Feeling stupid,unhappy,a bit angry

My husband died in September of pulmonary hypertension and acute anemia. Did you know too many platelets can cause PH. We didn't our hemotologist didnt. Even though I know some MPD 101 the hemotologist said it would be ok in th 600-700. Stupid me didn't insist. ..He was on a lot of HU since 2006 Did you know you can get skin cancers frumpy being on HU for a long time? The hemotologist didn't. He had major hair loss all over his body, I wonder why? He never had a bone marrow check. At first his rest came back Jak2 negative. Our hemotologist then said that he defiantly had PV. But after a while my husband wanted to have 1 dr instead of a team. We switched to the hemotologist. When he got so sick with the breathing out cardiologist said it was because of the MPD. We changed right away to a wonderful hemotologist who took test that showed he was positive for Jak2 and his PV had changed toET. Every portal in his body was clogged with. small clots. He almost bled out from a pic- line? And guess what.....his bone marrow was spent. Do your research.... change drs. Speak up and be confident of what you know. Our dr. Maybe a good oncologist but if there was a way to keep him from seeing MPD patients I would try. Should have known about y'all sooner. Thanks for listening...

9 Replies

  • I am so so sorry for your loss . What a terrible time you have been through and very sad that your husband didn't receive the care he needed .

    I will keep you in my thoughts and prayers .

    Helen x

  • Vlaneybab-

    I'm sorry you and your husband went through all of that. Thank you for sharing your experience and wisdom. I do think it will help others get better care. May your memories of him be a blessing...

  • so sad

  • So so sorry that you and your poor husband had to endure all that. It really sucks that a lot of GP's and even hemotologist's cannot get to grips with this dreadful thing we have. We know our own bodies, but have to put our trust in these professionals. The good thing about here, we can learn from each other's experiences and hopefully be able to make informed choices.

    You are a very brave lady and I am sure that you will be most welcome on here on bad days to have a rant and rave at the world.

    God bless.


  • I am so sorry that you and your husband went through such hell and that you are still suffering and yet had the courage to share with us. My thoughts are with you. Mel x

  • So sorry for your loss. May God give you peace and rest in His love and compassion. Amen

  • I'm so sorry for your loss.not a bit surprised for your anger .i think this awful illness is still on the drawing board stage ,I think some doctors are still in the dark .stories like yours ,my lovely only add weight to my theory .if we get lucky ,live near a good training hospital ,with an oncology unit that's up to the latest information then lets face it ,we are quids in !! But how many of you tripped over this site by your own endeavour ?? We are teaching each other ,how to cope .and even more ,by sharing our symptoms and medications ,we are becoming more aware of these side effects that make our lives so difficult ,don't you all agree? I send my love and heartfelt caring to you .please do keep in touch ..twinkly. Xxxx

  • Like all the others, I offer you so much sympathy and can readily understand how you must feel, not least very let down. I so hope that the anger and sadness can be channelled somehow so that you are not left feeling like this, but in some way able to use what happened to prevent it happening to others. That needs courage and sure you have that in abundance. Thinking of you with great sympathy. Tinkerbell13

  • I'm so sorry to hear about your loss and can understand how frustrated and angry you must feel. There is huge support on this site. I don't submit too much but gain so much from all of the queries. I want to personally thank you for enlightening me on pulmonary hypertension. I had never heard of it and assumed once your blood pressure was checked it was okay. I plan on asking my consultant next visit. Thank you so very much for taking the time to relay this information to us all at such a difficult time. God Bless. Bruddery.

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