From one extreme to the next! Does anyone feel like their body is letting them down :/

Hi, I'm new to this site, so I thought I would share my experience. I'm now 28 years old. I was diagnosed with ITP in 2009. My count wasn't too bad sitting normally between 70-90. I then fell pregnant in 2013, within the first two months my count had dropped to 9. I then began treatment with ivig every 4-5 weeks of the rest of my pregnancy to keep my count up to stop complications and for delivery. I was assured that my count would return to normal (well my normal) once bubs was born. I gave birth to a beautiful baby boy with no major complication. He was monitored very early as it can be passed to the baby but only for a sort period. Sure enough it was but luckily his counts did not drop low enough for concern. A month after bubs was born, we went for a check up and it was only because my partner insisted I ask for my bloods to be taken that I found out my count was again down to 9. I was put on prednisone and monitored with regular blood tests. Unfortunately the prednisone wasn't working after a while as my count kept falling to a dangerous level. I was then put back on ivig as well as prednisone to help my count. Unfortunately I ended up in the ER with a rare complication from the transfusion, aseptic meningitis :( it took about 2 weeks to recoverer. After that my heamatoligist decided that we would go ahead and do a splenectomy. At this stage I was all for it as my veins were collapsing due to all the needles, etc. My splenectomy went ahead Sept 26th 2013 by laparoscopic surgery. I woke in a lot of pain. I was in severe pain which the nurses at the time thought I was being a bit of a baby and so did I. I was sent home after a about a week, still in a lot of pain. I took a lot of pain relief at home over the next week and a half, but the pain wasn't improving. My sister dragged me to the ER ( to be honest I didn't want to go as I felt I must of just been being a big baby and I just had surgery so there is supposed to be pain after). This visit I seen triage, told them my symptoms and I was sent to the waiting room where there would be a long wait of 4 hours or more. As I was in so much pain I just went home. A few day later the pain was unbearable, even the strong pain killers weren't taking the edge off. So again I went to the ER, this time I was taken straight to a bed. The first Dr I seen told me that I most likely had heart burn, but took bloods and told me they are not doing a scan as he didn't think he had enough reason too :/ (sorry this is long winded) Luckily the Doctors had changed over and my new doctor sent me straight for a scan. The results came back for my bloods first and my platelets were at 1300 which was extremely high but sometimes expected after a splenectomy. Then the scans came back. They found about 5 clots, the main large one in my portal vein ( this is the main vein that joins your bowel to your liver). I was then told I was being transferred to another hospital and given blood thinning injections into my belly until my INR levels were at a better level then I would be put on warfarin. I was shattered as I done this surgery to stop the meds hopefully and instead I end up at the opposite end my blood clotting too well. The type of clots I had were a very extremely rare complication of the splenectomy (so please don't be worried if you are going ahead with this op). I was kept in hospital for about 2 weeks and also ended up with bowel problems due to the clots and being extremely constipated from all the pain meds. Since being home i have been put on the fairly new blood thinner called XARELTO as my body wasn't agreeing with the warfarin and my lvl sweet all over the place. I find it's a lot better then warfarin as it does not interact with everything, however it has no antidote so if bleeding occurred it could be bad,fingers crossed. I recently went for another scan to see how the clots were going and to see if I could get off the blood thinners (I like to call them rat poison) All clots were improving except the one in one of my veins that joins to my liver (sorry not sure of the exact name) so I'm back on thinners for a few more months in hopes the clot will behave :( . I have been told that if it does not clear I will more then likely have more issues with my liver later on. After all this I am left feeling really down. I always sit her and think about what's next. I think I have developed anxiety from all of this. I know I should be thankful that I'm here and there are people a lot worse off, but all of this is so overwhelming. My kids and partner keep me happy but I'm always on edge about what's to come. Thanks for taking the time to read my post :)

4 Replies

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  • OMG, looks like you've had a terrible time in the last few years. I am sorry to hear about all of the complications you have faced, especially after just having a baby when normally all that a mum wants to do is be there for the those special moments shared with a new baby. I wish you all the best for the future and I hope that you get better and healthier soon. Stay strong (it seems that you have) and all of this will hopefully go away soon, like it was all just a bad dream. Good luck xx

  • hi I have had a very similar experience. Counts of zero and as high as 1400. Aseptic meningitis, retinal bleed, blood blisters, drugs to increase the count, drugs to decrease the count, splenectomy. No blood clots thankfully, but one time I was rushed into hospital for an ultrasound because I was told I was having an abdominal haemorrhage - luckily I wasn't. In the space of 15 months I was admitted to hospital six times and attended hospital in between over 140 times. I share your frustration. My advice is look at your lovely baby and enjoy the wonderful things in life. Nicky

  • Oh my, you have been through a tough time. I hope it all settles down soon. I had mine when I was very young, I was 3. I'm 43 now. I think I remember, although very vague now due to my age lol, having a few problems like the count not going up quickly enough and having a tough time with steroids, but not as much as you have. Congratulations on the birth of your baby boy,focus on enjoying time with him and try not to worry too much. If you know something isn't right be persistant, you know your body. Hope lady luck shines a good light on you soon.

    Sheila

  • Ohhh!!!!! U really have gone through very tough time. I m 23 years old nd i m also suffering from itp for 6 years nd have also undergone spleenectomy, sreroid side effects, azathioprine etc etc. Bt now i amm somewhat stable on dapsone 100mg/day with counr around 50000 although sometimes fluctuats bt mostly goes up after that.. Dnt wry just chill nd look at your baby nd enjoy with full trust on god. All the best

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