Heart again.

Hi All,

The current news is............100% blocked Circumflex Artery. The good news is my cardiologist was able to stent it open. So, I am back in the saddle again, so to speak.

I haven't posted to this blog, because I am using Facebook now......join me there.

Spring Update Etc.

How time flies.....I can't believe that it has been so long since I posted. Not much is new, I am still waiting for a kidney donor....I have been on the list for 3 years now. Hopefully it will happen sooner than later as every day a kidney patients health gets worse. Fortunately I am doing rather well. It may be a toss-up which lasts longer...my 401 or my life.

The big news in my life is that I caught shingles in late Jan. They are a bitch....I had an average case, but the medication Valtrex proved to be more than my body could handle without kidneys, so I ended up in the hospital for 3 days. I was hospitalized for two reasons. One was the terrible pain I was in and the other (don't laugh) was, I was having hallucinations. Now I know what a bad trip really is. Three straight days of dialysis brought my system around and recovery was fast. I still have residual pain occasionally along the nerve path from my sternum to my spine. If you have not had the vaccination for shingles, please get it now!!! Everything you have heard is true...it is the worst pain you will ever experience. One of my doctors, a lady doc, said the only thing close is childbirth. A few are lucky and have very little pain, but don't take the chance.

Other than that not much has happened. Sandy is eagerly awaiting the end of school and Sadie continues to enjoy life going on walks and lying in the sun.....come to think of it, that describes me also.

Dan

New Addition

Good news.....we are grandparents again!!

Jackson Andrew Mahalek was born to Dave and Annie Mahalek Oct. 7, 2008. Mother and son are doing well. It has been quite a fall for them as they just finished moving to a new home also. Sandy spent several days in Chicago helping them move. As usual, dialysis had me tied to Kearney. Perhaps I can get away for the baptism.

Things are going well as I recuperate form the cardiac incident...I get to go back on the transplant list this week...."and the beat goes on."


Dan

Ticker Trouble

I suppose it was bound to happen, after all the last time I had heart problems was 11 years ago. Friday night I had some pressure in my upper chest extending to the base of my neck...the same feeling I had before. My son told me to get to the E.R. so Sandy took me in. The cardiologist on call was a new doc in Kearney...Mine was in India. After some tests, he decided that I had not had a heart attack, but needed a heart cath the next morning.

Sat. morning he performed a cath and found that the circumflex artery was 99% closed. He stented the artery, and within a few minutes I woke up feeling great. It was somewhat sobering to find out that the circumflex supplies most of the blood for the rear of the heart...Dr. Sambaro said that my life was hanging by a thread.

Home again Sunday afternoon and back to dialysis today. All's well that ends well.

Hi from Kearney

We have been having a great (very busy) summer which is wonderful….particularly in comparison to last summer when Dan was battling a drug resistant staph infection and had to have the transplanted kidney removed. He was so ill then, but is doing well now.

Our summer activities in a nutshell: Corvette Show at the mall; a trip to Medford, Oregon to see Dan’s cousin Yvonne and her husband Glen; Antiques Road Show in Wichita (see photo); and Cruise Nite in Kearney. In between Sandy has been decorating/remodeling, Dan entered home brew at the county fair, we’ve seen kids, grandkids, and friends,….it has been a good summer and there are still summer days left to be enjoyed.

Hope others are having a great summer as well. We appreciate your continued support in the transplant area. Give us a call…..we are always within reach of a phone.

(This picture was taken at Antiques Road Show. Sandy has Grandma's spoons and Dan is holding a carnival cap stick. No....we won't be on the television program and the items aren't worth much money.)

Very good news

Hi All,

It has been a long time....nothing new to report. Until now. The transplant center called and told me that UNOS, the national organ sharing agency has reviewed my appeal to reinstate my waiting time due to my failed transplant. I have been awarded 300 plus days from 2006. This means that I move up almost a year on the waiting list. Unfortunately the transplant activity has been slow, but they anticipate a pick up with the coming summer. Getting Closer!!!

Home Again

We just got home from a 6 day trip to Chicago to see the kids. We had a good time spending time with the family...attending a basketball game and a gymnastics practice and just hanging out with the family.

We also spent one day in the city....we rode the Metra and went to the Chicago Institute of Art, one of Sandy's favorite galleries, and saw the special Edward Hopper show. We met David for lunch downtown......he had just found out that he had won a big settlement for his client Black and Decker. By the time we rode back home, I was pretty gassed out.

Dialysis went O.K. , it was the first time I have had done it outside of Kearney.....but I'm very happy to be home for today's treatment.

Things have been going well, but I certainly hope that my wait on the transplant list is getting shorter. For those of you unfamiliar with the process, the recipient never knows where he is on the list....when you get the call it is a complete surprise.

It's Cold

Not much new here except it has been cold!!! Things are going well...dialysis continues to go well and I feel much closer to being my old self. Better appetite has led to a gain of 10 lbs, now if I can just keep it to that I will be o.k. The family is doing well...Jim, David , and Chris all continue to do well. Sandy is staying very busy as usual. Today she is hosting a prize winning author here for the Nebraska Reading Conference. Oh yeah, I almost forgot the important stuff.....the brewing continues.....ready to bottle is my Valentine Ale and Canadian Dark Pilsner.

(See Photo)

We had a very nice time on the days preceding Christmas and on Christmas Day. Chris and Sara came down early because Chris was in a wedding so we did different things together and attended Christmas Eve services.
We were joined by Jim, Bridget, Ryan, and Alexa on Christmas Day. There was good food, fun with the grandkids, and presents. Dan got a Dogpatch Band wind-up toy similar to the one he had as a small child. It is pretty cool….there is Daisy Mae playing the piana, Granny on top of the piano, Grandpa playing the drums, and Lil Abner dancing.
The Christmas gathering ended by opening Nerf guns from “Santa” and the traditional Nerf gun fight which involves rampaging around the house and widespread chaos
.
Unfortunately we were unable to go to Chicago as planned. We had hoped to see Dave, Ann, Josh, Kate, and Abby. We wanted to celebrate Dave’s new partnership, look at the house they hope to buy, and hang out with the grandkids….but Dan didn’t feel well and I didn’t think I could make the entire drive myself.
Dan’s blood pressure has been low, his creatinine high, and his hemoglobin is low. All this means that he has been very tired. It is a delicate balance keeping all these systems in synch.
One of the frustrating things about this experience is the daily ups and downs. Some days dialysis goes well, Dan feels great, and he does things afterwards. Other days it wipes him out because something is out of balance. It is hard to plan for things. However we both feel it is important to keep trying to do “normal” things and not let the disease rule our lives. We plan to go to Chicago over my Spring Break.
Hope you had a Merry Christmas. Wishing you a Happy New Year. Incidentally, in a few days we will celebrate our 29th anniversary........29 years with the most wonderful woman on the face of the earth.

New Wheels/Nice Holiday/Great Beer

Well, here it is the post-thanksgiving week end and everything is going well. I am feeling good and and am continuing to gain strength. I have gained some weight back and am up to about 178 lbs. We are still awaiting our appeal to UNOS as to whether or not I will receive my waiting time credit for the failed kidney. If not, it will be at least another year or two before I can get a new kidney. I am not looking forward to 2 more years on dialysis, but if I have no choice........

Sandy wanted to me to get a new pickup as my old Chevy was 13 years old and with our winters, she wanted me to get a 4x4. So here it is......my new-old Ford (2004)

Oh yes, my new hobby, beer making is going very well. I just finished a batch of wheat beer and am starting on my Holiday Red Ale and Grand Bohemian Pilzner. Cheers and happy holidays.

October Update

Things are going well. There is a lot to report....

Dan is feeling well and is doing more and more every day. He has reason to believe that wait may not be as long as we previously thought....perhaps a year. So we are very happy about that. Of course, Dan reminds me that it would still need to be a good match.

He's also had good test results and they might even cut back on the amount of time that he does dialysis.

We went to the Nebraska/USC football game with our friends Dick and Sharon. I was probably the happiest person there. I was just glad to be out doing something "normal" even though Nebraska lost badly.

Last week-end we went to Chicago to visit Dave, Ann, Josh, Kate, and Abby. We drove down (fast) in the Corvette on Friday after dialysis and came back on Sunday. We had a great time on Saturday going to a flag football game and a soccer game. The kids had a card and a cake for Dan's birthday (65) and we went out to eat at a fancy Italian restaurant in downtown Chicago.

So things are going well. We appreciate the way that our family and friends are hanging in there with us and we often think of your words of support.

Lousy News

We recently found out that UNOS (the national organ donor group) turned down our appeal to get a year back on the transplant list. They'd turned us down before but our surgeon wrote a letter and typically his appeals are successful....but not this time. The cut off time on transplant failure is 90 days and the kidney failed at 92 days....and a deadline is a deadline.

I am tremendously upset about this for several different reasons but of course that doesn't do any good. Dan is being the calm, rational one lately. It doesn't seem like any aspect of this transplant has gone well.

It also doesn't help that Dan is having a tough time right now with fluid collecting and pressing on his lungs which causes him to be short of breath. He's also having trouble with "coverage" which is getting all the toxins out of his blood. However, his nephrologist is all over these problems and we have hope that they will be resolved.

Meanwhile Dan is keeping on.... He is taking some of his Civil War collection to Alma High School today to show Christopher's American History classes and give a guest lecture. He's a tough guy.

Like the Energizer Bunny.......

.....I seem to keep going and going and getting stronger each week. Dialysis is still going well, although I can not get used to the damn needles. We went to the family reunion last weekend and had a great time. I saw cousins that I had not seen in 47 years....Harold and Susie, and it was wonderful to see Jim and Cheryl again. Jim and Cheryl, you should be very proud of your daughter Stephanie, she is a wonderful gal and I bet a terrific teacher. We enjoyed a nice visit with Ruby P. and Phylis K.

Sunday morning we all climbed Boot Hill in Ogalalla......as long as I can walk back down I figure it was a successful venture. I have been doing my mile walks again and have begun to lift weights again. I hope I continue to improve as we have tickets for the Southern Cal --Nebraska football game in a couple of weeks.


Finally, here is a pic for all of you who graduated from SCHS.......this business was frequented by a number of us late at night for burgers and Pepsi. Who can tell me what it was and where it was? Hint....it was about 13 miles from Julesburg.

Back in the Saddle

Well, I'm back in the saddle again doing some more activities and wonder of wonders we went to Omaha to visit friends who flew in from Vegas. What an experience....going to Omaha for fun, not medical procedures. Oh yes, did I mention that I felt so good that we took the Corvette! The Vette has only 3 inches of ground clearance, so I felt like a pretzel by the time we got home, but what a fun drive.

I had to be back on Fri. for dialysis so we could only stay one night......but that is better than nothing.
We will probably try to go to Julesburg for the Lanckriet family reunion in a couple of weeks.

Sandy's Gone

Dear Chris—

You are here to take my place while I am visiting my sisters in Rochester, New York. This is a partial list of what needs to be done:

#1 Walk Sadie every day on the Hike Bike trail at 6:45am. This way she will see all her little dog friends. Watch out for the nasty Pekinese.

#2 When you are done walking Sadie…feed her, give her her medicine, pet her, and tell her she is a good dog.

#3 Keep track of how much phosphorus your father eats. Too much phosphorus and his back itches and you will need to scratch his back. Ditto on the potassium.

#4 Water the flowers and the tomato plants on the patio every day. Pick the tomatoes, but don’t let your father eat too many. (See #3.)

#5 Call Sharon. We talk every day. Hot topics with us are the President, Cheney, Republicans in general, the war in Iraq, Nebraska football,….you can probably talk about the weather.

Well that’s the top five. There is more that I will share with you verbally. I don’t recommend taking the Corvette when you go out at night…your father will notice. Also eating at McDonalds every day is not a part of the renal/diabetic diet.

Call Jim in if you need reinforcements. Call Dave if Jim can’t make it. Call in the coffee group, the class of ’60, the KJHS faculty if necessary….and if none of that works then call me.

Love—

Mom

Fourth of July Fun

Sorry we haven't posted for so long....it took us a while to recover from the Fourth of July.

Dave, Annie, Josh, Kate, and Abby came to Kearney for the Fourth of July. They joined up with Jim, Bridget, Ryan, and Alex plus Chris and Sara...plus a couple of dogs...and fun was had by all. We went swimming, played in the park, had water gun fights, played on the slip n' slide, did chalk drawings, went to the Big Apple fun center, plus hauled out the legoes, Lincoln Logs, and dolls....you get the point.

Poppa Dan was a trouper...even though he had just had surgery he attended a lot of the activities and even won the ladder ball tournament (unique game) at Jim and Bridget's barbeque. He beat out 19 people...including the young athletic types.

Dialysis is going well. We are doing some pre-transplant testing because you have to qualify every year (thank goodness they are letting us do this in Kearney.) His 17 staples will probably come out Thursday which will be nice.

So all is quiet now that everyone has gone home....and all is well.

Josh, Ryan, Alex, and Kate

Abby in the park

Dan, Dave, and Chris

Jim with Dan, the victorious ladder ball champion,
and runner-up Shane

Home Again

Many people said, "Hope to see you soon!" when we left UNMC on Saturday...meaning they hoped Dan got a transplant soon and returned to the hospital under happier circumstances. I hope that is true...but for the moment we are glad that he is simply feeling well.

We have unpacked and are getting back into our routine. Dan had dialysis yesterday and he's hit his target weight so they are not taking so much fluid off him (which made him tired.) He's had company and phone calls so he's been busy during the day and is tired at night.

We really dreaded and feared the kidney removal...it just seemed so final....but the goal has always been for Dan to feel well so we are still achieving that goal. An unexpected benefit of this whole experience is the support and encouragement of family and friends....for such an extended period of time. Thank you for being there for us...it has been the greatest gift of all.

Coming Home!

Dan will be dismissed tomorrow morning! Actually he could have been dismissed this afternoon if his wife wouldn't have been shopping.....but Barnes and Noble called me.

So I am not the only one that thinks he is doing extraordinarily well. Nonetheless we will be glad to be in our own home with our own dog.

People here have been very thoughtful. We know so many of them and they have been genuinely sorry to learn of the transplant's failure and very glad to hear that Dan is doing well now.

The next time I publish....we will be home!

Surgery a Success

Dan's surgery went absolutely as well as possible. It was quick (one hour) and the kidney had not embedded itself into the tissue too much so it was easy to take out. There was a big pocket of infected fluid under the old incision and the kidney was thrombosed (black and blue) because it did not have blood flow.

Dr. Mercer (Canadian and very nice) predicted that Dan would heal up quickly and feel much better without the infection and the kidney.

There were some problems...he had to be admitted last night for three units of blood and there was some confusion this morning about if he was Dan J. Mahalek or Danny J. Mahalek. "How many of us can there be that were born 9-22-42 and are having a nephrectomy?" he testily inquired.

However all was resolved. Surgery is over. Dan has eaten, been a smart aleck to the floor staff, and is napping. Needless to say we all are feeling better.

Surgery Thursday

Dan has been having a tough time lately. He’s been having high fevers and his incision site hurts and the bottom line is that the transplanted kidney needs to come out because it might be causing some of these infection problems.

This is a milestone we did not want to reach, but if removing the kidney makes Dan feel better then we are in favor of it. So the surgery is scheduled for Thursday morning.

There are other good things than can come of this….Dan can quit taking the anti-rejection drugs which suppress his immune system and he can heal up before I return to school. Also, they will not transplant a person who has an infection. So we are ready for the kidney to be removed.

We go to Omaha tomorrow for the pre-op stuff and the surgery is first thing Thursday morning. I will take our laptop with us and update the site after the surgery.

Thank you for all your good thoughts…they mean a great deal to us.

Infection

The latest news is that Dan is battling an infection and has been for a week or so. He's had IV antibiotics twice and is taking pills. They also removed the catheter in his chest in case that was the cause of this problem.

He is feeling a little bit better so maybe they've got the infection on the run plus dialysis three times a week might be helping.

Dave, Annie, Josh, Kate, and Abby are here from Chicago plus lately we've been dog sitting two dogs....so things are rocking around our house. We need to keep his strength up for all this.

Three Times a Week

Well we’ve been on a tour of medical facilities and in a nutshell there is good news and bad news….

Bad News: Dan has severe anemia, infection, poor dialysis coverage, a pocket of fluid near his lungs, and severe malnutrition.

Good News: They are doing something about all of this. He’s had a blood transfusion and an IV of antibiotics. Unfortunately he needs dialysis three times a week to get the coverage he needs and hopefully all of these things will help with the nutrition.

I felt really guilty about the nutrition part and I would like to go on record as saying that I really tried in this area….even though he wasn’t hungry. However, Dan got so run down that his body couldn’t make good use of the nutrients and somehow the improved dialysis coverage will help with this.

We are sad that he needs dialysis three times a week. It will certainly cut down on flexibility, but if he feels better then it will be worth it.

Personal Aside: I continue to be impressed with Dan’s personal courage and his indomitable will. He still has a sense of humor about things and never gives up. He is a very strong man that I am proud to have married.

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.

Good Test Results

On Monday, I had good news from my appt. at the transplant center. The creatine levels are stable and blood chem levels are normal. The drain tubes in my kidney and abdomen are doing their job and have to stay in for another 30 days at least. I wish they could be removed but as long as I am getting better, I can put up with them. My eye is doing well.....on Tues., the doc said that I am healing well and probably will not need surgery. We will check again in a month. Thank you all for the well wishes and emails.

I must be feeling better.......Saturday Sandy and I are going to the Merryman Performing Arts
Center for a Buddy Holly retrospective called "Rave On." Remember "Peggy Sue" and "Oh Boy?"