Monday, February 28, 2011

Jeanne arrives home

It's now a little after 8PM Monday night. Jeanne arrived home with Dad about three hours ago. It was great to get her back home here so we could all be together. Of course, she needs to be back down in NYC for an 8am appointment Wednesday morning and will be heading back down there a lot over the next month or so until they feel confident that the kidney is not being rejected by her body.

Unfortunately, Jeanne wasn't home five full minutes when the phone rang. It was Maryanne, who was helping out with after-school taxi service for Brian and Jason. Turns out Brian was not feeling well and she was bringing him home early from CCD. It appears that Brian has a bit of a fever - which means we are going to have to try to keep him and Jeanne apart as much as we can for the next few days.

Personally, I felt pretty good most of the day, but I do need frequent naps. The soreness seems to come and go throughout the day. It's pretty much exactly what the medical staff said to expect. I'm finding now that it nears the end of the day, I am getting more sore and more tired. I'll probably turn in for the night soon.

Sunday, February 27, 2011

home again

It's now Sunday 3PM and I am back home! My recovery is going great and Jeanne is getting better too. I'm still a little sore and and even more tired after sitting in the car for a couple of hours, but I am glad to be home here when I can rest a lot easier. It will be even better when Jeanne joins me here, hopefully tomorrow night.

More details later - now off to rest.

Saturday, February 26, 2011

All is well

Its now about 10am Saturday morning. I just wanted to make a quick post to let everyone know that all is well with me. My surgery went great and I hear that my kidney is working just fine in the recipient. Turns out that the recepient of the kidney was female, and not male as Marian had indicated earlier. I guess that means that the final crossmatch tests for those guys must not have gone well.

I'm up and walking now - a little slower than normal, but I'm able to get around on my own anyway. I must say I was expecting a lot more pain than this. Sure, I getting help from my pain meds, but even so, I was expecting to be feeling this a lot more than I am. Mostly, it only hurts when I move around, but even then, not all that much.

One nice surprise was that somehow, I ended up landing in the transplant section (usually reserved for recipients) in the room right next to Jeanne! Apparently, the hospital is quite full and they were having lots of trouble finding beds for the folks coming out of surgery, so somehow I got shuffled here. It's been great to be able to walk next door and see her. Otherwise, I may not have gotten a chance to see her until tomorrow.

I'll post later with more complete details of my whole experience, when sitting up is a liitle more comfortable and when I don't have an IV stuck in the back of the hand I am trying to type with.

Best I know, the plans are still for me to come home tomorrow and Jeanne to come home Monday.

Friday, February 25, 2011

My turn

It's now about 5am Friday morning. I'm up and showered here at the hotel room and my stomach is screaming at me for something to eat. Sorry, not today! I got some sleep last night, but it sure wasn't a good night's sleep. I guess I can do my sleeping later this morning.

Now, I just need to pack up, check out, head over to Jeanne's hospital room for a quick visit and then report to Same Day Surgery at 5:45am. Obviously, I'm not going to be able to do much blogging today. Hopefully, some of you who are receiving the news can add some comments to let the rest of the world know how things are going.

Thursday, February 24, 2011

6:30PM update

Its now about 6:30PM Thursday evening. I'm checked in to a very nice room in the Helmsley Medical Tower just adjacent to the hospital where I'll be crashing for the night. While I type this, I am enjoying my liquid "dinner" of Tropical Carrot Juice drink to be followed by a Vitamin Water chaser.

I last saw Jeanne about an hour ago now and she continues to recover well and is more alert as the day goes on. She should be heading out of recovery within the next half hour and I'll be heading over to see her in her room in just a bit. She does not appear to be in much pain and her biggest issue seems to be a very dry throat at the moment.

Rick did stop by and we visited Jeanne together for a little bit. He had a busy day full of meetings around Manhattan - so busy he didn't have time for lunch. So, as he was standing around the recovery room surrounded by all of the tubes and machines and medical staff, he became a little faint. He is definitely my brother! So, we headed down to the hospital cafeteria together so he could get something to eat before he headed home.

Some people have asked me today if I know who it is that will be receiving my kidney. At this point I do not. I do know that as of last week, there were two "gentlemen" (as Marian put it) who were being tested for compatibility. I assume it is one of those two, and if so, the transplant will be performed right here at New York Presbyterian Cornell soon after it gets removed from me. I believe that after all of the surgeries are over, we may find out more details of all of the folks involved in the chain, but I believe it is up to each individual to decide if they wish to remain anonymous or not. I personally think it would be really cool to meet some of the other people involved in this chain, but I know that may not be very practical given that at least some of the other people involved are on the West Coast. However, I also don't think I would have any problem if I never found out who any of the folks were. For me, this is really all about Jeanne anyway.

A successful transplant!

It's now about 3PM Thursday afternoon. Jeanne got out of surgery about 11am. We talked to her surgeon about noon and he told us that everything went very well. The kidney is already pumping out about a liter an hour. Got to see Jeanne about 12:30 - she's still pretty drugged up but is in very good spirits. I can only hope I'm half as good a patient as she is! Then Susie and I went out to lunch while Dad headed back home (hopefully for a nap). Headed back to see Jeanne again about 2:30. I need to limit the amount of time I spend with her to give her time to recover - what she needs more than anything right now is rest. They expect she'll be moved from the recovery area to a hospital room about 8PM this evening.

Well, if it's 3PM, then its about time for me to start my own preparation for tomorrow. I have 5 ounces of some "juice" that is supposed to help clean me out for the surgery tomorrow. Only liquids for me from now until midnight! Now that Jeanne's surgery over, I'm getting very tired - that adrenalin rush that's been keeping me going since 2am is starting to fade!

Hoping to see Rick a little later this afternoon. He happens to be in the city today and we're planning to meet up.

The kidney arrives - surgery underway

Its about 9:45am Thursday morning. The kidney arrived safely overnight from California and Jeanne's surgery is now underway. Kissed her good luck about 7:45, went off to get some breakfast and we are now waiting in the comfortable lounge. We're expecting to hear from the doctor about 11:30 or noon after the surgery is over.

Keep the prayers coming!

Wednesday, February 23, 2011

Here we go!

It's about 8:45pm Wednesday night. Jeanne should be on her way home from what we hope will be her last regular dialysis session for a long, long time. TJ is just getting home from his Boy Scout Meeting. Brian and Jason are lying in bed chatting with each other.

At the UCLA Medical Center, I imagine they have recently finished up a surgery a lot like the one I will be having on Friday - someone donating a kidney so that a loved one of their's could receive one from another.

The alarm clock is set for 3:15am. Mom and Dad are here. The bags are packed. The plans are set. The lists are all made out.

Let's do it!

Monday, February 21, 2011

clear skies ahead

Normally, I'm not one who spends too much time checking out the weather forecast, but I've been keenly keeping my eye out on the weather for Wednesday into Thursday and am very relieved that all signs are for clear skies above New York City.

Why the concern? Well, Jeanne's new kidney is coming in from Los Angeles via an overnight flight, and were we to be getting another one of those winter blizzards, there is a chance that they would decide to keep the kidney in California and transplant it into a backup recipient at the UCLA Medical Center. However, it looks like the weather is going to cooperate and we won't have to worry about that happening.

Jeanne is off this evening for what should be her second to last dialysis session. I sure am looking forward to life after dialysis.

Sunday, February 20, 2011

Getting ready

Getting ready - that was what this weekend was about - and I think we are getting there. Jeanne and I spent a lot of time on Saturday figuring out all of the things that are going on for the week or so we'll be out of commission and planning what things we should do ahead of time, what to put off until later, what to ask someone to do for us and what we just won't do at all.

Looks like Dad has gotten the official duties of shuttling people in and out of NYC, including the 3:30am trip down on Thursday morning to get Jeanne to the hospital by 5:30am. If anyone has one of those cool-looking chauffeur's hats, please lend it to him for the week. I think he'd look sharp in it. Mom will be holding down the fort at home, for the most part. And then, we've got a number of other duties that we are asking (or soon will be asking) a variety of other people to help with - especially in the area of shuttling kids back and forth from their various activities.

I've decided to grab a hotel room for Thursday night at the Helmsley Medical Tower directly adjacent to the hospital. With the fasting and the bowel prep going on, along with not knowing exactly when and how much I'll be able to visit with Jeanne, it seemed like the smart thing to do as opposed to my original plan which was "I'll just crash on a couch or in a chair somewhere". I can tell you that the $50 reimbursement from the insurance company will barely put a dent in the hotel bill, though!

Today was spent getting the house ready - cleaning out the junk in the guest bedroom, cleaning the bathrooms, paying off some bills and getting as much household stuff taken care of as possible so we don't have to worry about those sorts of things as much in the coming weeks.

There are still a few more phone calls to make to get a few more things covered, but all in all, it's coming together. Thank you to the many, many people who have offered to help in so many ways! It really eases the mind to know that there are so many friends and family willing to step up and lend a hand. We couldn't do it without you!

Wednesday, February 16, 2011

pre-op testing day

Today (that would be Wednesday for those of you reading on "tape delay" on Facebook), Jeanne and I headed down to New York Presbyterian for our pre-op testing. Traffic was pretty normal - which is to say there was a lot of it - so we arrived about 10:30 for our 10am appointments. We quickly parted ways as we each had our own sets of tests and interviews to take care of.

First up for me was to meet with Marian who went over some of the basics. I have been scheduled to arrive at the Same Day Surgery Department at 5:45 am on Friday the 25th. I can have food up until noon the day before, then only liquids until midnight and then nothing after midnight. I also have to do a bowel prep mid-afternoon. Marian assured me this was a mild one and nothing like the type of cleansing necessary for a colonoscopy. I sure hope that's true, because I'll be hanging around the hospital waiting for news on Jeanne at about that point in the day. To be safe, though, I'll make sure I have all of the nearby bathroom locations mapped out in advance! Marian also stated, as she had previously, that it is expected that I will be discharged on Sunday the 27th. In fact, one of the handouts I got was a sheet which details out what is expected of me after surgery and states that I will be discharged home by 10am.

Next stop was a visit to the surgeon. His staff kept me busy for a while with a pile of paperwork and then called me in for our discussion. I am going to be in very good hands (sorry about the pun). My surgeon was at John Hopkins in the late 90s when they first began performing laproscopic kidney removal and has probably performed this surgery as many times as anyone else on this planet. Even though I am not (not yet?) feeling very nervous about the surgery, I found this information reassuring nonetheless.

I found out that it is my left kidney that they will be removing. Apparently, that is the "default" kidney that gets removed because it is anatomically slightly easier to transplant the left one than the right one. If there were some reason to believe that one of my kidneys was "better' than the other, they would leave me that better one, but otherwise, they take the left one and leave the right one.

I also was presented with the opportunity to be part of a study. Apparently, there are two similar, but slightly different ways to perform the laproscopic surgery. The conventional way is to place three small holes in the abdomen for a camera and surgical instruments along with one incision for removal of the kidney. In the alternate method, a single incision is used for the camera, the instruments and the kidney removal. The study is intended to determine if the alternate method provides any benefits in terms of donor recovery. I very happily agreed to be part of the study. As a result, they will randomly choose which of the methods they will attempt to use on me. And, then I will have to answer some occasional surveys over the next five years or so.

After the visit with the surgeon, I was sent over to the pre-op testing area, and did a lot of waiting. First I waited for someone to show up at the desk to tell me to go over and sit in the main waiting area. After waiting there for a while, someone came and took me in to go over some paperwork. That took about five minutes and then that gentleman took me to yet a different waiting area. After probably another twenty minutes, a nurse came by and had me give a urine sample and then drew some blood. Then I had to wait for someone to give me an EKG. I was told I would be next. So, I waited in the room for someone to come. And waited. Then, another patient needed the room I was waiting in, so I got brought to yet another room to wait some more. Finally, after 30-40 minutes of waiting, I got fed up and went looking for someone. Of course I found the nurses chatting around the desk. They scolded me for leaving my assigned room, but it appeared my actions finally got someone to give me the EKG.

Next stop was radiology where I got my chest XRay - with almost no waiting! :-)

Now done with all of my testing, I went in search of Jeanne, and found her getting off one elevator while I was about to get on a different one. She was headed down to radiology for her own chest X-Ray. While she was waiting for the X-Ray (I must have just beaten the rush), she filled me in on her day. She had her own set of tests she had taken and her own doctors to talk to. Jeanne needs to show up for her surgery at about 5:30 am on Thursday the 24th. Since she doesn't get home from her (hopefully last and final) dialysis session until about 1am, and even at that time of day, its at least a 90 minute drive to the hospital, there won't be a lot of sleep to be had the night before the surgery.

So, now that we have times scheduled for the surgeries, I guess the next step is to work out all of the logistics (how we'll get to the hospital, where I'll stay the night before my surgery, who's watching the kids, how we'll get home, etc.) Thankfully, we've been offered a lot of help - we're going to need it!

Tuesday, February 15, 2011

pre-op testing is tomorrow

Jeanne got a call today that we are to go in tomorrow for our pre-op testing. I don't know exactly what testing they are planning on doing, but I'm sure they'll be drawing some more blood - that will be the third time in a week for me, due to the fact that I just had my blood work done for my routine physical last Wednesday as well.

Then, Jeanne has to go back down on Friday for a mammogram and pap smear. Unfortunately, her previous one was 11 months ago - too long ago to be acceptable to the transplant team, and too recently for the insurance company to be willing to pay for one done locally.

Jeanne has been having a lot of trouble at dialysis lately. On Friday night, the nurses ran into some issues with the needles and had to send her home early and bring her back in on Saturday to finish her session. Then, something similar went wrong yesterday and so she is back in again this evening. When she goes in for her normally scheduled session tomorrow, that will be 5 visits in 6 days for her! This transplant can't some soon enough.

Monday, February 14, 2011

Happy National Donor Day

We didn't hear anything from Marian or anyone else at the transplant center today. Well, at least I don't think so. You see, I got to talk to Jeanne for all of about 39 seconds this evening in the parking lot of the Dialysis center where we met to transfer kids after I picked up TJ from his basketball game. That gave us just enough time for a quick kiss and a short discussion to decide who was getting which vehicle and not much else. I assume she would have mentioned something if we had gotten any news. Not exactly a romantic Valentine's day for us this year. However, today is also National Donor Day. As such, I'd like to take the opportunity to thank all of the altruistic living kidney donors out there, including whomever kicked off the kidney chain we are part of, and Laura, author of the excellent blog All You Need Is One.

Saturday, February 12, 2011

Friday visit to NY Presbyterian

Yesterday morning, I was up and out the door by 6:30 am to head down to NY Presbyterian Hospital in Manhattan for the purpose of having my blood drawn so they can find a suitable recipient for my donated kidney. The visit itself was pretty uneventful, but it gave me the opportunity to learn more from Marian about the whole process.

This donation chain has been apparently been broken into 3 clusters and Jeanne and I are involved in the last of the three clusters. Each cluster is a series of closely spaced sets of kidney removal and kidney insertion surgeries. The first two clusters have already been completed and the last cluster will consist of just two transplants. On Wednesday, the 23rd, a kidney will be removed from a donor at the UCLA Medical Center. This person's partner has already received their kidney sometime earlier this month as part of cluster 2. That night, the kidney will be flown across the country to NYC (everyone pray for some good weather!) and then placed into Jeanne sometime on Thursday the 24th. On Friday, the 25th, I will go in for surgery to have one of my own kidneys removed (funny - it didn't strike me until just now to wonder which one). It will be placed into a soon-to-be-determined recipient, presumably sometime later that same day at the same hospital.

I asked Marian if we would ever find out more about everyone involved in the process. She said that it was likely we would. I think it would be exciting to meet some of the other people involved in this chain. I would most especially like to meet the person at the front of the process. That is the most special person of all. Most of the people involved in my process, like myself, are donated a kidney on the condition that someone they know and love is getting one in return. But, what is required to get one of these chains going is a so-called "altruistic donor" - that is, a person who donates their kidney to noone in particular, as was the case with Melissa back in 2008.

If you want to get a good feel for how these living donor transplant chains work, read this article that I happened across earlier today. It sounds like it was a very similar chain to the one we are part of, as it involves both the UCLA Medical Center and a person with PKD just like ours does.

I'll do my best to keep up with my blogging as we go through this process over the next few weeks. I know the last couple of years have been pretty slow for this blog - but 2010 in particular was a very tough year for us and I just couldn't bring myself to blog about all of the hospital visits, surgeries and dialysis sessions that Jeanne has had to endure. Those of you who read these entries on Facebook may want to directly check the blog at if you want up-to-date info, as Facebook seems to take nearly a whole day to get around to importing these entries in.

I Hate Hamlet

I'll try to post later when I have a moment about yesterday's quick blood work visit down to NYC, but in the meantime, here is a photo of TJ and the rest of the cast from Oakwood Friends School's performance yesterday evening of I Hate Hamlet.

Thursday, February 10, 2011

we have a match!

After 17 months of being on the transplant list, a little over a year in the National Kidney Registry and six months of dialysis, we finally have gotten the phone call we've been waiting for! They have managed to form a chain of living kidney donations that includes Jeanne and myself. If all goes according to plan, Jeanne will be receiving a kidney from someone in California on Thursday, Feb 25th (yes, just two weeks from today!) and the next day I'll be going in for surgery to have my kidney removed and donated to someone else.

Everything seems to be happening very quickly. Just last Friday, Jeanne got a phone call that there was a potential match for her. On Monday, she went down to the hospital to have some blood drawn, and then just this morning, we got the good news that the California kidney is a match for Jeanne. 3 out of 6 antigens match, which is quite good for a non-related donor.

Tomorrow, I'll be headed down to the hospital in New York City to have my own blood drawn so that they can perform the necessary tests to figure out who gets my kidney. I expect I'll learn a little more about what to expect as I go through this as well.

Apparantly, I'll only be in the hospital for a couple of days, and maybe about four days for Jeanne. For her first transplant, Jeanne was in the hospital for 10 days and Susie about a week, if I recall correctly. Things have changed a lot in the world of transplants over the last 13 years!

Thanks to everyone for their support and prayers! And keep them coming over the next few weeks!