April 27, 2020

Health updates:

  • Good news! I had a bone marrow biopsy last Tuesday (ouch) that showed NO RESIDUAL DISEASE!!! Praise God!
  • We can move forward with transplant as soon the dialysis graft in my arm proves to be working, and I can get my femoral catheter removed. I need to redo a whole bunch of appointments as a pre-transplant workup. These include meeting with the radiation folks, getting another heart scan, getting lungs tested, meeting with the psychologist, meeting with the social worker… and probably other things I’m forgetting. We’re looking at an admission date of last week of May, or first week of June.
  • We are now doing home dialysis! It’s been a huge quality of life improvement. It’s great not having to go to the depressing dialysis center any more, and being able to do it at whatever time of day suits us best. The other upside is that we’re doing it four times a week instead of three, which means I never have a two day stretch without it. More frequency is a huge bonus when it comes to fluid removal. I can drink more freely and not have to worry about the fluid building up as much. This in turn results in more energy after dialysis since there’s not as big of a volume swing.
  • For the first time in 15 months (with the exception of a two week stretch when the kiddos went to Columbus with Mike’s parents last summer) we don’t have anyone staying with us. Up till now, our loving families have stepped in to help with childcare and managing the household while Mike and I are tied up with hospital stays and appointments. We have loved getting to spend time with family, but at the same time, it’s very nice having the house to ourselves!
  • I just spent a week in the hospital for a post-op cellulitis infection. I got the dialysis graft placed in my left upper arm about two weeks ago, and at first it was painful, but fine. Three days after the operation it started becoming red, itchy, and the pain was going up. The next day it was more swollen and red. The day after that I called the vascular doctor and got sent to the ER. I got admitted and put on antibiotics. Thankfully after a few days the pain and welling started going down. It wasn’t easy being in the hospital again. I’ve had so much pain and distress in the hospital, it was hard not breaking down and panicking. I guess I have hospital PTSD. My solution? Sleep. Talk on the phone. Pray. Smell essential oils. Watch America’s Next Top Model- a guilty pleasure.
This was taken after two days of antibiotics. Hope no one is overly grossed out.
  • I’m not sure if I’ve talked about this before, but ever since kidney failure I have restless legs. It sounds trivial and maybe even silly, but it’s a real problem. Anyone who’s had them will tell you it’s NO FUN. The feeling is like an itch in your bones… mixed with an overwhelming claustrophobia, where the tight spot is holding still. It’s particularly bad in my right leg, and often times it starts the moment I wake up and keeps me awake at night. I’ve tried different medications or it, but nothing really worked until I had a to take pain meds after surgery. For the first time in a year I went a whole day without my leg getting wild. It was such a nice feeling to be able to hold still.

Things that are fun…

Mike had a birthday! I really enjoyed making him a cake 🙂

My sisters and I sometimes refer to my transplant as The Tranny. Logically, it made sense that we should prepare for transplant by practicing our transvestite make up skills – pretending to be men who’re pretending to be women. We made a phone date out of it one unforgettable evening. As you can see, the results are stunning.

10 thoughts

  1. Hooray and Congrats on good news!!

    Ramen all day, every day…I miss it soooo. It is so comforting. My hubby does not like any noodles, so I hardly have any and when ever I see it I get all excited 😦

    Be well and stay safe. Gentle hugs.

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  2. YAY!! But have you ordered Pho yet???? Get some and enjoy it for me too!!
    I love you and am so glad for this time for you all as an independent family!
    Hugs for you and Mike and the kiddos,

    Mom

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    1. Nice to see Marian got a new set of glasses (unless you finally found them??) …and it looks like David is continuing with the illicit use of writing implements…😜. Ah, the joys and adventures of raising a family!! Enjoy every minute!!❤️💖❤️

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  3. An encouraging read!!! I think and pray for you and the family often. Your orchids continue to remain happy and have bloomed again- always giving me pause to remember my friend! You are such a gift from the Lord! Keep fighting the good fight!

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  4. So glad and praising the Lord that you are doing better! Thank you for sharing bits of your life journey with us!

    -Lauren S. ,a friend of your parents

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  5. I absolutely love reading your updates, all the details, the good and the bad
    Thank you for being so candid in you how share your realities. We continue to pray for you and your beautiful family. I’m cracking up at your tranny idea…lol. Good job making the most out of things that are (beyond) difficult girl! And meanwhile, cheers to the good news! xo.

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  6. I’m SO HAPPY to hear you’re getting your transplant soon! You’ve been through so much; I pray that this surgery will the beginning of the end of this ordeal and the start of your recovery. I love your photos, and I’m still cracking up about the trannies! With much love from Salinas, Conny (from the MPC ballet class). ❤️

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  7. So happy there’s been positive test results and good times with the family! Loved seeing pictures since I don’t get to see you at church in this season.

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  8. This has helped with my restless legs issues. Miracle PLUS Melatonin Sleep Cream w/ Lavender & Chamomile. It really helps me when my leg gets crazy, usually at night! Just order online. Very reasonably priced. Hope it helps you too!

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