WTF?

Am I asking WTF the Phil Dunphy way, as in Why The Face?

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NO, I’m asking WTF the pissed off way, as in What The F*&^!

I have been trying not to whine and complain too much. I’ve been keeping my gratitude journal. I’ve been working through my pregnancy journal and posting those memories in a cathartic exercise to deal with the past. But today I just can’t.

I think I have been patient as it relates to the genetic testing and research study in which we decided to participate. This week I decided to email E (my genetic counselor) and M (the research coordinator at BCH) to see how it was going and to find out where they were in the process. Because, you know, we were quoted three to four months and we returned our saliva samples in October, and all the consent forms and releases have long been sent to them too. So, this month would bring us to three months and I was hoping for the best that, maybe, they were close to being done.

Well, apparently Tufts Medical Center doesn’t care that I signed release forms back in October or September or whenever it was that I signed those particular forms, because they have NOT YET sent the tissue samples from Baby #1 & Baby #2 to BCH. So, BCH has not yet begun analysis on any of my samples, The Husband’s samples or Baby #3’s samples because it is best to have all the DNA in hand before running any analysis. Apparently sending the samples all at once increases the chance of finding something.  The “good news” is that Tufts has now agreed to release the samples, but “the paperwork has been very drawn out.” M hopes that the tissue samples will be sent within the next month. Also, apparently there is some genetics conference in  March and she is going to be presenting our case at the conference (without names and identifying information) and is hoping to have some other experts weigh in.

First, I am mad at Tufts. I SIGNED THE FORMS MONTHS AGO. They are MY SAMPLES. If I want them to go to the research study then just fucking do it! Why the drawn out process? Be like Nike and Just. Do. It. Second, I am mad at myself. I know by now I have to be on top of things and be my own best advocate. I should have checked in on this months ago. If I had known this was happening I would have been on the phone with Tufts a long time ago and doing whatever I needed to do in order to get my samples sent. Phone calls. Emails. Letters. Going to the hospital. I would have been a damn squeaky wheel until I got my way.

So, what does this mean? Instead of (potentially) having answers this month or next month I’m looking at MAY OR JUNE. It takes three months to get the DNA data mapped and returned, then they need time to analyze it.

When I told The Husband, he asked – “ARE YOU SERIOUS?” all slow and drawn out.

Yep, I’m serious. Very frustrated and serious.

I might as well just try again without even knowing. I’ve already lived through three tragedies, what’s one more?

Trying again on our own. That’s what it will probably come down to, I can see it now. “Sorry, after nine months of waiting we don’t have any answers and weren’t able to find anything. Everything seems ‘normal.’ We’ll let you know if some new medical discovery comes about that provides an answer.” At that point IVF with PGD won’t be an option. Options will be: try again on your own, adopt, or use donor material. And if nobody can provide me an answer, and nobody can point to a cause and say – because of x you will never have biological children – well, if nobody can do that then adoption and donor material may be very bitter pills to swallow.

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50 Responses to WTF?

  1. leemc2417 says:

    Oh God, I’m so sorry. I’ve been wondering when you would get your results. I hope you have them an earful, I can only wonder what would’ve happened if you hadn’t called. Idiots. I’m still in your corner and think of you often. They will have answers for you (when they get off their asses), I just know they will.

    Liked by 1 person

    • Thanks for stopping by and commenting. I appreciate your support and hope you are all well! I tried to be diplomatic in my questioning of the decision and they are chalking it up to bureaucratic red tape between hospitals…. Grrr.

      Like

  2. This sucks. Totally. Im sorry they dropped the bomb and didnt do what they said they would do. I hate that about the medical field–its like they do whatever they want sometimes while we just sit around and wait. Dont blame yourself, you shouldnt have to check on people, they should do their jobs on their own like you and I do! Unreal. Anyways, I hope you can find some peace on if you want to wait this out or just move ahead. Ill be praying for you 💗

    Liked by 1 person

  3. That is incredibly frustrating. And a little ridiculous. No way is it your fault so don’t blame yourself. They should know these samples belong to someone who is in need of answers not just an experiment. I guess no one can really tell you exactly what to do. I guess if I were in your shoes, not that it matters what I think, I would try again, either ivf with pgd or on your own. You are right in all you say.
    I sincerely hope they get on the ball and get you something soon.
    Thinking of you.

    Liked by 1 person

  4. lyra211 says:

    Ugh. UGH. I am so sorry. There is no excuse for that delay. It also shows an extreme lack of empathy on their part — clearly they do not understand the extreme stress that comes with delays when you’re dealing with infertility and pregnancy loss. It’s bad enough that pregnancy loss makes you feel like time and life are marching on for everyone but you — now your hospital can’t even be bothered to help you figure out what’s going wrong??? I’m so angry on your behalf. I hope they get their s**t together yesterday.

    Liked by 1 person

  5. hopingonhope says:

    I am soo sorry.

    I dont know your history or the previous tests you had done, but I did go through 3 losses and had some genetic testing done whicb did come back as “similar” for me and my husband. I had to either do some fancy treatment which was then nascent or just try again and hope for things to stay. What I am getting at is, I understand how bloody frustrating it is, sometimes its horrible for tests and science to say nothing is wrong, yet know that something is wrong.

    We went the lets try our luck route and thankfully things did work well but I did lose 1 more pregnancy. I hope you get the answers and hopefully if something is wrong, let it be somethting that can be fixed too.
    Hugs, and tAke care.

    Liked by 1 person

    • We previously had a ciliopathies panel, where I was discovered to be a carrier for three disorders related to kidneys/adrenals but my husband is not a carrier. We’ve also has karotyping done (both normal.) I just wish science would catch up with the human condition. There is just so much we don’t know.
      Thanks for stopping by and your support 🙂

      Like

      • hopingonhope says:

        I am sorry. I had a HLA match done and my husband and I had some matches, not sure(actually I dont care to remember) how many.
        It was heart breaking because science was techincally telling me Of the poor chance I had conceiving on my own(i have pcos and almost never ovulate) there was a 75% chance I would miscarry.
        I wish you both good lucj and more than anything peace. Infertility is tiring mentally and emotionally, not to forget the physical pain.

        Liked by 1 person

  6. Krystal says:

    WTF!! I’m so angry for you. I’m sorry I haven’t commented lately but I have been lurking and I have been wondering about these results. I can’t believe this. There is no excuse for it. I hope that this gets resolved soon and you get some answers. XOXO

    Liked by 1 person

  7. I am so sorry!! I cannot believe that they didn’t get the testing done and now you are facing such a huge delay!!
    I cannot tell you what to do next. But I can tell you, having an explanation for our losses, one that we didn’t feel we could overcome, was critical to our next steps. So, I understand how important those results are. And this delay makes me so angry for you.
    Sending hugs and love. And lots of hope for some quick processing and results.

    Liked by 1 person

  8. I wanted to throw up reading this. I am sorry Tufts has so incredulously botched its handling of this. Damn. Life is one shitty cruel joke after another.

    Liked by 1 person

  9. How frustrating! I would be soooo pissed off too. I’m sorry this is taking so long for you, the waiting game sux!!!

    Liked by 1 person

  10. What the F indeed!! I’m sorry they’re messing about over there. That really sucks.

    Liked by 1 person

  11. Nara says:

    WTF?! That’s insane. How frustrating. I want to scream on your behalf!

    Liked by 1 person

  12. Oh my gosh, that is INFURIATING! I am so angry for you right now. What the eff is right. I’m so sorry.

    Liked by 1 person

  13. RJ says:

    OMG that is ridiculous. I can’t believe they haven’t yet sent your samples. How hard can it be? I would be beyond frustrated with the situation. Please give yourself a break, as how were you suppose to know they wouldn’t send the samples in a timely manner. Hopefully this gets resolved quickly and you get your answers. Hugs.

    Liked by 1 person

  14. jwhitworth7 says:

    Oh my gosh! This must be extremely frustrating. It sounds like there are a lot of hoops to get through. 😦 I hope that things speed up and you have a plan of action soon.

    Liked by 1 person

  15. you might think that they send immediately the tissues when you asked for it, since everything that has happend to you! but hey, it sounds that, again, if you don’t complain and are not on top of your case and harrass those people with telephone calls, nobody moves. So frustrating!

    Liked by 1 person

  16. I’m so sorry, that’s awful – it’s hard to believe the incompetence sometimes. I do hope they can get their act together and get some answers for you soon. X

    Liked by 1 person

  17. Jen says:

    I’m so sorry to hear this. I know from my own experience with tufts that you need to be on top of EVERYTHING with them. It took me close to 6 months to get my medical records to switch doctors. I wish you the best and hope tufts pulls it together sooner rather than later.

    Liked by 1 person

    • Interestingly, when I switched my OB Doctor in 2014 they were very quick to have my records sent to the new practice (within a week of receiving the request.) that was their satellite ob/gyn office in Braintree though, not the actual hospital. I am just not impressed with this at all!

      Like

  18. I can’t believe this! It’s unacceptable!! I’m so sorry, you must be incredibly frustrated! I really get the difficult waiting and just wanting to throw the dice again… Hugs

    Liked by 1 person

  19. You’re being way to hard on yourself. I mean, you know nothing was going to happen at the holidays. So you could have gotten it pushed a month or two. In the bigger picture of this journey, a couple months is not going to make the difference. You have plenty to beat yourself up on, this isn’t it.

    Like

    • Well, I didn’t expect the samples to be completely analyzed but considering that I returned the release to them on September 25th I would have expected they would have sent the samples by now. I can’t see any reason why it takes four months to simply send the samples so that researchers could begin their process. So, what was once quoted as 3-4 months has now doubled to 6-8. And I’ve already been trying for 3 years, so it adds up quickly. The whole situations is just frustrating!

      Like

  20. I cannot believe they allowed this to happen. I am so sorry! I hate that you have to wait for answers – it’s such a stressful thing to go through not knowing what the answers will be and especially when the wait is much longer than it should be. Sending you hugs and love ❤ XOXO

    Liked by 1 person

  21. I am livid on your behalf. I would be so, so angry and I only wish that we could all do something to help. There are no words. And I know that you when you are wanting desperately to have a healthy pregnancy and have a baby, every additional day you have to wait is agonizing. I’m thinking of you.

    Liked by 1 person

    • Livid and angry is a perfect description for how I’ve felt! Now that a week has passed I am not as actively angry, but still upset nonetheless. Just another setback in what has become a stressful, maddening journey to a family. Thanks for the support.

      Like

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  23. Jivf says:

    First time visitor, hi!

    This post made me so mad for you. I’ve had my share of experience with incompetent office personnel and it’s maddening to think they’re delaying you by months. So sorry to hear.

    Have you considered doing genetic testing on your own in addition to this study? Some places can crank out results in two or three weeks from blood or saliva samples and either it’s covered by insurance or cost is under $100. One place my clinic refers to is Natera.

    In any case, hope you get the results soon and are able to move on.

    Liked by 1 person

  24. Hi, thank you for stopping by! I’m sorry you’ve had to deal with incompetence too – it is infuriating for sure. A delay of a few days, a week – okay. But months?!? Ridiculous. I haven’t seriously considered doing my own testing – I know there are tests like 23 and Me, but the testing I am getting done is free and covers my entire genome which I think is more expansive than the tests you do on your own. But the thought has crossed my mind from time to time. I have never heard of Natera but I am going to look them up right now! Thanks for the tip. 🙂

    Like

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