Update + another successful pregnancy!

I no longer write or check this blog but I wanted to pop back in with this post to let anyone reading know that I have now had a second child with the assistance of Dr Gamal Matthias. I fell pregnant without IVF (biggest surprise of my life!) when my daughter was just under a year  old and saw Dr M for immune protocol.  I was on lower doses of pred and progesterone, and still injected cleaner daily and had 5 intralipid infusions throughout my pregnancy.
Do not hesitate to see him. Your fertility specialist may not be a fan of Dr M's methods but I've come to know so many women who have been unsuccessful after multiple rounds of IVF who are now mothers because of his immune treatment.

SUCCESS!

An update for those who have come across this blog looking for information on reproductive immunology.

I had a successful pregnancy with the help of progesterone pessaries until 15wks, Clexane throughout the pregnancy, steroids (prednisolone dose beginning at 35mg and weaning by 27 wks), and 5 x Intralipid infusions @ 10 days pre embryp transfer, 6wks, 11wks, 19wks & 27wks.

I gave birth to a beautiful baby in June. So far, so good!

My advice to others - if you suspect something isn't right, go with your instinct. Find an online support network and get as much information as you can. I had given up hope of ever becoming a parent until my immunologist found the magic protocol for me.

To update the costs - total ended up being about $30000, and worth every cent!

6 weeks 3 days...

And still pregnant.

I have had another Intralipid Infusion and am being monitored via weekly blood tests to check that hcg is rising (it is) and progesterone levels are good (they're great).

We have our dating/viability scan this Thursday. Optimistic, but can't let go of the fear that something could be wrong. I have no real reason to believe that it is, but it's really hard not to worry...

Cycle 7

Stim Cycle 3, Cycle #7. 

CD 1 was 20th Sept 2012.

CD1 - Phone clinic. Begin Prenisolone 25 mg.
CD2 - BT @ 7.30am - levels OK. Begin injecting: 150 Gonal F, 40mg Clexane. 25mg Pred.
CD3 - Gonal F, Clexane, Pred
CD4 - Gonal F, Clexane, Pred
CD5 - Gonal F, Clexane, Pred
CD6 - Gonal F, Clexane, Pred
CD7 - Start Orgalutran, continue Gonal F, Clexane, Pred
CD8 - Gonal F, Clexane, Pred, Orgalutran
CD9 - BT and U/S @ 9am. Gonal F, Clexane, Pred, Orgalutran + Intralipid Infusion.
CD10 - Gonal F, Clexane, Pred, Orgalutran
CD11 - Gonal F, Clexane, Pred, Orgalutran
CD12 - BT & U/S @ 8.30am. Pred. Stop Gonal F, Clexane, Orgalutran. Trigger with Ovidrel at 7pm.
CD13 - Pred. Jab free day :)
CD14 - EPU @ 9am (13 egss retrieved!). Begin 400mg Progesterone (P4) Pessary.
CD15 - Begin 100mg Doxycycline (antibitotic). Pred, Clexane, P4. 11 eggs mature but only 6 fertilised.
CD16 - Doxycycline, Pred, Clexane, P4
CD17 - Doxycycline, Pred, Clexane, P4
CD18 - Doxycycline, Pred, Clexane, P4
CD19 - Embryo Transfer. 2 hatching blasts transferred. Doxycycline, Pred (increase to 30mg/day), Clexane, P4 (increase to 800mg/day)
CD20 - 1 day past 5 day transfer (1dp5dt) 1 expanded blastocyst has been frozen. Pred, Doxycycline, Clexane, P4.
CD21 - 2dp5dt. Doxycycline, Pred, Clexane, P4.
CD22 - 3dp5dt. Pred Clexane, P4.
CD23 - 4dp5dt. Pred, Clexane, P4. Spotting in the evening??? Very light.
CD23 - 5dp5dt. Pred, Clexane, P4. No more spotting, light cramping. FRER @2pm = very faint BFP.
CD24 - 6dp5dt. Pred, Clexane, P4. FRER @ 7am = BFP, noticeably darker than yesterday!
CD25 - 7dp5dt. Pred, Clexane, P4.
CD26 - 8dp5dt. Pred, Clexane, P4.
CD27 - 9dp5dt. Pred, Clexane, P4. Organised early BT. HCG= 106!!!!!!!!!!!! BFP! P4 = 92
CD28 - 10dp5dt. Pred (35mg), Clexane, P4 (increase to 3 x 400mg/day). Spotting???!!!
CD29 - 11dp5dt. Pred, Clexane, P4. Light spotting. Follow up BT. HCG = 303, P4 = 147 :)

Estimated Due Date: 26th June, 2013...one day after our 9 year anniversary together.

So there you have it. IVF actually works! I was beginning to wonder. I do give full credit to my reproductive immunologist. I am certain that without his testing and interventions I'd still be transferring beautiful embryos into an environment that would just kill them.

I am worried as I have a tiny amount of spotting, but P4 is high so I can relax a little. It hasn't really sunk in yet. I can't believe this is actually happening to us. I feel like the kid in the David After Dentist video - "Is this real life??!"

Now to tell our families...

Trying to politely tell people not to take their fertility for granted...

People say the wrong thing to infertile couples all the time. Here are just a few of the things I've been subjected to: What Not To Say... . As a result, I pride myself on being tactful when speaking with people who have not yet begun their family. Maybe, like us, they've been trying in vain for years. Perhaps they haven't given it a second thought yet. Perhaps they're still waiting to meet the right person. Whatever the reason, I know not to ask "So, when are you guys going to try for kids?"

Recently, as my plight for a baby enters its 5th year I find myself wanting to say to people (pretty much anyone over the age of 30) "You know, your fertility isn't going to be around forever!" I don't say it, of course. But I want to. And the only reason is that I don't want other people to find themselves in my position where, despite having no indication that I might not be able to conceive, this is where they end up.

The first thing I'd recommend is for females to go and see their GP and have their AMH tested. AMH stands for Anti-Mullerian Hormone and gives a fairly accurate indication of a woman's ovarian reserve. If you have a low AMH, it can be a problem. It is widely known that AMH decreases rapidly in women as they reach their mid-late 30s. This link will provide some information on it: AMH testing. The test is non-invasive. It's a simple blood test that your GP can arrange for you to have done on the spot, with results back soon after. It costs around $70 and is not claimable on Medicare. But for the peace of mind I think it's worth it. I'm not suggesting that every female in their 30's should race out and have their AMH tested, but it is one thing that you can do. If the results are concerning then there are lots of options that could then be considered. If not, that's great.

For what it's worth, AMH is not one of my fertility issues. I actually have really high ovarian reserve, bordering on PCOS. (This was good in that I was not in danger of 'running out of eggs', but it does put me at risk of over-stimulating during an IVF cycle, hence my relatively low doses of Gonal F) At my first test in September 2010 (age 32) my AMH was 45.5. I recently had the test done again and am waiting for those results. I will be interested to see if the fall has been significant now that I am heading towards the age bracket that all Fertility Specialists dread - my mid-late thirties!

My point is this - if you are in your 30s and are delaying a family for whatever reason, please consider having this simple test done. You never know the heart ache it could save you in the future.

Intralipid Infusion - suppressing those NK Cells

A fairly new entrant into the world of fertility treatment seems to be the Intralipid Infusion. Early studies have shown encouraging success rates: Check this article out.

From my (minimal) research I understand that Intralipid is a sterile fat emulsion containing soya oil, egg lecithin and glycerol. It has been used for years as a nutritional supplement for very ill people. At some stage someone realised that Intralipids suppressed the immune system. Someone then said "Hey, maybe this will suppress NK cells enough in affected women to allow an embryo to implant without the NK cells trying to kill it off." Hey presto, it seems to work.

You can also have an IVIG infusion (intravenous immunoglobulin) - but at a much higher cost. Intralipid is the cheaper, synthetic version and, while not suitable in all cases (some need the IVIG), it is being used as a part of IVF treatment protocols with pretty good success rates.

Dr M's secretary books me in for my infusion on Friday 28/9 (CD 9). I arrive at the hospital at 2pm. By 3pm I am hooked up to my intravenous line and have about 2 litres of Hartmann's solution pumping though to hydrate me while I wait for the good doctor to arrive with my Intralipids. He is running late and arrives at about 5.30pm to hook me up. The Intralipids looks like a glass bottle full of milk. It's quite strange to see this white fluid pumping directly into your veins. The start the infusion quite slowly but speed it up after the first hour, then again after 2 hours. All up it takes about 6 house to infuse. They follow this with another 300ml or so of Hartmann's to flush the line through and I'm free to leave the hospital at about 12.15am. If I have another one (which I will if I get a BFP) I think I'll just stay overnight, as the 50 minute drive home at that time was no fun.

I did not experience any side effects. I did feel quite tired the next couple of days, but that may just be the IVF drug cocktail I'm on.

The Dr fee for this was $650, plus a $500 excess for my health insurance fund. I'm not sure of the cost of the actual bottle of Intralipids. I believe (although yet to confirm) that at least 2 more infusions would be recommended if a viable pregnancy is achieved. 

As a side note, the lady in the bed next to me was having an IVIG infusion which cost her $2250, plus excess for health insurance fund. She had been told by Dr M that she would require 5-6 further treatments if she gets a BFP. IVIG is a blood product and is a lot more expensive than Intralipids. It is the best option for specific immune issues, obviously determined the the treating Dr. 

A new direction

Following the last transfer (#6) I was so convinced it hadn't worked that I made a call to a Reproductive Immunologist, Dr Gamal Matthias, who specialises in recurrent pregnancy loss and IVF implantation failure. I learned about him through ladies on various forums that I read. He is one of 2 RIs in Australia that treat for Natural Killer cells and immune issues they way they are treated in the USA and UK (agressively). A lot of FSs are against the protocol he uses, but we're running out of options so we manage to get an appointment for early August to see him.

He is a lovely man. Very proactive and reassuring. He booked me for a Hysteroscopy (to check the uterine cavity for polyps, fibroids and lesions) and Endometrial Biopsy (to test for NK cells). I also go for more blood tests. Surgery was done the following week with a follow up phone consultation 3 weeks later. He found:

- 4 polyps in the uterus. Even one polyp can severely impede an embryo's ability to implant. They almost work like an IUD. So having 4 was not good. But Dr M removed them and said that other than the polyps there was nothing else unusual.

- Acceptable levels of CD 57 Natural Killer cells (uterus)

- High Levels of CD 56 Natural Killer cells (blood). If you don't know about NK cells here is an excerpt from a website:

There are several different types of cells used by the immune system which can determine whether the body will attack or accept the embryo. When this attack does occur due to immune system errors, it can continue to cause multiple miscarriages until corrected. One of the most influential cells in this respect is the natural killer cell (NK cell). These cells are, as the name suggests, designed to kill other dangerous cells and will do so when given an activating signal. In cases of immune system error, NK cells may mistakenly attack the embryo and the attack will continue unless the cell receives specific signals to cease. Certain tests can determine whether or not NK cells are attacking cells, as we have learned that there are many subsets of these NK cells and not all are harmful to the embryo.

Dr M advises me that he recommends an aggressive immune protocol to be used in conjunction with my next IVF/ICSI fresh stimulated cycle. He feels confident that my NK cell levels, along with the polyps have prevented my embryos from implanting and that this can be overcome.

The protocol (and I must stress that this is specifically designed for my unique immune issues and should not be used unless under the guidance of a qualified specialist) is as follows:

Prednisolone: Begin 2-3 weeks before anticipated embryo transfer with daily dosage of 25mg. Increase to 30 mg on day of ET. Increase to 35mg if pregnancy test is positive.

Clexane Injections: Begin between day 2-5 of cycle. Stop 2 days before and day of EPU, and none on day of ET.

Antibiotic - Doxycycline: Begin 5 days before transfer. Take until finished.

Progesterone Pessaries: Double the dose recommended by FS. For me, this will be 400mg once a day from EPU, then increase to 400mg twice a day from ET. 800mg/day total. Had to get this strength made up by a compounding pharmacist. If positive pregnancy test this may be increased to 1200mg/day, depending on my P4 levels.

Intralipid Infusion: 1-2 weeks before transfer.

I bring this protocol to my FS who really has no choice to agree to let me do it. If he didn't I would simply have gone elsewhere. He says he has been hearing good things about Intralipids but is against the high doses of Prednisolone. Oh well! 

I book in for my third stimulated cycle. It will be antagonist with Gonal-F (150) to stimulate follicle growth, Orgalutron (to prevent early ovulation) and Ovidrel (trigger injection). All these, along with daily Clexane (blood thinning) injections have made my stomach look like this:

It ain't pretty. The awesome bloating is also from the drug cocktail. I think I'm actually getting worse at giving myself injections, not better! I've never had this many bruises before. 

This cycle so far has seen me jab a grand total of 26 injections in 11 days into my poor stomach :( I think back to my first ever injection that I had to do. I sat on the couch for about 45 minutes before I worked up the courage to jab it in. Now I can jab 3 times in under 30 seconds!

I'll continue after EPU with just one Clexane injection per day. If I get a positive result this may continue until about 30 weeks of pregnancy, so I better improve my technique!