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