whirlwind

Hi all:

Well I went for my hema checkup on Feb 9th, she admitted me to the hospital right from her office, My plate count went from 46,000 to 2,000 in one day and said I need my spleen out now. She wouldn’t even let me go home. Luckily my sister-in-law drove me to my apartment and her and my bro live in the same apartment complex so I gave her my keys and my bro and her got me stuff I needed. I was so scared as this was happening so fast.

The did the surgery on Feb 15th. I was so scared as my plated drop to 7,000 to 3,000 the day before surgery but they transfused more platelets they day before and during surgery.


I came home on Sunday Feb 19th. Stay at my bro’s for the night, felt good except for my left side it hurts to walk. Felt good on Monday.

Today, not feel all that good.:sick: I have absolutely no energy to do anything. Platlets counts when I left the hospital were 410,000

Going to go up and stay at my brother and sister-in-law for company and feel better having someone around then being alone.

I see the surgeon for a follow up on Thursday.

Any advice from anyone who has had there spleen remove and how I should be feeling almost a week later would be appreciated.


Michelle

Hi Michelle -

Did you have it done as open surgery or laparoscopically? If platelets are low, as yours were, the preferred method is often open surgery (seems ironic) -- so they can see everything and deal with any bleeds. With laparoscopy if a bleed occurs outside the camera's view they might not see it. Maybe with the platelet transfusion they felt confident with laparoscopy?

I know exactly how you feel when you wrote "I was so scared as this was happening so fast."

I had my spleen removed this past Nov 3. I returned to work after a week and a half, but I was still wiped out, sore and exhausted. ( I could close my office door and nap on a sofa if I need to - very helpful). I had it done laparoscopically, so I imagine w open surgery, the soreness is worst and recovery time longer.

Getting in and out of a bed was the most challenging- someone advised me to sort of hold and push in at the surgical site when I did that and it would help. Sorry to sound crude, but as if you're holding in your guts as you maneuver your body. It helped.

It very encouraging that your numbers are high. Mine were high afterwards and then dropped week after week for 2-3 weeks until they stabilized in the normal range.

You've had major surgery so be patient with yourself! Take all the time you need to rest. Also -if you're on steroids, you will heal more slowly.

I imagine it's also been a stressful time, so now just think- the worst is over! All you have to do now is relax and heal.

Mark

Ok consider this from the geezer crowd. I had a splenectomy in 1985 at the age of 23. Open surgery appx 6 weeks recovery. Very large incision,but on the up side it led to 24 years of remission. It seems no two cases are the same so may. I pray for your quick and prolonged recovery.

Hey Michelle,
Take it easy and give yourself time to recover and wow what a big week, bet you are glad it's over. Wishing you the best and enjoy your time away from work, spoil yourself a little.

Hi folks:


Well the whirlwind continues. I was getting dress on Monday Feb 27th to go for my follow up bloodwork. Notice blood blistering and petki on my arm off the the ER I went. They took bloodwork and my count was down to 9,000(this is a after the spleen removal). They admitted me and start Rixtuan that night. I was very scared and needless to say I had a mini-melt down, cause everyone doctors and surgerons were telling me there was a good chance the spleen removal would work and it was a good 60 to 70% chance of giving me remission from the ITP. I felt like my life was turn upside down again. All I did for two days was cry. I did ask to see the on staff psychologist. She gave me an anti-anxiety medication which has been helping. They did the second rix treatment on March 5th and let me go home. Did 3rd on outpatient Monday March 12th. They did a cbc and it was only 15,000.

I also had a schedule appointment that same afternoon with my hema. When she walk in the examine room I just lost it and started crying as I was upset the plates were that low. I thought for so she was going to put me back in the hosptial but she didn't She said give the rix time to see if it work. I see her again on april 4th. I went for bloodwork on Thursday. Plates were up to 123,000. I am also back on 60mg of predison.

I just don't know how to feel anymore. I am back to work as of March 13th. But I am starting to feel like I don't have a life anymore. it's all spent watching for signs of drop plates, I don't even fee like I can make plans to have any fun. I am supposed to go to a concert with friends on April 13th. Tickets have been purchased. But still in general I don't feel like I can go anywhere, plan anything or go anywhere, except, shopping, work and home.

If anyone has any advice I would appreicated it. I don't know how or what to feel anymore. I feel like my life as I knew it,has been taken away from me and everything has been every since my mom passed away last may 2011,has been turned upside down.

If you read this far. Thank you. I don't know what I would without the support of everyone on this board.

Michelle

Michelle:

I'm so sorry to hear that the splenectomy didn't work. I wish doctors would be a little more conservative with the remission quotes.

Have you been able to follow up on the therapy? It might help. I can tell you that life with ITP can be normal for the most part. You can go places and do things. It serves as a distraction - takes your mind off of ITP and allows you to do things that you enjoy. I didn't let low counts stop me from anything and for the most part, there is no reason to let that stop you.

Give Rituxan time to work and keep hoping. Maybe you will have a good response to that and get a break for a while. It seems as though your doctors reactions are really scaring you. Maybe a second opinion would result in a doctor who is a bit calmer when counts are low.

Michelle:

You are not alone. I cried at my hematologist office a few weeks ago when I got a really low read. It's frustrating, and yes, you feel like all you do is worry about those &@! numbers.

But you know what? Today, I had numbers of 11k - down from 91k a week earlier. But I'm getting more comfortable with that reality, and this time, I didn't cry. We talked about treatments, I spoke my mind and stated ideas, got my script, and went on my weekend trip into Virginia with my friends, which is where I type this now.

Don't be too hard on yourself. Cry when you need to - it gets the stress out. Also, 60 mg of prednisone could make you cry pretty easily, so keep that in mind as well. These doctors are sometimes so focused on fixing a number on a page that they don't realize all this STUFF affects more than the blood. We are WHOLE people, and these meds/procedures are intense. They pshaw it off with comments like "a splenectomy is a very common and simple surgery", but dude - it's still surgery. Or "millions of people take steroids" - yeah, but that doesn't make taking them any easier.

I agree w Sandi - start shopping around for another doctor. Read as much as you can about ITP and treatments. Believe it or not, there will come a day that you walk in the office, and you will know about something that your hema doesn't. It's a weird moment, but I can almost guarantee you it will happen. Empower yourself with as much knowledge as you can - this will help you understand the ITP, the numbers, and what it all means to you personally. That will make it easier when you talk w them about treatment options.

And go to that concert in April, just no slam-dancing.

Vent here anytime - this site makes me feel so much better. I feel less alone, and I've gotten so much advice and information here - its wonderful.

Hey Michelle,
I like the others think that you are going to be ok. Try not to worry to much and I also agree with what Sandi said about the doctors, you need a doctor that is calm and not one that freaks you out.
Go to your concert and have a great time, you need to take the focus off the ITP and remember to live your life.

Michelle, I too think you need to get a second opinion, if not a new doctor.

I never let the ITP run my life, I did whatever I did before it. I didn't take it seriously, I guess.

Sorry the splenectomy didn't work for you; mine didn't either. Hang in there, it does get better.

What concert is it? I'm going to see Moody Blues on April 2.

Wow Moody Blues that brings back memories of the 70s. Didn't know they were still going, they must be fairly old by now. I think I've got just one of their records.. Days of Future Passed it's called. Might have to play it again now and it's been a while since I got the old records out.

Yes, I think they are in their 70's now. A friend of mine told me that they still put on one heck of a show though. Can't wait. They've been on my list for years.

Don't we date ourselves:laugh: I remeber seeing them in Hyde Park in London when I was a student - the good old days!!!
Christine

Michelle:

I've been thinking about you all morning. I have some long-winded advice and you can take it or not.

About 17 years ago, my Mom was sick and had a lot of tests done. She got a call from her doctor telling her that she had lymphoma and would have to start chemo. This was on a Friday and she had plans to go away with friends for the weekend. So while my sisters and I were spinning in circles not knowing what to do, my Mom was busy making fruit salad that she intended to take on her trip. Her friends came over and they were all laughing and having a great time. My sisters and I were wringing our hands and crying. I didn't understand how she could just go on with life after getting such an emotional smack like that. But she did.

Fast forward a few years....I'm 17 years older. A few things have happened lately and I have been surprised by my own reaction. This past November, my Mother-in-law passed away. She was in the hospital and we knew it was coming any day. I had been going to the hospital in the mornings before work and I stopped that day too. She was the same as the night before, so I left for work intending to go back afterwards. About 1/2 an hour before lunch, my husband called to tell me that she had just passed. I was stunned. I didn't expect that even though I knew it was coming. I started to feel the "what should I do I just want to spin around" thing coming, but stopped it. I had planned to go out with a co-worker for lunch so that is exactly what I did until I could figure out what was next. My husband had told me not to bother going to the hospital because they were going to clean out the room and leave soon. By the time the lunch hour was over, I was more composed and ready to face the next thing.

Some people might think that was an odd reaction. In a way, I do too. But when you are faced with a blow and not sure what to do, I find that keeping to the plan for the moment really helps.

Another situation: A few weeks ago, I found out that I have pretty severe spinal stenosis and need surgery. The neurosurgeon scared me when he said that a fall could sever my spinal cord and I'd be paralyzed. I found that out first thing in the morning and went back to work. I kind of figured I had stenosis by the symptoms I am having, but didn't know it was this bad. Anyway, wanted to start spinning around - what to do! But I quickly decided that I was going to go ahead with life's plans. My plans? Take time to tie things up at work and make it to that Moody Blues concert that I was looking forward to. I scheduled the surgery for the week after that. In the meantime, I'm living with some pretty nasty symptoms and have to limit stairs and lifting. But I am NOT going to rush into anything like that without feeling prepared and ready. I am going to follow through with my plans.

Life can hand you some shit, that's for sure. And I don't really like the ♫♪"When life hands you lemons, make lemonade"♪♫ saying. I hate lemonade! But I can tell you that laughing and making fruit salad is much better than crying and spinning around not knowing what to do. It's a choice.

Hi folks:

I know it’s been a while since I posted anything. Been kind of busy. My platelets have gone up steadily even while down dosing the prednisone (yes still the same prednisone treatment from when I was back in the hospital in February). As of Monday May 7th, my platelets were 501,000. I seem my hema on May 8th. She is very optimistic the rituxan treatments worked. I am on 10mg of prednisone starting today (may 13th) then she said stop. So I am trying to keep my hopes up as well.

I was working part time from April 16 until tomorrow, I go back to work full time. I think working for almost a month did help me physical, mental and emotional. Well at least for now. I think I’ve made peace with the fact that I have ITP and just have to live with it and go with the flow. I say that now and I am not sure if I feel that way because the counts have been up there. I don’t know what my reaction would be if they would drop again and I’d have to be back in the hospital.

I tried to talk to hema about the possibility of taking medical disability retirement from work. She not for it yet. She doesn’t see any reason for it. I talk to our retirement counselor at work and I would get my medical and prescription and I would make about $200 less a month then I am making now. I think if my platelets would come crashing back down(I hope they don’t). I would then push more for the disability retirement.

If things stay ok and steady I don’t see my hema until August 9th.. Is it possible too high of a platelet count is making me tired?

I’ve had an emotional mother’s day, since my mom’s passed away last May 14th. So today is mother’s day and tomorrow is one year since she has been gone.


That is all from this end. I thought I’d pop in a let you know I am still alive, I just had a lot of stuff going on.

Thank you all as always for your support and encourgment.

Nice counts. The tiredness will be from the steroid taper. Going from 10mg to nothing is very harsh. If it were me I'd do a week of 5mg before stopping just to make it easier. Some go even slower but I was always itching to get off it so was prepared to put up with the aches and pains and tiredeness.

There have been people here who have managed to take disability retirement. I wish I could although I don't really see that it's necessary.

Good to hear from you, Michelle! I'm glad you are doing better.

If it's Social Security Disability, you wouldn't be approved with normal counts. There are criteria that must be met:

Chronic thrombocytopenia (due to any cause), with platelet counts repeatedly below 40,000/ cubic millimeter. With:
A. At least one spontaneous hemorrhage, requiring transfusion, within 5 months prior to adjudication; or
B. Intracranial bleeding within 12 months prior to adjudication.

www.socialsecurity.gov/disability/profes...dLymphatic-Adult.htm

Whatever happened with your head?

Hi.

Today plate count was 501,000 again so as of now they are hoovering around 410,000 to over 500,000. Is is possible to have to high of a platelet count?

Sandy, as for my head, funny but every since they removed my spleen I haven't had any of those headaches. I was back on May 7th for a follow up with the nerosurgeon and another MRI so they could compare. I haven't heard back from the nero since. Now wheather or not the predison was helping to abate the headaches I don't know. I have been off the predisone for almost 3 weeks now.

What are some of the side effects of going off the presidone and being off of it. This is the longest I've been off of it.

Thanks to everyone for there information, support and encourgment.

Michelle

Didn't you have rituxan? That is thought to be good for the hyperintensity signal thing you had diagnosed in the brain.

The side effects of stopping the pred are aches and pains and tiredness but they shouldn't last too long.