Saturday

Today was a pretty quiet day. My mom, Mike, Ryan and Leslie all hung out at the hospital. Neal was doing pretty good although he STILL wants to get home. We all headed down to the cafeteria and played some Rummy. Neal had one rummy and won the game, although it was short so I did not have a chance to catch up with him. He is eating just fine. We are trying to encourage him to move around more because we do not want him to get pneumonia again. He just does not want to move.

The doctors gave Neal the ok to be discharged once his INR is above a 2.0. Currently it is 1.1. INR as I believe is a measurement of how quickly your blood clots. Because of the blood clot in his lung, he now has to be on blood thinners. Hopefully by Monday he can be released. That is part of his frustrations, he feels fine, but needs to be on an IV blood thinner until the Coumadin pills kick in.

I am not sure who noticed, but I figured out how to get a counter. The unique hits is supposed to tell us how many are reading, however Neal says IP addresses change, so it is inaccurate. I didn't think we knew that many people anyways!

I have some more thanks to give. The lawn team of Chris, Toph and Mick have done an amazing job keeping up our yard along with poop picker up Jannie Baby. Anyone that has been around me in the last 8 weeks now know, I HATE cutting the grass and I give all men a lot of credit for the job (although it does not give you a free pass to no chores in the winters). Thanks to all the other visitors and posters. Keep the posts coming.

COLON SURGERY IS MONDAY, NOT

That is about all I know. He will be in all weekend. If anyone wants to stop by, please feel free to. Maybe we could have a CAVS party on his small screen tv now that he is in a private room!

The last surgeon I talked to is now saying no surgery. I am unsure who informed Neal of the surgery in the first place. I will keep you informed if I can actually get properly informed.

Update on Neal

Ryan posted below if you have not yet seen it. Sorry to overpost you!

First off Neal has MOVED to a private room Rhodes 982. He is up for VISITORS tomorrow morning. He will be in dialysis tomorrow from 11:30 until 4 or so. If anything changes I will repost tomorrow. A magazine or some good jokes may help him to pass the time.

It has been in the works all week, but we are now 99.9% sure the transplant is postponed. I apologize for not notifying all close family about this, but we wanted to be sure. Neal has a couple of things going on. The diverticulitis that he went back in for is not a good situation. Some people may only get this once, but because this is the second occurrence surgery is needed. I will explain this as best as I can in my own words. Basically he has a pocket in his colon that has been infected twice this year, therefore recurrence is most likely. If you leave this untreated, a hole will develop in your colon. Your colon passes your bodily wastes. If a hole develops, your waste could be free in your body, which is extremely dangerous to Neal and to the potential new kidney. Doing the kidney transplant first would put the kidney at risk. The antibiotics seem to have worked miracles. He is probably the healthiest he has been since the rejection. However since this will be his second transplant we want to give it the best possible environment. Having a foreign object (transplant) in your body causes your body to have more antibodies making it extremely difficult to find a donor, therefore we do not want to start out the next transplant with an unsafe environment. In addition, he will be immunosuppressed after the transplant making it difficult to fight off infection. If you remove him from the immunosuppression drugs to cure the infection, the kidney is immediately at risk for rejection. In addition, the did a biopsy of his stomach and found that he has gastritis. This is easily curable, but another hurdle we have to overcome. Essentially he had swelling and some sort of fungus growing in his stomach. He is already on meds to cure this. He has not vomited since entering the hospital, so he is really starting to get his energy level up. I hope you enjoyed my medical explanation, and please feel free to correct me or go to google to hear the doc terms.

We do not have a surgery date for the partial colectomy. I am battling with the surgeons as they do not want to do this immediately. I should rephrase that, the surgeons do not think he is in any harm currently, however the transplant team realizes this has to be done pre-transplant and are trying to push it along. I have contacted any name or number I can get ahold of so hopefully we will have this resolved by tomorrow, but it has been going on since Tuesday and we are aware that patience is the only option. I wish I would have become a doctor!

We have all had a couple of days to deal with this disappointment, however it still SUCKS! We were so close. I will post with any updates I do get from here on out, so please do not ask. Our focus is now to getting Neal as healthy as he can be given the situation. The transplant is still our dream, however we are not quite ready for it yet. Unfortunately these decisions are difficult and disappointing, but we do believe we are making the best decisions we can. We are hoping to get him out tomorrow and have a surgery date ASAP, but again you never know.

Message From Ryan

I'm a bit overdue in posting to the site, but wanted to write message, particularly to Neal and Michele. We've been the best of friends since 1998, almost 10 years now. We've grown so close and have done so many things together, that almost no major memory of mine from the last 10 years doesn't include you two! Watching Neal go through this has been the most difficult thing I've experienced in my life. Many people have said really nice things about our planned donation and our decision. Truly though, Leslie and I never had much of a decision to make. We really feel blessed that I was a match to do something for our best friends. It was never a question of should we, but could we. Initially I wasn't clear on why a living donor was needed over a cadaver kidney. However, when I learned the key facts that a living donor kidney lasts TWICE as long (20 yrs vs. 10 yrs) than a cadaver kidney and that dialysis really is a crappy way of life and not just and inconvenience, I realized why this was such a better option. The capstone was seeing all of the horrible things that happen as a result of his condition--these problems that pop up constantly on this blog. I never thought I'd be SO happy to get a phone call from a nurse telling me they wanted to cut me open and hack out an organ! We'd been investigating the option since mid-February, so when it was "final" that I was a match in early April, we were thrilled to know. It was such a relief to know that something could be done. We planned on a mid June transplant, as I could take the time off of work and Leslie would not be in the late statges of pregancy (due in October!). The toughest part has been the ups and downs that we've all faced as Neal's health bounces back and forth. The donation seems to have been called on and off twice already, and now seems to be possibly postponed for some time. It's been really hard for all of us to play "beat the clock" as we try to get this done before the birth of our first child in Sept/October. The real hero in this situation is my wonderful wife, Leslie. She has been watching her Uncle Scott, her inspiration in her life as a special education teacher, in the last stages of his battle with cancer for the last 6 months. She has endured the emotional and physical challenges of this situation---from being there for Michelle to getting up early to let the dogs out at the Kothe's. She'd done all of this while being pregnant(and exhausted) for the first time and finishing her Masters degree. Pregnancy is a time that a woman should be celebrated and she has been so, so unselfish throughout. But I think about the women and men in Iraq and how they are away from their young ones and I realize that Leslie and I are blessed just to BE together. I guess life doesn't stop for pregancy, but pregancy happens within your life. I feel bad that so much attention has been drawn to my donation and away from Leslie's wonderful life changing event(and my life changing event!), when really it was not a hard decision, I wouldn't be in mortal danger, and I would have no long term repercussions. Frankly, after such a trying year, I wouldn't mind spending two weeks on the couch taking Vikatin and watching old Samuri movies at this point! Sounds like vacation to me! For those of you reading this blog, your regular visitation and comments mean a LOT to Neal and Michele. I am in contact with them each and every day and I know that this blog has become a beacon of light for Michele particularly and your support through this site is incredibly meaningful to her. To Neal-you know I'm not one of those people that believes that things happen for a reason, I'm more of the stuff happens camp. I know, not real cheery. What I do believe though is that good things can come out of bad situations. I've seen the relationship between you and Michele grow stronger than I've ever seen it. We've seen SO many of your friends and family grow closer to you two and make sacrifices in so many ways. Watching your health has caused many of us to make healthier choices, choices that will change and extend many of our lives. You'll come out of this stronger, and with stronger relationships with those around you. Better days are ahead, and every day that passes you are one step closer.

Thursday

Neal is getting a test done this morning. I am unsure how long it will take. I am going to try to leave work a little early and watch some movies with him. He is ready to go home and bored, but I am unsure he will be getting out anytime soon.

I spoke with Neal....
He had a gastric emptying study. Here is a blurb from medicinenet.com

For a gastric emptying study, a patient eats a meal in which a solid component of the meal (for example, scrambled egg), a liquid component of the meal (for example, water), or both, are mixed with a small amount of radioactive material. A scanner (acting like a Geiger counter) is placed over the patient’s stomach to monitor the amount of radioactivity in the stomach for several hours after the test meal is eaten. As the radioactively-labelled food empties from the stomach, the amount of radioactivity in the stomach decreases. The rate at which the radioactivity leaves the stomach reflects the rate at which food is emptying from the stomach.

He had to eat radioactive oatmeal. Nothing like a balanced radioactive oatmeal breakfast. This sounds a lot like Matt's new diet. Neal is back in his room and fine now, but is still saying no visitors. I will let you know if anything changes.

Sorry for the number of updates.....

A couple of things are going to happen. They are going to try to start using his fistula (on his arm) for dialysis so that they can remove his permacath (tubes in his chest). This will allow them to remove the permacath, which is good news since it can cause infections.

The doctors are planning the endoscopy today and hope to do a gastric emptying study tomorrow. This will tell them how long it takes foods to be emptied from the body to determine if there are any other issues in his digestive track.

Also...channel 4 news contacted us regarding our story. We may get on tv!

No Visitors Today

Neal has more tests all afternoon and is not in the mood. Hopefully tomorrow will be a better day.

Wednesday

Just talked to Neal. He is going to dialysis this morning and then having the endoscopy this afternoon potentially. He is feeling fine. There is really nothing else to report.

http://www.dispatch.com/dispatch/content/national_world/stories/2007/05/30/kidney.html

Doctor update

I finally talked to a doctor. The abscess is around his diverticulities in his colon. Multiple experts have looked at it and do not believe there is enough fluid to drain. Typically if there is a bad infection your white blood cell count goes up. His is still normal. They have taken him off one of his immunosuppression drugs short term. She is hoping he will be out of the hospital by the end of the week and they will do a follow up CAT scan. One other thing she mentioned that did not sound pleasant, was possibly putting a line in order to administer iv antiobiotics at home. I do not think it will come to this, but who knows.

No drain

I guess they decided not to put a drain in. Apparently the area is too small. The doctors are going to treat him with antibiotics. I am not a doctor, but from everything I have read, antiobiotics do not cure this. I will do a little more research and see what I find. A doctor is SUPPOSED to be calling me to discuss all of this. If that actually does happen I will post another update.

IF ANYONE VISITS PLEASE GIVE ME AN UPDATE. THANKS!

Not much to tell/ Michele's emotional rant

I saw Neal at the hospital today. He was tired and had a headache. He did eat some food though. It sounds as though they are putting a drain in him tomorrow and possibly an external bag to collect the fluid. I am guessing he will be in all week. I could not get ahold of any doctors since it is a holiday. I will call the nurse who is always very friendly first thing in the morning to try to get more specifics. He is in room 924 Rhodes for any visitors.

I was pretty emotional tonight. I am trying to stay strong for Neal, but sometimes it is hard. I keep asking why is ALL of this happening to a kind hearted 30 year old man??? Sorry honey, but I had to mention your age. Everyone knows Neal is such a wonderful person. He did nothing to deserve this. We used to always say when it rains it pours, but when is it going to stop pouring? We never know what we are going to get day to day or hour to hour. I think if I had kept better notes (which I have started doing) he has only had a handful of good days in the last 2 months and has been in the hospital 30 days the last 2 months. I have probably made 40 trips to and from the hospital. I mean come on dialysis, blood clot, fluid around lung, diverticulitis, pneumonia, abscess....... GIVE US A BREAK! Regardless I told my mom tonight I need to go to the batting cages or driving range to get some of my anger/frustration out. Sorry for writing a book. What gets us through??? Two great friends who have offered us an amazing gift, another life...... and that helps us to get through each day.

We appreciate all of your comments. Please keep them coming, it helps. It is amazing how quickly the blog distributes amongst both new and old friends. We have an amazing support system.

To the ER again...

I wish we were counting down the days to the transplant instead of counting the number of times Neal is in the hospital. Last night he went to the ER because he was not doing well. They finally did a CAT scan after a few tears and some yelling. Neal does not believe me, but I think that is the trick! They found that his diverticulitis is back and he has an abscess in his stomach. Here is the info from WebMD:

An abscess is a tender, easily pressed mass generally surrounded by a colored area from pink to deep red. The middle of an abscess is full of pus and debris. Unlike other infections, antibiotics alone will not cure an abscess. In general an abscess must open and drain in order for it to improve. Sometimes draining occurs on its own, but generally it must be opened by a doctor in a procedure called incision and drainage. People with weakened immune systems get certain abscesses more often (Neal is on immuno suppression drugs).

He had diverticulitis before. My understanding is you get pockets in your colon and food can get caught causing an infection.

They admitted him last night and are giving him IV antibiotics. A surgeon is supposed to come by to determine whether he needs surgery or a procedure to drain the abscess. Meanwhile he will be getting his dialysis treatments at the hospital.

Ryan is scheduled for his MRI and CAT scan tomorrow. I will be calling the pre-transplant center to inform them of Neal's current problems and determine whether the transplant should be postponed.

Today Ryan, Leslie, Matt, Leslie's parents and I got a workout. We mulched Ryan and Leslie's yard and planted some flowers. The countdown is on and we all have a lot to do to prepare for a summer of not much activity. We have also agreed that group mulching is much easier! I hope everyone had a nice long weekend.

Unfortunately I missed Stacy's cookout yesterday, but I hear it was a great time. I just wish I could have seen baby Jack. Luckily the weather held out in Clintonville. There was a pretty good storm in Dublin.

Sunday

Last night Neal and I went out for a while and he was fine, but apparently something changed. He said he was sick all night long. I wish I knew what was causing this. He has been sleeping in bed all morning. I am headed to a cookout at Stacy's today. Neal is probably going to stay home and rest. Hopefully we will find out what is wrong on Thursday.