Memorial Day

The Memorial Day week-end was like many other weeks in that it had ups and downs.

It takes a while to adjust to dialysis. The machine’s “coverage” has to be adjusted and the drugs they give during the process have to be adjusted plus Dan’s body has to adjust to the dialysis process. He was carrying too much fluid this week and it backed up to his lungs and caused breathlessness.

Additionally he is severely anemic (even though he is receiving epogen which builds red blood cells) and this also causes breathlessness. (There are not enough red blood cells to carry oxygen.) This whole thing of Dan not being able to catch his breath scares me to death. Fortunately his nurse noticed and acted on it during Tuesday’s regular blood test and we ended up at Dr. Hranac’s office and now Dan is scheduled for a blood transfusion on Wednesday…plus they took off more fluid during dialysis. I think we both feel better already.

Definite “up’s” over the week-end included: attending Friday’s coffee group; having Chris, Sara, Jim, Bridget, Ryan, and Alexa over for Sunday brunch; going to Dick and Sharon’s house for supper on Monday; and…drum roll….a goal was achieved when Dan roared around town in his Corvette on Monday morning with me clutching the armrest on the passenger side and yelling at him to slow down.

Finally someone calls or e-mails every day to lend a listening ear and offer support. That is a definite “up.”

Monday update

Well, the drainage tubes are removed and boy it it more comfortable.....I had them for 3 months. The future is uncertain as to when the kidney will be removed. For now, we will continue with dialysis. I seem to be tolerating dialysis rather well.....it does wipe me out for the remainder of the day though.

I was notified that I was placed on the transplant list but that I would probably lose my year of waiting time that I have earned. Thus, we are looking at about a minimum 3 year wait for a new transplant.

Decisions to Make

First the good news - Dan tolerated the last dialysis treatment well....better than the other two. We are taking this as a sign of progress which is good.

Next - We learned from UNMC that the transplant team wants to take out the kidney....the question is when. As I said before....we are not surprised to hear this but it is very hard news to take. Another concern is Dan's strength...how well would he tolerate another surgery?

We've decided that we need to talk to more people before we make this decision. We have an appointment at the medical center on Monday.

Really, Really Tired

There is not much to report. Dan has had two dialysis treatments and is really, really tired. He sleeps quite a bit and doesn't have much of an appetite. The folks at the dialysis center and the people on line say that it takes a while to adjust to dialysis. The lady in the chair next to him said that she didn't adjust to it for two-and-a-half years. (We hope it doesn't take that long.) The dialysis nurses said that they have never heard of anyone who had so much trouble with a transplant as Dan did and that he is so weak from this horrible experience that it will take him longer to feel better.

Meanwhile Kathy and Andy sent us beautiful flowers. Chris and Sara took me out for a Mother's Day breakfast. Jim and Bridget had us over for a Mother's Day lunch. Dave and Ann called. Aunt Ruby called. MCM visited....many of you have e-mailed, sent cards, inquired after us,....we are very fortunate to have good friends and family members.

It Went O.K.

Dan had dialysis yesterday....and it was O.K. The nurses were nice as were the facilities, the needles weren't too bad, and most importantly he felt good when it was done. He walked out much more easily than he walked in which was heartening.

We ran some errands since he felt well and then when we got home he "hit the wall" and was very, very tired...which was to be expected. His next dialysis is Friday.

Starting a New Chapter

We will start a new chapter tomorrow...dialysis.

The kidney is functioning at 11% and Dan feels lousy, nauseous, and tired. Perhaps the edema is the worst part of it all...he has gained approximately 20 pounds of water. So dialysis is what needs to be done. Dr. Hranac predicts that he will feel much better with dialysis.

He will go to the new Overland Trails Center (which is close to our house) twice a week. I think this first time will take three hours and besides cleaning out some of the creatinine they will get some fluid off him. Family members can come to the center (some centers won't let them because there is not enough room) so I am going with him tomorrow. Dan asked if he could bring his therapy dog Sadie too....they didn't say no....they just said they'd never had a therapy dog before.

Hranac says that he wants to get Dan driving his Corvette again. We were especially heartened to hear that it probably will be very possible to travel to Chicago to see Dave, Ann, Josh, Kate, and Abby....that our Blue Cross should cover out-of-town renal centers and scheduling might be easier than we thought.

We appreciate the kind thoughts that you have recently sent us....it makes it all easier to take. I want to send out a special thank you to Horizon Middle School and Kearney Public Schools....I have missed over 60 days of school with this....and they have been extremely kind, thoughtful, and understanding about it all.

Things are not going too well...

......the last two weeks, my kidney function has been decreasing. The Dr. thinks that it is inevitable that I will be going on dialysis in the near future. I will meet with them in 2 weeks and discuss going back on the transplant list or looking for a new donor.

I had two procedures done yesterday involving my drains and am awaiting the test results. I will post when I find out anything new.



From Sandy,


It is more fun to write of good news….but I am afraid that we did not get good news last Friday. We learned that Dan’s kidney “is not functioning” and that “dialysis is inevitable.”

Dan has been extremely tired and nauseous for the past two weeks and each blood test showed a rising creatinine level but we had reason to believe that he had a blocked tube coming from his uronoma (pocket of fluid by the kidney) that would cause pressure on the kidney thereby causing the creatinine to rise. So we went to UNMC on Monday to have the tube replaced.

You know it is not good news when the radiologist wants to speak with you in one of those private rooms after the procedure…the tube was fine. It was not blocked. When Dan got out of out-patient surgery recovery we went to the transplant clinic and a PA told us that the kidney is not functioning.

We were not surprised but it is very hard news to take. This has been such a long, hard ordeal.

So we came back to Kearney. Dan has another blood test today and Monday he will see his nephrologist Dr. Hranac to discuss dialysis. On May 21st we will go back to UNMC to check the urinoma tube and the tube coming out of the kidney. Hopefully they will be removed.

Then we go on to the transplant clinic to talk about getting back on the transplant list. We imagine that he will have to qualify again. They wonder if we have another donor (we don’t) and we wonder if they can count his time on the list from July 2006 to present day since this transplant wasn’t successful (they brought that up once.)

We are a little more positive about dialysis than we were….if it makes Dan feel better then it is worth it. He has struggled with fatigue and with edema in his legs. It really is limiting. There is reason to hope that he can get by with one dialysis treatment a week. We are so ready to have a “normal life” and we would dearly love to travel even if it is in a limited way.

We don’t say it often enough….but we are so grateful to friends, family, and medical personnel who have supported us in this undertaking. You have made a difficult time easier to bear.