Things have been going well. I had my pre-anaesthetic appointment on Thursday morning. Anaesthetists are so strange whether you work with them as a nurse or are the patient. They have NO idea about some things and panic real easily....which is what they did with me once they found out I have FA and lower counts. They would not believe me that everything is organised and under control. I panicked because they paniced and Alan rang my surgeon and she said that everything is under control and that she had everything planned and went through the plan with us! She told me not to worry about the anaesthetists because she will be bossing them around! I am happy with the plan and my haematologist has spoken with Julie myOB/Gynae/surgeon and they have things worked out...no need to panic.
I saw my "gloomy doctor" yesterday afternoon and he was really good. Alan had spoken to him about not being so "gloomy" and letting "Charisse feel confident about going forward"....so yes, the risks are important but since the decision is made even though the risks...it is time to support. He did support me yesterday and said nothing negative. In fact...I got some great results that totally threw him off guard and I LOVE watching the doctor be perplexed and confused. Usually with FA and other bone marrow disorders that fail....the platelets have a shorter life span and become damaged and old easily and we have old platelets in our blood mostly more than young and fresh ones...it is part of what happens with the marrow failing but the doctor was SO surprised and perplexed to have the test come back that I have majority of young and fresh platelets in my system as opposed to the old and ineffcient ones. My platelets are efficient and work better than someone who usually has low counts. Somehow...he says...they are being made more efficiently and because they are young...they are more efficient even though the count is lower at times....my platelets do not act like "lower count".......for me at the stage of my marrow...lots of chromosome changes in the past and a slight increase in blast count the last couple of years...this is amazing...and the doctor is quite surprised. After he sat there so perplexed Alan said, "so this is a positive surprise" and he looked up and said, "yes, this is positive and I am not so concerned about the surgery with these results"......obviously still risks to surgery and someone with FA but this is amazing. I still think that medical science doesn't have the answer to everything and that there is a God and that God does do miracles and positive things in our lives.....interesting don't you think...I am very happy with these results.
The doctor said, "I suppose I won't say good luck because it is not appropriate"...implying that there is also bad luck so I dared to say...hehe...."but you can pray for me!". He looked at me and smiled...he smiled..the gloomy doctor smiled...hehe..and I said, "monday, 1.30pm put on your calendar....be deep in prayer for Charisse"...he then laughed and said, "yes, deep in prayer". So I came away feeling much better with that appointment and feeling like he actually was supporting me through this despite the risks and feeling more positive...and actually positive about my dreams and stuff for this year.
Anyway, one day til my operation now. Monday I go into the Womens and childrens hospital to be admitted at 1030am. I am supposed to have my supportive platelet transfusion around 12pm and then the surgery is booked for 1.30pm. I am probably in there for a week and will keep you updated as to how I am going after surgery.
Thanks for praying for me.
Love Charisse
Showing posts with label platelets. Show all posts
Showing posts with label platelets. Show all posts
Friday, January 18, 2008
Monday, January 14, 2008
24 Hour Post Transfusion
Hi Guys,
well I had my count done 24 hours post and got the results today. I am disappointed that the platelets didn't stay up in the 100'000s for ever...hehe....but they came down to 69 000 which the haematologist is happy with...he said that my platelets responded just like they are supposed to and that with my counts that go up and down....these are not a problem. They were 88 before the transfusion and 109 after and then 24 hour post they were at 69...who knows if that is just my own count or part of the transfusion but I am told it doesn't matter...although I like it when my count is in the 80's or 90's when it is just me.....but this is ok for post. The doctor said that platelets can go higher with different transfusions and that platelets can be all over the place with how high they go up and how well they hold and how your body responds but they responded well and the other tests came back with NO antibodies so there should be no reason why I won't respond well on the day when they give me a transfusion an hour before surgery. I suppose platelets can vary so much from day to day. I have had 30 000 difference in platelets from one day to another before...sometimes it is weird like that and then most times it is pretty stable.
Alan actually spoke to the "gloomy" doctor today on the phone. I am sure he would be so happy that I call him that. He feels that we have minimised the risk of bleeding for the surgery but harped on about infection and it being the "luck" of the draw...that is what he said the other day to me. I was actually very pleased with my neuts this time around...they were at 1300 and I think that is good! I know, I know....not normal and risk of infection is a very real possibility but I have seen that my neuts can respond to infection so that is encouraging. The doctor just wants me to be very clear about all the risks but I am starting to feel overwhelmed. I have planned for this surgery and had to deal with risks for Isaac's C-section when I had him...I need to deal with the risks here and I UNDERSTAND!!!!! The more I focus on the risks the more anxious I feel....I am informed and I need this doctor to back off a bit and give me some space....because I want to be able to go into my surgery feeling a little positive about it....if I am totally freaked out and negative....how do you make it through major surgery......having FA is about informed risk all the time...sometimes you can't do anything about the risks but you decide that it is worth the risk and take it...some doctors will not understand and some will....this one also has difficulty with people not choosing transplant....some will choose it because it is appropriate and some will not because it is not appropriate....the risk to my life is the same if I not transplant now to if I transplant now....so what do you do? It is hard to always focus on the risks and stuff of the decisions you make because sometimes either road is not nice.
One week to surgery.......it will be good to have it off my mind. For 5 years I have put this thing off because of risks and being anxious.....for 5 years I have not been able to put it to the side and not worry about it......so I am going to go ahead.
I went to the Christian book shop today and bought 2 new books to read while recovering. I love reading.
I am also explaining more to Isaac about what mummy is getting fixed to prepare him so that he doesn't panic too much and I am trusting in God to get me through even though I feel nervous.
Isaac starts school in 3 weeks. My baby is growing up! Reception...can you believe it? Today we went to check out the school uniform because he is going to a private school. The pants are SO big! Too big to just "move the button" like I was thinking originally.....I think he will need pants made especially for him. He has such a little waist. I only have 3 weeks to get this all organised and Alan tells me not to worry ...it will be done.
Ok, so I have updated and am now going to go. Oh...on Thursday I have a pre-anaesthetic appointment and on Friday a final appointment with the haematologist...I sure hope he doesn't scare me only 2 days before the procedure...I don't know if I can sit in another appointment and talk about all the risks again!!!!!
OK, got to go!
Love Charisse
well I had my count done 24 hours post and got the results today. I am disappointed that the platelets didn't stay up in the 100'000s for ever...hehe....but they came down to 69 000 which the haematologist is happy with...he said that my platelets responded just like they are supposed to and that with my counts that go up and down....these are not a problem. They were 88 before the transfusion and 109 after and then 24 hour post they were at 69...who knows if that is just my own count or part of the transfusion but I am told it doesn't matter...although I like it when my count is in the 80's or 90's when it is just me.....but this is ok for post. The doctor said that platelets can go higher with different transfusions and that platelets can be all over the place with how high they go up and how well they hold and how your body responds but they responded well and the other tests came back with NO antibodies so there should be no reason why I won't respond well on the day when they give me a transfusion an hour before surgery. I suppose platelets can vary so much from day to day. I have had 30 000 difference in platelets from one day to another before...sometimes it is weird like that and then most times it is pretty stable.
Alan actually spoke to the "gloomy" doctor today on the phone. I am sure he would be so happy that I call him that. He feels that we have minimised the risk of bleeding for the surgery but harped on about infection and it being the "luck" of the draw...that is what he said the other day to me. I was actually very pleased with my neuts this time around...they were at 1300 and I think that is good! I know, I know....not normal and risk of infection is a very real possibility but I have seen that my neuts can respond to infection so that is encouraging. The doctor just wants me to be very clear about all the risks but I am starting to feel overwhelmed. I have planned for this surgery and had to deal with risks for Isaac's C-section when I had him...I need to deal with the risks here and I UNDERSTAND!!!!! The more I focus on the risks the more anxious I feel....I am informed and I need this doctor to back off a bit and give me some space....because I want to be able to go into my surgery feeling a little positive about it....if I am totally freaked out and negative....how do you make it through major surgery......having FA is about informed risk all the time...sometimes you can't do anything about the risks but you decide that it is worth the risk and take it...some doctors will not understand and some will....this one also has difficulty with people not choosing transplant....some will choose it because it is appropriate and some will not because it is not appropriate....the risk to my life is the same if I not transplant now to if I transplant now....so what do you do? It is hard to always focus on the risks and stuff of the decisions you make because sometimes either road is not nice.
One week to surgery.......it will be good to have it off my mind. For 5 years I have put this thing off because of risks and being anxious.....for 5 years I have not been able to put it to the side and not worry about it......so I am going to go ahead.
I went to the Christian book shop today and bought 2 new books to read while recovering. I love reading.
I am also explaining more to Isaac about what mummy is getting fixed to prepare him so that he doesn't panic too much and I am trusting in God to get me through even though I feel nervous.
Isaac starts school in 3 weeks. My baby is growing up! Reception...can you believe it? Today we went to check out the school uniform because he is going to a private school. The pants are SO big! Too big to just "move the button" like I was thinking originally.....I think he will need pants made especially for him. He has such a little waist. I only have 3 weeks to get this all organised and Alan tells me not to worry ...it will be done.
Ok, so I have updated and am now going to go. Oh...on Thursday I have a pre-anaesthetic appointment and on Friday a final appointment with the haematologist...I sure hope he doesn't scare me only 2 days before the procedure...I don't know if I can sit in another appointment and talk about all the risks again!!!!!
OK, got to go!
Love Charisse
Friday, January 11, 2008
Success SO far!
Hello All,
today was the day! I had my platelet trial and my IVIG infusion. It was such a long day. Despite the fact that the doctor who I talked about being gloomy in the last entry...he said he would ring my doctor at the center and tell him about the trial and what he wanted to do...well he didn't and we rang because we didn't trust him and we told the doctor about it all....he took the other doctor's mobile and he didn't answer so none of them got to speak to each other. So my doctor at the specialist center re-ordered all the matching and cross matching stuff and I waited for 3 hours for my specific blood type platelets to come! We were there from 1030 and they started the platelets at 2pm...just one bag. Well I was so happy to recieve good counts for before the transfusion. My platelets were 88 000...which is so good. Before I was sick with pneumonia they hit 90 000 and then I got sick and they dropped - well they are headed up again. I had no reactions to the platelets as they went in. I was so scared. Then an hour after the transfusion we tested and it had gone into the 100 000's which is excellent! That is where we need them for this surgery.......my body responded! I still have not spoken to my other doctor who get sgloomy...who know what he will be gloomy about...it didn't rise to over 200 000's maye be and that is not as good as he would like...I seem to be able to imagine what he would say but that does not change the fact that they said they need my platelets to be able to rise to the 100 000' and I did. In 24 hours post transfusion I will have another test for platelets to see how long the platelets last so they can judge how much time they have with surgery and needing platelets to maintain for healing. If my platelets stay where they are right now without the transfusion it will be fine for healing and I should heal well....I am SO relieved and happy it went well. I got home at 7.30pm tonight after the infusion and have been really tired. I have usual reactions with infusion....tired, foggy brain, sore and achey limbs and restlessness.....feeling vague...but it will be ok. I usually wake up in the morning really shaky and stuff. it is normal for me.
So that was my day...another step til the surgery. only 9 more days and I will reach another milestone.
We had prayer meeting last night and it was most powerful. God moved powerfully and spoke individually to people. Jesus encouraged me last night with lots and lots. I won't go through them but He is truely amazing people. If you knwo Jesus....He is truely amazing through the good and the bad and He cares! I was powerful.
Well, I will update again when I hear the new news about 24 hours post transfusion and where we stand there. Thanks guys...thanks for the support. This week I got a lot of email support and guetbook support and it has been great. It has helped me face this head on...thank you...I really need that support more than anything because this is huge.
Lots of love,
Charisse
today was the day! I had my platelet trial and my IVIG infusion. It was such a long day. Despite the fact that the doctor who I talked about being gloomy in the last entry...he said he would ring my doctor at the center and tell him about the trial and what he wanted to do...well he didn't and we rang because we didn't trust him and we told the doctor about it all....he took the other doctor's mobile and he didn't answer so none of them got to speak to each other. So my doctor at the specialist center re-ordered all the matching and cross matching stuff and I waited for 3 hours for my specific blood type platelets to come! We were there from 1030 and they started the platelets at 2pm...just one bag. Well I was so happy to recieve good counts for before the transfusion. My platelets were 88 000...which is so good. Before I was sick with pneumonia they hit 90 000 and then I got sick and they dropped - well they are headed up again. I had no reactions to the platelets as they went in. I was so scared. Then an hour after the transfusion we tested and it had gone into the 100 000's which is excellent! That is where we need them for this surgery.......my body responded! I still have not spoken to my other doctor who get sgloomy...who know what he will be gloomy about...it didn't rise to over 200 000's maye be and that is not as good as he would like...I seem to be able to imagine what he would say but that does not change the fact that they said they need my platelets to be able to rise to the 100 000' and I did. In 24 hours post transfusion I will have another test for platelets to see how long the platelets last so they can judge how much time they have with surgery and needing platelets to maintain for healing. If my platelets stay where they are right now without the transfusion it will be fine for healing and I should heal well....I am SO relieved and happy it went well. I got home at 7.30pm tonight after the infusion and have been really tired. I have usual reactions with infusion....tired, foggy brain, sore and achey limbs and restlessness.....feeling vague...but it will be ok. I usually wake up in the morning really shaky and stuff. it is normal for me.
So that was my day...another step til the surgery. only 9 more days and I will reach another milestone.
We had prayer meeting last night and it was most powerful. God moved powerfully and spoke individually to people. Jesus encouraged me last night with lots and lots. I won't go through them but He is truely amazing people. If you knwo Jesus....He is truely amazing through the good and the bad and He cares! I was powerful.
Well, I will update again when I hear the new news about 24 hours post transfusion and where we stand there. Thanks guys...thanks for the support. This week I got a lot of email support and guetbook support and it has been great. It has helped me face this head on...thank you...I really need that support more than anything because this is huge.
Lots of love,
Charisse
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