Hello All,
good news. I came home today. Not so nice news...I am still in a lof of pain. Despite this pain I had had enough of the hospital. I wanted to manage my own pain relief at home without all the rules of the hospital...that doesn't mean that I take medication wrongly, it just means that I am adjusting my pain relief to different medication. The Women's and Children's Hospital does not prescribe the best med that helped me with C-section with Isaac and this same med is needed for helping with my pain relief but it was banned from the hospital....apparently too many people forming addictions. However, I have capadex for other procedures that are in in this hospital and I have them at home and the doctor mentioned I could take them once out of the hospital. I hope I don't end up back in hospital for problems with pain because I am unbelievably sore and it is really hard to move around. So I have started up a new pain regime and will see how that goes with relieving some pain.
I had had enough of the babies crying each night. I was on the gynae/antenatal ward and they needed to also use it as overflow for postnatal so there were lots of babies crying at night time and I became a little tired of that. I know the babies can't help it or the mothers but when you are in so much pain and you don't feel rested towards the end of your stay...it is time to go home and rest. However, at the beginning when I felt really awful with the pain and post surgery I knew I couldn't cope coming home and needed that break from my son...so it is weird how hospital is a relief at the beginning and then you get sick of it after a while...shows that you are ready to go home.
The cut looks great. The bruising is already fading. It looks less bruised than when I had my c-section with Isaac 5 years ago....same place and all. Amazing. I was amazed at how well my body handled the procedure. No bleeding out and no haemaglobin drop and platelets higher and stable all week!
Isaac is really glad to have me home. He was becoming teary with me in the hospital and said to me today, "when I wake up in the morning and check your bed, you will be lying there, sleeping! You will still be home!"....he had a great smile on his face.
He has a week until he starts school for the first time. I need to get the rest of his uniform from order. He is only a little guy and we had to order it. I really hope it all arrives in time. We also have to get his school shoes and hat. Hmmm...left it late you think? Hopefully Alan can take me out in the wheelchair to help look for shoes. I have no idea how much I can handle this week but at least Isaac will feel secure this week with me home and hopefully become excited about school. He still states that he doesn't want to go. I know he will enjoy it. I think he is nervous and he doesn't like the idea of leaving me at home but he will see that this is all normal for kids his age and this is what happens and mummy will be there to pick him up and talk to him about his day
I will be taking it easy this week even though there is school to organise. Alan will help with a lot of it.
I wanted to thank Ouma and Oupa, Nanna and Puppa and Danielle our dear Nanny to Isaac and friend to us for helping with Isaac this week while I was in hospital. It made it easier for Alan and I and I am sure it also made it easier on Isaac even though some days he was quite teary and just wanted to be with Alan and I.
Where from here...just recovering and the usual FA surveillance that I am due. Bone marrow biopsy/aspiration and MRI for head and neck cancer. With this surgery I also had all my gynae surveillance....hysteroscopy and pap smear.
Thanks for all your encouragement and messages.
Love Charisse
Monday, January 28, 2008
Thursday, January 24, 2008
3-days post surgery
Hi everyone.
i'm still in hospital recovering but am doing well. I have had trouble with pain--it hurts lots but we are now figuring out my pain regime but will have it figured out well before i go home.
I'm still not sure how long i will be here, but will probably be out by Tuesday.
My wound is going well; it is bruised but not as nearly as bruised as I expected. I thought my whole abdomen would be covered, but it is really just around the wound and a couple of centimetres down.
My platelet count has been stable and I have not needed any further support therapy. I miss Isaac, he has been very good and when he gives me a cuddle in hospital he tells me he will do it "very gently", and when he gives me a kiss he tells me he will do it gently.
Alan took him home to sleep at our house last night, and this morning when he woke up he went into my bedroom to look for me, and told me when he came in to visit me today that he looked for me but i wasn't there. So I explained I would be in hospital a little while longer just to let my tummy heal.
Nothing else to report on. I will let you know how I am in a couple of days.
Thank you for all your support and emails and guest book entries, they have been very encouraging.
Love Charisse
i'm still in hospital recovering but am doing well. I have had trouble with pain--it hurts lots but we are now figuring out my pain regime but will have it figured out well before i go home.
I'm still not sure how long i will be here, but will probably be out by Tuesday.
My wound is going well; it is bruised but not as nearly as bruised as I expected. I thought my whole abdomen would be covered, but it is really just around the wound and a couple of centimetres down.
My platelet count has been stable and I have not needed any further support therapy. I miss Isaac, he has been very good and when he gives me a cuddle in hospital he tells me he will do it "very gently", and when he gives me a kiss he tells me he will do it gently.
Alan took him home to sleep at our house last night, and this morning when he woke up he went into my bedroom to look for me, and told me when he came in to visit me today that he looked for me but i wasn't there. So I explained I would be in hospital a little while longer just to let my tummy heal.
Nothing else to report on. I will let you know how I am in a couple of days.
Thank you for all your support and emails and guest book entries, they have been very encouraging.
Love Charisse
Tuesday, January 22, 2008
30 Hours Post Surgery
I arrived at the hospital at 10:30am so that I could have my support platelet transfusion at 12pm sharp. Surgery was booked for 1:30pm, but the staff were so disorganised (even through my private surgeon had spent ages organising everything for them--with platelets available for a 12pm transfusion), the nurses still took forever to get the platelets down to the surgical suite... I had them 1 hour late, and not only that, when the nurse went to put them up she pierced the bag and platelets dribbled all over the wall, my arm, my chair and continue to trickle down the line.... I immediately started to panic!!! Worrying that I was loosing precious platelets on the floor rather than going into my veins!!
they taped the bag up with Opsite (sterile tape) and continued to run the rest into me. however, isaac who was watching with Alan from the side became somewhat distressed and wanted to leave as I was panicking and there was several nurses crowding around trying to stop the debacle.
I finally went to surgery at 2:30pm.... they decided to give a second bag of platelets while I was under just in case.
The surgery went very well, and I am in my room on the ward recovering. My surgeon saw me today, and she said the procedure was a complete success and I didn't bleed much at all.
I had somewhat of a rough day today, as I did not seem to get my pain under control very well. I had a patient-controlled analgesia machine (containing Morphine), but spent most of the day with a pain score of 8/10 (10 being the worse pain ever!!)..
I also had what felt like a completely incompetent nurse in the early shift today, who really irritated me. I had high anxiety for most of the day, as she seemed to push me into getting out of bed, and race me off to the shower all without giving my head a chance to stop spinning!! Furthermore, she came in to take bloods and didn't even allow me to prepare myself, which resulted in me getting distressed... THEN after giving up on the bloods, she was around the other side of the bed within the same breath to yank out my catheter!!! At that point, both Alan and I insisted she stop and give me a chance to prepare..... I braced myself and the job was done. Most people would know that I am a very private person and need time to prepare myself to allow people to do invasive procedures on me like this. To say the least, I felt traumatised by the time her shift was over, and cried.
My surgery scar is as impressive as my original C-section, which is about 15cm long and at the moment just hurts! I found out more interesting stuff about my insides which relates to FA but I'm not up to sharing that right now.
Tonight I am off the Patient Controlled Analgesia (Morphine pump) and now on sub-cup Morphine and strong oral medication for pain relief.
I have not bruised much so far and am stable. I don't know how long I will stay in hospital--possibly 1 week.
Thank you for checking up on me. I will write another update soon.
Love Charisse
Friday, January 18, 2008
Great News! Surgery still booked for Monday!
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
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
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
Saturday, January 5, 2008
Platelet Transufions/Surgery
Well, not long to go now and I have my surgery. It is only 14 days until this surgery. It is corrective surgery. I have been planning it for a long time and so many things have gotten in the way.
So Friday I had my haematologist appointment. My platelet count needs "back up" for this surgery. It is a big surgery. I can handle smaller procedures and every day life with my platelet count but I really need help with this surgery. They will be cutting me open and it is not a small incision. I have been told it will be a reasonable size. I have only ever had one platelet transfusion in my life that I am aware of and it was when I was 17 years old. I had a reaction to the drug, quinine, and it knocked out my whole CBC count and I went into acute kidney failure. When I was 17 the platelets held well and I only had to have one.....in that instance my platelet count dropped from about 150 000 to only 8000. I remember my eyes haemorrhaging...interesting....got side tracked.
So I went to my haematologist and had convinced myself that it is ok that I need to have the platelets because I am not good with medical intervention and I become freaked out and upset that I need it. I even delayed surgery a while back because I couldn't cope with the idea of needing some platelets but got over that....still feel weird but it is ok and I am excited about the surgery because it means a lot. I went into the appointment feeling positive and my doctor...who has not seen me for about 12 months and is always telling me he never gets my bloods starts to tell me about how some people don't respond to platelet transfusions at all...and I could be that person....blah, blah, blah...and if this happens then everything that you have planned for this year is down the toilet and blah, blah, blah and am I prepared for this. He then said...doesn't matter how well I responded to the one when I was 17 ...because platelet eating antibodies may have developed over time and you may not respond and can't have surgery or do any of this other stuff. He then told me there was no reason to wonder this with my bloods because nothing tells him this but be prepared! I felt like he crushed my spirit altogether. I sat there, quietly, my heart pounding, dread building up and feeling like I was going to throw up. Some doctors can give you all the scenarios...both good and bad and seem like they are not crushing your hopes and dreams and your spirit...some just seem to have the knack to crush you. My other doctor who I miss SO MUCH was very good with chatting to me. He would tell me the good and what we have planned and what to expect and then he would tell me the odds of anything bad happening and then he would add....."however, let's deal with that if it happens and just focus on what we have planned right now"...and I would feel good and have hope. He even told me he never wanted me to have my hope crushed because how would I ever survive a life with FA if I had no hope or dreams. He was really good. This other doctor...he seems to forget all about that and just focus on the bad stuff....and there is not really anything exciting about FA to focus on! Let's face it.....bone marrow failure, pre-leukaemia, the expectation of how long your life will be once you get to my stage....cancers...blah, blah, blah...when a doctor decides to sit down and really tell you or remind you about FA....it is quite devastating. I told this doctor that I am always taking risks ....otherwise I would live in a box with FA and never have a life! He said that is true.....so instead of just asuming that I would go badly with a platelet transfusion like I felt he was saying....I will have all the HLA matching and blood grouping and all of that done tomorrow...I will even test for antibodies against platelets and my clotting ability and on Friday I will have a trial of how effective a platelet transfusion is for me. We will check how far the platelets rose an hour after and 24 hours after. That way when I go for my surgery we will know the timing of stuff and feel more confident. I need to do this because I have not had a platelet transfusion since being 17 and have no idea how I will respond. After the platelets I will have my normal IVIG infusion...after the hour blood test. Apparently IVIG infusions can also increase your platelet count falsely....so we need to do the platelet stuff because I infuse that so we have an accurate number. Then I should know how well I go that day. I pray so much that my body responds well and doesn't do any of that stuff that the doctor describes! That all sounds frightening. Then on the 21st...which is a Monday I will hopefully go in during the morning and have the transfusion about an hour or so before the surgery and have the surgery. I will be recovering in hospital for at least a week....depending on how well I go...may be another one. However, I may recover really well!
So I hope it all goes to plan!
This is the excitment in our lives so far. I will keep you all updated and try and update you all during the surgery (well not literally while I am asleep).
Ok, thanks for checking in and all your support!
On a social chat ...yesterday Alan, isaac and I went to the beach. We were there from about 1pm to 5.30pm. It was hot yet so nice at the beach. We took 2 umbrellas and our deck chairs to sit on and covered ourselves with so much sunscreen. The water was BEAUTIFUL!!!! I didn't want to get out. Isaac has really grown up and enjoyed the water. It was a calm day. We were on the perfect beach with had the surf life savers right near us and we swam within the flags....it wasn't the main beach so not many people were there. It was perfect!
Well better be off!
Love Charisse
So Friday I had my haematologist appointment. My platelet count needs "back up" for this surgery. It is a big surgery. I can handle smaller procedures and every day life with my platelet count but I really need help with this surgery. They will be cutting me open and it is not a small incision. I have been told it will be a reasonable size. I have only ever had one platelet transfusion in my life that I am aware of and it was when I was 17 years old. I had a reaction to the drug, quinine, and it knocked out my whole CBC count and I went into acute kidney failure. When I was 17 the platelets held well and I only had to have one.....in that instance my platelet count dropped from about 150 000 to only 8000. I remember my eyes haemorrhaging...interesting....got side tracked.
So I went to my haematologist and had convinced myself that it is ok that I need to have the platelets because I am not good with medical intervention and I become freaked out and upset that I need it. I even delayed surgery a while back because I couldn't cope with the idea of needing some platelets but got over that....still feel weird but it is ok and I am excited about the surgery because it means a lot. I went into the appointment feeling positive and my doctor...who has not seen me for about 12 months and is always telling me he never gets my bloods starts to tell me about how some people don't respond to platelet transfusions at all...and I could be that person....blah, blah, blah...and if this happens then everything that you have planned for this year is down the toilet and blah, blah, blah and am I prepared for this. He then said...doesn't matter how well I responded to the one when I was 17 ...because platelet eating antibodies may have developed over time and you may not respond and can't have surgery or do any of this other stuff. He then told me there was no reason to wonder this with my bloods because nothing tells him this but be prepared! I felt like he crushed my spirit altogether. I sat there, quietly, my heart pounding, dread building up and feeling like I was going to throw up. Some doctors can give you all the scenarios...both good and bad and seem like they are not crushing your hopes and dreams and your spirit...some just seem to have the knack to crush you. My other doctor who I miss SO MUCH was very good with chatting to me. He would tell me the good and what we have planned and what to expect and then he would tell me the odds of anything bad happening and then he would add....."however, let's deal with that if it happens and just focus on what we have planned right now"...and I would feel good and have hope. He even told me he never wanted me to have my hope crushed because how would I ever survive a life with FA if I had no hope or dreams. He was really good. This other doctor...he seems to forget all about that and just focus on the bad stuff....and there is not really anything exciting about FA to focus on! Let's face it.....bone marrow failure, pre-leukaemia, the expectation of how long your life will be once you get to my stage....cancers...blah, blah, blah...when a doctor decides to sit down and really tell you or remind you about FA....it is quite devastating. I told this doctor that I am always taking risks ....otherwise I would live in a box with FA and never have a life! He said that is true.....so instead of just asuming that I would go badly with a platelet transfusion like I felt he was saying....I will have all the HLA matching and blood grouping and all of that done tomorrow...I will even test for antibodies against platelets and my clotting ability and on Friday I will have a trial of how effective a platelet transfusion is for me. We will check how far the platelets rose an hour after and 24 hours after. That way when I go for my surgery we will know the timing of stuff and feel more confident. I need to do this because I have not had a platelet transfusion since being 17 and have no idea how I will respond. After the platelets I will have my normal IVIG infusion...after the hour blood test. Apparently IVIG infusions can also increase your platelet count falsely....so we need to do the platelet stuff because I infuse that so we have an accurate number. Then I should know how well I go that day. I pray so much that my body responds well and doesn't do any of that stuff that the doctor describes! That all sounds frightening. Then on the 21st...which is a Monday I will hopefully go in during the morning and have the transfusion about an hour or so before the surgery and have the surgery. I will be recovering in hospital for at least a week....depending on how well I go...may be another one. However, I may recover really well!
So I hope it all goes to plan!
This is the excitment in our lives so far. I will keep you all updated and try and update you all during the surgery (well not literally while I am asleep).
Ok, thanks for checking in and all your support!
On a social chat ...yesterday Alan, isaac and I went to the beach. We were there from about 1pm to 5.30pm. It was hot yet so nice at the beach. We took 2 umbrellas and our deck chairs to sit on and covered ourselves with so much sunscreen. The water was BEAUTIFUL!!!! I didn't want to get out. Isaac has really grown up and enjoyed the water. It was a calm day. We were on the perfect beach with had the surf life savers right near us and we swam within the flags....it wasn't the main beach so not many people were there. It was perfect!
Well better be off!
Love Charisse
Wednesday, January 2, 2008
2008 has Started!
Good Evening everyone!
well it is the end of the day.... the 2nd January here! I wanted to thank everyone for their support with my last post. I was feeling very emotional in my last post and I felt extremely encouraged with the response to the post...thanks to everyone who encouraged me by writing in my blog, sending me an email or talking to me via the phone. I really appreciate it. I love seeing messages in my blog. You can be guaranteed that I smile every time I see a new post in my blog!
How has the New year been for everyone? So far it has been enjoyable for me. On New Year's eve I felt totally exhausted and didn't feel like celebrating the New year in, however, we did go anyway. We went to some friends' house for dinner and then I stayed at their house while Alan and Isaac went to a practice at church for the service which was due to start at 9pm. I enjoyed watching some TV at my friends' house. Elton John was in concert and that was enjoyable. When his concert became a bit silly after a while..the film clips they were showing in the concert...I turned it over to watch another channel showing Sydney live by the Habour Bridge. They had Australian Idol performers singing which was enjoyable and they also had family fireworks at 9pm which I watched briefly until Alan, Isaac and I all left for church again. I found that time very relaxing. We got to church and it was good. Lots of dancing and singing. I actually lost my voice a couple of days earlier. I got heat stroke and threw up and that always burns my throat and I can't talk for numerous days after. I still can't talk properly. Anyway, so I couldn't sing. Isaac was playing with his toys and I couldn't stop the children at church being so interested in playing too. I got swamped! We have LOTS of children at church. Most of them are African because that is what our congregation is made up of mostly. I couldn't tell them to sit down because my voice wouldn't work properly above the music...so I eventually got hold of Alan and he put everyone (the children) straight. Eliana, my neice, was in her porta cot playing as well. On my lap or in my arms most of the time. This service started at 9pm and goes until after midnight. I mentioned that I was REALLY tired that night. We wanted to make sure I wouldn't get too exhausted after the 2am night we had on Christmas Night. We decided to take the grumpy children (Eliana and Isaac) for a ride in the car at about 10.45pm to see if they would fall asleep and when they did I felt like going home because I was tired. Alan and I took both Eliana and Isaac home (with permission from my sister of course) to sleep and we both celebrated the New Year in the car at midnight. It was relaxing once the kids were asleep and when we got home there were fireworks across from our house. I saw them. I don't know if Alan saw them. He was opening the house up and stuff. We put the kids in their beds and were hungry...had something to eat and I got ready for bed. My sister came and picked up Eliana about 1am and I went to sleep shortly after. I had a good sleep and have felt much better since. I am obviously now recovering from Christmas!
On New Year's Day we went to mum and dads with Liesl, Tim and Eliana and we ALL swam in mum and dad's pool. Isaac swam all day! Ha! He slept well that night! It has been REALLY hot here. It has been equivalent to 103 to 104 F ....for those who think in Celcius like we do..... it has been 42 to 43 degreess C...today was a little cooler...hehe..... 33 degrees celcius. Isaac's bathers had a whole in the bottom...hehe...so today we went out and bought him some new bathers. We also bought him a booster seat with some Christmas money for our family. Isaac is still quite short so we got him an adjustable thingy (I know....good choice of words)....to hold his seatbelt in place because he gets caught on the neck. He is now the suitable weight for the booster seat. We thought we should get one because he has reached the weight level but mostly because he is going to school this year and want him to graduate to a big boy seat rather than be in the baby seat when he makes friends and stuff. Right now...he doesn't want a bar of this new seat! He wants his old ones. We are in no hurry. He is still a little guy and will benefit from remaining in the baby child seat for a little longer. The heavier he is for the booster...the safer it is for him.
Today we ran into the Palmers at the shops. They are an FA family who live close to us. I know she won't mind me mentioning. They have a little girl who is turning 7 this year and she has FA. They went through transplant last year and she is doing very well. Her hair used to be long and straight and it is now short and curly...growing back...very cute. I hardly recognised her! It is so weird, here in Australia....just "running into" another FA family at the shops. It is so strange standing there at the shops and knowing that their little girl standing right next to me has FA....cause it is so rare and in Australia you don't just come across people like that and if you do you don't really know it! She was so sweet. It must be amazing to the parents to see us two standing together.......a child with FA and then an adult with FA with her own child. Hehe. I find it amazing! And fun to be "alike"...not that I like FA....but her and I are "like" each other. Not often that you can brag that to someone else. We were really excited to see this family!
Isaac talked to his best friend from kindy....Emily. They had a brief conversation on the phone today. It was cute. We are hoping to have a play date for them in the next week or so. Isaac has still had a dummy (pacifier) when he is sleeping and he agreed that after Christmas we would post his dummy to Emily's baby sister to keep. The baby doesn't use it but at least it is a good exercise for Isaac. He chose to post it. We took the Christmas Tree down today and so tomorrow is the BIG day! I wonder how it will go. We will post it in a nice box with tissue paper and stuff and Isaac will have his first entire night without it tomorrow night....I AM a little nervous...I don't want him crying for it. He still has his snuggly though and I don't mind how long her has his snuggly for. That is his security blanket that he has had since being a baby.
Today I had my blood taken for a CBC. I am now starting to prep for my surgery....bloods and stuff...haematologist appointments and pre-anaethetic. I am preparing. It is on the 21st still! I will keep you all updated.
I rang work today. I always become so worried that they would terminate my nursing employment with the hospital because of the amount of time I have to take off in huge blocks. I have not worked since I had pneumonia and then when I recovered and said I was available work quietened down and I got no relief shifts. Now I am having surgery on the 21st and will need a couple of months to recover...more time off work. Today I spoke to them and said I must have some shifts this month before that and reminded them of my condition and how it is difficult to get shifts imbetween procedures and stuff. They put me through to the booking center and said that they understood and because I am one of their own...they want to take care of everything and will get back to me tomorrow with "booked shifts!"...about time. Not just relief shifts but actual booked shifts. I need them to keep my confidence at work! I was very grateful. They also reassured me that I need not worry about my employment being terminated and that they totally understand my health situation.....what an understanding work! What a relief!
Ok, I have written a LOT! Thanks for reading. Now you all know what has been happening and I will keep you all updated!
Lots of love,
Charisse
well it is the end of the day.... the 2nd January here! I wanted to thank everyone for their support with my last post. I was feeling very emotional in my last post and I felt extremely encouraged with the response to the post...thanks to everyone who encouraged me by writing in my blog, sending me an email or talking to me via the phone. I really appreciate it. I love seeing messages in my blog. You can be guaranteed that I smile every time I see a new post in my blog!
How has the New year been for everyone? So far it has been enjoyable for me. On New Year's eve I felt totally exhausted and didn't feel like celebrating the New year in, however, we did go anyway. We went to some friends' house for dinner and then I stayed at their house while Alan and Isaac went to a practice at church for the service which was due to start at 9pm. I enjoyed watching some TV at my friends' house. Elton John was in concert and that was enjoyable. When his concert became a bit silly after a while..the film clips they were showing in the concert...I turned it over to watch another channel showing Sydney live by the Habour Bridge. They had Australian Idol performers singing which was enjoyable and they also had family fireworks at 9pm which I watched briefly until Alan, Isaac and I all left for church again. I found that time very relaxing. We got to church and it was good. Lots of dancing and singing. I actually lost my voice a couple of days earlier. I got heat stroke and threw up and that always burns my throat and I can't talk for numerous days after. I still can't talk properly. Anyway, so I couldn't sing. Isaac was playing with his toys and I couldn't stop the children at church being so interested in playing too. I got swamped! We have LOTS of children at church. Most of them are African because that is what our congregation is made up of mostly. I couldn't tell them to sit down because my voice wouldn't work properly above the music...so I eventually got hold of Alan and he put everyone (the children) straight. Eliana, my neice, was in her porta cot playing as well. On my lap or in my arms most of the time. This service started at 9pm and goes until after midnight. I mentioned that I was REALLY tired that night. We wanted to make sure I wouldn't get too exhausted after the 2am night we had on Christmas Night. We decided to take the grumpy children (Eliana and Isaac) for a ride in the car at about 10.45pm to see if they would fall asleep and when they did I felt like going home because I was tired. Alan and I took both Eliana and Isaac home (with permission from my sister of course) to sleep and we both celebrated the New Year in the car at midnight. It was relaxing once the kids were asleep and when we got home there were fireworks across from our house. I saw them. I don't know if Alan saw them. He was opening the house up and stuff. We put the kids in their beds and were hungry...had something to eat and I got ready for bed. My sister came and picked up Eliana about 1am and I went to sleep shortly after. I had a good sleep and have felt much better since. I am obviously now recovering from Christmas!
On New Year's Day we went to mum and dads with Liesl, Tim and Eliana and we ALL swam in mum and dad's pool. Isaac swam all day! Ha! He slept well that night! It has been REALLY hot here. It has been equivalent to 103 to 104 F ....for those who think in Celcius like we do..... it has been 42 to 43 degreess C...today was a little cooler...hehe..... 33 degrees celcius. Isaac's bathers had a whole in the bottom...hehe...so today we went out and bought him some new bathers. We also bought him a booster seat with some Christmas money for our family. Isaac is still quite short so we got him an adjustable thingy (I know....good choice of words)....to hold his seatbelt in place because he gets caught on the neck. He is now the suitable weight for the booster seat. We thought we should get one because he has reached the weight level but mostly because he is going to school this year and want him to graduate to a big boy seat rather than be in the baby seat when he makes friends and stuff. Right now...he doesn't want a bar of this new seat! He wants his old ones. We are in no hurry. He is still a little guy and will benefit from remaining in the baby child seat for a little longer. The heavier he is for the booster...the safer it is for him.
Today we ran into the Palmers at the shops. They are an FA family who live close to us. I know she won't mind me mentioning. They have a little girl who is turning 7 this year and she has FA. They went through transplant last year and she is doing very well. Her hair used to be long and straight and it is now short and curly...growing back...very cute. I hardly recognised her! It is so weird, here in Australia....just "running into" another FA family at the shops. It is so strange standing there at the shops and knowing that their little girl standing right next to me has FA....cause it is so rare and in Australia you don't just come across people like that and if you do you don't really know it! She was so sweet. It must be amazing to the parents to see us two standing together.......a child with FA and then an adult with FA with her own child. Hehe. I find it amazing! And fun to be "alike"...not that I like FA....but her and I are "like" each other. Not often that you can brag that to someone else. We were really excited to see this family!
Isaac talked to his best friend from kindy....Emily. They had a brief conversation on the phone today. It was cute. We are hoping to have a play date for them in the next week or so. Isaac has still had a dummy (pacifier) when he is sleeping and he agreed that after Christmas we would post his dummy to Emily's baby sister to keep. The baby doesn't use it but at least it is a good exercise for Isaac. He chose to post it. We took the Christmas Tree down today and so tomorrow is the BIG day! I wonder how it will go. We will post it in a nice box with tissue paper and stuff and Isaac will have his first entire night without it tomorrow night....I AM a little nervous...I don't want him crying for it. He still has his snuggly though and I don't mind how long her has his snuggly for. That is his security blanket that he has had since being a baby.
Today I had my blood taken for a CBC. I am now starting to prep for my surgery....bloods and stuff...haematologist appointments and pre-anaethetic. I am preparing. It is on the 21st still! I will keep you all updated.
I rang work today. I always become so worried that they would terminate my nursing employment with the hospital because of the amount of time I have to take off in huge blocks. I have not worked since I had pneumonia and then when I recovered and said I was available work quietened down and I got no relief shifts. Now I am having surgery on the 21st and will need a couple of months to recover...more time off work. Today I spoke to them and said I must have some shifts this month before that and reminded them of my condition and how it is difficult to get shifts imbetween procedures and stuff. They put me through to the booking center and said that they understood and because I am one of their own...they want to take care of everything and will get back to me tomorrow with "booked shifts!"...about time. Not just relief shifts but actual booked shifts. I need them to keep my confidence at work! I was very grateful. They also reassured me that I need not worry about my employment being terminated and that they totally understand my health situation.....what an understanding work! What a relief!
Ok, I have written a LOT! Thanks for reading. Now you all know what has been happening and I will keep you all updated!
Lots of love,
Charisse
Subscribe to:
Posts (Atom)