Home Sweet Home

I apologize for not letting you know earlier that we are officially home. I think we were simply so happy to be in our own home that we didn't post.

Sara single-handedly loaded the Highlander in Omaha and Bridget unloaded it once we got to Kearney (Mahalek women are strong), Jim came by after work and set up the television and computer, Dick and Sharon brought supper, Sadie went out to patrol her yard and rolled in something smelly (she is no longer a fancy city dog), and all was well.

Dan has visited his coffee group and Sandy has been to Horizon. It is so nice to see good friends and catch up on things. We've been to the Good Samaratin Cancer Center where they will do his blood testing (like they did at UNMC) and it seems nice. There have been some things to work out between UNMC and Kearney and some miscommunications...but that is normal.

The only dark clouds are that Dan is still struggling with nausea (he only eats about a packet and a half of oatmeal a day), his incision still "weeps," and his legs swell to an alarming size if he is up for even 15 minutes. (They can't give him diuretics because it is hard on the new kidney.) It is getting kind of old. However, we got medicine for the nausea today....so maybe he can keep some food down and he is keeping his feet elevated and maybe tomorrow we'll try those support stocking things.

Otherwise....Sandy feels good and will start back at school next Wednesday for half days and Sadie is thrilled to be home and we continue to be overwhelmed by the thoughtfulness of friends and family.

Note: Our lawn looks better than it ever has because John and Jake Weis have been mowing it (a huge undertaking) so we (all three) were welcomed home with a beautiful yard and banners and balloons from Jim, Bridget, Ryan, Alexa, Linda, and Jeanine. My favorite part of the big banner was a stick figured Grandma handing a kidney to the stick figured Grandpa....and Sadie got her own banner too.

We're Coming Home!!

We received the official O.K.....and we are driving back to Kearney on Tuesday morning!!

Of course there are more hoops to jump through....Dan is having blood transfusions in the UNMC clinic and they will run from 3:00 until 9:30pm and then they want to do one more blood test at 7:00am on Tuesday morning....but it is our goal to leave Omaha at 9:30am on Tuesday.

Hopefully the blood transfusion will give Dan some more energy. He has been so incredibly tired. Hopefully going home will help in his recovery....Dr. Wrenshall said that she thought he would feel better if he was at home where the medical center wasn't bugging him. (I have to agree.) We will be back in time for his birthday which is Friday, September 29th.

Dan will have testing in Kearney three days a week when we get back. We have to come back to UNMC in two weeks....and I don't know much more past that.

Must close...need to start packing!

Pray for Dismissal

Well say prayers that we will be dismissed tomorrow....maybe MCM can climb Harney Peak and send up an Ogalala Sioux prayer and I think all the other prayers you've said have worked in the past so if you will all pray again....and we can get out of here. It's been fun...but as far as I'm concerned it is time to leave.

We will be at UNMC from approximately 7:00 - 1:00 on Monday and they will give us the word then. I think the main deal will be Dan's creatnine level which has been perfect for the last couple of days (1.0) so we have reason to be hopeful, but as Dan said we won't be surprised if they ask us to stick around for more tests.

Speaking of prayers...Rich and Annette sent us a prayer blanket from Faith United Methodist Church. It is a very thoughtful gift and we've already put it to use.

Dan has spent most of his "time off" sleeping. We go in for blood tests early in the morning (7:00am) and then come back to the apartment. He's had trouble with nausea and cramps, but the incision site is getting better and leaking less. Sara watched her sister Rachel play in a volleyball tournament on Saturday and saw her parents and aunt. Sandy and Sara went to Lauritzen Gardens and St. Cecilia's Cathedral on Sunday. Sadie has gone for a few walks and had a hysterical fit when a squirrel showed up on our balcony.

Dave's law firm won their big lawsuit...they represented Black and Decker and sued Bosh Industries for patent infringement. Dave caught Bosh's expert witness lying... a key to the verdict. Jim's been busy with surgeries and was on trauma call this week-end. Chris took his Economics students on a tour of the Buckle warehouse and attended Chris Watts' aunt's funeral on Saturday. Chris has also had people take pity on him since Sara is gone and they've been inviting him over for meals or bringing food to him.

We are getting ready to juggle our TV watching....it's the new shows versus the Bronco game. I think Dan is missing his Tivo.

Well as Sharon said....you will hear us yell from Omaha whichever way the dismissal verdict comes out. We will also let you know via the blog.

Things Are Going Our Way

Yesterday was the last long day at the clinics for treatments (Yay!!) There is a lot of "hurry up and wait" at those places and then it just takes a certain amount of time for those IV's to drip into Dan. We have been spending seven or eight hour days at UNMC every day and then come home tired. We will keep going to UNMC every day, but it is just for blood tests.

Dan's tests have been coming back with good results...creatnine is 1.2 (1.0 is perfect) and blood titers are 32 (they want 16 but if the creatnine is good then that means his body is "accomodating.") So we still have hope to come home on Tuesday.

Dan is feeling better every day which is really nice to see. His current problem is drainage from the incision. The drainage can soak the hospital scrubs he has been wearing and we could easily change that gauze pad 10 times a day. The medical people have looked at it and says the wound is healing well, there is no infection, and this is normal....but they are looking into something called a wound vac which is expensive, but would help this situation.

Sara is learning more about her future in-laws than anyone would want to know. I don't think the mailing of the wedding invitations has been cancelled. She has been a good sport and a great help to us.

I found myself telling one of the nurses yesterday that I really missed being around the kids at school. Dan gave me kind of a funny look and we laughed about it later....but I do miss them. It is really hard to be around so many very, very ill people. Our room at the clinic was next to a three-year-old getting an IV treatment for cancer and she cried for 45 minutes and just kept saying, "Owee, owee, owee," over and over....and a mother was pushing around a stroller and an IV pole that was hooked up to her nine-month-old who was absolutely motionless...and some of the cancer patients are so thin and move so slowly. It will be nice to see some active, lively, noisy people at school.

Must close. We need to go for the blood tests....but it is a very short day!!

Treatments, Treatments

Dan is out of the hospital, but there are still tests and treatments to be done. If fact there is something every day...yesterday we were at the hospital from 10:00am until 4:00pm and today we were there from 7:00am until 3:00pm. Tomorrow is a long day again, but Friday, Saturday, and Sunday are short days (so far) and on Monday we meet with the transplant team to see if we can return to Kearney on Tuesday. (We hardly dare to hope it....we've been here since August 17th.)

There was reason to wonder if Dan had a blood clot in his leg (he doesn't) and he has quite a bit of drainage from the incision and his feet are really swollen...but other than that...

Joe and Virginia Meuret visited yesterday which was nice and Steve England stopped by and picked up some things to haul back to Kearney for us. It is so nice to see people from home. We saw Ben Homan in the blood cleansing clinic on Tuesday. He looks good.

Sara has been a trouper. It is kind of like "Driving Miss Daisy" squared. She drives us to wherever we are going. Then when we are parked she sprints around and helps Dan with the walker as she is carrying things in for us. Sadie loves taking long walks with her. I can drive now, but if I'm high on pain pills we have her drive. She's working on a commisioned print ad when she's not helping us. I've learned more about the wedding from her than I have from Chris so that is a nice benefit.

Thank you for your good thoughts.

Free At Last, Free At Last

I am home! At least in my Omaha home. I checked out tonight at 7:00 pm. I am pretty wiped out right now, by wanted to let you all know the news and thank you for your wonderful support and prayers. I will try to post more tomorrow....as of now I have 8 hours of outpatient treatments to tomorrow starting at 9:30 am.

A Good Day

A tornado was spotted in SW Omaha last night so they moved all the patients into the hallway basically during the entire third quarter of the NU/USC game....another memory for the transplant memory book. Joan and I were watching the game with Dan. Periodically she would call Gary in Greeley to get the score.

Joan packed up her red Magnum and drove into the west this morning. We will miss her. She was here during a difficult time and we appreciated her caring help. I do have to admit that Sadie and I are anticipating an easier regime with Sara. We don't think Sara will be so bossy.

Dan had a good day that started with Harlan and Shari coming to visit. Shari gave us thoughtful gifts and Harlan brought his famous banana bread and it was so nice to talk with someone from home.

The surgeon who is the non compatible transplant expert came by to visit. I think she would have dismissed Dan today...but Dan wasn't feeling very steady on his feet so we decided to wait until tomorrow. He's had a hard time getting unhooked from all the machines to get up and move about.

I don't blame him for wanting to leave. Today was his 11th day in the hospital.

Thank you for all your cards, e-mails, blog comments,....we truly appreciate them all. I read the e-mails and blog comments to Dan over the phone and we open the cards together. We are so fortunate to have such a caring group of friends.

Vistors from Home

Today was a day for visitors which was nice. Jeanine came bearing the game day newspaper and bottles of green tea. Then later Gary and Linda came with a huge banner with signatures from HMS and cards. It was so nice to see friends from home and catch up on news from school. It was very thoughtful of them to hike up to the eighth floor of Clarkson.

We have the Horizon banner up along a long shelf near the top of the wall. It is unfurled so that the picture of Sadie shows up. Some of the comments are a kill...."My grandparents remember you" and "New kidneys rock." The boy from our school that received a liver transplant wrote, "Congratulations on the kidney but livers are better."

Dan talked to the surgeon who is the expert on non compatible transplants. Dan is not exactly following the path others have followed but some people at Johns Hopkins have had the readings he's had and all turned out well....so they will just keep on with the treatments and monitor his progress through blood tests. Then when the treatments are done they will just keep up with the blood tests. (I took this to mean that we could be in Omaha for a while.)

Dan's tired and they are pumping all kinds of fluid in him via IV to keep the kidney working and as a result of that he is puffy and his legs are the size of sequoias.

Dan went to sleep and I left. I was waiting for Joan to swing by and pick me up in front of the hospital. I was sitting on a bench next to another lady who asked where I was from. Well....I was from Kearney and she was from Lincoln. Her husband had a hernia operation and mine had a kidney transplant. I donated a kidney to my husband and she'd donated a kidney to her husband as well (she is an O, the universal donor)....and then she said, "Don't worry, it will get better. My husband had trouble with fluid in the abdomen (!) and with leg swelling (!!) Then a couple of months later everything resolved itself and he felt good."

Wow!! An angel? A coincidence?

What a Difference a Day Makes...

Guess who's pitching a fit to get out in time to watch the NU/USC game at the apartment?

Quite honestly Dan looked like he was on Death's doorstep yesterday...or at least on the same block....when he came back to the room from surgery. And now he's had a bath, brushed his teeth, eaten oatmeal, and started hassling the medical people to get out. I can't believe it.

He was supposed to have a blood cleansing treatment this morning and they've held off on it. They might do it this afternoon. The transplant nurse said they will try not to do treatments that give him heart attacks...and we appreciate that.

Also....in spite all of his other problems....it appears that he will not need to take as much anti-rejection medicine as previously thought and that's good news.

As I said, what a difference a day makes.

I Didn't Think it Would be This Hard

Surgery took place today and the surgeon was pleased with the results. He removed the fluid which didn't look like much, but as he said....there isn't much space in there.

They did a biopsy in surgery and it doesn't appear that the kidney is being rejected. I hadn't realized this was a worry, but some of Dan's symptoms could be caused by rejection and it was nice to rule that out. A more complete biopsy will come back tomorrow.

Stevens said that Dan is a unique and complicated case (we all knew that) and that they need to take things one step at a time. We talked about all the different treatments he is undergoing and all the different side effects that drag him down. He talked about slowing this down and giving him time to recover. He was going to look into it and see if it was possible.

Dan is hanging in there pretty good....he's mentally strong and optimistic and always inquisitive....but he's just so tired and worried. This morning he told me, "I didn't think it was going to be this hard...." I feel so badly for him.

This non-compatible kidney transplant is a very complicated undertaking. We knew there would be detours on the way and we haven't had too many so far. Hopefully we are back on track.

It is Hard to Know What to Say About Today

It is hard to know what to say about today....

Dan was supposed to be dismissed today, but near the end of his plasma pheresis treatment he had a reaction to the fresh frozen plasma which they were giving him to boost his clotting and he had an "episode" that they thought was a heart attack....it wasn't. However, Joan and I arrived soon after it happened and there were some shook up nurses plus watery blood and mucus everywhere. What had happened was that Dan had a reaction plus the fluid inside this massive hematoma had shifted and made him pass out when he sat up plus the fluid leaked out of his incision.

Honestly this blackish purple bruise is the size of Texas and it is hot and tight and not a pretty sight. Medical people have come in and asked Dan if they can just look at it. I guess these things happen during surgery but this one ended up being very big.

Now they want to reopen the incision, remove as much of the fluid as they can, and staple him up again. This fluid would be a breeding ground for infection and could put pressure on the new kidney which is not a good thing. Dan and the surgeon are pretty calm about this all....more calm than I am. However it is obvious that this huge hematoma is not a good thing either.

The surgeon will make a definite decision tomorrow morning and if the surgery takes place it will take place at 2:00 in the afternoon and last from 30 - 60 minutes. Dan would be returned to the step down intensive care floor (8th floor Clarkson) that he is on now after surgery. The earliest he could be dismissed from the hospital would be Saturday.

There are a couple of other troublesome things....and as one of the transplant team said, "This non compatible transplant is so new, you are only the fifth transplant, that we don't know what to expect on some of this."

It's hard to believe that last week at this time we had just finished our surgeries. We are still moving forward...but I think it was a baby step today.

Nurse Ratchett Posting

Hello this is Nurse Ratchett...Some of you continue to call during nap time, even though it may be an odd nap time you will still not be able to contact the patient !!
They are very lucky to have such caring friends, thanks for your calls...
Sandy and Sadie can complain and call me any nurse name they want but their wrath will be nothing compared to what the real Nurses Kathy and Gary will voice if the patient does not improve.
And Sandy will thank me when she starts walking Sadie again and doesn't have to take the stairs !!
Honestly I am very glad to help my Sister and Brother-In-Law. This story is quite remarkable, esp. when you see it in person. I have always admired their relationship but seeing the love, understanding, patience and humor that the two of them share now is quite wonderful.

PS: Maybe we should not advertise the fact that "Stroup's" have large healthy kidneys..if any of us go missing, check the transplant hospitals !!
Thanks to all of you for calls and postings, they mean at lot to all of us.
Love,
JoAn

Good News - Bad News - Other News

Well I haven’t seen any of you coming to rescue Sadie and I from lockdown….and the people that I have talked to told Joan to keep up the good work. Sadie and I are discouraged.

It’s Good News/Bad News with Dan…

Bad News: He is taking a steroid/plasma treatment today. The steroid treatment raises his blood sugar. The plasma treatment raises his blood pressure. The nurses check both frequently and the whole thing is tiring and annoying. He is tired of lying in bed…there is no way he feels comfortable. He is also tired of being in the hospital.

Good News: This is Dan’s next-to-last steroid/plasma treatment. The last one will be Tuesday. They are doing this treatment more slowly so it doesn’t make him so sick. His blood cleansing is going very well. They may shorten the number of these treatments. He is up and walking the halls. He can get in and out of bed by himself. Wes and Sharon McCord stopped by and it was great to see someone from home. Wes’s brother is across the hall with a knee replacement. They are saying that Dan will be released on Tuesday.

Other News:

To answer a question…they took my left kidney. Does that mean I am left with a right-winged kidney? Appalling. There were a couple of funny things in connection with this kidney.

First…as I was in Pre-Op a young person named Heather came in to mark my stomach for the four incisions. The longest is above my navel. Then there are those high left and low left and one on my left side for the surgical instruments. (None of the incisions are very long.) To show it was official she initialed it and put a happy face by her initials.

I was horrified. Those of you who know me know I hate happy faces and I’ve had people (you know who you are) taunt me with happy face gifts etc. I wanted to tell Heather to erase the happy face but then decided not to upset the surgical people just before surgery.

Unfortunately happy face is still on my stomach…close to an incision and covered with clear tape so I can still see it and be annoyed by it.

Second…Dr. Stevens (Dan’s surgeon) keeps commenting on the size of my donated kidney. I guess it was large for a woman’s kidney which was good news for Dan although he complained about it being so big that it pushed against his abdomen. This makes me feel like some kind of freak of nature.

However, Dan is fortunate to have a large, hard-working, Stroup kidney that has worked overtime to bring his kidney functions to normal. That kidney could also go out and drive cattle and bale hay if it needs to.

Other good news….Today is Katelyn Jean’s third birthday which will be celebrated with a horse theme…That’s my girl! Also Drew Anderson has been called up to the majors…to the Milwaukee Brewers….Way to go Drew!

Thank you for your good thoughts and prayers. They are working.

From One Lockdown to Another

I broke out!! I got out of the hospital and let me tell you it wasn’t a moment too soon. I felt terrible leaving Dan there….but it is every man for himself at this point.

I hated being in the hospital. My floor was very loud and I don’t think I slept for two continuous hours the whole time I was there and I was very ready to get out. It was good to see the friendly faces of Harlan and Herb and Chris and Jon (although I wish their aunt was well.)

Dan was moved from the UNMC intensive care to a step-down unit on Clarkson’s eighth floor. He’s had some kind of up-and-down times (as I did, but not to his extremes.) I felt sorry for him this morning because he had not slept last night because of heart arrhythmia and looked so terrible…but he looked better when I saw him at noon and sounded better when I talked to him on the phone. His kidney function is now normal.

I was going to go back to see him tonight, but felt really tired when I got to the apartment so I decided to cancel the evening trip. Sadie was very glad to see me and ran circles around the apartment greeting me and looking for Dan.

However…..there have been some changes at the apartment. Nurse Joan Ratchett has taken charge. Super nurses Gary and Kathy are sending “suggestions” of things the patient (me) should do so I had to eat soup and I’m supposed to keep blowing in the blower thing and she told Sharon I was taking a nap and couldn’t talk on the phone and there’s more. As for Sadie…Joan makes her ride the elevator even though Sadie would rather take the fire escape and once in a while she forgets to give her a treat after going out (gasp!)

As soon as Sadie and I get our strength up and get organized we plan an overthrow or in the least we will tie the sheets together and go over the edge of the balcony.

Seriously Joan has been great and we did watch tennis together this afternoon and that was a fun thing to do.

Thank you very much for your good wishes. I read all our e-mails and blog posts to Dan over the phone this afternoon and he really enjoyed hearing them.

Postoperative Day 1

Sandy is doing very well. We wheeled her over to the ICU to see Dan today. Hopefully she will start getting de-accessorized soon (fewer IV's, tubes, lines, etc). Dan really looks great. He states that he definitely feels better than before surgery. His vital signs look good, and his kidney function tests have improved tremendously. He is now undergoing the post-surgical treatments to improve the kidney's chance of survival. Dan told me that just the outpouring of support from friends and family has made the whole experience worthwhile.

The Big Day and A Guest Author

Dan and Sandy underwent their respective recipient and donor kidney operations today at the Nebraska Medical Center. We are happy to report that everything went well. Both surgeons were pleased with the operations. Sandy has recovered remarkably well and is only mildly sore; she is on the 5th floor of Clarkson. Dan is doing well, also. He is in the Intensive Care Unit on the 5th floor of University Hospital, where he will remain until discharge. They expect Sandy to remain in the hospital for 3-4 days, and Dan for 5-6 days. Thank you all for your thoughts and prayers.
Jim Mahalek

We Aren't Winning Pretty....But We Are Still Winning

As I’ve told a couple of people today….”We aren’t winning pretty, but we are still winning.”

Quite honestly this was an awful day…mistakes were made, there was a computer malfunction, a treatment made Dan very ill,…there was talk of putting the surgery off until Friday….and we actually weren’t O.K.ed for transplant until about 7:15pm. This means that the anti-rejection treatments that Dan just started taking will be done around 11:00 or 12:00pm tonight. He could have spent the night in the hospital, but he wants to come back to the apartment and I can see that.

Today I learned how smart, capable, calm, and understanding all six of our kids are. Dave, Ann, Kate, and Abby are in Omaha; Jim, Bridget, Ryan, and Alex are on the way as I write as are Chris and Sara. They’ve all been people you can depend on and we are so proud of them. They made a difficult situation easier.

I feel the need for humor after such a day….

The surgery is a go for tomorrow. Now we need a plan for disseminating information after the surgery is over…and I have a plan.

Dave, Jim, and Chris are the point men who will contact the following key people and these people will make the next tier of contacts. This is the plan:

Bridget will update the Dan’s Kidney blog.

Andrea will alert the NW suburbs and the Art Institute of Chicago.

Sara will contact the Alma Cardinals football team.

Joan will not contact anyone as she will be powering down Interstate 80 to help us out.

Kathy will call Uncle Boyd, the “Benkelman Post,” and the foresters of New York state.

Linda will e-mail Horizon Middle School, the Last Word Book Club, and Sandy’s transplant e-mail group.

Dick and Sharon will serve as a contact to the KJHS Bearcubs, the coffee group, and the Husker Nation.

Jeanine will notify first lunch students and Larry Houtz.

Larry will inform Madrid, Mayberry, and the Statler Brothers.

Jamie will contact the mighty Julesburg Lions.

Yvonne and Glen will alert the Lanckriets and the indigenous people of northern Alaska.

In movies I’ve seen groups of students standing vigil outside hospitals while holding candles and singing. I’ve always thought that was neat.

Maybe Kipp and Steve could call off school on the 6th and bus the middle school students to Omaha. I know C. J. could organize singing, Jan would make banners, and the retired teachers would help sponsor the trip. Kipp could use magazine money to fund it. If there isn’t enough money…I bet Jerry has some extra magazine money stashed somewhere…maybe buried in the time capsule.

O.K. that’s the plan…let the surgery begin.

Tag Team Medicine

Something that I find disconcerting in this process is that we rarely see the same medical person twice in a row. We report to a clinic and see whoever happens to be available and that person may or may not be familiar with our case so sometimes there is miscommunication. This does not inspire confidence in me….I get the feeling that they might be pulling someone in out of the hall to look at me.

Example: Last March they told me that they would remove my left kidney and put it in Dan’s left side. Two weeks ago during the final pre-surgery physical the P.A. told me that they were removing my right kidney. “No it is my left,” I tell her. She flips through my file and says, “No, they are removing your right kidney.” I guess it doesn’t matter, I think to myself.

Well, last Thursday during the final surgeon meeting (we had a substitute surgeon) she matter-of-factly says, …”And we will take out your left kidney….” “Which kidney is it?” I impatiently ask. She flips through the file and states, “Your left.” And I signed a consent form to that effect. I just hope that they don’t take out both kidneys.

Dan tells me that it is this way at the Mayo Clinic and in big teaching hospitals. He has a higher degree of tolerance for it than I do….but I am going to be assertive and form my own tag team to go in if someone on the transplant team goes down.

O.K. if a surgeon goes down then Jim will step in…he should bring his scalpels to Omaha with him and the 70’s music that he listens to during surgery. If two surgeons go down then David will step in. He has his doctorate (juris doctor) and he took Mr. Petersen’s class on dissecting a cat. I figure that that is close enough.

Chris did not take anatomy classes so he will hold the flashlight for his brothers and more importantly he will keep count of the number of kidneys that are removed from me. When one kidney is removed then he will follow that kidney from me to Dan to make sure it gets there.

In all fairness I will say that I have met hard-working, talented, dedicated, extremely careful and precise people. I have faith that they will do an excellent job…but it doesn’t hurt to have a back-up plan.

Other Information:

Dan has a full day of treatments on Tuesday. He will have the two treatments that he usually has plus an IV of anti-rejection medication. He will be in clinics for at least 8 hours. Kids and grandkids will be arriving all day and night on Tuesday.

On surgery day we report to Clarkson Hospital at 7:00am. Sandy’s surgery is from 8:30am to 1:30pm. Dan’s surgery is from 10:30am until 3:30pm. Nurses will call Dave, Jim, and Chris to let them know how things are going.

Dave, Jim, and Chris will call people. Bridget is going to update the blog. Linda will send out an e-mail to those in Sandy’s transplant group.

Sandy will be sent to Clarkson’s fifth floor (don’t know which tower) and Dan will be sent to Clarkson’s intensive care (don’t know which tower.) Sandy will probably be dismissed on Saturday and Dan will probably be dismissed on Monday…depending on how everything goes. Sandy’s sister Joan is coming on Thursday.