A Few More Questions, A Few More Answers

Maci's monthly dialysis clinic was yesterday.  I did ask some questions and got some answers.  After seeing the Endocrinologist's office last week I thought of questions.  He had mentioned that putting Maci on growth hormone could potentially hurt her bones, putting it simply.   (I don't think you really want me to go into renal rickets, vitamin d supplements....activated and nutritional, PTH levels and such anyway.)  I asked if one month of "boosting" her growth could  cause a problem and her Nephrologist said, yes.  So, NO growth hormone.  We will be doing patience instead.  Her Nephrologist also said that if her growth isn't under a certain percentile, insurance would not even approve the GH. 
Her length yesterday was 29.5 inches / 74.93 centimeters.  Her Neph said that in the past the length for transplant as been 75 centimeters which is 29.527559 inches. LOL
So, IF that's the magic length we aren't far away.  All the surgeon said was that he wanted her to "be a little bigger".  Her Neph said that she is going to talk to the surgeon and try to nail down a few more definite answers and "goals" so we have a better idea of what to expect. 

I want to now clarify a couple of things regarding the transplant. 

Yes, the transplant is covered by insurance, Maci's insurance.  Her insurance will cover her receiving the kidney and the removal of the kidney from a living donor.  If the donor has insurance, if the donor does not have insurance, Maci's insurance will pay.

What will NOT be covered is any time off of work for the living donor.  The individual would have to elect to use their PTO, vacation time or their short term disability.  Depending on the type of work they do, they will be off work for an average of 4 weeks.
If Rick is Maci's donor, he will not be paid the entire time he is off work.  He has not been with his company long enough to accrue vacation time and short term disability is not offered.  If for some reason he is not able to be her donor he will still want to take time off of work to be at the hospital with Maci, definitely the day of her surgery and after, and he will not be paid for his time off.  This is the reason people are doing fundraisers for us.  I am very thankful for those who have helped us either by doing a fundraiser or participating!

Maci has Medicare as her primary insurance and MS Medicaid as her secondary.  She qualifies for Medicare because she qualifies for disability because of her kidney failure and because she is in kidney failure.  She will continue to have Medicare for three years AFTER her transplant and then she will lose it.  She will have to meet the qualifications to continue her Medicaid each year.  I am hoping that we will be able to be approved for a waiver that considers only Maci's income for HER to continue Medicaid.  Otherwise, if I get a job making any, decent amount of money she will not qualify because of my exceeding the income limit. 

A transplant does not "heal" her.  It does not mean she will no longer take medication.  It just means that she may not have to take 14 medications a day but she will take a minimum of 3.  Those THREE medications are $394.01 per month after Medicare pays 80%.  Thankfully, Medicaid will pick up the remaining 20% as long as she qualifies for Medicaid.  I am still unsure how all of the insurance stuff works post transplant.

If she misses ONE day of her antirejection meds it could possibly make her kidney begin to fail.  These are medications Maci will take EVERY DAY, FOR THE REST OF HER LIFE.  She will also require at least one more transplant, likely two more in her lifetime!  Transplant only means a life free of dialysis while her transplanted kidney works properly.  It doesn't mean she will never have to be on dialysis again.  There is NO CURE for kidney disease. 

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Maci at clinic yesterday. 

Her Daddy's hat kept the light out of her eyes.

On the way to the Pediatrician to get her TB skin test.

Checking off another pre-transplant item.

Waiting at the doctor's office.