Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1
  • 2

TOPIC:

Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2291

  • Angel85
  • Offline
  • What we have is now & right now we have each other
  • Posts: 522
  • Thank you received: 13
Sometimes it is hard to be positive, ITP is full of ups and downs and you get excited when things seem to be going well and then hit rock bottom and feel like your starting all over again when things go bad. I am lucky that i am surrounded by a very supportive family and group of close friends. When i am around them, i feel i don't have to think about all my medical issues and just live in the moment of enjoying my life with the people closest to me. If you worry and stress all the time, your not going to enjoy life and be miserable. Some people who have just met me can't believe my postive attitude, but others who have know me for a long time know that it's my wonderful upbringing and being surrounded by so many positive people. I'm not saying i am positive all the time. There are times when i have bad days and think why me. I just don't show that side of me in public because i want to be strong and not have people feel sorry for me and pity me. I want people to think 'i want to be as positive as she is', not have people think 'she looks like she just doesn't even want to be here'
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2317

  • NatalieM
  • Offline
  • Posts: 191
  • Thank you received: 12
Hello All!

Good news! My counts are still up at 242! Wow! I'm thrilled! I don't have to go back for 3 months! Yippee! Oh and Denise, to put your mind at ease, I asked her about our little discussion and she said that "NO NO NO NO....just because you have ITP doesn't mean you will develop cancer. Two different things." She is a very experienced and well respected hemotologist/ONCOLOGIST...so I think she knows :) Take deep breaths, girl, you'll be ok. And honestly, I understand your fear (been there) and everyone else's about these other afflictions (cancer, lupus, etc) and they are somewhere in the back of mind, but let's just focus on what we know....you have low platelets. That is all we know. You have a history of cancer in your family (so do half of the population). You're ok...live in the present! Good luck tomorrow! You'll do great!

Nat
*Here's to high platelets!*

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #2319

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Great news, Natalie! I'm happy for you!

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #2320

  • Angel85
  • Offline
  • What we have is now & right now we have each other
  • Posts: 522
  • Thank you received: 13
Thats awsome Natalie, somehow i don't think mine will be too high. When i had a count done at the ED on tuesday they were back down to 38, mine do go down when i am sick, but i don't they will be bounce back up too high from tuesday to today.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2322

  • ddunn
  • Offline
  • Posts: 117
  • Thank you received: 1
yahooooooooooooooooo natalie!! I am so proud of your counts!!!!!!!!!!! I will let you know what all happens tomorrow. Thanks again.....u have such a good head on your shoulders, and i need that right now!

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2323

  • ddunn
  • Offline
  • Posts: 117
  • Thank you received: 1
Thanks so much Lorie!! It is just still all new to me, so i am still in the "OH MY GOD, Panic STAGE" I hope one day soon i will be here offering word of encouragement to the newbies that sign on.....this board is such a blessing. I cant say it enough,

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #2667

  • wendyk
  • Offline
  • Posts: 19
  • Thank you received: 4
Hello All: Thank you for sharing your stories and encouragment. I think the best medicine for this treatment is PMA (positive mental attitude:). My story began in 2001 when I was preganant (112k count). My numbers went down to ZERO, at the time i didn't know anything about ITP and probably didn't want to know much. Hemo took me off of pred while preggos and I dealt w/ my ITP w/o treatment for the remainder of pregnancy. I was running a small business w/ my husband and really didn't think much of the ITP (except would wake up at 3am b/c of the 80mg pred slowly tapering)I decided to write a book (w all the energy I had). My son was born happy & healthy, I never took a day off work in 10+ years. I had no treatment in 5-6 years, ITP counts 40-100k.

2006 I had a splenectomy, came home the next day and counts increased a bit probably 150k. Later that year we sold our company to a fortune 500, all the hard work paid off which wasn't hard at all, I loved our office and surrounded myself w/ people i liked. And really I created a life that I loved, I was home by 3pm to pick my son up from school and arrange playdates,make dinner, etc. I was retired at 36yr old! Not bragging but I just want you to know that you can live and achieve all your life goals w/ this disease. Now I am in the process of buying a restaurant / healthy franchise (something fun!) downtownt SF. I am not going to let ITP stop me from enjoying life.

The things I've had to adjust is enjoying strenuous activities like skiing, don't really drink maybe occasional lite beer on the wkends, really hard workouts, commmon sense things:)

I more or less ignored this disease for the past 10 years+ but I am 41 now which is why I want to make sure i am in tip top shape to run my new biz (last week count was 34k). Eating healthy is a must, research which type of foods may thin your blood (wine, berries, etc). Try and eat Vit K foods (green leafy veges) and of course anything in moderation.


All the best,

W

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #2761

  • Lorie85
  • Offline
  • Posts: 127
  • Thank you received: 0
Thanks Wendy. I think i'm adjusting better to ITP now i'm back at work. I'm passed the "oh my goodness am I going to Die" stage. This board has been so encouraging and lots of people have shown me i can still live life fully with a few adjustments. Platelet counts are still low (2k) on Monday but since coming off steroids I feel SOOOOOO much better. I have also made changes to my diet and lifestyle. I'm much more particular about what i put into my body and I value my health more. I hope 'll be writing success stories like yours soon!

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #2870

  • mcafiero
  • Offline
  • Posts: 58
  • Thank you received: 4
Hey Wendy,

Just wanted to let you know that I love your story!

I talked to a dr in Oklahoma City who I found through a friend of a friend of a friend who leads a research team on ITP. I felt lucky to get just 10 minutes on the phone with him.

I told him that I am hoping that I can just deal with this and live a fairly normal lifestyle.

To that, he said, "You will be able to deal with it and take out the word 'fairly'. You WILL live a normal lifestyle. ITP is a nuisance, you have to watch yourself for signs of low platelets. Other than that, ITP is not normally the kind of crutch that you will often read about on the Internet.

The meds and splenectomy and all of that stuff are realities, but unless you just run across some really crazy bad luck, we should be fine. :)

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #2878

  • NatalieM
  • Offline
  • Posts: 191
  • Thank you received: 12
I second that! I also love your story! SF = San Francisco right? AWESOME! I want to visit there...maybe I'll eat at your new restaurant one day?

I also love this quote: "You will be able to deal with it and take out the word 'fairly'. You WILL live a normal lifestyle. ITP is a nuisance, you have to watch yourself for signs of low platelets. Other than that, ITP is not normally the kind of crutch that you will often read about on the Internet.


I like hearing that over and over again! WE ARE NORMAL PEOPLE! Best of luck to you and your restaurant and mcafiero, keep in touch with that friend of a friend of a friend...maybe he'll discover some miracle treatment for us! ;)
*Here's to high platelets!*

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #3162

  • sherrie1c
  • Offline
  • Posts: 6
  • Thank you received: 0
New to ITP also, found out on 3/25/10 when admitted to hosp with a count of 1 1/2, the 1st day was real ruff, was given platelettes had a bad reaction to it, then was given an overdose of pain meds. that caused me to code blue, was revived and sent to ICU, there I was given FF Plazma didn't work, so was given IVIG for 5 days. I am home now and taking predazone each week reducing the dosage. I am also scared once i'm off the meds and the IVIG is no longer working what then? I don't want to go back to the hospital.
Sherrie C.

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #3175

  • Lorie85
  • Offline
  • Posts: 127
  • Thank you received: 0
Sherrie, I can understand how you feel as my introduction to ITP put me in the ICU also. this is a scary stage looking the unknown in the face, but I'm happy that you have found the board. There are so many warm, friendly and informative people here who can help you along your ITP journey. Your not alone!

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #3184

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Sherry:

You had a bad experience and it doesn't have to be that way. First, platelet transfusions are not a viable treatment. Unless you had bleeding, it wasn't necessary. Second, low platelets do not always warrant admission (unless, again, there is bleeding). Third, IVIG can be done out-patient. And fourth, there are quite a few other treatment options. Have you seen the treatments page?

It can take some time to get a grasp on this and figure out what will work best for you. IVIG is usually temporary, so it might be a good idea to find out what is available and discuss treatment options with your doctor. Do you have a hematologist?

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #3200

  • sherrie1c
  • Offline
  • Posts: 6
  • Thank you received: 0
The hematologist at the hospital retired a week ago, I won't see my new one until 4/22/10, until then I have to see my PCP for weekly counts, I see him tomorrow. i was given platelets because there was bleeding but it still didn't work my body killed them as soon as they went in. I understand that the IVIG is good for only 3 weeks, I will be coming up on the 3 week mark when I see the hematologist for the 1st time. I hope he has a good game plan when I arrive because I'll be on only 10mg predasone by then.

Thank you all for your support and advise it is greatly appreciated.
Sherrie C.

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #3217

  • Melinda
  • Melinda's Avatar
Well you had a heck of an introduction to ITP - glad you are home and I hope you will like your hematologist.

Sandi mentioned other treatments - here is the address for conventional treatments, if you want to look at complimentary treatments go to the top of the page and put your cursor on Treatments then slide it down to Complimentary. Actually at the top if you put your curson on Treatments you'll get the conventional ones too.

This lists the treatment types [Anti-D, chemo, etc] just click on each one and read.
www.pdsa.org/treatments/conventional.html

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #3232

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2367
Sherrie:

That's why platelet transfusions are not viable treatments. IVIG can last anywhere from a day to a few months....it all depends on the person.

Good luck with your new doctor.

Please Log in or Create an account to join the conversation.

Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 9 months ago #3263

  • sherrie1c
  • Offline
  • Posts: 6
  • Thank you received: 0
Thank you for the web sight, I will look at it and prepaire myself for what ever treatment the Dr. decides is good for me. And yes it was quite and intro. to ITP don't care to do it again.
Sherrie C.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
  • 2

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo