Monday June 25th, by Lisa
(I made this a two parter because it is lengthy.)
Many of you know about this part of my life but many of you do not. In 2010 my husband Mark found out quite suddenly that he was in kidney failure. He had gone to the doctor for routine blood work and they called the following day to say that his creatnine level was unusually high and wanted him to have a renal ultrasound.
Mark has had high blood pressure for many years. Whether the kidney problem was due to the high blood pressure or the high blood pressure caused the kidney problem who knows. It could have been a shock to his system that threw everything out of whack.
Mark has always had a kidney that had never formed properly so basically he only had one good functioning kidney. He did not know this until he was an adult.
I will never forget the day that he told me the hospital had called to have him come in and do an ultrasound. He had not experienced any problems with urination or anything like that but his ankles were always swollen. He told me this was because he had to wear boots to work. You know when you have one of those moments that you just know is going to change your life? well this was one of those. It was a Tuesday in April 2010. We were at home in the kitchen and I just had this feeling that our lives were about to change forever.
On the day of the ultrasound I was at home and just before the appointment time the hospital called and had some questions about an appointment they were setting up with a doctor I was not familiar with. The appointment was for Mark and I ask what kind of doctor this was and the lady on the phone said the doctor was a nephrologist. I said why does he need to see a nephrologist and she said ” because he is in kidney failure”!!!!! my heart almost stopped. ( I don’t know who this woman was but I still want to drag her through the phone and slap her for the way she delivered that information to me.)
I cancelled an appointment I had that day so I could be at the ultrasound. The ultrasound showed that although there was no problem urinating the kidneys were not filtering as they should.
We later met with Mark’s primary care physician and he explained that the creatinine level should not be that high it was about 4 and a normal level is 0.5-1.2 for adults. Something was going on and he wasn’t sure what. He told us rather matter of factly that in the near future Mark would probably be put on dialysis. He set an appointment for the nephrologist for later the next week.
When we met with the nephrologist he also told Mark he was in kidney failure and had only about 30% kidney function. This would continue to decline but he could be put on a diet and medication regimen that could slow down the decline. He recommended he get the port installed for the dialysis. I asked about a kidney transplant and he said you were not eligible for a transplant until you had been in dialysis at least a few years. We later found out this was BS. I asked if I could be tested and he said I would first have to have a kidney biopsy and this was very painful and dangerous. We also found out later this was BS. All of this information was coming from our local doctors. Mark had been seeing his doctor every six months. We could never understand why Mark’s creatinine level was getting higher through the last few years and this was the first time we were hearing anything about it.
After hearing all of this we decided it was time for a second opinion. A woman I worked with had a son with severe kidney problems and he had gone to Vanderbilt Medical Center in Nashville and had gotten great results.
I called Vanderbilt and set the appointment but they couldn’t see us until the end of June. Vanderbilt is about a four hour drive for us. In the meantime we had a cruise scheduled for the Caribbean. We decided to go ahead with the cruise and Mark would watch his diet and take his meds.
At Grand Cayman, one of the stops on our cruise.
The cruise was a lot of fun but with the worry of the kidney issue it did sort of cloud everything. We just wanted to get back home and get to Vanderbilt for the tests.
The tests at Vanderbilt revealed the same thing. Mark was in kidney failure. However the doctors there had a different approach. They wanted him to have a kidney transplant. They would do additional tests to get him on the National Kidney Transplant list.
Here are some facts from the National Kidney Foundation:
Another thing was that Vanderbilt Medical Center was not in our network for insurance so we were receiving some crazy medical bills. I was afraid to go to the mailbox. Once Mark got put on the Transplant list he went into a National Network and he was covered but we still racked up a lot of medical bills prior to that. If your doctor is not in the Network the insurance doesn’t have to pay 50% like you probably think or have heard. They can actually pay whatever amount they choose.
The doctors at Vanderbilt wanted Mark to find a kidney donor otherwise it could take five years to get a kidney. How do you ask someone for a kidney?
I knew that I was the same blood type and I immediately wanted to be tested.
Part 2 coming up on Wednesday. I love this story and the way it worked out. I love to tell it because I hope it will encourage living kidney donation.
Love your day your way.