Sticky Blood-Hughes Syndrome Support
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Scared to tell my doc I'm going to APS Doc & not him Need advice on how to tell him w/o hurting his feelings!

Hello I hope everyone had a Merry Christmas and mostly pain free!!! I just read About Lynn starting Heperin injections & jetjetjet giving me great advice on my decision to stay with APS specialist! I must thank you all for such great advice! I need y'all again PLEASE! I know this sounds whimpy, but it's who I am! I've been going to this HEMOTOLOGIST for 13 years now. He's been treating me for another VERY RARE blood disorder cald PV/Polycythemia Vera! In 2010 only 65,000 people in USA had it! It's mostly men in their 60's, I'm a woman and had it since 1998, at age 45! I was DX'd in 2004, but DX'D myself in 1998! I never went to doc with it cuz I was sick and tired of being told to go c a psychiatrist or it was all in my head! I've ALWAYS had hi white Blood cells/WBC & always needed an explanation from my primary in order to have surgery! My GP at that Time did me a favor & refused to give me anymore notes to get surgery! The Surgeon who was doing the surgery asked his personal physician a favor for him and take me on ASAP as a new patient! I had the surgery and wen my RBC's My Hemoglobin, My Hematocrit, Lymphocytes, My iron all started goin way up, my primary made me c my Hemotologist & I walked in and said I have Polycythemia Vera! He believed me & was tested including bone marrow biopsy & several more tes! I came up positive! It is a precancerous condition that in one day can go into the exact opposite of of all my blood tests and revert into LEUKEMIA! I'm sorry for this long explanation, but scared because who will treat my PV wen I tell him I don't want him for my APS, but still want him treating my PV??? Dr.,Cromwell told me b4 I went to her she knows nothing about PV! How do I tell this Man, whom I love, after him treating me so amazingly with PV that I don't want him! He's already spoken to me very firmly and has never b4, cuz I've been informing him af the mistakes he mad! I did it diplomatically and he took I well then, but don't think he's too happy with me now! When my son passed away, I had emergency tummy surgery with diverticulitis! There was no need for him to come to c me in hospital, but came to c me because he wanted to talk to me about my sons' PASSING! There is an emotional attachment to this man! He's a religious Irish Catholic & has been nothing but kind and concerned for me! Nanny 23/ My sister Lynn has been on this site so she can understand my illness said she'd go with me, but she's angry and may tell him off Lol... PLEASE SOMEONE GIVE ME ADVICE ON HOW TO TELL HIM I DONT BELIEVE HIM AND AM LETTING OTER DOC TAKE OVE MY APS, but you can still treat for my PV! Thx to mi sis and you all, especially Lynn who had to go on Heperin and jetjetjet, and all on this site, I've already decided to stay with Dr. CAROLINE CROMWELL! Just need t know how to do it and who will treat me for my PV! So sorry this is so long, but needed y'all to know why I'm scared! Actually it's a NO BRAINER, just like my sister Lynn said! A HAPPY & Healthy NEW YEARS, BUT PRAYING FOR ALL OF US TO BE HEALTHY!!! WE CANNOT BE HAPPY IF WE'RE NOT HEALTHY!!! GODSPEED!!!

5 Replies

Maybe ask assistance from yor APS doctor. Many of us are treated for various illnesses by different doctors so it is quite common. At one time, many years ago, I had an eminent professor treat me for everything and I was one of his last three patients until he retired. IHis replacement told me that he was an exception, that I would need to come under a number of doctors in future and at one time I was seeing five or so. I decided to leave one because all he thought was needed for Hughes was keeping my INR at a certain (too low) a level. We agreed to part without bad feeling, though I hope that if I have to go for iron injections it wont be to him ;-)

Talk it over with the APS doctor would be my advice.

Best of luck


Thx Tim for responding! Do u have to go for iron injections due to APS? I am confused because my other rare Blood disorder, I have high iron or iron stores! I guess I must find a PV specialist! Not sure they have any cuz it's rarer than APS? I'll still need someone to take care of my PV! Oh well it will all go ok I just worry too much! Thx for your suggestion, I may have to do it! Godspeed!


I dont have iron injections at the moment but expect I will have infusions shortly as pill and liquid form have caused me other problems. and we have given up on them, just waiting to see how my ferratin levels drop. There is no reason why your present PV doc shouldn't continue to take care of that aspect if you want him to.


Thank You for ur response! I greatly appreciate any response! This site has helped me immensely! Thank You all!!


Many of us have several doctors, I join all mine up with emails to make sure nothing is missed try not to worry. MaryF

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