Good morning, Bill,

Oh how we know the frustration! So much so with the Cleveland Clinic's Amyloidosis team, that out of our frustration, we just went to Ohio State's Amyloidosis Clinic. All I can say is "what a difference!" Needless to say, we have transferred John's care to Ohio State even though we are about 3 hours away.

The one thing we learned is that you should be referred by the U of M Amyloidosis to the specialties you need -- ie, nephrologist, urologist, neurologist, etc. That wasn't how it went for us at the Cleveland Clinic. John had to ask to be referred to the Neurologist who really just fluffed him off to pain management and she said she didn't know enough about Amyloidosis to know what to do and was to educate herself and devise a plan. After 4 weeks of nothing, I contacted them. That started another 3.5 weeks of back and forth to this physician and that physician to get clearance for an injection. In the meantime, we got our spring covid booster and honestly, it helped relieve some of the neuro pain! Rather than being at a constant 10+ with tears streaming down his face and needing a cane or wheelchair, he's hovering at a 7! So, thankfully, he was able to tolerate the drive to Columbus!

What we found so frustrating is that the various physician's offices place the burden to contacting this or that office for things. Why doesn't that office's physician or staff call the other office and get the information needed or referral of the patient as they can generally get you in sooner. But, nope. It's all placed back on the patient.

We so understand your frustration and all I can say, besides I'm sorry, is that you have to be the squeaky wheel and keep on them. There's no reason the PCP can't either have you do a urine specimen and run the urinalysis and go from there, even if it then means referring you to a urologist. I highly recommend you getting referred to a nephrologist/kidney specialist regardless as your kidneys are really important in this disease. John was not referred to a nephrologist until April. He's already in Stage 3B Kidney Failure.

So, be a good advocate! Keep pushing and demanding to see the specialists that you need for this disease.

Hope you and your wife are doing as well as can be expected!

Dottie & John

Thanks Dottie. Prayers for John. I'm going to UofM and this morning I got a reply that just Saud my numbers are elevated and that alot of patients are that way. Told me to see my PCP and perhaps a UTI. I have no other symptoms for a UTI. Other than lower back pain. I just know I had blood work before u started meds and it was fine. Then 16 days later the levels are high.

I sent my PCP message and he said to talk to the specialist. Now I'm getting shoved back and forth. 🙄 It's frustrating.

Hope things get better for John 🙏🏼 Bill

Good morning, Bill,

How's your kidney function? John's numbers are high due to his stage 3B kidney failure. You can look at the BUN and creatinine levels and see where those are. That's my best guess, but your physician should explain all of it to you -- even though they rarely do!

We are leaving today for a second opinion type appointment at The James at Ohio State in the morning since we get almost no information or explanation for anything from the physicians we're seeing at the Cleveland Clinic. We love the Clinic for many things, but Amyloidosis is not one of them. If John were the hereditary type, they treat you differently and you attend their Amyloidosis Clinic. Wild type or AL type, no. You're on your own. Go figure.

Not sure my answer helps, but it's a start!

Take care,
Dottie