Signed, Sealed, and Delivered

Well, this morning was it.....we met with the transplant surgeon...well almost. Actually our surgical team was occupied elsewhere, so we met with a third surgeon (who will be out of town the day of our surgery) to sign consent forms and have a final review. Everything is GO!!! Oh, I almost forgot, the day before surgery, Sandy has one more final final blood crossmatch test. That could stop the transplant but the Dr. assures us that the odds are 1000 to 1 it won't stop things.

My key test number of 16 for B antigen was reached yesterday so the transplant can be performed anytime; however, the date of Sept. 6 cannot be moved up because of advanced scheduling for other patients. This is O.K. with us as Chris and Sara, Dave and Annie, and Jim and Bridget have arranged to be here on Sept. 6th.

We were so excited by the final approval that we celebrated by taking a trip to Walmart to purchase 10 coat hangers, bottled water, a six pack of Colorado Kool Aid, and a tube of Equate anti-fungal athelete's foot cream. It doesn't take much to make a simple country boy happy.

Note from Sandy: I was disgusted that I didn't get to meet with the transplant surgeon today (I couldn't pick her out of a police line-up since the only time I saw her was for five minutes in March.) I had to survive another blood pressure thing...and there were a few other disconcerting things as well. However I am very pleased with the final result.

We are eating at the Olive Garden tonight to celebrate and I've already forwarned Dan that I am ordering everything....appetizer, main entree, wine, dessert,....

Sadie the City Dog

Sadie is adjusting well to big city life. When she came she brought her Bronco blanket, her Blue Willow dog dish, some of her toys, and her people. She’s met and enjoyed some of her new neighbors…Ladybug a fluffy dog from New Brunswick, Canada and Tinkerbell a chocolate dachshund. Sadie particularly likes walking on the Papio Creek hike bike trail and enjoys the new smells.

However, Sadie doesn’t like the elevator. When we get on she scoots her butt in the corner and braces her front legs like she going to drop 20 stories. And she still likes to hang her head out the window when we drive to the park…this probably labels her as a country dog.
Bringing Sadie to Omaha was the best decision we made. She walks with Sandy, sleeps with Dan, and makes the apartment feel like home.

Pictures: Sadie in her lavender rhinestone city dog collar (a gift from Kathy’s dog Ruby) and the Papio Creek hike bike trail.

Realizing What is Important

Yesterday was an unusual experience in the plasmapheresis treatment center. As I sat looking about the room at my fellow patients, I found myself becoming unusually introspective.

I am the only kidney transplant patient at present; the others are undergoing some type of cancer treatment. There was a very ill lady in her 70’s who had undergone chemotherapy and now was receiving stem cells, a girl in her 20’s who was donating stem cells to her brother who had leukemia, a rancher from Western Nebraska collecting his own stem cells for a marrow transplant, and a middle age man who was soon to undergo chemo.

All of the patients were accompanied by their wives, husbands, and in the case of the young lady, her boyfriend. Watching the loving concern shown by them was very reaffirming to my faith in humanity. To see the old man covering his wife’s head with a stocking cap, the young man feeding his girl friend, and the other lady bringing cookies from the cafeteria for everyone filled me with a sense of well being.

I snapped out of my reverie and glanced up and saw my wonderful wife Sandy sitting beside me…she looked up from her book and asked if there was anything she could do for me. At that moment, I realized that the tragedy of illness was not in being sick; the true tragedy would be in having no one who cared and loved you.

"The Machines"

These are pictures we took of Dan’s treatments on Saturday. The first is of plasmapheresis, the second picture is a close-up of the machine “cleaning” Dan’s blood, and the last picture is Dan receiving Gamunex which replaces the immune system plasma which was taken out during pheresis.

Dan felt good last Friday, then Saturday he was incredibly tired, and today (Sunday) he is very nauseous and has a back ache.

We do try to get out to walk and we have gone to the mall and we visited St. Cecilia one day. It’s just hard when Dan doesn’t feel well.

Dan Van Winkle

Dan is tired….very, very tired….and he spends a lot of time sleeping…when he’s not nauseous.

It’s been this way for a couple of days. We didn't know if it was from the vein surgery or the blood cleansing or the plasma treatments or the anti-rejection drugs or the flu or the kidney failure. In the end he and his case manager decided the tiredness is from the blood cleansing and the nausea is is caused by the anti rejection drugs and kidney failure.

He doesn’t want to eat…who would when you throw most of it up?….and Jim reminded us that he should keep his strength up for surgery and suggested we try Ensure so we will get that today.

We had a pleasant surprise when we got home from the hospital yesterday. Dan’s coffee group buddy Dave Nordstrom (Padre) drove his Mini Cooper all the way from Kearney just to visit us. It was nice to see a friend and catch up on news. Padre didn’t stay long…as Dan was drifting off on the couch….he said a nice prayer, got back in his Mini Cooper, and drove back.

One final note…the blood cleansing is working. The antibody levels have been cut in half already and they are also reducing the anti-rejection drugs because the dose is too high.

One week has gone by…what a week it’s been.

Our New "Home"

Kwik Lube-Med Center Style

Now I know how my car feels....I have completed my 63 year maintenance with a blood (not Mobil 10w-30w) change. The plasmapheresis went well with 70% of my blood plasma being exchanged over a 2 1/2 hour period. I had expected to go for 4 hours, so that was great. Only two side effects....the treatment made my face tingle like I had knocked back two shots of bourbon and the treatment left me very tired for the rest of the day. To combat the tingling I was given Rolaids to chew on.

The second part of my "Kwik Lube" involved the replacement of immune factors with an iv of human gobulin which took 2 hours. Due to several bureaucratic paperwork foul ups, the whole process ended up taking 7 hours. Hopefully the next treatment will go smoothly and only take 4-5 hours. You all have heard of Murphy's Law.....it should be engraved on a bronze plaque and hung over the entrance to the med center.

Oh well, life goes on......there are actually other events going on in our family:
Yesterday was Dr. Jim's birthday....Dick and Sharon Swett and their family recently hosted a fund raiser in Ord to raise money for a handicapped van for Sharon's nephew Brad Bundy who was paralyzed in a car accident this summer....Sandy's sister Kathy is in her last week of radiation therapy. Yay!! She has managed to work through it all despite being very tired near the end....Chris and Sara plan on celebrating the anniversary of Hurricane Katrina by getting in the car, turning the heater on full blast, and driving around slowly all night (it might be hard to find a traffic jam in Alma.) When they are absolutely exhausted and nearly out of gas they will pull into the post office parking lot and sleep.

We have nothing to do today so we are celebrating by going to the Old Market for lunch.

--Dan

Part 1....complete

I dutifully reported at 6:00 a.m. to Clarkson Access services to have my catheter implanted. Just as I was to be taken to pre-op, my surgeon was called to perform a liver transplant and my proceedure was pushed back to 1:00.

We returned to the apt. and Sandy took Sadie to one of the hike bike trails for a walk. As luck would have it, soon after she left the hospital called....they had moved my surgery to 10:30, so after Sadie's walk we returned to the hospital.

The proceedure was uneventful leaving me with a sore neck, chest and throat. A catheter the size of a wood pencil was placed in my right juglar vein exiting on my left chest in a Y shaped dual connection that will be used to hook me up for plasmapheresis. Tomorrow is my first treatment so we will see if it works.

--Dan

Under the knife...Part 1

Tomorrow at 6:00 a.m. I will undergo my first surgical proceedure. I will have a sub-clavian catheter implanted in my chest to provide access for the plasmapheresis (blood antibody cleansing) treatments. It should be a relatively minor proceedure except that anytime someone wants to cut into my body, it is not minor to me. We should be home by noon, and I can post all the gory details.

Incidentally, several people have asked why some comments were edited out. I delete "spam" comments that automatic web crawler programs post anonymously....the one was for an adult web site and the other for online high blood pressure medicine.

A big thank you to all of our friends that have posted comments and sent email.....we really look forward to checking several times a day to see if there are any new ones. Your support means a great deal to us.

--Dan

We Are Now Siamese Twins

Friday was a stressful day as you can tell from Dan’s last post….but that is only half the story.

Like Dan….my Friday started out with an EKG and a lung scan then I went on to the Diagnostic Center for the pre-operative physical. Actually I was feeling rather calm and then they took my blood pressure in the hallway. It was 239! I couldn’t believe the numbers on the machine…the young nurse went, “Oh!” and then said, “Let’s try your other arm.” And once again…239 over 100 and something. Dan was standing there looking kind of stunned.

That nurse (Shelley) that puts the thermometer in and takes the blood pressure and asks questions was nearby and she said, “Let me put you in a room and you think happy thoughts and we’ll take your blood pressure again.”

I was thinking…no way that will work. This transplant is over….but I went into the room. I decided that maybe listening to music would help but I was so shook up that I couldn’t even turn on the iPod. Then Shelley comes in and decides to relax me by singing which I thought was ridiculous but….my blood pressure came up 122/72.

Dan’s nurse told him that the hallway blood pressure monitor is always off and the medical people in our family agree that it just couldn’t have been right. I think it is a miracle that I didn’t have a nervous breakdown over the number 239.

An hour later we went to the anesthesiology department. The first time my blood pressure was 140 and the nurse said, “That’s too high” so she starts to take it again and the machine malfunctioned so she starts hitting it with the flat of her hand which caused some anxiety on my part….but the second time my blood pressure was 130 which I guess is acceptable.

A P.A. came in and asked all the questions they ask. She said something to the effect of you must be O.K. or else you wouldn’t be here, but she proceeds to listen to my heart and lungs. I am thinking that I am 30 seconds from being out of this place. Then the P.A. stops and darts out of the room.

Another P.A. comes in and listens to me and says, “How long have you had a heart murmur?” “I don’t have a heart murmur,” I answer. “Oh yes you do….on a scale of one to six a one or a two is O.K. for surgery…and you have a soft three,” he says. “Can’t I have a hard two?” I wonder.

He leaves and an anesthesiologist comes in and she listens and the group of them get all excited, “Oh my gosh the great Dr. Groggel (the blood pressure specialist I saw in July) didn’t discover this and we did!” “What happened to her that spontaneously caused a level 3 heart murmur!” “The surgery is off for now….maybe we saved her life,” and the one looked at me and said, “We are doing this for your own good.”

Well I go out to the waiting room and I can hear Dan joking around with his P.A. I am sure that he thinks we are 30 seconds from being out of here as well so at a break in the action I go up, knock on the door, and tell him.

Well when he gets out we call my case manager Connie (yeah…gasp!) and Connie had already heard about this all. It is now 2:00pm on an August Friday afternoon and Connie said, “I can’t get you into Cardiology until Monday morning at 9:20am.” I told her that Dan had line placement at 6:00am (which is a bigger deal than we initially thought.) What happens if the line is put in and I fail the cardiology test? “Well,” Connie said….”they would take the line out the next day.” Couldn’t we do the line placement after I pass the cardiology test? “That would put the September 6th transplant back and we would have to schedule another surgery date.”

I felt like throwing up….but I did a counselor thing and said, “Let me review the choices to be sure I have them right….We could go ahead with Dan’s Monday surgery and then if my cardiology test doesn’t work out then he would have surgery the next day to remove the line or… “

Connie interrupts, “Let me try again. I will call back.”

Let me interject here that Dan is being a rock throughout this….but so many things in one day….his abnormal EKG report, the 239 blood pressure, the information that the line placement surgery is a big deal, the fact that his kidney function has once again worsened, and now the heart murmur….plus we had been at the hospital for hours on end. And for some reason we were worried about Sadie being locked in the apartment all day.

Connie called back. She must have pulled some major strings and she got me into cardiology for an echo cardiogram and a treadmill stress test. I got kind of a older P.A. named Rebecca who knew how to get things done and a young woman tech.

To summarize….I did the echo, they cancelled the treadmill, and my heart murmur is a slight number one on the scale. Dan and I stayed in the cardiology department until a doctor reviewed the echo and everything was approved by both the cardiologists and Connie.

We thanked everyone profusely. Dan restrained me from marching to the anesthesiology department and whacking them over the heads with a clipboard. Sadie didn’t mess up the apartment and she forgave us. We had Italian food (alcohol was involved) and I guess all is well.

I don’t know what more they can do to me before this surgery….brain scan?

I think that if the stress of this transplant process is making us closer….we are now Siamese twins.

Saturday Night Fever

Hot under the collar perhaps but no actual fever and it actually is a carry over from Friday's experience at the med center. Friday started with a number of tests: blood draws, chest x-ray, and finally an ECG to check my heart rythems. After 3 tries, the tech handed me the readout of the ECG and the title printed across the top stood out like the old Camel cigarette sign in Times Square. Printed across the top were the works "Borderline Abnormal ECG." Needles to say this caused a significant degree of aprehension on my part.

At 11.00 a.m. we proceeded to our pre-op physical exams and a number of prodings and probings of various body parts. The Dr. explained to me that the ECG was no big deal and that many adults have "bad right branch bundles." I had believed that all my branches were fine; after all, I have not noticed any leaves droping since last fall. After answering enough question to satisfy the CIA, FBI, and my McDonalds coffee group, I was informed that I passed with flying colors. I am glad I stayed up late the night before studying for my urine test. It was now Sandy's turn and things began a downhill slide. I will let her relate "The Rest of the Story." (with apologies to Paul Harvey) in a post to follow Saturday afternoon or night or Sunday or whenever.

Hi--

We made it to Omaha....have unpacked, moved in, put things away, ate out, made a run to the grocery store, and have walked the dog a few times. We are missing our garage where we just pull in and walk directly into the kitchen. Our apartment is on the second floor.

Dan's priority was setting up the computer and as you can tell...he was successful.

The apartment is very nice. It is roomy and clean....although it is not exactly my style of decorating....kind of a pseudo French provincial with a lot of bad fake plants. I have been moving some of the plants to the second bedroom. Other than that it is great and the people we've met in the building are very nice.

Sadie is excited by the new surroundings, but the first couple of times we left her alone in the apartment she whined piteously at the door and we could hear her all the way to the elevator.

Will post more soon.

--Sandy

Well, here I am at 6:00 a.m. unable to sleep since 4:30 a.m. Only one day until we leave for Omaha and I am not ready......so much to do. I am rather proud of myself as I have notepads lying about the house so that I can write down things to do as I think of them. This has worked well until last night when I lost the pad with the master list.....to quote Burns, "The Best Laid Plans O' Mice and Men Gang Aft Aglay." Our good friend Sharon saved me some potential problems when she mentioned that estimated tax payments to Uncle Sam were due by Sept. 15.

I am truly amazed at all the crap we must take with us for a 5 week stay. All of my snowbird friends look at me and smile and shake their heads. Stamps, address stamp, nail clippers, cell phone chargers, camera chargers, iPod chargers, calculator, files of medical records, bills to pay, last month's bank statement (so I can finally balance the check book), and ........oops, I almost forgot the Preparation H.

I did get a haircut yesterday...Sandy told me that I could not report to the medical center looking like a refugee living under an interstate overpass. I even shaved for the occasion. Besides keeping me on task, Sandy has been furiously working at the HMS media center to get things in order so as to assure a smooth continuation of operation in her absence. The beginning of the school year is the worst possible time for her to be gone. Thank you Sandy!!

Sorry that I don't have any pictures to post today, but afterall how exciting can a pic of a tube of Preparation H be????

Last Weekend in Kearney

The Happy Donor and the Very Happy Recipient

Well, here it is, the last weekend here for 4 or 5 weeks. We just went out to McDonalds for sausage biscuits....a Saturday morning ritual for us. If you are reading this blog you already know that my wonderful wife Sandy is giving me one of her kidneys. This long and convoluted journey started eight years ago when I was diagnosed with chronic kidney failure caused by diabetes that started back in 1981. I have been more fortunate than most with this condition as I was initially given 5 years until ESRD (End Stage Renal Disease) set in. I now have ESRD but have managed to stay off dialysis, barely. Now the time has come for the transplant as my health continues to decline.

We began tests five months ago to determine the possibility of Sandy being a donor. This was really a long shot because she is a type B blood type and I am a type O. Without a donor, the waiting time is 3-5 years for a kidney for type O. Until very recently this would have precluded the possibility of a transplant. A year ago, the Lied Transplant Center at the University of Nebraska Medical Center in Omaha began a new procedure called Noncompatible ABO transplants. Essentially this involves "cleansing" my blood by a process called plasmapheresis which filters out my antibodies that would not be compatible with Sandy's blood type. I will need two weeks of treatments before and after the transplant.

We have rented an apartment in Omaha and will be moving August 17. The apartment complex rents to corporate clients who are in town for 30 to 90 days for training with Con Agra, Mutual of Omaha, Gallup-SRI, etc., so they are fully furnished with everything we will need.....all we need are our clothes and dog. Yes!! They will allow our rat terrier Sadie......she will have to become a city dog.

Sadie the real Head of the House