Hopefully one last test!

I have one last test on the 31st. It is an upper endoscopy. This is what webmd says about it.Upper endoscopy, also called esophagogastroduodenoscopy, or EGD, uses a thin scope with a light and camera at its tip to look inside of the upper digestive tract -- the esophagus, stomach and first part of the small intestine, called the duodenum. I will be knocked out for this. All that is left is another blood drawn and we should be good to go.

Update from Neal

Hello everyone. I just wanted to give an update. I have been feeling good the last few days. I have been going back and forth with my Nephrologist about not being able to eat or when I do it being able to hold it down. So my last trip to the ER I was given some medication to help out. And I am now finally able to eat and keep everything down. So i say to my Nephrologist SUCK IT!! I have been doing nothing since I had my PE(blood clot in my lung). It has been a tough road back to getting better. But I can't say enough about Michele. She has been doing everything for me. While I have been sleeping like a cat the last month she has been there to wake me up to make sure I take my meds, she really does everything.

It's Friday!

Neal got out of the house last night! We went out with Ryan, Leslie and Matt. For those of you that know me I love to overkill birthdays (especially mine). It is a great excuse to get together. We even visited a much nicer establishment. We did not stay too long, but I know everyone was happy to see him. Hopefully in the coming weeks Neal will be able to visit more with everyone.

We also received a letter in the mail saying Neal and Ryan need to check in to the hospital at noon on Thursday the 14th. It seems more official every day. If I am correct Neal only has to go to dialysis 9 more times. That is amazing. When Neal's kidney first failed the doctor told us to find a donor and he could be back to his old self by the 4th of July. I cannot believe it may actually happen.

I hope everyone enjoys the long weekend!

Thursday

Neal had some breakfast and says he is feeling much better. He is driving himself to dialysis today.

I am ready for the long weekend. Neal kept his lunch down, but not so much luck with dinner. I will update this once I talk to him today. I am not a doctor, but encouraged him to take his nausea medicine on a schedule until he is sure he only needs it as needed. Since rejecting the kidney Neal has lost 35 pounds. He has not used the best methods, but this is still great. He is going to dialysis today and tomorrow.

Unfortunately Neal did not make it out last night for Matt's birthday, but the rest of us did. As always we had a lot of fun. Good old Chubby's tables were sticky as always! I always ask myself why I go to establishments like this. First Rafters with the bugs (some of you understand) and now sticky tables. The answer....they are all close to home and have good bar food. Ryan and Leslie had an ultrasound yesterday, but forgot the pictures!! Hopefully we will see them this weekend.

Thank you for the posts. It is nice to hear from everyone.

Here is the link to Leslie's Uncles site for anyone interested. He has been battling cancer for some time now. He too has some good days and bad. He is in all of our thoughts as well.
http://www.caringbridge.org

Looks like the link is junk. Once you click it, go to visit - and type in scotttrimmer in the first box.

Back at home

We are back at home now. They gave Neal medicine for his stomach. Hopefully he will be able to eat so that he gets some energy. Other than dialysis he has not left the house since getting out of the hospital 3 weeks ago and he is asleep all of the time. We are supposed to be going out for Matt's birthday tonight and he said he may go as well. We will see how he feels.

Matt mentioned it and I am not sure if anyone else can figure it out, but the clock on my posts is not accurate. I have no clue how to fix it. Whatever time the post says add about 3 hours.

Is anyone out there? Leslie, all of our mom's (Matt, Leslie, Ryan and mine) and Jen appear to be the only ones reading! Feel free to leave a post whether it be a hello, a joke or whatever so we know you are out there.

Back at the ER

Well we are back in the emergency room. Neal has been having problems keeping food down and he has a real bad headache. I am not sure what is going on. He usually gets these headaches after dialysis, however he did not have dialysis today yet or yesterday. He tried to self medicate, however he could not keep the pills down. We are waiting for a doctor now. Once we figure out the problem we will be notifying the transplant center to determine whether or not the transplant is still on as scheduled. I will post another update once we figure out what is going on. Good news is his oxygen level was 100 and many of you know he was on oxygen around the clock less than a month ago. His blood pressure was normal for him and he did not have a fever.

Due to the increased gas prices and the number of trips we make to the ER, I am looking for a used roller skate, I mean Ford Festiva! If anyone has one I am sure Neal would appreciate it!

UPDATE
The cultures that were done on Sunday pointed towards no infection. That is a relief. They are thinking it was a result of his blood thinners. They are going to run a ton of tests today. He is currently getting a CT scan of his head to check for bleeding. After the tests come back they will discuss with Neal's doctor whether he should be admitted. The preliminary discussions are that the nausea is a result of the steroids he has been on for over 10 years. It is possible that these can affect your stomach over time. I am trying to research this now. I will post again once we have a final medical opinion.

We are READY!!!!

Hello everyone! I just wanted to thank everyone for all of the kind comments you have made. Ryan and I feel honored to be able to help Neal and Michele in this way. This is just the beginning of our journey, but going through this has allready caused us to step back and view our lives from a different perspective. We have found that we do not stress about trivial matters at work or about keeping up with chores around the house because, each day, we are realizing that those things really ARE insignificant. It is the people in our lives that matter and we are so grateful for all of the support we have (and will be...) receiving from all of you. Neal and Michele are two of the strongest people we know and we are anxious for the day that we can take another vacation together!!! Again, thank you to all of you for being there for us, for supporting us in this decision and, Michele, I couldn't think of a better way to communicate with everyone. What an awesome idea! 23 days to go :)....

Back from the ER

The doctors think Neal has a bladder infection, but we will not know for sure until Tuesday. They put him on 7 days of antibiotics until the culture results come back on Tuesday. His INR was also pretty high (his blood is too thin) at 4 when it should be between 2 and 3. Luckily he had not taken his blood thinner on Sunday. Neal was nice enough to let me use the hospital bed, so I got a good hour of sleep. We did not get home until about 2am. Let's hope the next time we are at the hospital, it is for a transplant!

Another hurdle

Well tonight Neal had lots of blood in his urine. We called the doctor on call and he suggested we go to the emergency room to get some labs drawn. The doctors need to check his INR which is a measure of clotting time of your blood (at least that is what I was told). He is on blood thinners due to a blood clot (whole other story for another time). I will let you know the results.

Upcoming tests

There is not too much news to report. Neal has an echocardiogram tomorrow afternoon. It is basically an ultrasound of his heart to make sure the valves are working properly. At his last doctors appointment we were told he has a heart murmur. Very strange as we have never heard this before. Regardless, the test is painless and will provide an indication of how healthy his heart is. I believe Ryan has to get a CAT scan before the transplant. This will provide a "map" for the doctors on surgery day. In addition, one more blood test will be completed to ensure they are still a good match.

We are all trying to figure out what all needs to get accomplished before the surgery and how we will get it done. Luckily we have support from family and friends. I would like to thank not only Ryan and Leslie (our designated dog sitter) but also KT, Matt, the mulching team, my parents and everyone else who has helped us out the last few months either with physcial labor or emotional support. We would be lost without help!

I have tried to find a picture of these two guys together only to find I do not have one. I have many with Ryan and Leslie, Neal and Michele or Leslie and Michele. Apparently guys do not pose much together! I think Matt has one, I will try to get it up this week so you can view the two handsome guys.

Michele

ps - The neighbors are asking to hire the mulching team. Matt has come up with the perfect name.....6 guys and 4 trucks.