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I had my splenectomy

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15 years 6 months ago #1863 by Katie
I had my splenectomy was created by Katie
It has been a couple of months since I have posted, but after 14 months of ITP I decided I was done. My count was at 66k the day I had surgery (thanks to 4 days of pred). The next day 140k, then 280k, then 440k upon discharge. I go Monday for a follow up CBC to see where I am at. I am nervous to see if this holds. I can't imagine going through it for nothing!
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15 years 6 months ago #1870 by Joya
Replied by Joya on topic Re:I had my splenectomy
wow I really hope you get good results!!

Did you go threw a lot of pain after the surgery?!

I'll keep my fingers crossed for you on monday!
Xx
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15 years 6 months ago #1897 by server
Replied by server on topic Re:I had my splenectomy
Hello Katie. My best friend's name is Katie :)
Glad to hear about your counts. Can't wait to hear the results from Monday.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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15 years 6 months ago #1898 by FranL
Replied by FranL on topic Re:I had my splenectomy
My splenectomy is set for March 23rd...Tuesday! I'm a bit freaked. I've had ITP for 13 years and always knew it would come to this point eventually. But never had any surgery before so I'm still a bit scared.

Glad you had good results! Best of luck!!!

Fran
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15 years 6 months ago #1935 by ddunn
Replied by ddunn on topic Re:I had my splenectomy
Fran, good luck with your surgery Tuesday. I will be thinking about you. Please post or send me an email when you are up to it. I am soooo hoping this is going to do the trick for you!!!!!!!!!
Denise
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15 years 6 months ago #1936 by ddunn
Replied by ddunn on topic Re: I had my splenectomy
Please post with your results!!! good luck!!
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15 years 6 months ago #1954 by riggstr
Replied by riggstr on topic Re:I had my splenectomy
Good Luck........Fingers Crossed
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15 years 6 months ago #1963 by tortie
Replied by tortie on topic Re:I had my splenectomy
How are you feeling? Don't forget to check back every month for awhile. I'm also on the list waiting for my surgery. Wouldn't it be nice to not have to worry about counts anymore!!!!!!

Best wishes for success,

Michelle
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15 years 6 months ago #2014 by FranL
Replied by FranL on topic Re:I had my splenectomy
Went for my pre-op stuff today. Chest x-ray looked good, ekg normal, platelet count of 41.000. Then my surgeon decides my platelets are too low for surgery. He wants me to do a round or two of IVIG to boost them then come back nextTuesday for surgery if my counts get to 50,000 or better. I was VERY frustrated with him. My counts were 31,000 last week and he could have easily planned the IVIG then and kept my surgery date in tact. Now I'm rearranging all my plans. I should think that all things happen when they are supposed to but I'm feeling frustrated instead.
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15 years 6 months ago #2020 by Joya
Replied by Joya on topic Re:I had my splenectomy
Fingers crossed they'll be up on tuesday!!
Good luck!
Xx
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15 years 6 months ago #2042 by Katie
Replied by Katie on topic Re:I had my splenectomy
Well, my counts are over a million! My hema wants to watch and wait, but my surgeon doesn't think that is safe. He called a hema that he knows and they want to put me on agrylin. I am supposed to go back in a week and get a cbc. Oh, the rollercoaster!

I am feeling better, I just had to get through the 1st five days.

Thanks for asking everyone and if anyone has questions about what to expect I will be happy to share my experience.
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15 years 6 months ago #2066 by Bunnie
Replied by Bunnie on topic Re:I had my splenectomy
Seems a little fast to rush to agryln unless your having lots of pain in the small capillaries of your hands and feet. Maybe they are worried about clotting at the incision sites. Seems to me that we've seen many posters have initial high counts and then stablize.

With my sister, after her spleenectomy, they started with asprin and a wait and see period before they went to the thrombocytosis drugs. Her spleenectomy was not ITP related, it had enlarged until it was at risk of bursting. She has a myloprolific bone marrow disorder and post-speenectomy does have to take the anti-platelet drugs and walks a fine line in dosage to keeps her in "normal" range.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra
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15 years 6 months ago #2074 by BethF
Replied by BethF on topic Re:I had my splenectomy
Katie,
I would love to hear your experience - primarily recovery. How did you feel just after surgery, how long before you get back to "normal" activities, etc.? We have talked about splenectomy several times over the years for my son but have never taken the plunge. It's always in the back of our minds, so is helpful to hear of other experiences.

I hope your platelet count gets under control soon. Good luck!

Beth - mom to Brady (age 13, diagnosed 1/18/02 last WinRho treatment Dec.'08)
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)
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15 years 6 months ago #2075 by Katie
Replied by Katie on topic Re:I had my splenectomy
Bunnie- I agree with you, the agrylin seems a bit rushed. I think I am going to go with my hema and take the wait and watch approach even though it is a little scary to be this high, I am NOT used to this!

Beth,
Immediatley after surgery and the 2 days following were the worst. It is the gas pains that got me, those could not be helped by pain medication. I can't take morphine and was told that demerol is not as effective. I could get out of the bed by myself and move around pretty well about 4-5 days later. One week afterwards I was mostly pain free but could not lift anything. I have been told that 2 weeks after surgery I can return to life as normal. I had my surgery 12 days ago and it still hurts to bend over and sneeze, but it is tolerable. I have not taken pain killers in a week. Good luck to you and your son.
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15 years 6 months ago #2081 by Bunnie
Replied by Bunnie on topic Re:I had my splenectomy
Good news is that these counts you could take ibuprophen or asprin for the minor pains. The asprin may even help until the counts stablize downward.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra
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15 years 6 months ago #2094 by hdlorider
Replied by hdlorider on topic Re: I had my splenectomy
I had a spleenectomy in 1982 and, by the grace of God, my count has remained high ever since. Best of luck.
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15 years 6 months ago #2368 by tortie
Replied by tortie on topic Re: I had my splenectomy
Katie, did they do laporoscopy? I hope you start feeling better.

I enjoyed the morphine 2 years ago and I hope at least I'll have that again this time.
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15 years 6 months ago #2386 by Katie
Replied by Katie on topic Re:I had my splenectomy
Yes, my surgery was a laprascopy procedure. My pain was so bad because I had zero pain killers the next day. Can't do morphine and they turned the demerol drip off because it barely did anything. The recovery is pretty quick. My surgery was 2 weeks ago and today I was carrying around my 22 pound daughter and walking up stairs. I would not have thought I could do that 2 weeks ago.
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15 years 6 months ago #2395 by farida
Replied by farida on topic Re:I had my splenectomy
my son will do the surgery when his platelets dropped againe , he was in the hospital 2 weeks ago with platelets 4k, and got ivig his platelets was 237k last week and today its 137k which dropped almost 100k in one week , so sad , anyway my son refused to take the predinsone , the proplem is he is senior high school and has some ap test he has to finish them, so i had to wait until the end of may, but i know for sure his platelets its not going to be in safe count until may, while my son refused to take predinsone , so i don't know what can i do , and im warry to do the surgery with low count ,because the doctor told him he can do it even if the platelets 2k and give him paltelts transfusion, what about that , how come, i don't know , im so worry , i knew that the surgery will take around one and half hour , and i hope it will give him remmison , im about to lose my mind
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15 years 6 months ago #2459 by tortie
Replied by tortie on topic Re:I had my splenectomy
Farida: he can have IVIG or possibly Anti D in the meantime. I would recommend this instead of platelet transfusion for surgery.

Katie: so glad to hear that you're on the mend.
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15 years 6 months ago #2531 by Katie
Replied by Katie on topic Re:I had my splenectomy
Farida: If the surgery were to be lapropscopic, it may not take an hour and a half. Mine only took 40 minutes. I hate prednisone, I actually cried when I had to take it before surgey, but it got my counts from 14 to 66,000 in days. Becuase of that I did not have receive platelets during surgery. Will your son not take steroids becuase he can't tolerate them, or does he hate the side effects? If splenectomy is the route he has to take, hopefully the surgery and recovery won't take that long.
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15 years 6 months ago #2539 by farida
Replied by farida on topic Re:I had my splenectomy
my son hate prednison because , his blood suger became heigh , they started giving him ansuline when his blood suger over 200 but his blood suger now in the normal count thank god , so predinsone it's not good option for him,beside the other side efficts , so my son hate everything around him when he was on predinsone , we couldn't convience him just to contunio taking predinsone until he finshed his final and do the surgrey , he told his doctor no predinsone , so his count dropping now i don't thing it will be up until may/24 . i will discuss the other options with his doctor , i will refused the poatelets transfusion unless is somthing happend during the surgery , his doctor said that the operation time is one hour and half , i hope its 40 min , thank you for your replies , pray form him
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15 years 6 months ago #2546 by CindyL
Replied by CindyL on topic Re:I had my splenectomy
My surgery took 3 hours. The surgeon had booked the OR for 2, but because I am a big woman, he ran into trouble and actually thought he was going to have to open me up. Thankfully, he didn't have to. I went home the day after surgery.

When I was prepping for mine, I did 3 days of IVIG. That brought my counts up enough for the surgery. My surgeon doesn't keep platelets on hand in the OR.

Good luck to both of you in your surgeries.
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15 years 6 months ago #2553 by Katie
Replied by Katie on topic Re:I had my splenectomy
Farida,
I will pray for you and him!
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15 years 6 months ago #2944 by FranL
Replied by FranL on topic Re:I had my splenectomy
I'm continuing to do well...a little better each day. Movement is easier but still slow. I have a concern though...no bowel movement yet. 8 days! I have gas and no pain. I'm eating fiber rich things, took a laxative, drinking water, walking. No results. I see the surgeon tomorrow so I'll get his input. How long were you without bowel movements after surgery?
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15 years 5 months ago #2989 by FranL
Replied by FranL on topic Re:I had my splenectomy
I knew as soon as I posted my last post things would improve. This morning...bowel movement finally! All is well after all :) Go for my follow up with my surgeon today. I know all is better...I feel so much better!
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