Saturday, June 4, 2011

HTLV And How It Affected My Surrogacy Journey

I am now able to share with you exactly why I was "let go" by my Intended Parent's Reproductive Endocrinologist; why I lost the Intended Parents that I was previously matched with; why I had to switch agencies; and what I've been dealing with for the past (almost) four months now. Here is my story.

When starting this surrogacy journey in early 2010, I really had no clue what I was getting myself in to. I did a bunch of research on surrogacy before signing with an agency, but there are things that can come up that nobody can be prepared for. I was so nervous about my medical screening, I didn't even give it a second thought about my husbands screening. It never crossed my mind that something could be wrong with my husbands test results. Especially after my results came back perfect! I thought for sure we'd be ready to sign those contracts as soon as I was cleared for take off. Boy, was I so unprepared for what hit us next.

In February, my husband's medical screening results came back positive for a very rare retro-virus called HTLV. HTLV stands for Human T-Lymphotrophic Virus. Scary name right?!!? Well, right in deed! As soon as I got word of this virus, I immediately logged onto the internet and Googled HTLV. My heart broke into a million pieces as I read about this nasty, potentially life threatening virus. The retro-virus HTLV causes T-cell Leukemia and T-cell Lymphoma in adults. Areas of the world that are endemic to the HTLV-1 virus are the Caribbean, Japan, Africa, Middle East, South America, and Melanesia. Not the United States. So, you can imagine how terribly scared and freaked out my husband and I were (not to mention why I wasn't able to spill the beans on my blog about why I lost my IPs). I was told by both the agency that I was working with and the RE's nurse that they often see false positives with this test, and that they were going to further test by performing a test called the Western Blot. Not to panic just yet and lets wait for the second, more in depth test results to come in. Well, back to the lab my husband went to have more blood drawn. I had high hopes that the first test was a false positive--I mean it had to be. If my husband truly had this virus, I would have tested positive for it--it is sexually transmitted. I tested negative for HTLV, so there is no way that my husband had the virus. No way. It had to be a false positive and the Western Blot was going to give us more answers.

Another two weeks had gone by while we were waiting on the results of the Western Blot.  We were informed by the RE's nurse that the results are back and now reading "undetermined". At this point, the doctor is no longer willing to work with me as a surrogate and has asked the intended parents to look in to getting another surro. What the heck!?!? I had done countless hours of research on this nasty virus, and I had come across even further testing that can be performed when the Western Blot comes back uninterpreted--not readable. This third test is called HTLV by RIPA, and only the California State Department of Health can perform this test for us (since we live in CA). I begged and pleaded for this doctor to order the third test. I even said that we would pay for it out of our own pocket--just write the script so we could have it done! My agency begged and pleaded for the doctor to give it one more shot, but he was having none of it. He had made up his mind. No advise to us, but to have my husband seek an infectious disease specialist. Thank you and goodbye--door slammed in our face...or so that's what it felt like. I was devastated. Heart broken for my surrogacy journey that was cut short, and scared out of my mind for the life of my husband. So many emotions. So much confusion. So much heartache. I was now un-matched and no longer able to work with the agency until we could prove that my husband was negative for HTLV. We needed that third test performed!! But how?

I made an appointment for my husband to see his primary care physician. We didn't know where else to start, so we figured we might as well start from the bottom. When at the doctor's office, my husband asked her if she'd ever dealt with HTLV cases before. Her response, "Only one other time, and it happened to also be another surrogate's husband....he eventually tested negative". I thought that was very interesting to say the least. Anyhow, she retested my husband using the Western Blot (the 2nd test), and once again, "undetermined". HTLV is so rare in the US, and not many doctors know how to deal with it. All the doctor could tell us was to retest in a month. Another flippin' month of waiting!!! I couldn't take it anymore. Something had to be done. There had to be other options.



I know I have mentioned it before, but I am sooo very thankful for the surrogate support group that I am a part of. With all of my confusions and frustrations regarding my husband's results, I reached out to my surro-sisters and one of them was able to get me in with her agency, Growing Generations. Growing Generations agreed to work with me and see that my husband's HTLV issue was tested further. They took us under their wings and sent my husband to a doctor who ordered the necessary test that needed to be performed--HTLV by RIPA. On April 14th he had his blood drawn for this test. This was it. This test was going to give us a definite yes or no. This test would ultimately change our future--for the good, or for the bad. We will have our answer and I prayed every night that it was the answer that we wanted--A big fat negative!!!

Fast forward to today, almost four months after we first received news about my husband testing positive for HTLV; Four months of our life waiting in limbo; Four months of not knowing what our future holds; Four months of torture. I received a call this morning that my husband is NEGATIVE!!!! I knew in my heart all along that he was negative. I just knew it. I fought hard for what I believed in. I pushed forward and persevered. We concurred this madness. I didn't give up and we succeed. My husband is 100% negative for HTLV and I am now moving forward with my journey in becoming a gestational surrogate.

Move outta my way, people!!! This Momma is hitting the ground running to help another couple's dream come true of having a baby.

To help you understand what HTLV is:
What is HTLV - CLICK HERE
FAQs about HTLV - CLICK HERE


16 comments:

Babydreams2011 said...

OMG Andrea!!! How scary and terrible for you all! Shame on that RE, in this day and age SO MANY tests are coming up false positive!! I was pretty much expecting our FDA testing to do that, but we got lucky, I have heard horror stories!! i am SO happy everything is resolved and you know what? You ended up EXACTLY where you were supposed to be, God has a way of moving in our lives without us knowing it. YAY for you back in the game!! =)

Heidi said...

I can't even say how happy for you and your family I am. You are one strong lady and I can't wait to see who you match up with. You know all of your "surro-sisters" are here for you. You're amazing girl! Celebrate tonight...you deserve it!

Jennifer said...

I am so incredibly happy for you. So glad you got the answer you deserve. You are an amazing woman and you are going to make a very lucky couple into a very happy family. Can't wait to hear about the rest of your journey.

Anonymous said...

Truely amazing story Annie. So happy for you both. An answer to prayer.

Krystal said...

OMG! How awful to have to go through! I'm glad everything ended up okay though and I'm happy you finally get to do what you've been looking forward to.

Ashley said...

I was so happy when I got your email... of course NEGATIVE!!! All that wasted time, but I know you... you will make up for it!! You go get 'em girl! Can't wait for your journey to start.

TXSurromom said...

Wow, I'm so glad you got the answer you needed and good for you for pursuing the answer! So glad your husband was negative!!!

Mike and Tony said...

HOLY MOLY! Thank you for sharing your story with us. I am so sorry that this journey has been so bumpy for you. And what a horrible loss for your original IPs. From what I can tell by this blog you would be an amazing surro mom to work with. Thank you so much for not giving up!

tonya said...

Andrea
Thank you for your story. Dr. K at gg just informed me that I tested positive for htlv. I didn't know there were other tests. I am going to talk to him further and push for these other tests. Thanks for giving me hope!

Andrea said...

Hi Tonya,
If you'd like to chat privately about HTLV, please feel free to send me an email at amuehlhaus@gmail.com. My husband and I dealt with the HTLV nightmare for almost 5 months. I've done countless hours of research online and I would be more than happy to be your support.

Anonymous said...

Hey There. I found your blog using msn. This is a very well written article. I will be sure to bookmark it and come back to read more of your useful information. Thanks for the post. I'll definitely return.

Judith said...

Hi Andrea,

I have been reading your blogs and I was devastated when you announced that you had been let go. While reading this entry I was in tears and I'm so happy that you can continue on your journey. I am just starting out and I am hoping for a transfer within the next month. I am possibly facing a "road block" myself and I just want to wish you the best of luck.

Anonymous said...

Andrea, I am happy for you. Right now, am in devastating situation. I suppose to start my IVF treatment this month but was tested positive for HTLV even with the western blot and my husband is negative. Yet to here from my Dr. if I can still continue with the IVF. I am experiencing a sleepless night just waiting for my phone to ring and be told of the next step.

Andrea said...

Dear Anonymous, please look into the HTLV by RIPPA test to give you an affirmative answer. If you'd like to chat privately, please email me at surfcitysurro @ gmail. Com . Best of luck!

Anonymous said...

Andrea, What is name of the first 2 tests your husband did?

Andrea said...

Hi there. Western Blot and HTLV by RIPPA. Hope that helps. :)