| Author |
 Topic  |
|
|
Shalulewis
India
9 Posts |
 Posted - 08 Dec 2009 : 08:53:22 AM
|
Dear fellow ITPeers!
I have recently been diagnosed with ITP and I have a lot of questions..
A Little bit about myself,
I am an airhostess flying with one of India's leading private airlines and have had a successful 7 year long career. Prior to being diagnosed i weighed 51kgs and stood 5.3 feet tall. I have been married for 3 years now.
Here is the prelude to my diagnosis
Around 3 weeks ago, my periods were already in its 6th day, with quite a heavy flow. There were also some small blood clots (only 4 to 5 spots) that suddenly appeared on various parts of my body. This got me and husband slightly worried and we consulted a gynecologist who suggested that I get a blood test a sonography done. the sonography report showed that I had conceived which the doctor also then diagnosed as a retained (incomplete abortion/miscarriage). An immediate DNC was done, post which I was to be discharged from the hospital. By then the Blood report came in which showed a platelet count of 18000, this got the doctor worried and he suggested another test. This test showed a count of 19000.
The doctor then suggested I get admitted to a bigger hospital where I was I transfused by plasma (2 bags) and platelets(4 bags). A few hours later my platelet count dropped drastically to 7000. This alerted the Hematologist (considered India's finest) to immediately diagnose it as ITP. He then suggested to me and my family the medical course to follow. My husband asked for a re-test; this time it slightly increased to 13000 and we all suddenly knew that it had to be ITP ( my husband and family had already started researching on it)
the doctoe started me on a dose of Immunoglobulin (God it's expensive!!! apprx $1500/-) I was administered 60 gms (3 doses) of IGg for 2 & 1/2 days. This was combined with Prednisone (50gm/day) On the 4th day of hospitalization my platelet count increased to 33000 and then on the 5th day (discharge date) to 100000.
The fact that I was diagnosed with ITP was traumatic especially when the doctor said that it was INCURABLE and a life long disorder. It was even more scary since I was to be administered with steroids which would cause various side-effects including weight gain, fluid retention, mood swings etc. I soon started comparing it with cancer. The more I read about ItP, the more discouraged I got.
I had taken prednisone (50mg/day) for one whole week, post which my count increased to 300000. I thought the Hematologist would decrease my dosage, but he didnt. This is my second week since I have been discharged and since I had been given IGg, I have religiously been taking Pred since then. I am hoping that my count would keep on increasing...
EVERY day and EVERY week tests me....
I have started taking in healthy iron-rich food (since my hemoglobin level went as low as 7.9 and now it is at 8.9) I also have started drinking one tablespoon of papaya leaf juice (considered a natural remedy to increase PT count)
Since being on Pred, I have gained atleast 4 kgs, my face is slowly getting rounder, I cry on the drop of a hat, I feel elated sometimes and then completely depressed, My eyesight sometimes get hazy, Terrible acidity and flatulence, constipation, body ache, my body seems to grow broader etc.....
It is still difficult for me to digest that I have ITP and I always pray that this diagnosis is just a mistake... I start thinking of really stupid and extreme things!
I NEED TO KNOW WHAT IS MY LIFE GOING TO BE LIKE?
WILL I BE ABLE TO CONTINUE MY JOB AS AN AIR HOSTESS (I have taken a 20 day leave, I am also applicable for a 6 month leave without pay)
WILL I RETAIN MY ORIGINAL SIZE? IF SO HOW FAST and HOW CAN I?
WHAT CAN I DO TO KEEP MY WEIGHT NORMAL?
HOW LONG DO I HAVE TO LIVE? (the doctor doesn't tell much...he seems cryptic?)
CAN I HAVE EVER HAVE CHILDREN (I AM THIRTY)
WHAT ARE THE CHANCES THAT I WILL BE COMPLETELY ALRIGHT WITHOUT ANY MEDICATIONS AFTER THE INITIAL 6 WEEKS OF PRED?
I am scared, because every where I Read, I see that a relapse will always occur, WHAT THEN? My doctor has said the next step is taking in RITUMAXIN (Mabthera, apprx $500/- per dose, 4 doses!!) which is a chemo drug? I AM REALLY SCARED???
THE OTHER STEP IS THEN SPleNECTOMY (I don't have a gall bladder)...
Whats after that...
The usual answer I get is that..DO NOT WORRY..TAKE IT ONE STEP AT A TIME...But how CAN I?
I AM only 30.....I got to think of life, family, fun, money..(it is quite an expensive affair..)
IS THERE ANYONE WHO HAs BEEN CURED OR IS LEADING A HAPPY LIFE?
IS THERE ANYONE I CAN TALK TO AMONG YOU?
Please please help me!!
Looking forward to many replies
Shalini Lewis
Mumbai India
|
|
|
dingowoc
USA
281 Posts |
Posted - 08 Dec 2009 : 10:00:49 AM
|
Shalini -
You've come to the right place!
You will find LOTS if help, support, and information on this forum! Your story is typical, and we ALL were scared and devastated when we got the bad news.
First of all, a relapse will not necessarily always occur!!! That is bad information!!! Don't believe anything else from that source!
But, yes, It will disrupt your life, it will scare you, you will feel helpless and confused and angry, you may at times feel hopelessly exhausted, but, as time goes on, this disorder typically becomes more of an annoyance than a fear!
So far, there is no "cure", but there are lots of ways to treat and control it, and you may find a treatment will work for a while, then stop working, and you will move on to something else. Some treatments are easy, others, frankly may be awful ( As you know, Prednisone, for example ! ) Or, a treatment may last for years! Or forever! Plus, NEW treatments are being developed, too.
I've lived with it for over 30 years, and the most comforting information was this article, which gets RIGHT to he point:
http://www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf
Best of luck, and be prepared to be inundated with TONS of good, helpful replies from this sites' members!
Best Wishes!!!
P.S.
Watch out for the quacks and hustlers - they prey on people like us: scared, desperately seeking a cure, fed up treatments that may not work, willing to try anything. |
Edited by - dingowoc on 08 Dec 2009 10:35:58 AM |
 |
|
|
Ann
United Kingdom
2632 Posts |
Posted - 08 Dec 2009 : 11:22:22 AM
|
Hello, I'll answer the bits I know about..
You don't need to put on weight if you don't want to. Just don't eat too much. That's what the doctor told me and it was true. I didn't over eat and didn't put on weight. Except I have to admit due to water retention. I would put on half a stone.. (7 pounds) and then lose it in a day by weeing it out. LOL.
How long do you have to live? The answer is as long as anybody else.
Can you keep your job? I don't see why not. Most think that flying is not a problem.
Chance of having children? Fine. No problem
Chance of normal count after pred? Well, not really good, something else may be necessary but it's not a death sentence. |
|
|
|
bonbonw
USA
3956 Posts |
Posted - 08 Dec 2009 : 11:02:17 PM
|
Hi Shalu---, welcome to this support site! The weight gain can be expected while on prednisone, I call it "dread pred." I know you have good Drs. where you live. We had one lab technician here for several years and he had ITP. To help keep the swelling and weight gain down you have to avoid salt (sodium) which causes the system to hold fluids and weight gain.. If you can, drink distilled water. The face rounding is not unusual either and will go away when you are able to get off the pred. While on steroids, be sure to get some supplements of calcium and D to protect your bones and teeth. Steroids take over the job of your adrenal glands so be sure to taper off of them slowly to allow your adrenals to get back to work on their own, when you do taper off. Go to the treatment page on this site and read about treatments for low counts, etc. Keep coming back to let us know how you are doing.
I hope your Dr. will explain all of your options. If not, come back and ask.
Hugs Across the Ocean,
Yvonne W.
Chronic,refractory ITP
"Yesterday is but a Memory, Tommorrow is only a Dream, Today, well-lived, is a Gift from God |
|
|
|
juliannesmom
USA
912 Posts |
Posted - 09 Dec 2009 : 03:03:56 AM
|
Shalini,
Welcome, and sorry you find yourself on the ITP roller coaster. Statistically speaking, an adult female with ITP is more likely to have a chronic case than a male, but even adult female cases can be acute. Additionally, even chronic cases can remit on their own. My teen daughter has remitted on her own. Her counts have remained mostly in the 100s for the last year and a half. Even when her counts were lower, she's been able to have a fairly normal existence, but had to be careful about bleeding risk. In the early stages, I despaired and never thought life would be good again, but it can be and it has been. On the pregnancy question, you have only to look at that topic on here, and see that it can and does happen. There is a recent post from Area51 that references good news about her. It is a photo of her lovely family. Her pregnancy had risks, but she has a beautiful daughter to show for it. I can't speak to the career question, but there have been other airline and flying careers among the folks on this site, so perhaps you should post a question with that in the topic title so that those folks will notice it?
Norma |
Edited by - juliannesmom on 09 Dec 2009 03:05:45 AM |
|
|
|
Gort
USA
799 Posts |
Posted - 09 Dec 2009 : 5:20:45 PM
|
You already have one treatment that raises your counts -- prednisone. Yes, no one wants to take it, but don't overlook the importance of knowing that you have one treatment that works for you, in a pinch. Now, you have the luxury of having time to find another treatment with better side effects. Are there other treatments - yes, many. Look at the treatments page here on this website.
Most people do gain weight on steroids, but not everyone. I always lost weight on steroids. I was ruthless about cutting out all salt.
Is there anyone who has been cured? Of course. There are some people who have acute ITP, which resolves by itself over time. And, there are many chronic ITPers who are in remission. And, there are many, many more ITPers who, while not in remission, have counts above 20 or 30, which most consider safe.
Is there anyone who is leading a happy life? Of course. ITP is a serious health issue, but don't start writing your obituary yet.
+++++++
Steve
Living with ITP since 1967 |
|
|
|
lili
Canada
84 Posts |
Posted - 10 Dec 2009 : 06:46:17 AM
|
Hi Shalulewis,
I'm sorry you're having such a tough time. It sounds like you're really feeling the effects of the prednisone, which I'm sure many people here can relate to.
There is a book called "Coping with Prednisone" that's very useful. It offers a lot of helpful strategies for dealing with the many unpleasant side effects.
Feel free to come and vent here any time you need to. There's lots of support and good advice here.
Lily |
|
|
|
gsh
Canada
318 Posts |
Posted - 10 Dec 2009 : 4:49:23 PM
|
| great advice everyone! |
|
|
|
owen
India
13 Posts |
Posted - 15 Dec 2009 : 02:05:21 AM
|
Shalini U may be having Acute ITP which will vanish within few months.I saw many people here who got normal counts with Prednisone and there counts stayed normal within 3-6 months of Prednisone.Dont worry i think this will happen with u also and be always +ve bcoz 80% cure is ur courage and let us give 20% to ur Medicines.
prasad |
|
|
| |
Topic |
|
|
|
New to ITP....I am clueless! PLEASE HELP
Forum Locked
