Blood Results This Week

Hello All,

I have been feeling a little better the last 2 days. I have managed to have a shower without collapsing afterwards. I have still puffed a bit but much less than I was at the beginning of the week. I still have to have a good rest after the shower before doing much else but it is such a relief to be able to complete my shower without much drama.

At the beginning of the week I felt so weak in the shower. I have been sitting down on a chair. Once I got in the shower I felt like I could not get out again and then I would start to cry. It really discouraged me.

Today I have been shaky but still feeling a bit better and i think I am sleeping better at night too. Yesterday I gave Isaac a bath for the first time in 4 weeks! It was a bit puffing and mum took over after a while. I find drying him TOTALLY exhausting but I washed his hair and helped him learn to wash himself as well. The fact that I ran the water and did the majority of his bath except for drying and dressing (ok that is a lot to do) is an accomplishment. I have to look at the small accomplishments and congratulate myself otherwise I get too upset with myself.

Yesterday I managed to get to my specialist appointment for blood and a follow up an hour away. This is a GREAT accomplishment and I didn't throw up on the way. I tend to have car sickness right now and I can't handle trips. I either have to stop many times to get air or throw up or break out in sweats. I made it to the "cancer center" withouth too many dramas at all. So I handled a big outing which was good.

Blood. Last week I reported on my results and was really upset about my counts. What a difference a week makes! I had bloods yesterday and my haemaglobin has gone up from 98 (9.8) to 126 (12.6) which is in the normal range. I am usually about 140 (14) but I am really happy with this increase. May be that is why I feel a little better....or may be I am just recovering well. Actually the doctor says I am doing really well for someone who has FA. Those are not the only good results. Last week my platelet count was reduced to 38 000 and this week it has gone up to 65 000.....just in a week. My marrow is working very hard though. My MCV which shows how are your marrow is working...is usually in range ata 90 (normal imbetween 80 and 100) and this week is up at 103...so my marrow is obviously working hard for me. I usually am in range. Although with good results there are always the disappointing ones. I am waiting for the haematologist to talk properly about my neutrophils this week as they were 1000 last week and are only 100 (0.1) this week. Amazing how things change in a week. I did catch an extra cold from Isaac this week and I think that my marrow has taken such a hit with the pneumonia that the neutrophils reacted by reducing to only 100...a little scary but I will watch who I go near and what I eat while they are this low. I am inclined to want to have a test in a couple of days to see that it has gone up and I feel a bit safer. I have never been that low before! Not that I know of...so that scares me a bit...but look at my haemaglobin and platelets! They have gone up...on there way up. I must remember that in this recovery stage the marrow is building up strength and can go either way with results...down or up quite dramatically and not get myself too upset with huge change.

I am a little concerned about my liver. My GGT ezyme which usually sits at 1000 for me and that is really high...normal between 5 and 35...yep, I sit very high as a normal for me.....but have risen to 3917! Now that is high. So we are waiting to speak with my liver specialist to make sure that we don't have to be too worried. I know that high liver enzymes can cause nausea and I have had heaps of it. So we will check if this is a worry. As I said I had a liver ultrasound within 2 weeks ago and that was normal...so this could just be a later reaction from my liver as to how badly my body got hit.

Anyway, I am not so open with my counts but am feeling a little more comfortable sharing right now.

Isaac has been a little unwell. I don't know if you remember that he chipped his tooth...actually the enamel chipped off it and you cannot notice it but the dentist said he needed to have it fixed under a general a couple of months ago. They need to cap it to make sure that it doesn't get sore and infected. Well, Isaac has been booked for next Friday to have this done but he has been having high temperatures and crying and complaining of his teeth and his mouth. I also think he has a small ulcer on his tongue. He gum around his tooth is definitely swollen...so I am glad that he is having it done only next week because I don't want huge problems with it. I am suspecting the tooth is playing a role in the temperatures and unwellness because I can't see anything else. SO tomorrow he has an appointment with the GP to have his mouth checked. Check there is no abcesses or infection that needs to be dealt with ....also check his ears and mouth and stuff to make sure we are not missing something with these temperatures.

Isaac had a friend over today and really enjoyed the play after the panadol worked and his fever broke. He was back to normal...amazing! My friend is the mum of this child and we had a nice catch up time. I had not seen her since a couple of days before I was admitted into hospital. It is nice to be able to chat with a girlfriend.

Tomorrow my sister is coming around to be with me in the afternoon and help with Isaac once our nanny has gone home. Our nanny was unable to stay the extra hours to make sure I am ok for the last couple of hourse of the day before Alan gets home from work. We are not taking chances in leaving me by myself with Isaac at the moment while I am so tired and recovering. Would not be a wise move. We are trying to give me as much rest as possible.

On Friday night is Alan's 30th birthday dinner at a restaurant. It is going to be great. I am saving myself for it and trying to get so much rest in. As it is I may only be able to sit there and try not to get too carried away..I may not be able to endure the whole night but this is Alan's special night and I want to be a part of it. We ordered the cake today.

Well, this is a long post and I better go before I bore you all with it.

Thanks for checking up on me!
Love Charisse

Results

Hello All,

got blood results today and I am a little disappointed. I suppose it is good that they have not really changed at all. Haem 98 (9.8) still and platelets still about 38 000. It is so weird having these low counts and I know I am impatient for them to recover from being really sick. My haem was 140 (14) before the pneumonia. No wonder I feel tired on top of just recovering.

Oh well, wait til next weeks bloods again to see if anything has gone up again.
At least bilirubin is still steadily coming down and my eyes are not jaundice (yellow) anymore. Still a little ways to go until it reaches normal though.

Liver results have started to go back up to "my normal". Amazing how when I was sick they went down to the normal "normal" and then as I have gotten well they have gone back up to my disgustingly "high normal" but I feel a better with it up there...weird. Liver ultrasound shows no change and that my liver is just being my liver. So nothing to be worried about at the moment.

Ok, got to go.
Love Charisse