Kentucky Bourbon Cupcakes

Michael

Kentucky Bourbon Cupcakes

Michael
cupcake-298961_640Tomorrow I have a meeting in D.C.  John will be home by himself for a few days while I am away. We've done this before, even since he started dialysis but this time really worries me. He hasn't been doing so great lately. We were told this week that he he may have to go back on hemo dialysis. PD isn't doing it's job. Currently, he is doing nine hours at night and two manual daytime exchanges.  His doctor says he's at the maximum and the next step is hemo.

Pros: It's only three hours per day and he can still do it at home. Cons: More surgery, he can't be alone when he dialyzes, we both have to go through five weeks of training together. I don't mind the training. I'd do anything for him. I am just horribly worried because well...why isn't this working?

On the upside, for the last several days he has been feeling better physically. Emotionally is a whole other story.  He is just so sad. I try so hard not to let him see my worry so I don't talk to him about it often. The truth is though, I worry all the time. I worry so much that it's affecting me in other areas. I'm forgetting things and I am tired all the time. Sleep? I don't remember the last time I slept all night. High phosphorous makes you itch. John always has trouble getting to sleep. 1:00 am and he's usually up watching Netflix on his iPad and it keeps me up. Usually around 4:00 am he's up itching.

I put the brave face on and remind him that our lives will be so dramatically different when he gets a kidney and pancreas. "Just imagine the freedom to eat a whole Kentucky Bourbon Cupcake with no guilt or worry!" How great will that be!  Yesterday I thought about the fact that someone has to die so that he lives.  I am sure all transplant patients and families think about that. I think there's a certain amount of guilt that comes with hope. When we get those organs, we will truly celebrate not just that his life is extended and improved but also that the donor gets to live on through us.

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donna

Hi, Michael-\r\nSo sorry to hear about the issues John is facing with dialysis. It sure seems like a crazy balancing act, doesn't it? We need to be sure they get enough protein and potassium, but limit phosphorus. Is John already taking Renvela, a phosphorus binder? My husband takes 2-3 pills per meal to help bind the phosphorus together, so it's more easily eliminated from his system. It's helped to keep him in the normal range. I'm sure John is already working with a dietitian at the dialysis center...we've worked to limit my husband's intake of dairy, chocolate, whole grains, and nuts. He also misses his Diet Dr. Pepper, but have replaced with Diet Mt. Dew. He had awful itching before starting dialysis, and until we got his level under control. His feet are mostly the only area that still itches...I call him Cricket since he's always rubbing them together. :) Do you mind if I ask what John's latest KT/V total was on his labs? They've also struggled to get my husband enough dialysis, and have adjusted his prescription many times. He is currently doing 10 1/2 hours overnight, with one manual daytime exchange. They've recently increased the amount of that daytime exchange to 2500ml from 2000. His last KT/V had only been 1.74, but this brought it up to 1.93. The dialysis clinic wants that number above 1.7, but the doctors prefer it be at 2.0. The doctor said we could add a second daily manual exchange, but that we could say no to that. So far my husband has been feeling very well on PD. I know it's difficult to think about switching to hemo. We may eventually need to try that to see if it might facilitate weight loss. I've heard the surgery for the dialysis port is normally routine and without complications. I agree with your thoughts on transplant. When we attended an education class, there was much talk of matching donors and viable donors. It's also important that we remember those donors have a grieving family. Is there anyone in John's family who might consider being a living donor? Please know I'm here, and hope to be a support for you.

Denise

Hi Michael--Oohhh... This kinds of news is always sooo difficult. It's the kind of news that can pull you into silence. \r\n\r\nI wonder if it would help if you both talked about your worries and fears? While not an easy conversation to start, it may ultimately help you both feel better. Perhaps simply starting with, \"I've been thinking of the news about your dialysis. I have to be honest in that I'm worried. I love you so much and I want you to be better. I worry, though, because of this news. What about you?\"\r\n\r\nYou actually both have an opportunity to be vulnerable together as you discuss your worries and your fears. And, who better to be vulnerable with than the one you love? \r\n\r\nThanks so much for keeping us posted. I'm hoping your trip brings you a good night's sleep.