Home Blood Phe Monitor: A PKU Pregger’s Dream

During the 2014 National PKU Alliance Conference this past summer, an update was given on the development of a home phe monitor, a device that would allow people to check their blood phe levels immediately from home. In this video interview, produced by Kevin Alexander, Dr. Tom Franklin, chair of the National PKU Alliance Scientific Advisory Board, says that after receiving 128 proposals from scientists representing seven different countries, nine were selected in April 2014 for Phase II and were required to submit detailed concepts for the monitor by July 2014.

Unfortunately, a single proposal won’t be selected for moving forward with development of a prototype until December 2015. Even then nothing is guaranteed, but nonetheless, allow me to explain why an at-home phe monitoring device would be my ‘dream come true.’

Many of my readers are aware that I’m pregnant with my first child and as I prepare to hit the 30-week mark this weekend, I’m well beyond the point in my pregnancy when Madison has started to process phe for me. In order to make sure my current phe allotment is still appropriate, I use a lancing device to gather a blood sample every Sunday, allow it to dry overnight and then mail it in Monday morning. Yet, as I write this blog entry, the last phe result I received was on Aug. 19 for a level I took on Aug. 10. For those of you who are counting, that was more than three weeks ago. Neurotic, Type-A-Personality folks like myself can’t help but worry about how much has changed in that time span.

When my blood work leaves my mailbox Monday morning, it’s probably fair to estimate a two-day delivery time with the U.S. Postal Service. So what happens once it reaches its destination to cause it to be delayed so much longer? Well, in my case, the level likely arrives at the hospital warehouse where it is processed for an internal delivery system. In some cases, clinics decide to hold a patient’s level until they have enough in-hand to justify the cost of processing them (most clinics will place a maternal PKU patient on a priority list). And then there’s just plain old human error. Levels are lost, stuck in interdepartmental tube delivery systems and who knows what else!

To be clear, I’m not trying to place blame on any one person or organization. Heck, even I realize that my decision to transfer care to another state also plays a role in this conundrum. The point is there are many reasons why the turnaround for blood phe results moves slower than molasses. No doubt, the ability to use a home phe monitor would vastly improve many lives in the PKU community.

Until that day, I’ll continue to play catch-up with how fast Madison grows and the protein she needs for that development. I’ve decided to overnight delivery of my levels (which, by the way, costs me $20 a pop). I also have started to send them directly to my clinic, bypassing the hospital’s warehouse; ultimately hoping that all of this will help improve the situation.

I’m curious to hear if others in the PKU community have had similar frustrations with the time it takes to get back blood test results. Have you and your clinic come up with other unique ways to improve the process for submitting levels through the mail?



Filed under Conferences & Events, Lo-pro Diet Management, Maternal PKU, Research, Technology

4 responses to “Home Blood Phe Monitor: A PKU Pregger’s Dream

  1. Dear Nicole,

    I share this frustration when it comes to blood level testing. Since I am in preparation of pregnancy I am expected to draw blood once a week. I’m testing which day is best to send it off in order to make sure it arrives quickly. Normally, the mail service takes 1-2 days throughout Germany, but I also had sendings which took up to 5 days and it’s so frustrating because you would react much too late on an (unexpected) high level. It’s just ineffective.

    When I was little, we used to wait until the lab send the letter with the level, but now I call them approximately 1-2 days after I sent off the envelope. I guess I’m getting on their nerves already because they often had to tell me, that analyse still takes time, but well…

    My lab is really working fast and well, that’s my impression, but I already suggested them to send the levels by email as soon as they have it. They would save the postage and wouldn’t have to bother about up to 3 calls (which takes their time, too).

    So I totally agree that the Home Device would be a dream come true. Even without pregnancy, you would get a much better feeling on how certain foods affect to your blood levels and you could check immediately. I surely would test several times a week. Why not?

    Thanks for this great article.
    Katie xxx

    • Katie – Thanks so much for commenting! I agree it is hard trying to find your preconception “sweet spot” when level results are so far behind. I had the same trouble myself, but now at this point in my pregnancy, I’m having the opposite problem: my past seven levels have been below 2 (with 2-4 mg/dl being the preferred pregnancy range her in the U.S.), so I’m quite literally having to play catch-up.

  2. Amanda

    I too have had my fair share of frustrations with blood testing. I take my blood test on Friday mornings and then send it out on Saturday mornings. Most times I receive the results in about 10 days, but the past two tests that I took on 9/5 and also 9/12, I received both of the test results on the same day, then the next test result I sent in I received the results in exactly one week. Since my husband and I are trying to start our family, I also have to take my blood once a week and send it into the University in Baltimore. Sometimes the test results come back quickly, sometimes it takes forever! My nutritionist had the doctor type a letter for me to take to a Quest Diagnostics and try the testing that way and see if it is quicker, I have yet to try it, but once I do I will make sure to let you know how quickly I receive the results. The other option I have is to drive into Baltimore to the University every week and have the test taken right there since that’s where they do the testing. Once I’m pregnant, my nutritionist wants me to start doing that since it takes so long for me to receive my results. Should be interesting and I’m hoping that we can work something out with the Quest Diagnostics thing so I don’t have to drive into the city every week…that would not be a whole lot of fun! LOL!

  3. Alison Moulesx

    our own machine, now that would be cool as.

    Amanda, that is disgraceful time turnaround….. im so sorry to hear about that, i hope things get better over there

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