Well Yesterday was my annual blood draw day. I do not look forward to this day. in fact I normally put it off then it ends up being a few years before I go in to get it.  A while back I use to have them done at the the lab in langford but a few years ago they where changed to only being done in the hospital. Which is a big inconvenience. I really hate fasting. I feel sick when I fast. I always wake up hungry, so fasting is really hard. By the time I prepare some cearal and formula to take with me, get my stuff together, drive there and wait in line, then have the test done. I really start to feel sick. I start to get nauseated, dizzy, and stomach pains. The longer it goes on the worse I feel. I start to feel sluggish and just really sick.  So needless to say I really start to dread it.

Than I learnt that that the kamloops life labs does do all the tests that I need to have done and you can book an appointment. So I booked my appointment for the earliest I could get at 7:50am. Of course than though I could not sleep. So I was up frequently through the night and could not eat or drink. Then I thought my appointment was at 7:10 so I got up at 6 when Cole woke up. I packed a bowl of dry froot loops and my formula to take with me and ended up eating in my car  later while I got my oil changed and winter tires put on.

I made it to the lab just before my appointment time and it was a pretty empty waiting room. They took me right in but my lab req’s confused them a bit. I had 2 one from my family doctor and one from my clinic in Vancouver that had a lot of the same tests, also the test from my PKU clinic said it had to be sent to bc children’s hospital. Which wasn’t in their computer. I over heard and came out and told them where to send it.

I have been getting these tests done my hole life so I know what veins work and what don’t and what helps. I always request a “butterfly” which is a small needled that has a cord attached to the vials. Its a lot easier for smaller veins and for when you are having a large amount collected. Does not hurt and dose not collapse the vein. I also grip a urine spec jar in my fist otherwise I cant grip strong enough. I always ask for no tape after it makes my skin hive so I get a band-aid.

My left arm is the only arm to get blood from. I have been getting blood there for so long I have a lot of scare tissue and a permit puncture mark. The best vein is right under the scare tissue or to the left of my elbow in the inside. I never really need to be poked more than once.

However I was really dehydrated and cold so my veins where non existent yesterday.  The first lady had to try twice. she did end up trying the right arm , no one ever gets blood from my right arm and it always hurts!

The rule at this life labs is one person is only allowed to try twice, and they are not aloud to try more than 3 times in 24 hours.

Luckily the next lady got it on my left arm on the outer side. So a few bruises and an hour later all the vials where full and I was free to go!

These blood collections use 2 “yellow” tubes, 2 “lavender” tubes, 3 “green” tubes, one that needs to be kept cold for 10 minutes then spun. I believe that is the amino acids and fatty acid draws. There are a couple other colors but I forget now, i’m thinking “red” and “orange”

These tests are done once a year to monitor our blood profiles, vitamins, minerals, electrolytes, tyrosine, tsh (thyroid)  diabetes test , triglycerides, amino acids, levels of fatty acids and more. Its to ensure we are getting all the formula we need, that we are getting enough protein and that our diet is working for us. The profile usually lets the clinic know if anything needs to be changed or if we need to increase or decrease, if we should add vitamins or take anything away. My last test last year my triglycerides where to high and I was suppose to start taking salmon fish oil capsules or omega supplements but I cant swallow them there so huge. Not to mention they smell bad. Like awful chocolate and fish.  When I was a  teenager my iron was low, I was anemic and I also needed to supplement my formula with tyrosine.

My family doctor filled out a rec for me to take yesterday to as he was concerned again about my iron and on the form he selected suspected hypothyroidism. I am to go back to see him in a week for the results.

The results for my clinic will take a lot longer and my dietitian will email me with the results.  The amino acid and the fatty acids take the longest. I know my blood phe level will be higher this week to. MY level from October 3rd was 5. 2. However I have been really eating a lot of mashed potatoes and cream corn for dinner the past 2 weeks, as well as I had regular toast one night at work because I forgot my breakfast. Than on Wednesday night it was my friends birthday and I had a small slice of birthday cake. So I predict my levels will be between 8 and 11.

I have been trying to do my blood dots every few weeks but have been doing them monthly the past 2 months. Since I know I am high I am going to do another one.

Sometimes it hard for me to do my blood dot when I know I haven’t been eating well because I really don’t like to see higher numbers . I think its a part of me from when I was a kid and would get in so much trouble when they where high. I always felt so bad and guilty when my dietitians called or when I was in hospital for my clinic visits and I had to be talked to yet again about high levels. Eventually I started to tune them out and we all know where that got me. So I think apart of me still fears that. Not so much the fear and anger or frustration, now its more guilty and feeling of disappointing others and worrying about the damage, now that I know and fully understand how it  effects me.

Blood draws have never been an easy thing for me. I use to hate doing them at home, I preferred to go to the lab, I went to the same lab with the same techs for many many years, However I would put it off for weeks on end because I always had to miss school to go . I wouldn’t take the bus with my friends or get to play outside before school started. MY mom had to fight with me and later bribe me to go.  When my mom did my blood dot at home for the very first time when I was 13, I fainted. I actually fainted. Everything went black!  I had been watching the lab techs poke me and draw my blood for years and never felt squeamish. I later learnt, I am fine to do it on my own or the lab but not when someone else does it to me.

I have no problem doing my blood dots at home anymore and much rather prefer it. I still fast but I don’t have to wait. I get up when I get up, I have a shower or if i am in a hurry run my hands under warm water. Then I use my lancets and fill 2 or more circles , depending on how much blood I can get with out poking multiple times.  My clinic says its best to fast as it gives a better picture of a “true” level. It will be slightly higher when you are fasting. If you are not fasting they can have a false low. If I am unable to fast in the morning sometimes I do it between lunch and dinner. My clinic said the minimum for fasting is 4 hours. So usually right before dinner is a good time for me. Now that I am on nights I will tend to do them on my days off but If I have to do them on a night I am working, I sleep during the day when I get home and do my blood dot when I wake up to eat dinner with cole.

I then mail in my blood dot card and I have to wait between a 7 to 10 days to get an email back from my clinic with the results. If I was doing the MPKU diet, trying to conceive or pregnant than I would have to take the blood dot to the hospital for them to courier down. I think the results for that is between 2 and 4 days.

I still dream of a day when we have a home testing device like diabetics do. Would really make my life and many lives so much easier. However BIOmarin the company who was working on developing it where having trouble with the results in the lower levels and spent to much time and money on it and had to let it go.

It was a sad day in the community. I had originally wanted to wait to have a baby until we had a device. The wait for results scare me, if your sick, if levels raise, or something happens damage is already being done. However with a device I could know instantly and adjust my diet accordingly. I guess all I can do is to continue to dream and wish upon stars.

Until then I will do the best I can with what we have. At least my annual blood draw is done for another year!