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Getting Familiar with the Hospital

Good morning on a sunny Saturday! we slept in a little back after a later-than-usual night. I haven’t mentioned too much about this on here, but we’re in the midst of many back-and-forth trips to Rochester, MN working on getting my brother Matt a new kidney. He was officially put on UNOS Christmas Eve (nice day for that, eh?) and we’ve been doing tests, type matching, more tests, more work, etc, etc…

Mom and Matt (obviously) have been doing the lion’s share of the appointments and visits – and are doing their best to keep spirits high:

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This week’s batch of appointments took longer than expected and after a particularly rough week, were looking at a late-night drive home in the dark or another night away from home. Ben, Dad, and I didn’t want them to have to pick either bad option, so we set off after work and met them three hours into the drive, stopped for a little dinner, and then Dad and Ben drove the rest of the way back in the dark.

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We’re struggling with Mayo Clinic’s refusals to let us talk to doctors about the upcoming procedure. They have aggressively pushed consent forms at Mom and Matt to sign and give not only contradictory but often implausible information when asked. For example, all of my Mom’s blood work and test results “vanished” from the web site where she previously had been able to go and see her information. The nurses claim the results “were lost”. Huh? Some tests she had done twice… and the nurses quote specific results to her… yet it’s impossible to think they would be able to remember one patient’s results from a test taken two months ago. It’s fishy. It’s scary.

We realized that we don’t have good matches for organ donation within the family as we had thought. It was a devastating blow and one that I still personally am not over. Mom did all the invasive type-matching and was declared an “ok” match but not a “great” match. Still, after talking to the doctors we understood that would probably be the best match and option given the time frame we need this to happen in.

Then Mayo started pushing us down a “paired donor” program. It’s new and obviously a pet project the hospital is trying to gain traction from. The idea is to pair you with others in a similar situation and “swap” so both parties get a better end match. Sounds good, right? Well they are looking at a match in Arizona… and after surgery there, transportation to MN, and the second surgery, we’re talking more than 36 hours. A “live” kidney – the kind that stands a significantly better chance for long-term success, is one that’s no less than 8 hours removed. So we asked about flying to AZ to do the surgery there. We were told no without any reason or explanation.

Did you know 25% of people with a non-“live” kidney are on dialysis within the first WEEK after transplant?? Did you also know a hospital only tracks “success” for the first year? They don’t have to report anything beyond that point. It feels conflicting because the more surgeries they do, the more that boosts their ratings and numbers. Plus, if the focus is all short-term, there’s no benefit for them to work on finding solutions that would last decades. I don’t understand. None of us do and each time we refuse to sign until we can sit down and just talk to someone who can help us understand, we get denied and the consent forms shoved back in our faces. It’s been emotional the past couple of months but this is making it horrifying.

We’re going back next week to try again. Matt has another two days of tests and we’re hoping we’ll get better luck there than continually calling Mayo trying to find someone to talk to.

I am not yet sure how much of all this I will post because it’s terribly difficult even to write something without being an emotional mess, but I wanted you guys to know a little of what’s been going on and one of the reasons things have been so sporadic around this little blog.

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3 Responses

  1. Hugs to you Ali – and your family. Do speak up at the clinic. It’s the only way to get the information you want and need to have. Talk to their HR/PR department about what you are experiencing as well.

  2. All that seems super frustrating. Hospitals are no fun and even worse when things are like that.

  3. Hope everything works out good for Matt & the family. I do some doctoring at Mayo (cardiology, vascular) for the past 12 years and have learned to ask any questions. A dr. once told us there are no dumb questions, just ask. Good luck this week!

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