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Please help me!! I'm SOOO scared.. 11 years 11 months ago #869

  • Joya
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Hello Everyone..

My name is Joya, I'm 21 years old and life in the Netherlands.. Since we don't really have very active fora's on ITP in Dutch I decided to sign op here.. So sorry for the grammer faults etc.

This is my story:
I'm a first year student Lifestyle & Health (This is a study where we learn how to make different groups of people healthier with sport) I'm a dancer, and danced as a cheerleader for a few years. Overall I'm a very active person, I sport 5 times a week all kinds of sports and I hate to sit still.

During one of the sport lessons at school I god kicked. My enckle was very swollen and I decided to go to the docter since I was going snowboarden 1.5 week later and I didn't want to go snowboarding with an injury. I always used to have a lot of bruises but never really thought anything of them.. I am a very simple person and I don't like to go to the docter. In my dancing carreer I always learnt that when you're not dying you can still dance or sport.. So that's how I always lived my life..

So I went to the docter. For the first time in about 8 years. I never ever thought I would have anything. I just thought maybe she'll tape my enckle. When the doctor saw the bruise on my enckle and some other bruises she got worried and had me run some bloodtests..

I went to the lab for the bloodtests on friday around 12. After that I went to the hospital to visit my grandfather. When me and my boyfriend letteraly walked out of the hospital the doctor called and told me I emmediatly had to go the ER to get my blood testet again. She told me they could not messure my blood platlets and that they had to run the tests again because they actually could not believe my counts where so low and I wasn't sick or anything.

So I went to the ER and found out they could not messure my blood platlets at all.. In one test I had only 3k (I think that's how you say it in English) and in an other I had none.. SHOCKING :( I'm never sick not even a cold or anything and now there were interns comming to see if I was really sitting there with those counts.. They could not believe it.. So they started me on dexamethason for 5 days..

The dexamethason got me really sick.. Thank god for my sweet loving boyfriend how took care of me becouse I couldn't even walk the stairs on my own.. after 5 days my counts where back up to 92 and after a week I was up to 131. So I was allowed to stop with the medication and celibrate it in de snow on my holiday.. I did have a lot of withdrawls on my vacation but was still able to enjoy it. Snowboarding went fine I just had to take a nap every day and wasn't able to carry my own luggage or grossery etc.

When i came back from my holiday I felt perfectly fine! I was confidend my counts were great since I fell a lot the whole vacation and didn't even have one bruise! 2 days after I came back I had to go back to the hospital for a new blood test.. And my counts where back down to 23.. Again SHOKING.. the docter wanted to wait another 3 days to see if they would drop any further.. That wednesday my grandfather died very suddenly wich was another big shock..!! On firday my counts dropped to 13.. So back on the dexamethason.. This time for 3 weeks.. 4 days on medication and 3 days off..

This time I have different side effects but still they have so much influence on my life.. :( I am hungry all day!! Wich is new for me because I never really cared for food.. I already gained 2 kg because I can not control my eating.. I am also unable to sport since I almost vaint after running one round.. I feel like my life is passing by and I'm standing still watching from the side line.. I can not really have a normal conversation since I can not come up with words.. It's impossible for me to follow conversations with several people because it is to much for my brain..
I just feel like my life is on hold..

Now I'm on my last week of dexamethason and I have a new docters appointment over 2.5 week.. On my last check up my counts where back up over 300k wich is great!!! But we already new this would happen with the dexamethason..The only thing is.. how long whil they stay up for..

I really really don't have the time to be sick! I'm in my first year of school.. I have a very active life and now everything is falling apart and all I can do is wait and wait and wait.. Im also very scared.. even when my counts are back up.. I don't know when they are back down and they've already proven to be able to drop very fast.. with in a week they can almost disappear.. I now I'll be check very regulary but this can always come back.. I do a lot of team sports and quitting is NO option! Because that is my life.. I don't have anything to life for if I can't dance and play sports!

I talked to my docter about removing my spleen.. I just feel like this whole medical treatment thing is great for people who life a normal life.. People who do not sport several times a week and try to make a living with sport. My whole life is filled with sports.. and now I have nothing.. I already had a problem with depressions and now I feel like I'm in this black whole with np light at the end of the tunnel..

What do you think? Shouldn't I just het a splenectomy? I know it only helps in 70% of the casus but I'm willing to take that risk.. To me the impact of having to go on prednison of the dexamethason doesn't work for a long time (wich I don't tink it will) is way to big! It is ruining my life.. If they just take my spleen out I don't have to be scared all the time.. If I fall of get kicked or bumb into anything..

I don't see how I can life with this.. Please help me..

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #870

  • tamar
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Hello Joya,

I'm glad you posted. You will get a lot of good information from people here. I'm sorry you're having to go through this, and sorry to hear about your grandfather.

The most important thing to know is that you can get your platelets up--and if one treatment works, others might, too. Each has positive and negative things to consider. Steroids like dexamethasone can cause weight gain and depression. Dexamethasone also might push you into remission, so you might be almost done with ITP for a long time (or even forever). I'd say it's worth waiting and seeing what happens.

Yes, you can have your spleen removed, but most people do not choose to do that as quickly as you are considering. Why lose a part of your body when it might not be necessary?

I was on prednisone for 6 months, and it was awful. Then I used Anti-D for several years, just a few times a year. Then I tried a low dose of rituxan in February 2008. In September 2008, my platelets went above 100K, and I've only had one count down in the 80s since.

I chose not to have my spleen out, and now I am glad since my platelets are very close to normal. If I had not been able to get them there, I might've tried a splenectomy. I would not have made a quick decision about it though.

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #871

  • CindyL
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Welcome, Joya. Sorry you are going through all this, and sorry to hear about your Grandfather.

I waited 2 years to have my spleen out, and I am in the same boat as I was before I had it taken out. Being as young as you are, you might have a better chance of remission, but like Tamar says, there are other treatments to consider. What did your doctor say when you asked him/her about removing your spleen?

Take a deep breath and relax, believe it or not, it does/will get better! :)

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #872

  • julia
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Hi Joya,
Glad you found this forum, read up on the ITP, relax and you will be fine. Steroids mess with your eating, sleep, emotions, body & mind. Just remeber these are side effects and you will get through it! Dont hit yourself if you can't do all your sports at the min it will get better. Docs seem to be amazed at people walking around with low platelet counts. You will become more experienced with ITP than a lot of doctors, you know your body and listen to it.
I was admitted 3yrs ago with a count of 9k steroids stopped working so i tried Azathioprine (Imuran) and my last count was 275k i refused a spleenectomy.
Take it easy
Julia

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #873

  • Angel85
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Hi Joya

Sorry you are going through this. I think you need to just take a couple of deep breaths and try to relax.

I don't like steroids either, but there are other treatments as well, there is a lot of information on this site about treatments, so have a read up of them. I wouldn't be considering a spleenectomy as quickly as you are, my doctor has advised me that would be a very last option for me, so i'd look at all the options and take my time deciding what is the best treatment for youself, removing your spleen isn't always the best option.

Hope everything goes well.
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

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #874

  • tortie
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I'm surprised they haven't tried IVIG or Anti D as your counts were very low. They could have given you the dex or pred with these. It might be good to find out how you respond to these and how long they work for. They don't normally last longer than a month though. There is also Rituxan and it can give better, more long term results.

You're right to wonder how much to give of your lifestyle to this. It is a personal decision and a tough one. Don't let the steroids decide for you. They are the worst treatment for all your side effects.

Maybe think about trying Rituxan. Some of us here have tried many treatments and they didn't work and some have tried splenectomy and it didn't work.

Just make sure you're 100% comfortable with your choice.


I hope you find your answers.

Michelle

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #875

  • Sandi
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Hello Joya! I'm glad you found us. ITP is scary at first. We have all been there. I've had counts as low as yours were and although it's scary, many us have lived through it just fine. You'll be okay.

I didn't think of myself as "sick" with ITP; I just went on normally and decided that I had to manage ITP the best I could. There are other treatments and you did start on a nasty one. Tamar is right - you could get a nice remission from Dex. Sometimes counts stay up after treating. When your counts are up, you can be as active as you want to be.

Do your research before you make any decisions and read as much as you can here.

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #881

  • juliannesmom
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Joya,
Don't jump to have your spleen removed just yet. You started on a treatment that does have nasty side effects, but can be very effective for some. Some folks here take dex five days a month and enjoy the rest of the month with good counts. (It didn't work for my teen, as it raised the counts nicely, but they dramatically crashed upon ending the med.) Some folks like prednisone better than dex, because the side effects, while nasty, can be less dramatic than with dex.

My teen was diagnosed just before her 13th birthday. The first few months of counts were low except when treated, and we really felt we were on a roller coaster. She was admitted to the hospital four times in one year. Twice was for low counts, and she had IV immunoglobulin gamma (IVIG); once was for a nonstop nosebleed, treated with IVIG; and once was for side effects of the IVIG. We like IVIG as a "rescue" treatment for severely low platelets, because she got several weeks of good counts, and usually plateaued after at a safer level.

Remission does occur, even in adolescent and adult females. About fifteen months after diagnosis, my daughter had a really good count with no treatment. After that, her counts stayed in a safe, but not as high as normal, range. Then, about two years after diagnosis, she had a perfectly normal count, and her counts have been normal or near normal ever since.

You don't have to have a normal count to be safe, but the count and symptoms do affect what you can do physically, and the risks you can take in sports. When Julianne's counts were in the twenties and thirties, she was limited to mild tennis, and walking or running on a paved smooth track. When her counts were over 75, she was allowed to resume volleyball (with a risk of a ball to the head) and basketball (which is very physical). She now does anything she wants.

If you get a splenectomy, you may find it doesn't work. (Many here have had a futile splenectomy.) Then, your treatment options for ITP are limited, and you have set up a lifetime risk of infection. (Antibiotics every time you have your teeth done, or minor procedures, and some have to take antibiotics daily for life, all because they have no spleen.) You have a spleen for a reason. If you can manage ITP and still keep your spleen, you need to try to do that. This WILL get more manageable and tolerable as you learn your body's way of dealing with ITP. The body often compensates on its own. We found that my teen soon tolerated low counts better than she did initially, and didn't bruise and bleed even at low counts. Also, vitamin C did not help her counts, but did seem to help with vessel integrity (meaning less bruising, less petechiae, less bleeding) when her counts were low. If you are prone to nosebleeds, keep nosebleed supplies (water, nasal spray, tissues) on hand, especially when you are in sports.

Hang in there.
Norma

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #889

  • Joya
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Hey Everybody,

Thank you so much for the quick and sweet responses! It feels great being able to talk to people who are going of have goon threw the same things as I am at the moment.

At the moment I am on my last two days of dexamethason and I have a new check up in 2.5 weeks. If my counts are still up by then I'll have to do regular checks to make sure they stay up but if they fall again the doctor wants me to try Prednison. I'm defenitly going to read more about Rituxan. It is a little bit difficult for me to read the iformation in English. My English is pretty good but I am to familiar with all the medical terms so I'm going to try to find the information in Dutch..

My biggest concern with having ITP is the waiting. Not knowing how what my counts are. I know it is possible that after this term of dex I'll be able to keep my counts up without medication. The thing is nobody knows for how long. I just do not know how to life with that uncertainty.. My counts have proven to be able to drop from a very good level to none in a week time and I am so concerned that my counts will drop in between two check ups. And I am the kind of person, ting always happen to me! I always fall during practise of get kicked or get a ball to my head. And i do sports 5 days a week. All kind of sports basketball, volleybal, football, dancing, american football.. This is al included in my study.. And apart from that I work in a gym teach aerobic classes and dance 10 hours a week next to school.. (at the moment I had to give up dancing because it was impossible to do with the medication)..

The ITP is constantly in my head.. Don't fall you do not know how high your counts are.. Watch out for that ball.. Don't pump into somebody.. It's making me paranoid and I just do not know how to get my mind to stop thinking about it 24/7..

My doctor agreed with me that this is not something I can really fit in my lifestyle and he is very open to my thoughts wich is great. Ofcourse he told me he would not get my spleen out any time soon.. He really wants me to try the Prednison first if my counts drop again.. (Wich I am really not looking forward to..) I know maybe I'm thinking to far ahead.. Maybe my counts will be fine for the next few months.. But I just can not stop thinking about it..

I talked to my mom about the different treatment options and we decided that I will try the perdnison at least ones.. And if this does not work I will get a second opinion to get the prespective of an other doctor.. I know it might not help to get my spleen out but if it does it would give me a much safer feeling to life my life and do the things I want.. Maybe it is just a mental thing.. Living my life knowing my counts might be low.. I just do not see how I can do that..

I just wished there was a way of messuring my counts at home.. That would make it all so much easier for us all.. If we could just messure our counts when ever we felt like it we could life our lifes being sure we are not taking any risks with our lifes!

Thank you all so much for the support it is really making me feel so much better knowing there are people out there that are willing to help me dealing with all of this!! I can not tell you enough how much better it makes me feel reading all your responses!!

Joya

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #895

  • Sandi
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Joya:

You'll figure it out. It takes time to accept this and find a way to deal with it. You will.

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #896

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Joya:

Here is the most current information regarding splenectomy:

Splenectomy. Eighty percent of patients respond to splenectomy, and response is sustained in 66% with no additional therapy for at least 5 years103–105 (supplemental Document 8, Recommendation Box 6). Many patients without a complete response can still expect a partial or transient response.15,106 Approximately 14% of patients do not respond and approximately 20% of responders relapse weeks, months, or years later103 (evidence level IIb).

Complications of splenectomy. Complications of splenectomy include bleeding, infection, thrombosis, prolonged hospitalization, readmission to the hospital, and requirement for additional intervention.104 Reported complication rates vary considerably30,103,104,107,108 and may be greater in patients aged 65 years or older.29 In a recent systematic analysis, splenectomy complication rates were 12.9% with laparotomy and 9.6% with laparoscopy; mortality was 1.0% with laparotomy and 0.2% with laparoscopy.104

Because ITP22 and splenectomy109 are both associated with thromboembolic risks, ITP patients should receive appropriate postoperative thromboprophylaxis.

Predicting response to splenectomy. There is no widely accepted test predicting response to splenectomy. Response to oral corticosteroids or high-dose IVIg has a low predictive value110,111 (evidence level IIb). Indium-labeled autologous platelet scanning may be the most sensitive predictor of response to splenectomy, but here too studies vary.112,113 When scanning reveals splenic platelet destruction, approximately 90% of patients respond to splenectomy.112 This test is currently limited to several research centers, but if available may be useful before splenectomy (evidence level III, grade B recommendation).

Accessory splenic tissue (evidence level III/IV). Imaging techniques show accessory splenic tissue in up to 12% of splenectomized patients and almost all is removed during surgery.114 In patients who relapse following an initial response to splenectomy, assessment for accessory spleen should be considered. However, in patients who never responded to initial splenectomy, response is extremely rare.42,115

Prevention of infection after splenectomy. Splenectomized patients are at lifelong risk for uncontrolled infection with a poor outcome from Streptococcus pneumoniae, Neisseria meningitidis, and Haemophilus influenzae.116,117

Patients are usually given prophylactic polyvalent pneumococcal, meningococcal C conjugate, and H influenzae b (Hib) vaccines at least 4 weeks before (preferably) or 2 weeks after splenectomy and revaccinated according to the country-specific recommendations (evidence level IV).118,119 In patients who have received rituximab in the previous 6 months, vaccinations may not be effective. Vaccination for these patients should be readdressed once B-cell recovery has occurred.

In some studies, asplenic patients were given long-term antibiotic prophylaxis (phenoxymethylpenicillin 250-500 mg twice a day or equivalent, or erythromycin 500 mg twice a day).120 However, the benefit of lifelong antibiotic prophylaxis is unproven121,122 and the risk of late infection is quite low, and therefore no consensus has been reached.123

A practical policy is for splenectomized patients to have a home supply of antibiotics (eg, penicillin VK, erythromycin, or levofloxacillin) for use in case of a febrile illness. Patients should be educated about the risk of postsplenectomy infection, including the need to go to the emergency department if fever higher than 101°F (38°C) occurs. In addition, cards should be carried to alert physicians that the patient is asplenic; some patients may wish to wear alert bracelets or pendants.

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

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Re:Please help me!! I'm SOOO scared../ Nosebleeds 11 years 11 months ago #906

  • Cyrano
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Try Vitamin K. I used to have nosebleeds at a minimum dayly when the season changed in fall and spring, for about 2 months. I happened to see something about Vitamin K in the "Eat right for your (blood) type" book and gave it a try. For 2 years, during the critical time i took Vitamin K. Now I don't even need to do that anymore. My brother in law was recently diagnosed with ITP and started having nosebleeds... so right away I gave him some and it seems to have stopped his bleeds. :) I don't know if this will work for you but what have you got to loose except your nosebleeds? No cauterization! No wads of cotton up your nose, etc.

Best way to stop one once it starts is pinch you nostrils for about 5 - 10 minutes. My life with nosebleeds started around age 9 - it seems like i was bleeding forever and the doc tried everything... finally he says have him pinch his nostrils for 10 minutes. It worked! ??? what the heck. why didn't you start with that! :blink: If you don't have itp only a couple minutes is required, with itp it may take as long as 10.

OK I hope that's helpfull. B)

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #909

  • Joya
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Hello Sandi, thank you very much for all the information! Ofcourse I read a lot already but this was very clear! It does make me feel like a splenectomy would be something to consider if the Prednisone doesn't work. But maybe me counts will be okay for a while so I just have to wait and see..

Hello Cyrano, thank you for the information but I have no problems with nosebleeds.. I never really had anything but severe bruises.. I bruise very easily and before I went on my meds I used to have at least 10 bruises on my legs.. Sometimes as big as 15 centimeters.. I can't even remember ever having a nose bleed so that is not an issue for me.. But still I'd like to thank you for taking the time to type me your message!! :)

Joya

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #911

  • tofer
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Joya
I know it seems like forever you are an athlete and the thought that you might not be able to depend on your body is very scary. You should take some time...read all that you can about treatments. You seem to be getting good results from the steriods you should take advantage of that time and listen to what others say. Having your spleen removed at your age is a huge step.

Read Read Read open a search engine look up the words you dont understand, and read some more.. Eat well, sleep, and allow yourself to heal. As long as your body doesnt hurt too much to dance then DANCE. Just be careful doing things that you might get cut doing... you know dishes, cleaning house...<giggle>

I have survived 10 years with a lower than NORMAL count. Mine is about 35k and stays there most of the time. I work, drive, even do dishes <yuck>.
I have found that pineapple juice helps the bruises break up faster. Wont stop them from coming but helps them leave faster...

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #917

  • julia
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I found eating cooked broccoli and raw or warm spinach everyday helped too. They are naturally high in vitamin k and naturally tasty. Vitamin k is supposed to help with clotting.
Julia

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #974

  • Joya
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Hey everybody..

I finished my dex treatment on monday.. So now it's detox time..

I had a question.. Has anyone of you ever had the feeling they were mentally weird or something from the medicine? I feel like I'm num to everything.. Just lying around, watching tv not caring about anything.. Unable to follow conversations.. It feels like my body is here but I'm not.. Like my innerself is slowly dissapearing..
I know it sounds a bit weird and stuff.. But I was just wondering if anyone of you ever had anything like this..

Joya

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #977

  • eklein
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Joya,
Yes, one or two other members of this forum have posted they they experienced the exact same thing, an out of body kind of feeling. It went away as the drug wore off. I never had dex but I wanted to let you know in case they didn't get to post soon. Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #992

  • Sandi
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Yes - I felt that way. I was very disconnected from myself and didn't care about anything. My sister was having emergency surgery and I just didn't care. It was very weird to feel that way, but it will fade.

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Re:Please help me!! I'm SOOO scared.. 11 years 11 months ago #998

  • gsh
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Joya - the 5 or so days after a pulse of decadron were the worst. Just stick it out and you'll start to feel normal soon.

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1019

  • tofer
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oooooo yeah the steriods do that. personally i did not do well with the steriods. besides the whole my body no longer felt like my own. my mind, well lets just say that my mind was no longer my own either.

i became very paranoid....

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1075

  • Joya
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Hey everybody,
Just a little update..

I started taking vitamin pills a few days ago.. And maybe it is becouse I am off the dex or maybe it is the extra vitamin but today I felt a lot better.. Not great but a lot better.. I spend some extra time with my boyfriend and cried a lot and now my mind is a little at peace.. So today I did my hair again did my make up and I am going to a friends birthday :cheer: (I find doing my make up very hard cuz my face got so fat the last weeks.. It's hard for me to look at.. But oh well.. I don't have to look at it all day :) )

I read a lot about the natural treatments and dieets etc. And decided to talk to my doctor about this.. I want to get myself tested for allergies to see if I have to make any changes in my eating habits to make sure my imume system is as calm as possible.. After reading a lot of sites etc I found that a lot of people benefit from doing this.. It might not result in a direct climb of my counts but I think it will be good for my body..

I've been thinking a lot.. And I haven't been living as the most healthiest person.. And I decided I want to make some changes and be as healthy as I can be.. It might not have direct results on my counts but the healthier I am the bigger the chance my ITP will go in remission.. I know it sounds logic but it took me 3 weeks to get it clear in my head..

That's it for now..

Thank you all soo much for the information and support..
It really helps me out a lot! And makes me feel less alone in this!

Joya

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1103

  • juliannesmom
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Joya,
I'm glad you are feeling better and in better spirits. I've encouraged my teen to be as healthy as possible in every way possible, not only in the hopes of a permanent ITP remission, but also so that she can better withstand ITP and its effects. She's not so good about taking the vitamins, but I notice that when she complies with the vitamins, eats a healthy diet, gets enough sleep, and exercises sufficiently, she's in a better frame of mind, and she appears healthier (better color, better skin, etc.). I'm sure you're going to find the right way to deal with ITP.
Norma

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1662

  • Lorie85
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I have also told my dr's i would like my spleen!

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1672

  • Joya
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I'm still concedering the splenecomy.. But first I will try Rituxin.. For now my counts are good.. at least they where on friday (154) but that's a drop of 200 counts in two weeks since my counts where 354 when I finished the dexamethason treatment.. So the doctor expects my counts will drop further within the next two weeks..

I told him there was no chance I would take Prednisone.. And luckily he fully understood.. He was very open to concedering Rituxin.. And if this doesn't work I'll have my spleen removed since I don't have the time to try out 2000 different treatment options.. My study and life is suffering to much atm.. Wich makes me depressed, wich can't be good for my counts.. I have a great hematologist atm, but he is leaving in two weeks so I'll be transfered to another hospital wich is closer to home.. Curious to meet my neem doc.

Hope everybody is doing well..

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1681

  • ddunn
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julia, please tell me more about Azathioprine. I dont want a spleenectomy....and this prednisone is driving me insane?!!!!!!

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1683

  • snowgoose
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Hi, Azathioprine is an immune suppresent drug. Please see the treatments page for more information. Have you considered the newer ITP drugs that actually stimulate the immune system to produce more platelets ie: Nplate and Promacta?
Vanessa :)

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1710

  • tofer
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joya
enjoy that your friends are feeling well... if they offer to help you take them up on it.
Enjoy your nites out, eat fresh food if you can... sip on one drink for the nite along with lots of water. If you can keep some of the normal stuff you use to do going with just a few modifcations. Then you wont be so angry and feel so deprived so depressed.

Being depressed is part of having a serious condition. Depression comes before you accept and learn to move on. Like i said before you need to read EVERYTHING you can that helps you understand your ITP. Then you will begin to feel better about this less depressed... and less deprvied of a life. Understanding the info that you read is difficult sometimes open a search engine so you can put the big crazy medical terms & words in there find out what they mean and go back to the original reading. keeping them both up at the same time helps more than i can tell you.

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1728

  • Joya
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Hey Tofer,

I already sufferd from depression before being diagnosed with ITP.. Its genetic My father and uncles all suffer from depression.. I went to seek for help for my depression 1 week before I was diagnosed and it takes such a long time before you are in the right place for the help you need.. I'm seeing a therapist tomorrow.. And will finally start a help-program in April.. Hope it helps..

atm I just feel terrible.. Broke up with my boyfriend, had a huge fight with my mom and aunt, have exams in 2 weeks, I'm tired and just feel completely alone.. Alone in this world.. on my own.. It just feels like everybody wants to be there for me as long as I say I'm doing Oke.. but when I really need someone to talk to or to help me there is nobody there.. Nobody understands.. everybody is living his life and I'm standing on the side looking at everybody having fun.. I really really hate my life.. I know it might sound like I'm wining but I seriously do not know how long I will be able to deal with this all.. I feel like I'm slowely disapearing.. till all there is left is a body with nothing inside..

Pffft ITP isn't even the cause off my sucky life.. it just made it all so much worse..

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1730

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Joya:

I'm glad you are getting help. You don't sound like you are in a good place. Just know that things will get better....there is a light at the end of the tunnel.

It's hard for people to understand if they haven't been through it themselves. Years before I was diagnosed with ITP, my Mom had cancer. She was on high dose Prednisone and hated the side effects. I could not sympathize at all...I'd never had side effects like that and didn't understand it. I was sad that she had cancer and was very supportive there, but couldn't fully get her complaints.

After I was diagnosed with ITP, I understood that my family and friends couldn't possibly understand, so I came here. I didn't depend on them and after a while, realized that I would rather not depend on them. I didn't want my kids, husband, mother, and friends to know that I was having a hard time....I wanted them to enjoy me. I dumped here and nobody in my life ever got tired of me.

Keep in mind that the steroids are messing with your head. They make you feel paranoid, out of control, you have weird thoughts and you feel depressed and disconnected. That will get better, I promise!

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Re:Please help me!! I'm SOOO scared.. 11 years 10 months ago #1737

  • ddunn
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Joya, I am so sorry you are so down and depressed.
Where do you live?
If you lived close, I would drive to you and we could have a nice long chat. Try to get some rest, that may help. I know i have not been sleeping well and have felt pretty crappy, plus i work nights. I came home this morning, took 2 tylenol PM's on top of that wonderful big dose of prednisone, and slept for almost 6 hours!!!!!! I feel sooo much better!!!!
Keep your head up, I promise it will get better.
What caused you and the BF to break up? Is he having a hard time dealing with the ITP/ etc.?

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