October 27, 2019

Writing this blog post by the fire.

What good is waiting? I was supposed to get a call from my doctor on Friday. The phone never rang. I did my best to keep it next to me all day… which is an effort I rarely make. He has a long to do list on my account and I was looking forward to an update. He needs to contact the hematologist in Boston who has done combined bone marrow kidney transplants to see if he’ll take my case. He needs to see what insurance thinks about me transferring over to Boston. He needs to contact my primary care provider to request referrals for me to get dialysis and plasmapheresis in Boston if I go for an assessment… sounds like a couple days’ worth of work at most. Right?

James and Liam, supporting the Springboks in the World Cup (rugby). Someone is forcing them to smile… in reality they are clearly NOT happy to have their picture taken.

Meanwhile I’m hanging in there… doing the dialysis routine and wishing I could drink water to my heart’s content (I’m limited to 32 oz of fluid a day) and eat salt (I’m supposed to keep it under 2000 mg a day, but if I even get close to that my thirst is overwhelming). And wishing I could eat some potassium rich foods (like potatoes… ooooo salty fried potatoes… and tomatoes and guacamole) and eat lots of good ol’ phosphorus rich foods (like dairy, whole grains, beans, meats, seafood, spinach). And of course, the ultimate fall food- soup. One day I’ll have pho again (if you don’t know what that is, you need to find out. It’s a soup-based party for your tastebuds.) My favorite way of falling asleep these days is remembering what it feels like to drink fresh cold lemonade in big gulps… or to imagine myself taking bites of tortilla soup, with lime squeezed on top and big chunks of tomato and avocado… the smell of cilantro and roasted peppers filling my nose.

I must admit, one of the biggest reasons I want my kidneys to be healed is so that I can eat and drink again to my heart’s content. It is a priceless gift to be able to just follow your senses and satisfy your desires for food. If I had to rank my miseries they would go like this: Drowning in my lungs (definitely number 1), sepsis (short lived but horrible), gall bladder attacks, daily unquenchable thirst, persistent nausea, giving birth, bone marrow biopsies, getting a nerve poked at the dentist. What good is it to suffer these things? I have no idea. I just know that in this world, we are built to suffer as well as to enjoy. There’s no way out of suffering. I’m sure when this is all over I may find some golden truth about the value of suffering… and in some cases I do see how it demonstrates love. But what good is it to anyone for me to be thirsty all the time? All I want to do is wriggle out of it. It makes it very challenging to focus on anything else. It sure makes me saver those 32 oz though… water has never tasted so good.

David, testing my writing focus.

7 thoughts

  1. Thank you so much for this update. I continue to pray for you so many times a day. You look fabulous! I am so sorry for your suffering. Your children are growing so fast and are absolutely adorable!

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  2. Thank you for writing and letting us into these moments and grow ever so slightly in our concept of your experiences in all this, to be humbled and appreciative as we realize how much we take for granted until circumstances change. May God meet you in the waiting. Psalm 27

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  3. Heidi…I love hearing about what you’re thinking and doing… I sense more of a calm…and that makes my heart happy. If you’re like me, however,…I prefer to show that I am strong on the outside when, in reality, on the inside, I struggle…with lots of things. I’ve been told that I’m quite normal in that aspect. Even so…I want you to know I appreciate your vulnerability in showing us all aspects of what you’re going through. It makes me think about what I take for granted…like chips and salsa. I’m going to believe with me (and have been) that you will get to savor things like that again real soon. While you wait…I’m praying for continued calm days and that somehow answers come quicker for you. Know that I pray for you a lot…I mean…a lot! Much love to you and your sweet family. Claire

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