Kidney Status: It’s Getting Real

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You know, it’s been so long since I blogged, and I’ve had so many conversations of varying length and depth with so many people… I don’t know what anyone knows anymore.  So I’ll just pretend nobody knows much of anything and get everyone up to speed with where we are in the Kidney Saga.

I think everyone knows we’ve been doing dialysis treatments at home on Michael.  We’re actually closing in on TWO YEARS of doing this.  January 11th is our General Dialysis Start Date Anniversary, and February 14th is our Dialysis At Home Start Date Anniversary.  We’ve had very few complications as we’ve done these treatments which is actually pretty amazing considering what we’re doing.

I’m not sure everyone understands that 4 times a week, we’re sticking 2 large-gauge needles into Michael’s arm, taping them down and watching a machine pull the blood from his body, clean it through a cartridge and dialysate solution, and return it back to his body.  There is no port to attach things to.

A surgeon did create a large fistula in his arm, where he basically connected an artery to a vein and inserted a mechanism that pumps blood at a higher rate to make this large, almost ropy, vein in his upper arm for us to insert the needles into.  But it’s still just his arm.  Still his flesh.  And he flinches almost every time, no matter how much or how long we apply the numbing cream.

And depending on the type of needles we use, we have to be careful that he doesn’t bend his arm too far lest he puncture himself internally, an occurrence known in the dialysis world as “infiltration”… we’ve had that happen twice and his upper arm swelled up with a pocket of blood and pain.  Ugh.  But we’ve learned what happened each of those times and have been super, super careful to avoid that happening again.

You’d think with the pain of the needles and the 2 infiltration moments and the boredom, Michael would resist treatment.  But surprisingly he goes into the game room and climbs into the chair each time it’s time for a treatment without fuss or hesitation.  Even knowing the flinch is coming.  The only thing we can discern from this is that he knows that it makes him feel better.  That his post-dialysis moments are the happiest, hungriest, most active moments he has each week.  He laughs, he eats, he is animated.  And he stays that way for a few hours, with things incrementally slowing down over the 48 hours until he’s tired again and it’s time for another treatment.

So that’s where we are with dialysis.

Of course, we’d like him to be happy and hungry and animated for more hours than just the post-dialysis ones.  Which is why we’ve been pursuing the plan to get him a new kidney through a transplant.  UT Southwestern has approved him to be on their transplant list and I am in the process of being tested to see if I’m a match to donate one of my kidneys.

Let me just side note here that being tested to be a kidney donor is a bit of a beat down.  I went to the lab to have blood drawn and to pee in a cup.  Those blood results told me I’m a blood match for Michael so I was asked to return for more blood work.  One of those blood levels was “borderline” so I returned to have a glucose tolerance test done.  I passed that and had to do a  24-hour urine collection.  I failed that and had to redo it.  (you have to understand how disheartening it is for a pretty much Straight A student to be told I’m failing these tests and must retake them!)  The 2nd collection was a winner and now I’ve been cleared to go down to UTSW and have 14 appointments over 2 days with all sorts of people, both for consultations and actual procedures.  They will check my kidneys and my heart, as well as ask about my diet, my psyche, and my support system.

All of this to find out if I’m a good candidate to give up a kidney and survive the surgery.  I started the process about 2 months ago and will finish by Thanksgiving.  I’ll keep you posted on how all of that goes.  But remember, if you’re ever thinking you want to donate a kidney, there are a lot of steps to the process, a lot of visits to the lab!

But meanwhile, after a few conversations with different doctors, the decision has been made to remove Michael’s existing kidneys, via a procedure known as a nephrectomy.  We had been told from the very beginning, when we first started pursuing the transplant process, that they would require his old kidneys be removed.  For a brief moment, one doctor thought we could avoid this step, but he turned out to be Dr. Falsehope and we’re back to having to have them removed.

These kidneys of his are full of cysts, which create 2 potentially negative things. One, they could become malignant in the future, and two, the cysts inside make his kidneys markedly larger than normal kidneys and they are pressing on his other organs.  Removing them might make him eat more if they are putting pressure on his stomach, and they will give the newly transplanted kidney the space it needs.

I had thought originally that they could do both surgeries at the same time–take out the old, put in the new.  But apparently with the risk of complications from any surgery, they want to do them one at a time.  Remove the old ones, let him heal, make sure he has no infections, get strong again, then do the transplant.  Obviously they want as few things as possible involved to risk the body rejecting the new organ when the transplant occurs.

So that’s a 6 week process from start to finish.  And the start date is December 8th, as that’s when the nephrectomy is scheduled.  By that time my testing will be done and we’ll know if I’m a good candidate for donation.  After his 6 weeks are up and he’s healed and strong, we’ll do the tissue matching to see if I’m a viable donor for him.  Then within a week after that, we’ll schedule the transplant.

But did you hear that?  I will have gone through all the testing and still, at zero hour, find out we’re not a tissue match.  They have to wait til the week before because bodies can change so rapidly that the antigens might not match.   Even if I’m not a match, he’s on the general donor list, and is accruing bonus points for being on dialysis!  So we’re hopeful that a transplant will happen sooner than later.

Our concern is how much will the dialysis sessions change once his old kidneys are removed.  Right now the old kidneys are still allowing his body to produce some urine so liquid is being removed from his body naturally.  The dialysis machine removes waste from his blood and also removes excess fluid based on the numbers we input.  We know what is dry weight is and we weigh him before dialysis.  We program the machine to remove the fluid that is considered excess.

Once his kidneys are removed, he will stop urinating and we’ll have to remove even more fluid.  We’ll have to monitor more closely how much he drinks.  And watch for signs of fluid retention.  Only a certain amount of fluid per hour can be removed safely, so odds are we’ll be on the machine for longer periods of time.  If it’s just for those 6 weeks, that’s fairly manageable.  If I’m not a match and we’re waiting for an indefinite period of time for a donor kidney, well… I’m not sure how the new dialysis sessions will go.  We’re hopeful we can keep a handle on things and get the same results we’ve been getting the past 2 years with dialysis.  That’s twice I’ve said Hopeful… and you know, hopeful is as hopeful does… which isn’t much.

But that’s where we are.  Some answers, some questions, some knowns, some unknowns.  Pretty standard fare in our world.

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About charmarie221

I'm married, have more children than is environmentally conscious and a herd of dachshunds. These things keep me busy.
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9 Responses to Kidney Status: It’s Getting Real

  1. susanhenschen says:

    I don’t really “like” like as I clicked Like on your post just now. This has been super educational. I’ll continue to be keeping you all in my thoughts over the next few months.

  2. Jack Grup says:

    My cousin Kinsey is doing well since her transplant. We are grateful for each day we have with her. We are hoping for a positive 6 weeks coming up for you a, Michael and the family. Big Hugs!

  3. Susa says:

    We probably drive Mike nuts asking for updates. But he should be used to us since he is the Inland Marine zoo keeper. We care and are praying.

  4. Ann says:

    Thank you for this Char. I’ve wondered about the kidney situation since I’m sporadic with Facebook. I think about your family and will be praying for Michael and the whole family as you continue to walk through this together.

  5. Shirlee says:

    Thank you Char for sharing this very valuable information. My prayers will be with you and the family through this journey❤️

  6. Wyrd Smythe says:

    “But that’s where we are.” A phrase my mother used often!

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