My visit with the paed surgeon went very well. He is really nice and reminds me of my haematologist who went to Canada a while back.....who is back in Australia, Adelaide, next month! Yay! Anyway........got side tracked!
The surgeon is real nice and gave me all the risks and benefits of the surgery. He actually said that he has done this so many times he couldn't count! Ha.....he says he does both babies and people around my age and that the bigger the person is the easier it is to insert the infusa port. I think the adult surgeon just had no idea. Alan said when he rang to cancel the surgery with them, they were relieved. So I think they just didn't know. The paed surg said there were no extra risks than normal surgery.
So I will now get the port done on Friday the 16th January. It is nice that I am not having it before Christmas. Surgery will happen as scheduled unless there is a reason that pops up that delays it :-)
Thanks for your support and prayer.
Love Charisse
Monday, December 8, 2008
Wednesday, December 3, 2008
Surgical Update!
Hello All,
I thought I would update you on the abdo port surgery. We managed to get hold of the haematologists at the women's and children's hospital where I was diagnosed with FA and spent most of my "medical life". We also have good contacts there with Fanconi Anaemia Australia and the doctors. They recommended a Private Paed Surgeon to me. It just happened to be the first paed surgeon who my adult oncologist recommended for the abdo port in the first place. What happened was...the adult secretary rang to book me in with the paed secretary and they asked my age and since it was 30 they closed the door right there. This was a couple of weeks ago.
Isn't it always the way that if you do the ring around yourself you always get a bit further with the doctors? Alan is a good ring a rounderer (I know, not a word :-) ).
Anyway, so this is the same paed surg. However, Alan rang and told the secretary who we are and all about the port issue and she was very compassionate and understanding. The paed surg got in contact with Alan this afternoon and said that he is happy to do the surgery on me and insert the abdo port. He does it all the time and it isn't complicated! He said I can have it where ever I want, as long as there is some rib there to anchor it! This is great news. Alan says he sounds very nice. He knows what he is doing and it is no problems. So he told Alan what to say to the other adult surgeon when he rang ton cancel that surgery. I really wanted that other surgeon to know how he had made me feel. I think he will understand how I felt with the change in doctor . For the sake of the adult surgeon too.....if he is not certain about the surgery then it is best that he doesn't try it. I know that he is apparently the best adult surg but he didn't make me feel very comfortable. I am sure he could do the surgery but I think it is better to go to the paed surgeon who is a pro at doing these ports....and my age doesn't matter! Yay! I am feeling much better about this.
So tomorrow at 2.15pm I meet this paed surgeon and find out my new surgery date! Praise the Lord!
Love ya all,
Charisse
I thought I would update you on the abdo port surgery. We managed to get hold of the haematologists at the women's and children's hospital where I was diagnosed with FA and spent most of my "medical life". We also have good contacts there with Fanconi Anaemia Australia and the doctors. They recommended a Private Paed Surgeon to me. It just happened to be the first paed surgeon who my adult oncologist recommended for the abdo port in the first place. What happened was...the adult secretary rang to book me in with the paed secretary and they asked my age and since it was 30 they closed the door right there. This was a couple of weeks ago.
Isn't it always the way that if you do the ring around yourself you always get a bit further with the doctors? Alan is a good ring a rounderer (I know, not a word :-) ).
Anyway, so this is the same paed surg. However, Alan rang and told the secretary who we are and all about the port issue and she was very compassionate and understanding. The paed surg got in contact with Alan this afternoon and said that he is happy to do the surgery on me and insert the abdo port. He does it all the time and it isn't complicated! He said I can have it where ever I want, as long as there is some rib there to anchor it! This is great news. Alan says he sounds very nice. He knows what he is doing and it is no problems. So he told Alan what to say to the other adult surgeon when he rang ton cancel that surgery. I really wanted that other surgeon to know how he had made me feel. I think he will understand how I felt with the change in doctor . For the sake of the adult surgeon too.....if he is not certain about the surgery then it is best that he doesn't try it. I know that he is apparently the best adult surg but he didn't make me feel very comfortable. I am sure he could do the surgery but I think it is better to go to the paed surgeon who is a pro at doing these ports....and my age doesn't matter! Yay! I am feeling much better about this.
So tomorrow at 2.15pm I meet this paed surgeon and find out my new surgery date! Praise the Lord!
Love ya all,
Charisse
Tuesday, December 2, 2008
Surgery and The Christmas Pageant!
Hello All,
I have not updated in a while. I just didn't have the time. I wanted to show you some pictures and a small video of our Christmas Pageant over here in Australia. This was actually way back on the 8th of November which was Isaac's birthday. We don't have Thanksgiving here in Australia. Some people may wonder why I mentioned that. There are many people who wish me Thanksgiving who seem to have no idea! Ha! The history behind Thanksgiving has nothing to do with our country, hence, why we don't have it! We have the Christmas Pageant instead....not a Thanksgiving Parade :-) So before I hit the pillow I wanted to show you some pictures. I have not included all the pictures but I thought it would be fun for you guys to see some Australian Floats in our Christmas Pageant. We still have all the presents and snow (I know that amuses a lot of people since we have a hot Christmas). We have toys and clowns and fairy tales and so on....lots of music and dancing. However, thought I would post mainly our Australian Floats for something different. Below is a fun float though :-)
Obviously, this is a Kangaroo! Hehe. It has Aboriginal Art all over it which is pretty cool! It was raining on this day.
Once a Jolly Swagman camped by a Billabong, under the shade of a Billabong Tree...........hehe.....Waltzing Matilda, Waltzing Matilda............
Australian Cricket! Haha!
This isn't overly Australian..... adults with Down Syndrome get to be on a float and wave. I think it is great!
Of course....the good, old, Christmas Stocking! I remember it from when I was a child! That means that Santa will be here soon! I have no more Australian Floats posted by the way :-)
The Toy Train! Isaac LOVED this train since he is CRAZY about any train! Santa is almost here!
Hmmm......One of the little princesses and people will think I am SO strange as I can't remember the name of the horse who is quite well known in Santa's Castle and in the pageant!
I am disappointed with this photo of Santa and his sleigh! I couldn't get close enough with the crowd and it is a let down but oh well.....Santa is here! Hehe .....Isaac waved and was very happy!
So that ais a bit from our pageant! Oh yes, down below is a small video I took during the pageant. I like watching it. I don't know if it is majorly interesting but it is fun to watch it over and over again.....hehe...just cause I want to....hee. Enjoy the music and the clowns and some of our other floats! Click twice for it to work faster!
I have not updated in a while. I just didn't have the time. I wanted to show you some pictures and a small video of our Christmas Pageant over here in Australia. This was actually way back on the 8th of November which was Isaac's birthday. We don't have Thanksgiving here in Australia. Some people may wonder why I mentioned that. There are many people who wish me Thanksgiving who seem to have no idea! Ha! The history behind Thanksgiving has nothing to do with our country, hence, why we don't have it! We have the Christmas Pageant instead....not a Thanksgiving Parade :-) So before I hit the pillow I wanted to show you some pictures. I have not included all the pictures but I thought it would be fun for you guys to see some Australian Floats in our Christmas Pageant. We still have all the presents and snow (I know that amuses a lot of people since we have a hot Christmas). We have toys and clowns and fairy tales and so on....lots of music and dancing. However, thought I would post mainly our Australian Floats for something different. Below is a fun float though :-)
Obviously, this is a Kangaroo! Hehe. It has Aboriginal Art all over it which is pretty cool! It was raining on this day.
Once a Jolly Swagman camped by a Billabong, under the shade of a Billabong Tree...........hehe.....Waltzing Matilda, Waltzing Matilda............
Australian Cricket! Haha!
This isn't overly Australian..... adults with Down Syndrome get to be on a float and wave. I think it is great!
Of course....the good, old, Christmas Stocking! I remember it from when I was a child! That means that Santa will be here soon! I have no more Australian Floats posted by the way :-)
The Toy Train! Isaac LOVED this train since he is CRAZY about any train! Santa is almost here!
Hmmm......One of the little princesses and people will think I am SO strange as I can't remember the name of the horse who is quite well known in Santa's Castle and in the pageant!
I am disappointed with this photo of Santa and his sleigh! I couldn't get close enough with the crowd and it is a let down but oh well.....Santa is here! Hehe .....Isaac waved and was very happy!
So that ais a bit from our pageant! Oh yes, down below is a small video I took during the pageant. I like watching it. I don't know if it is majorly interesting but it is fun to watch it over and over again.....hehe...just cause I want to....hee. Enjoy the music and the clowns and some of our other floats! Click twice for it to work faster!
Down to other business....look at the time I need to get in bed! Ahhhhh. On the 9th of December I am having an abdominal infusa port put in to help with my IVIG. It has taken me forever to decide. I am REALLY uncomfortable with having a port in my chest. I know that some people will not understand that. As an FA adult I am trying to live my life without the impact of FA on me all the time. While the port is under the skin the pump is clearly visible if I wear certain clothes or swim or anything and I crave to be as normal as possible. Living as normally as possible in both physical and emotional sense helps me fight FA. This is important to me. I had a visit with the surgeon and some surgeons can be SO arrogant. Paediatric surgeons commonly put these type of infusa ports in the abdomin of a child and even up to 21 years of age but I was refused to see one because I am 30. So I was sent to an adult surgeon who is the BEST.....however, after seeing him today I am not too sure about wanting him to operate. I am doing more research and calling paed surgeons myself. He was unsure about putting it in the abdomin and after talking to me about the increased risks of doing that as opposed to a simple chest one he said, "I was hoping that all those extra risks would make you change your mind". I won't be scared into having something I so dearly do not want. It will only make me unhappy. I have no peace and I work on how I have peace about something even if I am frightened.....the peace that God gives me about stuff helps me to make decisions. I don't even want this abdo one but I am compromising and I feel a certain peace about it....enough to go ahead. I asked this surgeon to get hold of a paed and discuss how they do the surgery since he has not done one here since the 80's he told me.........even though he is very good. He actually right out refused! I find that arrogant. You don't scare a patient into having something your own way....the patient has to be comfortable. I know as a nurse....you do not scare a patient into anything. He was very bold. He was nice and we had a professional discussion but he was bold. I appreciated him saying, "to be honest, I don't know if I want to do this surgery".....when I asked him what he was thinking in his head and not saying. I said that I appreciated what he just said....and it is important he tells the truth but when I started to say that I want to ring a paed surgeon about it and he didn't......well I was uncertain as to whether he is the best surgeon for my port. I want someone who is sure of what they are doing....and won't compromise on my health care because he thinks something different. I was a bit discouraged when he said that his success rates for port is 95% and his complication rate is only 5% with surgery and by doing mine he didn't want to mess up his record. That attitude made me feel a bit upset. If he is that good,.....I am sure even though there is a risk of increased infection during the procedure.....because they have to track it up the vein further from the abdo.....I am sure he could do a good job. Is he not wanting to do it because he feels uncomfortable and unsure of how.....or is it because he doesn't want to mess his record if something happens differently to what he is used to.....does he care why that site is being chosen? It concerns me. He is VERY nice but he was also very interesting and a bit arrogant and I think the fact that I am a nurse scared him a bit because I know what terms he is using and asked more detailed questions. So tomorrow we are talking to a paed surgeon about the risks and why do they have no issues with putting this type of port in.........and they do it on bigger people too......I will work out if this excellent surgeon I saw is the best for me and I will make the decision in the next 2 days! He said, "call me by Friday and let me know what you found out.....what you decide"....don't you think this surgeon should be "finding out himself" if he is unsure and asking me if I knew how a paed does it for them to be so comfortable with the procedure.....interesting. I came out not wanting the port at all! *sigh* I will update you as to whether I still go ahead on Monday!
Ok, I need to go to bed. Could use some encouragement!
Oh my Christian Conference was SO great! Jesus is the Mighty, Mighty God and He reminded me of that at this conference. He showed me His power and His love and His grace! I was covered in the Power of God and not afraid to say so. I love Jesus with all my heart as my Lord and Saviour and my God and I am SO proud of accepting Him as My Jesus in my heart when I was 5 years old......I have NEVER turned back and I never want to. He encourages me with my walk with FA. He gives me strength! I am thankful that I know Jesus.
Ok, bed!
Love Charisse
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