People with PH just want to be heard.. PHA UK member Sharon Grainger wrote to Emphasis to share her experiences of chronic thrombolic pulmonary hypertension (CTEPH). In this special letter, she reveals her frustrating journey to diagnosis and how surgery saved her life. er Graing Sharon id l a n d s t Wes M , y r u b d Ol . r people ith othe w y a r h o t w t ys lly know share m a e o r t e ’t n m ers to did re to oth portant isease, I e d h im t is t y h t u ll o a h e sed wit se it’s re messag s diagno is becau get the a h o t t w g I e in il m t it . n I’m wr tant for strated cause u H) in and fru ’s impor ainly be e it l n m e lo e is n (CTEP f a I io is g s e n r n Th li e o f t e r e e f r e and the ary hyp mselves it was pulmon find the c ’t li n o orse. o At the b d m y the bolism. ssively w ic thro e m n r e o g r o y so that h r r c p a h n ot breath osed wit a pulmo ness of ptoms g t n d r g m e o r y ia h e s s d f f y s u m e I wa af ter m ring fro go to th when I s er 2016 in 2012 as suf fe I had to w n d I a e . g e id e c Novemb b m e isease 011, I d ng with lly, my d as Day 2 was wro m t t a as is h ssness. r w h Origina C missed knew o on breathle s e e d n h o n t a f o tely dis o n y a a e i r d w o e a a s m time, o m ho w ch tg im octor w ould no r, I was take mu d o w e ’t t c h h n o T ic ld d ’. h u w ea way ack I co nic to se I went a linic as anic att . li c p e c n a in in fi g e lk n lk i y own wa ’d b av wa go to m d then I s ‘just h d at the n ld a e a u w iv o it r I r w t o a I t a t told th W hen I reathe in o I decided tha ster and g and b s a a b ld w o r e t e p g m i at et a pa as bein have a . me to g what I w spital to ristmas o y h b h C r hing d o t e e t me told c t f n p somet onvin as se pen, a c u w o ’t d I e e n , r r s k e o a ic t w oc tp ey o the and w to my d test tha raight t on as th t r h o s t e s r e s o im f a m d , d o s c n doctor lly the D and a d me to s back a estions ho aske ral visit was fina u e w It q v , . s e f r y s o o a r s t r e t lo put on doc tX So, af t om my al. Af ter nd ches en I was r a it f h t t p ll s s e a o m t c h o r e r e a phon D-dime olism. F ack to th ht. I had ary emb s sent b n ig a o r w ’t I lm n e u s r p wa m the ining of osis of a e 2016. and fro compla e diagn ntil Jun s h u r t h was o t n t surgery o o c g o d ht whic ally taye the d n s ig t fi I n a I h e , k h c n ic t a a h haler w sb ing VQ sc arfarin nd I wa ing dur eliever in w a h r r g d a e u n t n o a la c e s heparin of year halers. I was giv nstantly e and co a couple venter in a and so e is d r m c r r p h a e t n s w x e r e a m giv ed il the Fast fo n I was eath fro diagnos sn’t unt r e s a b h r t f w o o t o it s c s s t o d bu the yd an shortne helped, antly at o much ke up. M t d d a s a o n w h t o e c it m s m t ht. I wa idn’t see in my making I though asn’t rig hlebitis h. This d ing and w p it h s g t w e a t in r w m h a t t o t e s n’t gh to s ed to do d I could hink som ith what I thou t m n e o a t e e s d e lu is t b th lips tw nd star At first, iced my t and nex ainful a 6 that I o 1 p n n 0 e 2 io r o t f e c ls o w e f g e had a my toes chest in beginnin oblem ; at the tim r t with a s e p ir a in F e . m s ic f r t docto friend o d me an to no r referre ing it. A en I beg s o h t u c T ist a . o c s d s g y a le s. M at w matolog r e h o a t w h c d o e n d h t a nately, underst fe at the nd out could fi Unfortu ng my li . . i y t e e d is h n lu g t e b lo p if e s o at see as pital. wer tests to a rheum k to hos l like I w c o e n a d e e f b o h t t t o t n d n e d n and I w edicatio I starte logist a ther PE farin m aemato r o h a n a a w g o y t in m av back me of f P TO to me h to take This led . s a decided w m le b e pro what th SPRING 2018 emphasis 32
, r o t i d E r a De
