update on me!

My splenectomy was done on urgent basis I believe as was in for 5 weeks and the counts didn't get higher than 1 if I was lucky whatever they tried.....:sick:

I was allowed home for the bank holiday weekend (May1994) and went back in and had the operation Wednesday 1st June 1994. In outpatients later my consultant promised me quite faithfully and I believed him 100% without question - I was niave in those days and considered consultants knowledge almost next to God - if not higher than God I guess (25years old so not that young but I was young).

18 month later the rash appeared and forgotten to ring Sheffield for whilst I had been 'discharged' I could ring if had any questions.... but totally forgot....

That consultant retired a few years ago but truelly has been eating his words ever since..... and was a favourite patient at one time as my spleen grew back. How they said it to me in laymens terms:silly:

Yes, my counts are livable with these days as only have a drop every now and then and I know the routine well which helps too. Though the new consultant is trying it without ivig for now and been on steroids best part of this year as had a drop in December and a drop middle of May. I think I managed about 1 and a half month of steroids so everyone will think my face is permanently round as I do get the moon look. Wonder when he put me back on ivig or try something different:whistle:

As a consultant/person I like him better as feel more at ease with him in manner though 100% trusted the last guy. But appreciate how this new guy is doing it different as 10 days in hospital were a pain because well enough most of the time though with aneamia hiccups from time to time which recover when platelets recover.... a

So am a patient who has done well out of splenectomy and had an easy time off it on the whole. Though what I will say, not to scare you but so you are educated - I was't educated enough - is to look after yourself well. I have had meningitis (2004) and Septicemia (2006) but mainly I think due to lack of communication on both parts GP and mine in all fairness as a result of no spleen. Meningitis was a practice for the septicemia and meningitis was a doddle compare to septicemia. Am seriously lucky to be here and with very little complication of it. My body recovers very well even if I kind of panic a little.

Seriously, make sure you are educated in what you need and the rest of your life be straight forward even if you do have platelet drops. Mine always seem to only last a week with the treatment - it the tapering that takes forever..... though I know why:P

Take care and enjoy life. Nothing heavier than a mug of tea at first I believe? Though we had a famiy holiday already booked to go camping in the french/spanish alps though had four weeks to do major recovery before going. I slept most of the way round though remember Andorra because it was cool there and woke up enough I think because it was cool.

Hope the rest of you are okay

Hey TImons,
Hope you are doing well. Have not seen you on in a while..
Shannon

Rhiannon,
That was a very informative post about your spleen and how you have handled your ITP. Does your new spleen that grew back work like the one that the doctor removed? Also, do you notice any certain activities, foods, stresses that might bring on your new episode of lower platelets?

I've noticed so far that being over-fatigued, over-stressed, and basically not taking care of myself brought on my last episode of low platelets. I'm trying to be a little more careful this time. I can tell when my body is really tired.

And, like you said, being careful of what you drink is important when you are sick.

Thanks again for the helpful information:)

Hello!
It's been a grip of time since I've been on. School is winding down and I've been busy tying up lose ends. I have been gone so much this school year and the last 3 weeks of absence left a lot of stuff unorganized. 1 more week and I get to relax for three months! My platelets have been bouncing around. They were up as high as 400,000 and as low as 85,000. I've been at 85,000 now for about 10 days. Hope its stabilizing. I have been working out quite a bit. Maybe that's helping. It sure is helping me feel like my old self.

Rhiannon, it is interesting what you said about your spleen growing back. I have a first cousin who had to have his spleen removed and they found four spleens! He has since grown 2 back! All 6 of his siblings had to have their spleens removed as well due to a genetic blood disorder. Their red blood cells are shaped funny and it was enlarging their spleens. I also have 2 cousins with RA. So maybe this ITP of mine is just a little genetic....:blush: Also, I had vaccinations for meningitis, hep. B, and pneumonia about 1 month before surgery. How does one get septicemia?

I am feeling so good right now that I want to live in the present as much as I can. My flower gardens are up in full glorious force and we've got all the veggies in. Hope you're doing well, Milly. I often think about Sandi and you and how you both are doing.

Terrie

I'm glad things are going so well for you!

Terrie, So happy you are doing so good, I am doing pretty good myself, the new medication seems to be doing it's job and like you I am at the stage of being really sick of worrying about it, just going to get om with living and roll with the punches when they come.

Wow three months off. I hope you are giving yourself a holiday away for a while. 85 is a great count for you, so look after yourself, take it easy and check in every now and again to let us know how good you are.

Terrie,
Glad to hear that you are doing well and going on with life. I, too, have genetic blood disorders in my family (father, brother). But, it has mostly been on the male side and not as much on the female side (I'm the first one). Hope you enjoy you time off--but do remember to rest when you can. And, 85 is a great count; the doctor did tell me that exercise helps to bring the counts up--but just don't over-do it.

I went in today and am up to 117,000. :laugh: My heme said that he doesn't want to see me for three months. He said the fluctuation is normal but its all within a good range. I agree. I am going to keep signing on to keep up with things here and see how people are doing.

You are wonderful, DeeDee and Milly. I appreciate your advice.Moderation is the key. I am working on fixing my diet too. I am thinking about going gluten free and maybe dairy free. I am reading a book called, Inflammation Nation by Floyd H. Chilton. He claims that diet had a big effect on his sister's RA. He's a doctor that works at John Hopkins Univ. Interesting stuff.

I just read today that the PDSA is thinking of doing a study concerning how our diet affects ITP. I really think that it does it some ways. I had myself tested for food allergies, but they came back okay; I think the blood test that the PDSA is refering to is different than doing the "pin prick" testing. I did notice that when my platelets are very low, if I watch what I eat, I don't seem to bleed or bruise that bad.

I'm really glad to hear that your platelets went up. And, it's so nice not to have to get a blood test for three months!!!

Wahoo, how good is that. Three months, no Doctors I bet it is a long time since that has happened so happy for you.

Hi Rhiannon,

I agree with what Milly said,enjoy no Doctors for 3mths and Iam so happy for you.
With regard to the comment about exercise, I had noticed it mentioned several times on different Posts, so decided to give it ago for myself.


Have just finished a course of Prednisone @ 40mg p/day. On a past trial Prednisone had done nothing for me, but DR wanted to give it one more go. This time I did moderate exercise(16min p/day)while on the trial and finished the taper today. My platelets have gone from 46-63. This time last year I was in the 60,s. Now thats the biggest jump I have had in 5yrs, looking back over my test results. Did the exercise help?? (who knows), but I do intend to keep up the exercise routine from now on. ON weekly blood tests for the next month so will be interesting to see if I stay up or drop again.
Benny.

Benny
Oops I may have been misleading. I do the exercise to keep down the weight when on the prednisolone. Sorry if you thought I meant platelets.

DeeDee
Only just seen what you have written. Sorry. I haven't noticed anything about different foods or activities. My first consultant always asked me if I done anything different. Since 1994 to 2011 I have done different things as such but nothing that strikes out. The only thing that came to any such link is last year I had scampi in a pub then bought scampi at supermarket. Not long after eating it I felt not right. I was at where I do voluntary work and was 'tired' of this not right feeling. They took me to casuality and the long wait to be sent home then called back to go in because they messed up my blood test because my count was 10. They redid it and the count was 37 so they quicky redirected me back to sheffeild as such. I would have contacted sheffield first if I had been at all suspect it was my platelet count at fault. I had scampi too that monday I had a further test and my blood had congealed. It never has done before so am blaming the scampi. And vary wary of when I have scampi again. Not before a blood test unless I ever get around to mentioning it to the heamo and done on a scientific basis. That is the only time am suspect of any food being to blame. What is in Scampi that could affect the blood?

tlmons
Sorry for not getting back to you for I not seen it before. After that first time when my spleen had regrown - the consultant checked the blood film every single time in sheer disbelief because he was wrong the first time one could say. But only that first time the spleen had regrown. They removed it because my count was low again and thought it was the spleen that made it low. 'I was his favourite patient for 2 seconds when he discovered what had happed in 1997. He sent if of to medical council but I heard nothing so don't know what they made of it etc' My case got him interested. For me I had no idea how rare or not it was so took it in my usual childhood approach stride about ill health. 'oh' and that been it kind of thing. This board etc weren't around in those days to understand that in England at least it was definately rare.
I know I hadn't any other spleens as he checked the blood film every single time. I think he was almost hoping perhaps, not for my difficulty but for his medical career etc.... Natually I didn't really understand as much as I do now. One assumes I haven't got another regrowth going on at this late date? Can they regrow after sooooo long and why am having a longer year of it that normal? hmm. After all it don't cost me any extra pain to ask the Heamo to check the blood film again just in case.
Sorry your brother? had to go through four ops. Though glad you are in range now. I have had 4 weeks of rituximab and the last est was 217. Now down to 5mg pred a day and next appointment on 19th. platelets dropped a little bit as bruising and a blood blister this week but ignoring them at that stage. Had that every time I get lower on the pred this year. And the continual ITP Throat that drives me nuts at times this year. In the past it has always been a pre symptom not that week but six weeks before approx. Its been ongoing and not continual but definately there. Never before but one shall see....in time

No one ever talks about ITP throat on here but the ward I go to, those docs and nurses know about it and not from me :-} It was them that clarified it to me when once as a undergraduate I went to the gp Docs and complained about it and looked down and am sure to this day he thought I was after a sick note to gain an extension for essays. He couldn't see anything. I didnt know then it an ITP sign. I have learned since. But this year its confusing because I still get it from time to time even after the rituximab

So what is an ITP throat because I've never heard of it either? What exactly do they say causes it?

Hi Rhiannon,
I was asking as I am affected by different foods and medication. I really react to medication! I've been this way all my life. I would probably do the best if I never took any medications. Just last year when I was in the hospital for two weeks, I was first having trouble with my lips swelling up (this happened way before my platelets fell). I also had some kind of mark on my lip that looked really weird. I kept going to the doctor for this problem. The dermatologist thought it was some kind of eczema of the skin. I did have allergy testing after being released from the hospital; but, before I had the allergy testing, I had to stop taking Sinequan--which I had been taking for about 15 years--but just recently had increased my dose.

Anyway, after stopping the Sinequan I had two things happen. 1) my lip problem went away and cleared up. and 2) my platelets starting going back up. Now, the platelets going back up could have been from the Decadron pulses (had these at 4 different times) or they could have been from stopping the Sinequan. I am not really sure. But I'll have to say I am affraid of taking the Sinequan again (it is listed as one of the meds that lower your platelets). It was a struggle not to take this med. as it has really helped me to relax and sleep better. But, so far my platelets have stayed up for a year. I have my next blood test in November. I went 6 months between blood tests--and I'll have to admit that I am scared at times that my platelets are falling back down; but, I just want to go as long as I can between blood tests. Another thing is that I do have a problem with chronic fatigue. I just take a nap when this overcomes me. In spite of being tired, I swim twice a week (40-50 laps) and I run once a week (3 miles). I do the swimming because you can always do this exercise--even with low platelets.

Hope you are doing better; and, I just thought this info on me might help you think about things you might be doing because our body changes over the years. I havn't been on the board for a while because my husband just recently had some surgery for a throat tumor (everything turned out okay). But, I was drained after all the doctor visits and worry. Am just now starting to fell more like myself.
Dee Dee

Hello!
I thought I would drop in and tell people that I had an appointment last week and my count was at 239,000. So I am doing well. I am trying to change my job to help ease the stress in my life. I want to stay healthy and working with at-risk kids can be very stressful. I have been riding my bike constantly all summer. I really think exercise helped my count go higher. But who knows. I have a question about prednisone but am posting it on its own.

Hi tlmons!
I'm so glad that you are doing well! I think that it is true about stress; if we can lower our stress--this does help a lot. I learned this from emailing Wam (or Bill) who wrote the ITP article TIC TAC TOE. He's been free of ITP for at least 25 years (he's a teacher in L.A, CA). He had told me while I was in the hospital to "get the monkey off your back"--in other words--get the stresses of your back! I'm sure it can work for all of us. My doctor told me, too, that exercise does bring up your platelets (I'm not sure where he found this out). So, I, too, try to exercise during the week--even if I'm tired (just take a nap first if you have too).

I'm really happy for you and that this procedure has worked for you. Just keep doing the best you can to keep your body healthy, and that exercise,too.
Dee Dee

Hi Terri, so glad that you are going so good, doing a big happy dance for you.

Sent you a message, let me know if you don't get it.