Had a long day Thursday, May 21st. Left for Boston at 6:45 am and arrived home at 6:30 pm. I had an eye appointment at 9:45 am. Then I didn’t have a blood draw until 12:30. Eye examine went well. No problems with my eyes. We spent a little time in the courtyard at MGH and then we went back to the car and I took a nap! I’m fighting an upper respiratory infection, probably bronchitis, so I was wiped out from our walk to the eye office. Thankfully when we met with Dr. Zhu at 1:30 he faxed in a prescription for a Zpak and I’m feeling better.

My phosphate levels were up again. They are now 7.7. So I am now taking 1600 milligrams of the binder 3 times a day. I’m having a variety of side effects. Trying to figure out if they’re from the trial drug or the binder. My throat is swollen – not sure if that’s part of the respiratory infection or a side effect from the binder. It hurts to swallow sometimes. Dr. Zhu actually gave me a prescription for lidocaine, but I’m not using it as when I read the instructions, etc. it’ll numb my entire mouth. I may use it at some point, but not yet. I’m constipated. That is more than likely from the binder. I’m taking Senekot and having a Miralax cocktail. My mouth gets sore, but this comes and goes – this could be from trial drug. Things are tasting different, but not always. I have water tasting salty and non-spicy foods tasting spicy. I tried to eat an apple and there was no taste at all, so I couldn’t eat it. These could all be from the trial drug. But, I think the salty taste could be from the binder. Also my muscles get achy once in a while – that would be from the trial drug.

The good thing is that none of these things are constant. I’m taking Advil for the sore mouth and swollen throat. Some people that have been on the trial for a while have indicated that they had some of these symptoms in the beginning, but then they went away.

In spite of all this, my energy level is better than it has been, so I’ve been able to do a lot more things and that makes life so much better.

I’ve done very well on the phosphate diet paying attention to everything I eat and staying below 600 mg per day – except for the two cookouts this weekend! Because the trial drug doesn’t let my kidneys process the phosphate there seems no way to avoid the phosphate levels increase. Again, with other participants the same thing seems to be happening. All of them that I’ve interacted with have had their trial drug dosage reduced. We’ll see what this Thursday brings. It will also be the beginning of my off week.

We had a great time at Jay and Heather’s annual Memorial Day cookout/party on Saturday. Yesterday we went to my friend Julie’s cottage at Hawk’s Nest Beach for a cookout with her family and friends. Had a wonderful time. The weather was perfect for both cookouts, food was delicious and the company was awesome. Very good weekend!

I think most of you that read this blog already know our wonderful news, but for those of you that don’t – RAY AND I ARE GOING TO GRANDPARENTS!!!! WOO HOO!!!! WE ARE SO EXCITED! Heather and Jay told us the news on Mother’s Day. They are due January 7, 2016. Can’t wait to get my hands on that little bundle of joy. In the meantime, we pray for a beautiful, healthy baby.

Thank you all for your continued love, support and prayers. They are so appreciated. You are all my strength!