365 Days of Kidneys, Day 61

Quinnlin, 2009

Let’s talk about shots.

Both of my kids were on shots pre kidney transplant. Gage was on growth hormone (using the painless CoolClick system) and both of them were on synthetic red blood cells know as EPO or epogen. It helps raise the lab numbers for hemoglobin and hemacrit. This also impacts iron because that is how iron travels through the body.

The EPO shots aren’t fun. It’s a small needle, yes, but it’s medicine that stings. It helped our kids to have a warm pack before and after, but especially after. We hated shot day in our house (1-2x per week for EPO and 1x a day for growth hormone) and for the EPO shots we had to restrain the kids while they were screaming and wiggling.

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365 Days of Kidneys, Day 60

One of the things I don’t think I realized, even though it’s said many times during the process, is that immune suppression can creep up on you.

Listen, we’ve been pretty lucky. Even through multiple infections we’re lucky. Why? Gage is a germ magnet. He’s always into something gross. The dirt, railing, checking out dead animals. No matter what we say or do, he seems to get into something. He’s fought MRSA and won. I always wonder how long we’ll be lucky.

Right now we’re in a battle against recurring strep and an UTI in Quinnlin. One year Quinnlin had a positive strep test 15 times and was on antibiotics 175 days + for the year. We had her tonsils out and that helped. But lately she’s had it again. Mix in a UTI (her 3rd in 2 months) and we’re trying to figure out where to go with treatment. Waiting on new pediatrician to call transplant team to talk about an approach.

It just good to remember that it never ends, that’s all.

For all in the series…

 

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Happy Birthday to My Beloved

Happy Birthday to the best part of my day. Love that we’re growing old together.

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365 Days of Kidneys, Day 59

This is a great, quick read for kidney health...

  • Keep your blood pressure at the target set by your health care provider. This can delay or prevent kidney failure.
  • If you have diabetes, control your blood glucose level.
  • Keep your cholesterol levels in the target range.
  • Take medicines the way your provider tells you to. (Important!Certain blood pressure medicines called ACE inhibitors and ARBs may protect your kidneys. Ask your health care provider for more information.)
  • Cut back on salt. Aim for less than 1,500 milligrams of sodium each day.
  • Choose foods that are healthy for your heart: fresh fruits, fresh or frozen vegetables, whole grains, and low-fat dairy foods.
  • Limit your alcohol intake.
  • Be more physically active.
  • Lose weight if you are overweight.
  • If you smoke, take steps to quit. Cigarette smoking can make kidney damage worse.

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365 Days of Kidney, Day 58

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365 Days of Kidneys, Day 57

When Gage and Quinnlin were first diagnosed by a doctor on the phone (I KNOW), she told me that we’d need to get a nephrologist and I looked over at my sister and repeated what she’d said and I then learned what one was… a kidney doctor.

Since then we’ve added the following specialties…

Hepatologist (liver)

Opthamologist

Speech Therapist

Occupational Therapist

Vision Therapist

Physical Therapist

ENT

Orthopedist

Several Pediatricians

Cardiologist

Internist

General Surgeons

Transplant Surgeons

Hemotologist

Gee, what’d I miss?

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365 Days of Kidneys, Day 56

By Gage’s kidney donor, Jody.

Kidney donation – what an experience, even after five years!  Each day I am thankful that Gage’s body accepts my kidney as his own.  I am amazed at how much he’s grown and how healthy he is, compared to that sick little boy with sad angry eyes. And I am thankful for the medical technology, the doctors, and the support teams that made our donation/transplant possible.

Speaking of the medical team, I am reminded about two conversations I had with my transplant surgeon, Dr. Newell.  In my pre-op consultation, I remarked that I was grateful for his work. He replied, “I have the best job.  All my patients are living donors – people who were giving of themselves so others could live.”   What a kind and humble man Dr. Newell is.

The other conversation I had with Dr. Newell was three days before our transplant date.  My grandmother had passed away unexpectedly and her funeral was to be on T day.  Distraught, I called what I thought was Dr. Newell’s answering service to talk about the possibility of moving the surgery date.  I didn’t want to jeopardize the transplant but I also wanted to be with my family.  Dr. Newell answered on the first ring and told me that he was in California and would look at the surgery calendar when he was back in Atlanta and we’d talk about the options.  As I hung up the phone, I realized that Dr. Newell had given me his personal cell phone number (not the answering service) and that he was talking to me at 4:30 in the morning, since he was on Pacific time.

I am so thankful for my kind and skillful surgeon, Dr. Newell, who made my organ donation possible.

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365 Days of Kidneys, Day 55

UNOS is a great site. It is. It stands for United Network for Organ Sharing. Dig around the site, there are some fascinating facts!

When the kids were going through transplant – especially Gage because he was the first, lucky him – I was obsessed with searching statistic lists on transplant center graft and patient survival. Here’s one I looked at.

Sometimes Google can be good, sometimes very bad.

 

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365 Days of Kidneys, Day 54

Talk about using social media for good.

Facebook Unveils Organ Donor Status Option

Well played, Facebook, well played.

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365 Days of Kidney, Day 53

When I wrote this 1st donor letter the evening of transplant #1 it was late. My son was in and out of pain in the ICU and we were across from a very sick little baby being cared for by the same nurse.

I was typing this thank you letter to Jody on my computer in the dark of the room, in a chair “bed” that I would spend the next 3 or 4 nights in and my head would not turn off to go to sleep. Which was actually helpful because Gage was up every 30 minutes.

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