Hi there maybe someone can clear this picture for me a bit. To this group I'm new 😊. Since I was born I was sick a lot . Than I started school age 6 and I got bruised very easily. Test after test doctor's said I have Thrombocytopenia. I was stopped PE at school and was put on high dose of steroids which as you can imagine triple my size. I was not improving and age 7 my Spleen was removed. I was put on life long Penicillin and Folic acid and off you go.
I lived my life except every infection or virus took me double time to get rid of and antibiotics. Now the older I'm getting it takes one cold 3weeks to get better and antibiotics because by then I have sinusitis or chest infections or something else.
Since November and now I have been sick - cold which turns in to some sort of infection 2x = 6weeks. I mean you really get tired of being sick and tired. Beside this I have fibromyalgia, had 2x pulmonary embolism, migraines and epilepsy. So when one thing start's it offsets another.
Any advice?
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Bakery40
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Good Evening Bakery40, - I was offered a Spleen removal Years ago but declined just for the fact that is a determent to the immune system. What is your Count. Mine is 5+/-
Good morning 😊. I didn't think they do that these days unless you have an accident or something like that? Wow if you can avoid it , don't do it. I don't know my count , going to the hematologist in January.
Yeah sounds familiar, i have my spleen removed at age of 20 due to itp, now i am 32, my cold episodes also lasts 2 weeks atleast and will not go away without antibiotics. I am sick 2-3 times during fall and winter. I also have hypogammaglobulinemia. My count is around 300 these days, 2019 has been good to me i have to say. During 2017 and 2018 my count was 0-10, i still have marks from bruises during this period.
Thanks for your reassurance. At least I know ' it's not only me'. I'm going to see the hematologist in January because my B12 is low and GP don't get it how if I'm on Folic acid. Let's see. I guess our bodies are special I guess 🤔😁.
Hi there, I suffer the same and was eventually diagnosed with CVID - it's an immunodeficiency I was born with. I have very low immunoglobulin and after pregnancy it went really bad - I was never infection free. Before that I lived without spleen for more than 15 years, without antibiotics - only when I had infection I took them. Maybe worth checking your immune system.
Hi you might be right. Even now I went to GP yesterday after having a cold for two weeks and he tells me: you have chest , throut and ear infections 🤯🤔!? I'm like anything else ?! No wonder I felt so crappy. Anyway I'm going to see hematologist in January because my B12 is low and GP don't know how if I'm on Folic acid. I'm definitely going to ask questions.
You are welcome. My haematologist referred me to the immunologist. Apparently immunodeficiency can be an underlying reason for ITP. So definitely worth asking. Take care
I'm 24 I had the spleenectomy 3 years ago. It's much better than I expected. Sometimes my colds last a couple of weeks and need antibiotics. But sometimes they're gone in like 4 days. I think I'm the good case. Or maybe it will get worse in some years.
Hiya, when I was younger as I said I just got on with it and I don't think my colds lasted this long . I think the older you are your body start's to change. Especially if you have or don't have on top of that another medical conditions.
And you might be fine , I hope you will be and I wish you all the best.
My spleen was removed almost 40 years ago. There was an improvement in platelet counts but it did not last. Yes colds and flus last longer than for other people. I make sure to have the flu shot when ever it is available. And I have learned other ways to fight the flu. I have a very good GP who does house calls. I use streaming and nasal irrigation. Both help a lot. It is very important to get the pneumococcus vaccine every few years.
Hi Robert, thank you for your advice.😊 Yes I do get my flu jabs every year but they are just for one of virus. I have two school age boys and they bring all sorts of stuff from school 😉. I'm up to all the rest of my jabs is well - have a great nurse. It's great you find something which is working.
Do you live near the Canadian border? (I assume you are in USA.) The trivalent flu shot is available in Canada over the counter at pharmacies for a small fee. Or free for high risk people like us.) And the Pharmacist can administer it.
Lifelong antibiotics are no longer recommended after splenectomy as chronic use of antibiotics makes body resistant to antibiotics.
Flu vaccines, pneumonia, hemophilus influenzas type B and meningococcal and flu vaccines must be taken two to three weeks prior to the removal of spleen.
Antibiotics for emergencies should be kept handy for any infection with fevers.
Meticulous hygiene and avoidance crowded places with people coughing and sneezing should be avoided.
Travel precautions, adequate hydration and regular exercises and stress relieving activities to improved immune system is recommended.
Yes that might be now but not 32 year's ago. Than everything was different. I believe lots of chest infections was prevented by me taking a small - preventive dose of antibiotics. You know I agree with everything you said but when you have a bucket of other medical conditions it's not so easy put it in to practice.
Read the book: Gut: The Inside Story of Our Body’s Most Underrated Organ
by Giulia Enders. Antibiotics damages your gut health a lot, and if you read the book (an easy read) it will make you aware of how importance of your gut health is.
If people of the future will look back in time they will frown upon it, knowing that antibiotics was prescribed so often and easily in the 20th and the beginning of the 21st century. It destroys your (gut) health and thus your feeling of well being. The healthcare of the future will change dramatically in that sense!
After trying steroids, IVIG infusions, and Promacta as well my daughter had Spleenectomy in first week of October 2019. She is doing excellent by the grace of God.
Her platelets are now 236 K, for the very first time in last four years of her struggle c ITP
Hiya and thank you for your reply. Since my post I have seen a hematologist and she explained few things to me. 😊👍
My red platelets are 400k which is great, my immune system is and will be low due to not having spleen. They cannot test part of a immune system as there is not such a test to answer my question why do I catch all this colds and takes me forever to get over them.
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Anyone here who had bone morrow test?Will it help a lot?Is it painful?
Any ITP patient , living without medication? 
A little depressed.
My ITP Diagnosis
Antibiotics 
