Splenectomy this week

Hello everyone,

My name is Vincenzo,

My sister is 35 year old teacher, and has been diagnosed with ITP about 8 years ago, her name is Denise.
In these 8 years we have tried everything you can think of. From prednesone, to nplates, transfusion of platelets, you name it. She had 2 beautiful & healthy children in these 8 years. in the few months her platelets started going down, and she started bleeding more than usual. We have been in and out of the hospital, sometimes she would call me at 2 am and rush her there cause she was sick, i think from the medication, or it may even been a stomach virus, but we get so worried that we rush to see whats wrong. She has been doing the Riutoxin, along with prednisone (sorry for misspelling everything) and she would get better for a few days, then the bloody lip and gums would come back, and her platelets were back down. I am just giving you the summary of things, as you all know, there is so much more involved.

She called me last night, ( i was on my way back home) she told me that she was scared, and that she know that if she went to sleep she would wake up and they would be down again. I couldn't help think how much i love her and how i would trade places with her in a heart beat. But I can't, so all I can do is be strong, stay close to her and give her anything she needs. I even tried getting her some natural stuff, like papaya leaf extract, but i don't know if any of this stuff even works. She went in today because (as she predicted) her platelets were back at 10K. She has decided, along with the doctor, that she wants to take her spleen out this week. So they admitted her at the hospital and they are going to do the surgery at the end of the week when her platelets are up and she can handle surgery.

I feel helpless. Reading some stories on here has made me feel a little better, and to know that there are so many people going thru the same thing, and fighting everyday. I have been reading this site for a little over a year and i have learned soo much. today I decided log in and become part of it all. I should have done this much sooner, but I just didn't think about it. I love the support i see given by each other, even if you don't know each other, it is great .

All i can promise is to stay by her side, and help anyone that i can with this. I researched as much as I could about ITP, its effects, how to cure it, with all diff meds. But i am only one, and there is just so much i can do. this website is great and i hope it can help my sister cope with this.

If anyone has any advice for us please share it, I want to make her feel good. She is an amazing person, never smoked, never drank, no drugs, the perfect sister, an amazing mother, a great wife, and the best teacher a kid can have. i know you may think i am biased, but i swear this girl is just a beautiful human being. She is also very strong and this thing has proven so. I am going to stop talking now, go back to work and then go see her for a few hrs at the hospital. I will keep u updated as much as i can.
thank you again.
Ciao
Vincenzo

Hi Vincenzo - it's nice that your sister has such a great supportive brother like you. I'm glad you shared her story and I wish her the best of luck!

Just an FYI - platelet transfusions won't keep counts up for more than a few hours, and Rituxan can take 4 to 12 weeks after the first infusion to work. Your sister probably wouldn't have seen results from those two things at this point. As for N-Plate, that can also take time to work. Hopefully, she will see a rise in counts after the splenectomy and won't have to worry about other treatment options.

Please let us know how everything goes!

I am at the hospital with her now, they want to do the surgery tomorrow. she is very strong, and i am keeping her strong as well. thank you sooooo much for the message, and the support. I told Denise about this site and this group, and that i am writing about her situation. She thanks everyone and appreciates the support.
they are doing a blood transfusion now so they can perform the surgery tomorrow. They are not going to cut her but they are going to do a leproscopic ( I think this is how its spelled) which is a little better than regular surgery .

we are both thankful , and also thank you to amber , she has gone thru the same thing. We are close, Im not sure how much closer a brother and sister can get…. but this will just bring us closer.

I will keep you updated, and thank everyone for their prayers.

Grazie

Ciao

Wishing your sister the best - hope her surgery goes well and she has a great platelet count from now on!

Thinking of everyone and hope surgery goes well and platelets come back up.

Just to let you know it can take sometime for counts to come up after surgery. They could come up on next CBC or days, weeks or even months, so don't be discouraged.

Platelets up!!!

Hey Amber Thank you for the advice,

I am waiting to go see her, everything went good. she woke up , but we can't see her until they give her a new room in the surgery recovery depart. She has been soooooo strong. I can't thank you enough for being there , you and Melinda, Sandi, and everyone that has been praying.

Her platelets were really low before surgery, 6k, and during surgery they gave her a shot of platelets cause there was some bleeding. the doctor said her platelets were 260k after surgery!!!!!!! They might go down a little, but I can't remember last time they were above 200k. Also the pancreas was close to the spleen, so they left a tube in for excess discharge (i think thats what he said), and said it was pretty common, will take it out in a day or two.

I can't wait to hug her and tell her how much i love her. All she cared about before surgery was that i had buy her 7 yr old son his shoes for the musical show tomorrow at school, and he has to do his homework. Not to mention that she thinks she is going to the show tomorrow to see her son . She is my hero! I will tell her about ur prayers and ur messages.

I am so glad i started posting on this site and talking to you guys, i wish i had done it sooner.

I'm glad all went well. 260k is a good sign! Usually if a splenectomy is going to be successful for a while, counts will jump up in a 24 hour period, sometimes as high as a million. If you don't see high counts, it may not end up to be a complete remission and additional treatments might be needed. Sometimes after splenectomy though, the patient may respond better to treatments than they did before. Her response so far is good!

Also please be aware that when a person uses Rituxan, the pre-splenectomy vaccines may not be effective. She should be careful about pneumonia and flu for a while.

I hope her recovery goes well and I'm glad you joined the group! Thanks for sharing her story.

I went home 2 days after surgery and the drain came out a week later. The drain removal was the worse part for me, just felt really weird.

And awesome count good news!

Wanted to let u know that she is up and walking around in the room, i'm here with her now….. she is doing good, other than the drainage thing…. (that amber said its pretty normal) and a little sore , maybe even dizzy from the drugs, she is good. her platelets went down to 190k at night, and are up at 220k now.

I brought her a ton of food, good and bad stuff lol, ( i own a restaurant, so that is one thing i can do)
the Homemade gelato definitely was a hit with the nurses. Will make them extra nice with her.
When she got out of surgery all she said was, " can i see the kids", she was totally out of it, but that she had the strength to say . Most of you know the feeling of waiting for your loved ones while they are in there, it was not easy. So happy to be next to her. All I could think about the night before was….. i even love her voice. ok enough of the sappy stuff…. she is good, so are the platelets…..

She can't wait to go home


Thank you again for the prayers, and all the love. Once this is all over i would love to get more involved and try and help others with this problem since i know a little more than the avg person.

Glad she is doing well. Hope those platelets behave!

Vincent it is so good to hear your sister is doing well! She is very lucky to have a brother like you. I hope her platelets stay up there and all you have to do is feed her and not worry about her count any more

Vincent

The drain things is gross and make sure someone drives her to get it removed. I am sure glad my mom took me, I almost passed out and I even took a pain pill before hand. But once it is out she can take a real shower.

Glad to hear your sister is doing well, Vincent. I hope she continues to have high platelets.

Just caught up with your story Vincent.

Hope your sister is recovering well & is keeping those good counts!! Good luck to you both - thinking of you!

Hope all is still going well for your sister!

hello everyone,

It seems that everyday there is something. her surgery was Wen, but we are still in the hospital.
first her white blood cells count was too high, so they were fearing an infection.
then the drain, was causing her pain.



today the pain went down a bit, and the white cells were a lot lower (from 43 to 31) but her eye swelled up to the point that she couldn't open it. They think it was too much prednesone, and it was very painful.

Not to mention this morning I slipped on the steps at my house while i had her oldest son in my arms. i got so scared , but he's ok. Just hurt his foot a little.

Also , she hasn't really gone to the bathroom, trying stool softener, but still nothing. Was gonna ask amber if she had the same problem

tomorrow we are getting a lot of snow here in Jersey, so we probably think they are going to keep her here no matter what.

The platelets were down a little but still good, at 95k (we'd be happy with that all the time). they said it was normal that they change for a little while

We wanna thank everyone for the kind words and the prayers. I hope things get better soon and we can get her back home, She has been really strong thru out everything, just wants things to get back to normal.

Vincent - thank you so much for keeping us posted about your sister! Your love and care for your family is truly inspiring!!

I have been taking prednisone (now tapering) and rituxan. I am unsure right now if the medication is working, I have another follow-up with my hematologist tomorrow. Splenectomy may be in my future, so it has been good to read your sister's experience. Thanks!

Well Vincent

Am a smoker and drink coffee. My doctors knew that I was going to have a BM with out a smoke.They sent me home on Thanksgiving, I didn't want to smoke since it had been a week but 10 days and I tried Smooth Move tea twice and nothing. I gave in and smoked then heard my stomach moving and passing gas with in 30minutes.

It can take awhile to get things back to normal and they may not send her home until everything is moving.

Finally she is home. she was in for a week before she was released .

She is doing good, still the drain is in, but should be removed on Tues. She looks great, i think i kissed her and hugged her for 10 min straight when i got to her house.


We have been dealing with a death in the family ( our beloved cousin) on top of everything else. Its been a rough month lets just leave it at that.

She has been strong thru out. Her count bounced around a little bit, from 360k to 200k, to 80, to 55k now up to 65k, but she is taking less and less cortisone , and the lowest was when she had her menstrual cycle, 55K. I'll take it any day.

I actually just got a call from my mom, saying that they touched the pancreas or something during the operation. I hope its not a big deal. not sure if that is common.
Hope you are doing better Amber , u seem like a strong person, and thank you for your help.

Aliza, I am so glad that i can help. I am willing to do what i can for anyone with this problem. I mean most of these cures have not worked for my sister, but they do work sometimes for a period of time. If you need anything feel free to email me Licata24@aol.com

again I wanna thank everyone that was there,

Glad your sister is doing well, Vincent! My splenectomy didn't work for me.

Sorry for the loss of your cousin.

Thank you Cindy,

I am really sorry it did not work for you, can't be fun to go thru that and then not work.

When did you know that the splenectomy did not work?

Did it have any improvement at all?

and what are you doing about it now?

So sorry to hear about your cousin!

I knew after the first month. Right after surgery counts went to over 200k, but by the end of the month, they were back down. I only did it so I could get off the pred, which didn't happen. I finally did Rituxan in 2010 and got off the pred by the end of the year. Have been normal since then with a couple of real low counts. In fact, it's time for blood work. I'm not sorry I had the splenectomy, really; just sorry it didn't work. I knew my chances going in, read all the opinions on here, talked to my husband. When my hema dr. first mentioned it, I said if he could prove the spleen was the problem, I'd have it out, but he couldn't say for sure so I didn't. It was 2 years after being diagnosed that I went that route.

Hello everyone,

My sister is back at work, and just got her count it was 107K!!! very happy

But she still has the drain in. The might take it out today or at the beginning of the week. Not sure why that is, but the liquid is still coming out. they said the pancreas was really close and it may have been touched.

I hope it's something that we can resolve quickly and we can have her at 100%.

I still had fluid coming out when he took mine out. Yes the spleen is so very close to the pancreas, that is why the put the drain in. But the fluid was becoming less red and my yellowish.

Good news, Vincent! I'm glad she is doing better.

Vincent I'm really happy for your sister [and you] - back at work & a good count! Thank you for keeping us updated!

hello everyone,

here is what has been going on ….

the doctor was supposed to see my sister two weeks ago on friday.
He was busy so he asked her to come back the following friday . When she got there he took her drain out ( 3 weeks after the operation, and sent her home.

The next day (saturday) we took her to the hospital because she had a fever.

It ends up being a staph infection that had gotten in her blood, they said during the surgery maybe.

So they put 2 more drains in her, in different parts, along with the hole from the other drain that still leaks.
her platelets had gone down, I'm guessing because of the infection . they were at 20K.
they gave her a platelet injection, they were up to 90k yesterday and up to 167k today.

she is still in the hospital, they are going to have to give her a special antibiotic for 14 days once the infection is gone, which it seems like it is gone already, they are just gonna check one more time to make sure. They said they will send her home with a thing in her arm that will be able to go back to work with it.

They also have been changing her room almost daily, cause …. well I'm not sure why, i guess the hospital is busy, but its ridiculous. It has been a rough ride, i just want her to have her life back, and of course as if this wasn't enough….. her husband has to go to Italy because his father is dying, and doesn't have much left. I guess when it rains it pours. I used to talk so highly of the US hospitals and the medicine here in the states. I am rethinking everything over. Just very frustrating.

Sorry to hear about the staph infection. It does always seem that way as we say when it rains it pours.

Sounds like they are leaving in an IV port so they can continue to give her IV antibiotics after she leaves the hospital. That is good!

Sending thoughts and prayers for a complete recovery!

Sorry to hear about your sisters infection. It does all get really frustrating at times. Hope she is back on the road to feeling fine.