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Questions about surgery

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2 years 21 hours ago #72318 by joanne6705
Questions about surgery was created by joanne6705
Having a hysterectomy next month because of heavy bleeding.  I am going the larscopic route and was surprised at how quickly they have you leave the hospital (same day?).  My concern is post op bleeding that starts suddenly and now im 50 minutes from the hospital.  Is there any med I can ask my hema to put it me on to keep my platelets in a high range for recovery?  I took dex for 4 days platelets shot up to 173 which i haven't seen in twenty years.  The following weekly check in i was at 41.  I need 80 to get through this surgery and figure the dex should help with this but what about afterwards?  Just looking for any info anyone has.  Not sure how many dex things you can do in a row, etc.  I am one scared person to do this but I don't have a life otherwise.  Always home in case the vicious bleeding starts.  It takes 7 plus hours to stop it using 4 birth control pills feet up, sick to stomach, not fun.  Cancer doctor says im not likely to get any relief with menopause because my episodes don't seem to follow a cycle.  Regular gyno said no to surgery, and referred me to a cancer gyno doctor after repeated failures of the birth control. The emergency dept said i had to come when i'm about to pass out not sooner, but my gyno said when the heavy bleeding starts I need to go to the emergency room because my platelets flux and she has no way of knowing where I'm at.  Talk about confusing and not knowing what to do while being scared of your own body. THANK YOU for any input/success with this.

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1 year 11 months ago #72323 by MelA
Replied by MelA on topic Questions about surgery
joanne I'm so sorry you are having to go through this - of course I'd be concerned too.  Can't you talk to your hematologist about this - about what will be done in order to bring your count up to the 80k required for the surgery and what to do after??  Is your hematologist in touch with your surgeon??   I wouldn't be happy with an ED telling me not to come in unless I'm about to pass out - what if I'm alone, do I drive in when I'm about to pass out?  That just doesn't make sense.  

Good luck to you - keep us posted.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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1 year 11 months ago #72324 by joanne6705
Replied by joanne6705 on topic Questions about surgery
Yes, My hema is in touch with the surgeon.  I'm starting prednisone and lots of blood test prior to the date to see how it's going.  The hema will taper during my recovery which sounds good.  I was reaching out because who better to ask than the folks who have my disease and might have some experience with how to successfully deal with surgery.  I'm going to try to stay for the first night.  Not wild about having my body rearranged and then sent home.  My hema tells me blood vessels heal within the first 24 hours so it seems reasonable to keep someone overnight who has a blood disorder.  Thanks for your kind words.  This is a very lonely disease and hard to cope with emotionally at times.  

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1 year 11 months ago #72326 by MelA
Replied by MelA on topic Questions about surgery
joanne I'm glad that you called ITP a blood disorder and not "my disease" again - we aren't diseased :) we have a blood disorder.   And to be honest with you any disorder/disease is lonely unless you have someone in the same boat to talk to - it is good to have this group to discuss things with!   I'm also glad your hematologist & surgeon are communicating, that is really good - so many don't have their hematologist in communication with their other specialists.  It sounds like things are going as they should. 

The only surgery I've had since diagnosis in 1989 has been 2 total knee replacements, basal joint surgery on each thumb, a tumor removal, surgery on a tooth root thanks to an instrument breaking off inside it when having a root canal. 

Keep positive and I pray all goes well for you !

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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4 months 1 week ago #73419 by joanne6705
Replied by joanne6705 on topic Questions about surgery
Thanks for your kind words, I refer to my self as diseased because I have Graves Disease which is another auto immune.  I also have allergies and they too referred to me as a diseased person because of it. But you are correct that ITP is a blood disorder, I just lump them all together.  My surgery went well but boy is it scary with this problem. Just want to update that.

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4 months 1 week ago #73421 by MelA
Replied by MelA on topic Questions about surgery
Well it is good to see you Joanne and to know your surgery went well!!
I too have Graves - small world huh?!  But I still don't consider myself diseased :)
How is your platelet count doing?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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4 months 1 week ago #73422 by joanne6705
Replied by joanne6705 on topic Questions about surgery
My platelet count is stable.  It has been running in the 50k area.  So far the only way I can move the needle is to add a good amount of fresh vitamin c foods to my diet.  My body responds to this despite being told I don't have vitamin c def.  My dad had all of my food allergies and he had shellfish as well.  He got iron shots because he did present with anemia.  My dad's fruits were green grapes and pears.  I never saw him put an orange to his mouth.  He had a rigid diet, creature of of habit and I guess I'm like him too.  If the food works why change it?  I saw my bruises on my arm fade if I consume fresh fruit and raw bell peppers but it wasn't the same when I froze it.  My husband went and bought a ton of fresh fruit but I told him it will go bad so we froze it.  I have a vitamix blender so this was a no brainer.  Now I know better and I do frequent the grocery store and buy it fresh.  I make my own coconut milk and blend everything so I'm not complaining I have to drink this to gain platelets, it's delish!  It may not cure me but it's the only thing that's worked.  I've tested it many times and sure enough I start heading in the right direction.  Time will tell if I continue to improve.  I posted this under natural healing section in case someone else responds this way.  I went from 64k(nov 30) to 86K(dec 13) in a 13 day period, I'll take it!  I knew it worked right after my blood draw because I didn't get the immediate bruising, yay!  I hope you are feeling well too :)

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4 months 2 days ago #73440 by MelA
Replied by MelA on topic Questions about surgery
Coconut milk or coconut water?  I like coconut water but don't drink it daily.  I hope your fresh vitamin C foods continue to work for you, seems to be the trick for you!   It is nice to have a stable count!

Thank you, I am doing well & have a steady count too.  What was crazy was baby aspirin after knee replacement brought my count into the normal range, didn't stay there through.  

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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3 months 2 weeks ago #73461 by joanne6705
Replied by joanne6705 on topic Questions about surgery
I make coconut milk because I'm allergic to cow's milk and don't want to get my immune system grumpy.  I don't have an intense allergy so I am able to consume it in a pinch if there is nothing else available but I do make an effort not to consume my allergy foods.  I drink 1/4 c of coconut milk with a cara cara orange, 1 c cantelope and a frozen banana daily.  If I don't have time to make the milk as its a two hour sit and wait then I buy a can of coconut milk and dilute it with water to lower the fat content.  My smoothies are so good and yes, i get platelets from this not sure if it's the folate, calcium in orange or just plain old vitamin c.  My smoothie does smell like a baby aspirin LOL.

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