spleen gets large enough to be felt then that will be the plan.
Portal hypertension is very common in patients with biliary atresia (at the CLDF conference we were given a figure of 70-80%) and not all patients with portal hypertension bleed from varices...I know of a number of people who have had portal hypertension for a long time with no complications. I had also suspected that Hannah might have it, as she has some visible veins on her abdomen. Nevertheless I still feel pretty gutted. I did hope that Hannah would be one of those who didn't develop portal hypertension.....it blemishes our illusion of normality a little.
It doesn't really change anything though...as things stand, there is not any need to change the way her condition is managed, unless things get worse....still one day at a time, and something specific to pray about. I spoke to Father Tim yesterday about whether Hannah should remain on the 'prayers for the sick' list at church, when she is climbing around everywhere of a Sunday morning (my thoughts, not his). I said that although she is doing so well, I feel strongly that the prayers of our church community are contributing towards that. So we decided to leave her on for the time being....and I'm very glad of that now.
Other stuff....Hannah has had her flu jab for this year, and is due to have her adult pneumococcal in the next few weeks. Her next bloods are due at the end of the month, and it is not long now until we see Dr Coad - our first visit to outpatients at the brand spanking new University Hospital. I am going to attempt the bus to get there....wish me luck!
The CLDF Conference by the way was excellent....watch my blog for notes on the biliary atresia talk!
Back to Dr McKiernan....kudos to him for emailing me back straight away first thing this morning! Sadly, Hannah's enlarged spleen does mean she has some degree of portal hypertension. The fact that the spleen cannot be felt means that it is not too severe. He doesn't think there is a need to rush to check her platelets unless she is bruising more (an enlarged spleen can cause low platelets....the spleen sort of eats them up and the bigger it is the more it eats up....and low platelets can mean easy bruising and bleeding) and an endoscopy to check for oesophageal varices is not really indicated at this point....if her spleen gets large enough to be felt then that will be the plan.
Portal hypertension is very common in patients with biliary atresia (at the CLDF conference we were given a figure of 70-80%) and not all patients with portal hypertension bleed from varices...I know of a number of people who have had portal hypertension for a long time with no complications. I had also suspected that Hannah might have it, as she has some visible veins on her abdomen. Nevertheless I still feel pretty gutted. I did hope that Hannah would be one of those who didn't develop portal hypertension.....it blemishes our illusion of normality a little.
It doesn't really change anything though...as things stand, there is not any need to change the way her condition is managed, unless things get worse....still one day at a time, and something specific to pray about. I spoke to Father Tim yesterday about whether Hannah should remain on the 'prayers for the sick' list at church, when she is climbing around everywhere of a Sunday morning (my thoughts, not his). I said that although she is doing so well, I feel strongly that the prayers of our church community are contributing towards that. So we decided to leave her on for the time being....and I'm very glad of that now.
Other stuff....Hannah has had her flu jab for this year, and is due to have her adult pneumococcal in the next few weeks. Her next bloods are due at the end of the month, and it is not long now until we see Dr Coad - our first visit to outpatients at the brand spanking new University Hospital. I am going to attempt the bus to get there....wish me luck!
The CLDF Conference by the way was excellent....watch my blog for notes on the biliary atresia talk!
Subscribe to:
Posts (Atom)
