1980 – Born with a hereditary blood disorder: thalassemia major. Basically my bone marrow made faulty red blood cells that died too early. Monthly blood transfusions along with a host of other medications ensue. Life expectancy with this disease is 20 to 30 years without a transplant.

1992 – Bone marrow transplant from my donor sister. The only real cure for this disease. The process my family and I went through is a story for another day, perhaps another blog. End result, successful transplant. I no longer have faulty red blood cells. Yay! However, much like a cancer patient, I underwent high amounts of chemo and radiation therapy which basically made me infertile.

2009 – love, marriage, hold the baby carriage…. married to a gorgeous man, AG, who loves me for me, with all of the above baggage! We decided we would eventually explore having kids, but were OK with ‘just us’.

2011 – start looking into my baby options… family physician referred me to Dr. G at ISIS.

March 2012– Dr. G was a fail. He attempted to give me a few rounds of estrace to build a lining and failed. Lining never really progressed past 4.0. Said he would think about what to do next and call me back. That was March 2012. Still waiting for that call….

Protocol for building lining:

CD1 -4: Estrace 0.5mg twice a day, orally

CD 5 -9: Estrace 1mg twice a day, orally

CD 10 – 14: Estrace 2mg three times a day, orally

CD 15– Ultrasound – lining check

Total Lining: 2.8

Try again:

CD1 -4: Estrace 1mg twice a day, orally

CD 5 -9: Estrace 2mg twice a day, orally

CD 10 – 14: Estrace 2mg three times a day, orally

CD 12– Ultrasound – lining check – 3.0

continue Estrace 2mg three times a day, orally

CD 14 – lining 4.0

continue Estrace 2mg four times a day, orally

CD 17 – lining 4.2

continue Estrace 3mg four times a day, 2 does orally, 2 doses per vagina

CD 19 – lining 5.3

continue Estrace 3mg four times a day, 2 does orally, 2 doses per vagina

CD 23 – lining 3.6 (?!?!)

continue Estrace 3mg four times a day, 2 does orally, 2 doses per vagina

CD 28 – ‘not enough’

Clinic gives up on me. Moving on.

Summer 2012 – notice my BP is a bit on the high side (Diastolic is always close to or above 100). I suspect new generic brand BCPs my pharma gave me. Ask family doc and she says stop taking them and lets monitor. Start getting hot flashes, night sweats, what is happening?! Also asked for referral to Hannam. Second opinion time.

August 2012  – First apt with Hannam. Did all basic testing and paper work. Apt with Dr. H himself in December. Ugh! BP is holding steady, but not much lower. Family Doc says stay off BCP for now. I am not too sure….

December 2012 – Dr. H. Love him. Seems like he knows what he is talking about. Dx POF (due to chemo and radiation). Finally, I have a word for this. And this explains the menopausal craziness. He refers me to POF specialist to help address longterm issues. Finally someone who knows what they are talking about. Dr. H believes I will be successful with DE. Agrees to let me do a mock cycle to see if my uterus can build a lining. I hold off till 2013…

April 2013 – 3 more mock cycles. Resulting in a maximum lining of 5mm at its best. Not sufficient. Advised by Dr. H that we should look to expand our family by other means. Considering adoption.

Protocol to build lining:

Cycle 1:

CD 1- begin Estrace 4mg pv (per vagina – how fun!) 2 times a day

E2: 64.49

lining: 2

CD 5 – Endometrial Biopsy

CD13 – lining 4.0

CD 20 – lining 4.1

CD 21 – Add Prometrium 200mg pv 3 times a day

CD 30 – stop pills

Cycle 2:

CD 1- begin Estrace 4mg pv (per vagina – how fun!) 2 times a day

CD 5 – Endometrial Biopsy

CD13 – lining 5.0

CD 20 – lining 3.0

CD 21 – Add Prometrium 200mg pv 3 times a day

CD 30 – stop pills

Cycle 3:

CD 1- begin Estrace 4mg pv (per vagina – how fun!) 2 times a day

lining: 4.3 (!)

CD 5 – Endometrial Biopsy

CD13 – lining 4.0

CD 15 – Nupogen infusion

CD 20 – lining 4.0

CD 21 – Add Prometrium 200mg pv 3 times a day

CD 30 – stop pills

March 2015 – Been on HRT consistently for 2 years now. Regular withdrawal bleeds got me thinking could endometrial function be restored somewhat? POF specialists thinks maybe, referral to new clinic: Mt. Sinai. New RE: Dr. Go(fellow) & Dr.C. One more go around the mock cycle!

April-July 2016 – 3 mock cycles with estrace patches, and pills along with one cycle using Sildenafil (viagra). See building a lining for the protocol details. Lining got up to 0.6 (!) Cautiously optimistic for the future. Government is now providing funding for one IVF cycle. But there is a waiting list. Our funding date is December 4, 2017.

July 2016 – discussing DE options with sister. Her own son is 6 months old so she cant donate now anyways. Needs to wait till she stops breast feeding. She says she and her husband are considering it.

January 2017 – More spots have opened up for government funding dates in early 2017. I jump on that. We are now booked in for April 2017(!). Meantime, sis says she doesn’t feel comfortable being an ED (this upset me much more than expected, mentally I was always prepared, emotionally not so much). Back in with Dr. Go to plan for IVF cycle. Clinic works with DEB USA for anonymous egg bank donors. Start looking at ED database. Getting ready for an April IVF start date. Expected cost for DE, cycle, meds, treatments etc.: $18,000 (that’s after the govt subsidy!). Feeling hopeful. Either way, 2017 is going to be one heck of a year.

 

 

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