I’ve Graduated!

Rhombic Dodecareuleaux Calendar 2013 by Philip Chapman-Bell, on FlickrSo after you get a transplant, you have to report to the Transplant Clinic on a regular basis. During all the sessions where this was discussed, the breakdown was listed as:

  • Two visits a week for 3-4 weeks
  • One visit a week for 3-4 weeks
  • One visit every other week for a couple of months
  • One visit a month for several months
  • Etc., eventually leading to one visit a year

In addition, lab work is required to check how the various drugs are working and how the new organ is functioning. Typically, lab work takes place on the same day as a clinic visit (although the pacing for that also stretches out…twice a week for a bit, then once a week, then once every other week, etc.)

While the initial visits are with an assigned doctor from the surgical team, eventually they transition you to the nephrologist. That usually takes several months.

My first visit to the Transplant Clinic was on June 9 (which happened to be my real birthday, causing all kinds of confusion because my paperwork was printed several days before, so I kept changing my age ;-) ). So I showed up just before 7 a.m. and finally got to leave at about 1 p.m. But the bonus that day was that they gave me permission to get my labs drawn at my local hospital, which meant that future visits didn’t require showing up at 7 a.m.

In addition, they scheduled my second visit for Monday, June 16. So just over one week post-transplant, and I’m a month ahead of schedule.

When I showed up on Monday, June 16 (just for the vitals / visit with nurse to go over the medications / see the doctor), they told me not to come back until June 30. Now I’m another month ahead of schedule!

And today, they told me that I’m transitioning to the nephrologist now :-) (Woo-hoo!) Even better, the nephrologist that I’ll meet with is *my* nephrologist, Dr. Nina Tolkoff-Rubin. The only difference is that I meet with her on the Transplant side of the office and not the CKD side.

My stitches have almost fully dissolved, the drain hole is almost completely healed, and the kidney is doing extremely well. However, I have discovered that I have limits (good old spoon theory)…it looks like three hours of anything is about my max, and then I need to recover. This time will eventually stretch out as I continue to heal.

3 Comments

  1. Hi ,

    I read your blog and read about your journey with ckd. I am facing same problem so I just wanted to check how u managed your diet.i have a creatinine level of 1.6 and I dont have any problems except bp for which I am on ACE medication and bp nremains normal. I think this is early stage so I wanted to check how many years it took u to reach transplant stage and what was ur condition at begining.

    I am asking cos I am engaged n my fiance knows about it but she wont leave me as she is in love. I dont want to spoil her future so just wanted to get your veiws on progression. I am 28 and healthy expect blood samples n ultrasound says otherwise.

    I would appreciate You’re views on this.

    Thanks

  2. Hi, Rahul :-)

    I was first diagnosed when I was 22 (in 1978). I got my transplant when I was 58. During that time, I got my college degree, traveled around the world, had a baby, bought a house, started a company…in other words, I lived.

    Diet-wise, I avoided all extra salt, and I ate the foods that my body craved. I somewhat followed a renal diet (and more strictly for the last 10 years).

    You need to make an appointment to see a nephrologist who can guide you through this process.

    PS I’m not sure why you think you’re going to spoil your fiance’s future. My husband was aware of my CKD from the beginning, but he took the “for better or worse” part seriously. We’ve now been married for 14 years (together for 18).

  3. Thanks,

    This gives me a Ton of confidence. :-)

    I have regular follow ups with my my Nephro and the Kidney’s are holding up well.

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