Why Does It Feel Different Coming from an IVF Coordinator?

The final plan is that if the hospital cancels me again next month, to go to private in November. (November is when we think we’ll have money, and Novemeber is what they suggested. Very cool.)

When I began assessing myself, the gynae called me to see her to collect the results of tests I’d asked her for. Sitting down with her, listening to her describe my FSH and AMH was ok. She was so hopeful and even said that she’d see me in October for a 6 week scan. (Yeah, she thought the hospital would stick to plan.) But I do admit that when I went and researched online, her hopeful words seemed TOO hopeful.

I sent my results (including the improved ones) to the private clinic and received a response this week. I have many reasons why I think the impact of reading the same prognosis affected me differently. This time, I’ve been waiting and waiting, and feel very uncared for by our hospital (which increases my feelings of fragility and vulnerability. Actually, scratch that. We ARE uncared for. To tell someone to come in post op if there are any problems, they tell you there are issues and you ignore them when they do come in… That IS being uncared for. And at such an emotional time as this!) And before, I assumed that we’d be treated at the time stated. Now I am not even sure of next month. And for Paranoid Me, this is NOT good.

So, when the private clinic’s very lovely-sounding IVF coordinator commented on how bad my FSH and AMH are, it stung. I felt bad that we’d been made to wait so long when things can only get even worse with time, I felt sad that my body is letting me down and acting like that of someone ten years older than me, and for the first time, I actually felt scared that we’d end up with a cancelled cycle. I’ve read about it. I’ve commented on a recent blog that I would rather go through and fail after transfer than to fail at even making an egg or two..but imagining it and seeing how big a possibility it actually is, made it worse.

I just want a baby. A living, breathing baby who I do not need to tell an adoption story to. (Obviously I don’t regret adopting, but one child has a present and loving birth mom, and one doesn’t. The latter causes me much pain.) I want to feel every awful twinge of morning (all day) sickness and unapologetically complain about how sick I am feeling. I want to eventually watch the bump (and my fattening cheeks) grow. Hey, I have Xhosa blood in these mixed heritage veins, of course I’m going to get fat, he he he 😉

I want it. And for the first time since April, I feel like my chances are indeed lower than I thought. If ‘normal’ women make such a few eggs at our hospital, what hope is there for me with so much against me? (For those who don’t know, our hospital uses minimal stimulation, which is generally what is chosen by many specialists for people like me for whom ‘blasting’ with hormones won’t make a difference in number anyway and might only make quality even worse. In fact, the coordinator (with the doctor copied in) at the private clinic said we’d probably use mini IVF for me given my terrible state. Ok,she didn’t say the last part in THOSE words.

Hopefully a month till we find out if I’m wasting my time being hopeful- if I can get my body to work right.

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Lots of Ignorance Out There

Every time we’ve gone to Tygerber.g, this other Dr, Dr Nos.arka has been there in the corridors, walking around, seeing patients, helping students. And she seems like such a lovely person. I don’t know the other doctors but I’ve seen how she interacts with people. BUT she’s not the one doing videos about the fertility clinic, so everyone only knows OUR doctor.

So what happens?

You find women who get in touch with the hospital and get her as their doctor. I know of one who had a second appointment with her in May after their first cycle with her failed. But in the meantime they had been given our doctor’s number by someone and because they were so disgruntled and assumed they’d been given the short end of the stick, sent him a message and he agreed to see her in April.

Same thing with another person whose IVF at a private facility had failed. They immediately wanted to leave -not because the bedside manner was bad, but because they failed.

Both these ladies in different Faceb.ook groups. Thankfully when they posted about it, we were able to (sadly) tell them how this whole thing is luck of the draw and isn’t the doctor’s fault. Failing an IVF isn’t usually the dr’s fault. Obviously yes, there are ways it can be. But from the treatment cycle I read by the one blogger who used her, I know for sure Dr Nosarka is NOT the problem. So seeing yet another post from someone upset because they’d wanted “the guy on the video” and not her, was a bit sad. They’re all doctors. They all fail as much as each other. I guess though they don’t know that. And it’s not always their fault. I’ve seen two couples raving about how wonderful he is in the Facebo.ok groups but after bloods are taken, they don’t come to report that it failed. Instead, we get lovely reassuring comments the one who is pregnant with triplets and another with twins. And so people forget the other side.  I think I only focused on the failures because when I joined the Faceb.ook group I read all the way from the bottom and wondered why there was silence from some who’d been treated by him. One did comment recently under a post asking how to get over a failure, to say theirs failed too. But otherwise… People just don’t know ‘he’ fails.

It fails. One time. Twice. Thrice. Sometimes forever. Dr. Norsaka is a dedicated and present doctor. Then again, maybe I’m biased because I have noticed a dearth of female drs. Ca.pe Fertility only has one, and Aevit.as and two others have none, so I notice her more. Or the days we go there, are the only days she’s early and busy. Either way, just like this one lady had no clue how IVF works, people have no clue that it does not always work. No matter how famous the Dr is. I know I’ve seen people so excited because at Aevi.tas they got the ‘famous’ Dr who trained OUR Dr. But… The cycle still fails. (At least they don’t contact the other doctors in the practice because they think he messed up. ;-))

Let’s say it together. All doctors fail. It’s not (generally) a reflection of their abilities.

And as for my WhatsApp group (Not a single success yet) ladies after my Dr told them he’s away and can’t treat them, everyone is on fire to start treatment in November. I’m hoping I’ll have begun mine by then as promised by the hospital. Maybe I’ll be the one to give them hope? Ha! We shall see!

Ladies…

So. One of the ladies in my group waste meant to begin her IVF this month. I know because she wrote that she’s done with her birth control and is about to start when her period comes.

A minute later, the lady whose cycle failed -the one who had the embryo transfer the day I was told I couldn’t begin – sent a message the Dr sent to her. She wanted to try again this month. He told her to contact the lab for an appointment as he’s away till October 3.

I am now terrified that whoever else was meant to start this month will ALSO be shifted. And I’ll again be cancelled. Hey, why not?

And maybe it won’t happen again.

I just wishing they could give us another doctor so we don’t burden him.

Was the Cape Talk Article On Tyger.berg a Lie?

I don’t think so.

People are funny. The lady who began the whatsapp group is very fiery and feisty. I keep mentioning (Either when people ask or when they’re down about theirs failing) that we shouldn’t feel like we ‘failed’ if the treatment fails because after all, this is Tyg.erberg and the chances there are lower than in private, which itself isn’t that high either. Today, she responded that as far as she knows, all have a 30% success rate-private or government. She could have at least said, “Oh really? That’s interesting. I thought they were all the same.”

So I went and searched for the Cape.Talk article I’d read. And in black and white it states that unlike his private peers whose success rates are 35-40%, our doctor’s stats are at 25-30%. It’s there, man. It’s down. It doesn’t reflect anything except that we are getting what we pay for. More importantly, it’s still better than the zero chance we would have WITHOUT the treatment, right?

Her Donor Egg Misery, His Kindness, My Plan.

Three things related to my IVF ICSI journey.

1. My WhatsApp Friend who asked the GS email lady whether they’d received my documents or not.

She and her husband have one child. He is around 18 years old. They had him when they were varsity students and unmarried and stressed and… Now she’s 38. No second child. Started at GS. Made 13 follicles. Student Dr who was doing her retrieval stuffed up and she didn’t retrieve ANY of the eggs in them. (How???) Then soft stimulation next cycle and NO eggs at all. Then 3 and 1 fertilisation. Then 1 and no implantation. After that… Her AMH was 1.05 last year, now 0.95. She’s tried 7 times to conceive. Last year she tried in May, November and this year at Tygerberg. Sometimes two embryos, sometimes 1. NO joy. At GS they’d started whispering that she should try donor eggs but she’s 38 and wants to wait till she’s 40. Her husband doesn’t mind.

This week, the student Dr who saw her at GS reviewed her file. Said he’d asked a doctor, and it was now time to move onto donor egg.

She refuses. She is not ready financially nor mentally. She feels like they are at war with her and that as long as she can make an egg, she can make a baby.

So she texted my Dr T and asked for a script for DHEA and to tell him she wants to start next month.

Yep, you guessed it. No response. I feel so bad for her. She is desperate. She feels at war with all the experts. Ah man, this thing is hard.

Oh, she did fall pregnant naturally last year.

Ectopic. That STINKS. And like many, makes it harder to give up on ones own eggs.

She’s hopi that our periods fall at the same time next month so when I go, she can join in. I reminded her that I was meant to go in with someone and they took the someone but not me, so not to expect anything.

2. 3. The GP my husband went to for his open, infected wound is a star. Dr. Ismail at Century City.

My plan. I decided I could not justify in my head, the cost of private care. I just can’t. BUT I also can not see myself writing exams and stimming etc next month. So… After digging online and seeing how some drs time their patients ‘ IVF cycles by putting them on the pill for 10 days to 6 weeks… After reading how they only put people like me on it for 10 days, 14 max before starting with their bleed, I’ve decided that when my period starts, I will start the pill (The same one our Dr T has put the woman I was meant to cycle with) for ten days. I’m on cycle day 23 today. Then hopefully I’ll start BEFORE exams. And yes, I’ll start with Tyger.berg. If they cancel me again, I’m moving onto Private.

So, I went to see the GP to ask for a script for the birth control pills and when he asked if I could be pregnant, told him he saw my husband on Monday after his botched testis biopsy stitching. He was so concerned. It felt so good after the silence we’ve received. Even at the end of the appointment -after CONFIRMING via pregnancy test  that I’m not pregnant – he kept insisting that if the wound isn’t scarring over, to either see the Dr to fix it this coming Monday or go to him.

So, I’m back. Back on the Tyge.rberg plan. Let’s hope it works. My body is too ‘old’ to wait the months everyone else is. 😦

Waiting

I sent an email to GS Hospital (formerly known as “the other government hospital”) and they said if I live in the right area, I should send my referral letter and documents to them.

Now, I don’t know if I do or not. My friend who is a GP thinks we do because we apparently fall under Somers.et Hospital which doesn’t offer fertility clinic and people from Some.rset Hospital get referred to GS if they need better or specialised care.

But I don’t know if that’s how it would work for THIS.

I sent an email stating where we live. Then sent another with my tests results and referral letter just in case we DO fall in their catchment area. That was Friday.

I’ve heard nothing. Today is Thursday.

BUT the lady who had her appointment there yesterday asked me who I’d been corresponding with and said she knows her and she was there. So she asked her. And was told that she was “waiting for the Seniors to meet to discuss which side they fall in.” I assume that means catchment area.

I don’t know when the seniors will meet. I don’t know which “side” we’ll fall in. I do know they said transferring our sample would be a piece of cake. And that given my hormone/fertility status , I’d most probably need two attempts.*gulp*

I contacted some private places. It’s freaky how much info they give compared to the NONE we got with our Dr. Were it not for blogs and my own research, I would have had no clue what I was preparing for when we thought we were going to start in August. In fact, the woman who was meant to start with me asked us on the WhatsApp group this week, “Guys, is the IVF process painful?” I guess she and we weren’t the only ones not to receive any information whatsoever. No-one responded so I replied with, “Well, the daily injections are painful, for starters!” And her reply was a mortified, “Oh Gooooshhh!”

Maybe they’re just too busy to sit down and explain whatever people are counting down for, but to go from that to just inquiring about costs with private and getting a breakdown of when you’d got in for bloods and scans and retrieval, together with pictures of embryos was surreal.

You get what you pay for.

And private is super duper expensive. It’s insane! We’d only be able to finance ONE treatment IF we use our year end bonus to pay for it instead of paying off our car.

I don’t know!

Time is running out. Each month reduces my low fertility.

And after the hospital and Dr STILL have not responded to the testis biopsy mess after telling us to contact them if there’s a problem, I do not feel comfortable going there. I really don’t.

But I’m desperate.

And I don’t know what GS will say. And I know IF they say yes, I’d only start maybe in January.

Whereas if Tyge.rberg DOESN’T cancel us again, it’s going to be the end of next month. And yes, the chances of conceiving through them are lower than with private, but we’d have three attempts vs one.

I don’t know. I’m just blah now.

Different Path?

So, Husband had emailed the clinic on Thursday about the ‘missing’ stitch where the wound was open and weeping. It looked infected too. They said he should go in on Thursday at nine o’clock, wait for a space in between our doctor’s meetings, and have him check it out.

Dutifully arrived at 9. The receptionists didn’t even know if the doctor was going to be in, what time… And were not very sympathetic, “What did this email say? Who sent it?.” So,they told him to wait in the corridor and see what happens.

Yes, they’re VERY patient-friendly.

Waited.

I sent the Dr an sms asking if he’s going to be in or if we should leave.

No response.

He emailed ‘whoever’ it was who had told him to go in.

Got no response.

Decided to call a GP and ask if they deal with stitches.

Found one at Century City and went off.

The doctor was very unimpressed. He said the stitches should have been removed 7 days after the procedure and that he should definitely not be in the state he is in a whole month later.

He removed the stitches-obviously blood flowed. He prescribed antibiotics and a cream and hopes the granuloma will heal over. Which will take very long. If not, he’ll go in, cut the skin and stitch it up as it’s now too late for the skin to come together.

The doctor is a personably, friendly fellow. But the attitude of the receptionists, the not-knowing who’s doing what, the way they cancelled my cycle and the infection and the leaving of non-dissolving stitches all this time have made my husband wary about my going to them now.

In the same way I was ready to throw in the towel when they cancelled me, he’s ready.

I actually contacted “the other government hospital” on Friday as a back up in case these guys postponed my yet again or if it failed. I heard from someone who has used both clinics that the level of care at “the other government hospital” is higher. Obviously, she has failed at both clinics, but though she loves our doctor, the delays they’ve put her through have made her lose faith in them so she’s going in tomorrow for a consultation. The “other government hospital” people were kind even in their email response. They win major points just for that. You can feel the warmth. Whether I can be helped by them is another story, but they are able to take our sperm from Tyg.erber.g and use it there, THAT’S not going to be an issue. They are fully booked for November and part of December so I’d probably only be helped in 2018. Which was ok when I thought it was going to be for atempt number 2 or if they cancelled me again. Now, waiting for attempt number 1 for that long after having gotten the ball rolling in April makes my heart sink.

In the meantime, instead of the possible three but most likely two attempts we were going to do, we’re considering just putting all our literal eggs in one basket and going all out at a private clinic in December for ONE attempt. Though I would do consultations now in preparation for that cycle.

I don’t know.

I’m glad others have had awesome experiences, but we are jaded. Tired. In pain. And not feeling the warmth that people working in a hospital, with people’s dreams and BODIES should exhibit.

Time for a different path to the same destination.

 

Back to the Doctor on Monday

I wish it were ME seeing him but alas, the wound from the biopsy has not closed up properly and it’s now a month later. It’s almost like a stitch is missing. That portion (bottom of the area that was stitched up) is open (Size of my baby nail. Which is small because I bite my nails. Bad, I know!) and you can see the pink ‘insides.’ It’s still oozing, still swollen and I now believe we have an infection.

So, husband emailed them on Thursday night and they told him to go on Monday and tell them he’s a past patient with a stitch problem and wants to see the doctor, who will fit him in between patients.

I ovulated yesterday. 13 days till the end of this cycle and then another 27-33(?) days till THE cycle. Still numb though. I am terrified they’ll find another reason to cancel.

Question – When your husband’s biopsy was done did it look like he’d sewn the testis onto the scrotum?

Yes, Yes he does.

Yet another text message about yet another failed IVF cycles. And yes, the Dr does use the same text as I supposed.

I can’t imagine how draining it must be to have to tell so many women that their dreams have not been realised. As I said, it’s one thing to know the stats (Only 25-35% success rate? Something like that.) but another to actually witness it in the names and faces of disappointed and hurting women.

The lady who was meant to have begun with me in our cancelled August cycle is scared. And I don’t blame her. The spectre of going through that all over again to again fail… We have 5 ladies on our list. All from our hospital. All with negatives.

Ouch.

I don’t know their stories. I don’t know if they have PCOS, if it’s male factor, premature ovarian failure… I don’t know if my chances are just as slim or even slimmer thanks to my stupid diminished ovarian reserve.

I don’t know anything except positives DO happen.

But that they are rare.

And that the norm.

The usual.

The obvious outcome…

Is that it will fail.

And because no-one makes enough eggs to freeze… The cycle has to begin all over again.

Man, blessed are those who get to climb off the rollercoaster with their positives. It’s a big deal, to succeed against these odds.

And I’m HATING this 2 month wait. I really am. At least I’d be almost half way done now. Instead, I’m counting down to one period. Then counting down to another. And then hoping we actually begin so we can finally fail get this show on the road.

 

 

 

Does He Say the Same Thing to Every Patient?

We checked in on the lady who had the embryo transfer the day we were told we would need to wait two more months. She just simply copied and pasted the text message from the doctor informing her that it did not work  and she was not pregnant and that they were all sad, that for whatever reason, the embies did not implant.

Man, just typing it out makes me feel close to tears for her. She hasn’t said anything. I’m sure she’s deep in mourning. This was attempt number 2. She was REALLY desperate for it to work and morning of transfer, so nervous.

I’m beginning to think it it works, it’s a miracle. A true, unexpected miracle. It’s one thing to go in knowing the stats are against us. But it’s another thing to know 5 women cycling in a 6 month period and only one of them gets a positive. It’s very hard to go in with hope.

Then again, my hope was destroyed last month anyway. I’m now even unsure that we’ll begin when we’re meant to. I have nothing to look forward to. I waited and waited for August and then August came and went. I’m not going to bother waiting for October because it might also just come and go with me thinking again, “I should be injecting myself.”

I can’t imagine being the doctor and having to share negative news after negative news. It’s certainly not nice being the recipient.

Infertility treatment is not for sissies..nor for sissy doctors.

And I wonder if the doctor has a page on his phone that has a generic “You’re not pregnant” message on it that he copies and sends. I would.