Sunday, March 27, 2011

Pinewood Derby

Friday night was Brian and Jason's first Pinewood Derby as Cub Scouts. They each made the finals for the Tiger Cubs competition. They both enjoyed themselves immensely, as you can probably tell from this picture.

Brian also received an award for "Best Scout Spirit Car" which he shows here:

TJ stepped in to help with the running of the races. I was very proud of how he came forward to help out without being asked.

A big thanks to Bron for taking over and running this for me. I had originally volunteered to run this event, but I had to back out after Jeanne and I got the good news about being able to become part of a kidney donation chain!

Monday, March 21, 2011

second post-surgery followup visit

It was back down to NYC today for another visit with Dr. Del Pizzo. The good news is that there is no longer any sign of infection. The bad news is that my wound is still going to need some more time to heal. Since my last visit, I've been packing the wound with gauze to help it drain. Well, I guess I need to pack it a little more tightly, so I need to start using a larger size gauze and push it in a little tighter each time I change the dressing. I'll go back and see him again in two more weeks.

Today was certainly my best day since the surgery. I had a meeting at TJ's school, drove back and forth to NYC for the doctor's appointment, brought the kids to CCD, did some food shopping and still don't feel completely drained. Tomorrow, I'll be going back into the office for work for the first time since the surgery, so I hope the good energy levels continue.

Jeanne's been doing pretty well also. Her biggest issue right now is that one of her muscles that got pushed around pretty good during the surgery is bothering her a bit. But, the new kidney seems to be doing great! And, she drove for the first time since the surgery today. She'll still need to minimize the amount of time she spends in public places for a few more weeks, but at least she can now do a quick errand or two if she needs to.

Thursday, March 17, 2011

Meet Barbara and Karen

In my previous post, I had mentioned that Jeanne had gotten a call from Marian, our transplant coordinator, stating that Jeanne's donor would like to be in touch with her. Since then, we've made contact (via email and Facebook) with Barbara, who donated the kidney that is now inside of Jeanne, and Karen, who is Barbara's daughter who received a kidney as part of the chain. They both seem like wonderful people.

Barbara, as it turns out, is not from California, as we originally thought, but from Florida. Barbara flew out to California, where her daughter lives, to participate in this kidney donation chain. Sadly, Barbara lost her first husband to an aneurysm due to PKD (Polycystic Kidney Disease, the same disease that Jeanne has) at the very young age of 25. You can learn more about Barbara from the comment she left on my previous post.

Karen, Barbara's daughter, also has PKD, which she inherited from her father. As has been the case with Jeanne, the disease has impacted her life at a relatively young age. Karen is now about the same age as Jeanne was when she got her first transplant. Karen has been very involved in the PKD Foundation and its activities - including being both a chapter coordinator and a walk coordinator when she lived in Utah a couple of years ago. You can learn more about Karen from the blog that she and her husband put together, or from this video I googled up last night.

Some interesting things I've learned from Barbara and Karen:
  • Apparently, Jeanne was not the originally planned recipient for Barbara's kidney. Something happened along the way which made the original recipient unable to get Barbara's kidney, opening up the opportunity for Jeanne. Something similar must have happened in my case as well, as I was originally told that my kidney was destined for a "he" and it turned out that it went to a "she".
  • It turns out that Karen and Jeanne both attended the same PKD Convention at Disney back in 2007. So, we were all within a few feet of each other just a few years ago!
It's been very exciting to get to know Barbara and Karen - and there is something about Karen and Jeanne both having PKD that seems to make it even more special. I guess because of everything I have seen Jeanne go through, I feel I can relate to what Karen has had to deal with, and it makes me very happy to know that she was able to obtain a kidney and avoid going on dialysis.

In the meantime, I seem to be improving. Best as I can tell, my infection is healing OK - I'll be back to see Dr. Del Pizzo on Monday to find out for sure. Yesterday was my best day yet since the surgery- I was able to make it though the entire day without even so much as a Tylenol. I can feel my energy starting to kick back in more every day and my appetite is getting back to normal. I'm still working from home, but am able to put a full day in now. I just need to keep reminding myself to pace myself, so I don't get too wiped out.

Saturday, March 12, 2011

first post-surgery followup visit

Yesterday (Friday) was my post-surgery followup visit with Dr. Del Pizzo. I pointed out to him that I had been seeing an increasing amount of discharge from my incision over the past couple of days and wasn't sure if it was something to be concerned about or not. After poking around my belly button for a couple of minutes (ouch!), he informed me that I have a slight infection at the incision site. He subscribed some antibiotics for me and gave me some instructions for how to change the dressing covering the incision 1-2X per day. I'll be going back to see him again a week from Monday so he can make sure it is healing better.

So, it looks like it'll be a little longer before I'm back in action, unfortunately.

While I was down there, I did stop by the transplant clinic for a (very) quick visit with Marian. Since I stopped there first, I told her everything is going well (which mostly it is) and she was happy to see me up and around.

Later, after I was back home, Marian called and talked to Jeanne to let her know that her donor was interested in getting in touch with her. It would be very exciting to learn more about other people involved in this kidney donation chain.

Thursday, March 10, 2011

tired of being tired

Sorry for not keeping up with the blog posts, but the reality is that there isn't a whole lot new going on around here. But, for those of you who are keeping up with our progress through these posts, I suppose I should be a little more diligent about reporting what is going on, even if it's "not much".

Jeanne and I continue to heal - but I have to admit that for me, at least, it is taking longer than I would like. On Monday and Tuesday, it really seemed like my energy level was starting to come back, but then yesterday I felt very wiped out much of the day. I seem to be finding myself often in a spot where I feel too good to do nothing, but not good enough to do anything - if that makes any sense.

Jeanne's followup visit on Tuesday went very well. They've told her she can already back down to one visit per week, which is great. A lot of that is because this is her second transplant, and she has already established a history of being a good patient - which means, most importantly, that she can be counted on to take all of the necessary medications. I find it such a shame to hear stories of patients who get a kidney transplant and then don't follow through with taking all of the necessary medications to keep that kidney healthy for as long as possible.

I rescheduled my followup with Dr. Del Pizzo from today to tomorrow, as they were predicting some snow/sleet/ice overnight and I was worried that I might not be able to get out of here this morning. Of course, none of that bad weather came - it's been all rain. So, now I need to hope that the amount of rain over the next 24 hours isn't so much that it makes getting back down to NYC a real hassle tomorrow.

Sunday, March 6, 2011

the grass is getting greener despite having to deal with the septic tank

Well, Jeanne and I continue to heal up. I've been gradually decreasing my pain medication. At first I was stretching out the time between doses, then starting taking half pills, then switched from Percoset onto Tylenol. My last Percoset was on Friday and I've only taken four Tylenol all day long. And, I would have to say that I now mostly feel fine. I only occasionally get that "someone just punched my in the stomach" feeling now.

My energy level is up as well. I haven't yet made it through the day without a nap, but at least we are to the point where I can tell you how many I took today (two short ones). I made a couple of short driving trips for the first time today as well. And, this afternoon, Mom and Dad headed back home, so tonight is the first evening back on our own for Jeanne and I.

One thing I've learned about recovering from surgery: life is going to go on and not stop and wait for you to heal. As I mentioned a couple of posts ago, Brian managed to get strep throat. Thankfully, the antibiotics got him going again quickly and he was back in school on Friday (probably could have gone Thursday as well). Then, yesterday morning, what at first seemed to just be a partially clogged toilet soon turned into a overfull septic tank due to the leach fields being saturated from all of the recent snow melt. We were able to get the tank pumped, but are still getting some runback from the fields - and all of today's rain certainly is not helping. It's always something!

I'm going to try putting in some half days of work from home this week. I think I'm ready to handle that.

And, then Thursday is my followup visit with Dr. Del Pizzo (my surgeon) and the transplant clinic.

Thanks to all for the many cards, prayers, dinners, carpools, kind words, and other help that so many of you have provided us over the past 10 days. Jeanne and I certainly could not have done this without all of you!

*** 100 bonus points if you can name the author who inspired the title of the post and his/her relation to content of my blog.

Wednesday, March 2, 2011

a look back at surgery day

Well, it is now Wednesday - my third full day home and 5 days after my surgery. I'm still taking the Percoset for pain medication, but I am gradually stretching out the numbers of hours between doses. The biggest issue is that I still feel exhausted most of the time. But, despite being exhausted, I can't seem to get more than 2-3 hours of sleep at one shot.

Since not much else is going on today, I am going to try to take today to write up a post detailing everything I can recall about surgery day. Of course, I remember nothing about the actual surgery itself, and some of the time spent in the recovery room is a bit of a fog, but everything else I experienced that day will forever be part of one of the most special days of my life, so I better write it down somewhere before I forget it!

The last I posted on surgery day, I was about to check out of my hotel room. As planned, I headed over to 2 North to see Jeanne. When I left Jeanne the evening before, she was still in the recovery room, but plans were in place to soon move her into room 222. So, since I knew where she was going to be and I only had a few minutes to visit, I headed directly for room 222. Three steps into the room, though, and it was clear to me that the person in the bed was not my wife, or anybody's wife for that matter, as the person in the bed was decidedly male (a NYC firefighter, we learned later). A quick stop at the nurses station and I learned that she was placed into room 219 instead.

I found Jeanne awake and sitting in her chair watching television. It was good to see that she had been up and around a bit already - getting mobile as quickly as possible is the best way to start the healing process after surgery. I only was able to stay about 10 minutes or so, so we talked a little and then I gave her a goodbye kiss and was on my way over to the same day surgery area on the third floor.

This first stop of the day was very familiar, as it was pretty much the same process Jeanne had gone through just one day prior. David is the first guy you meet - he is responsible for collecting up your personal belongings for you, handing you the fashionable hospital garments you need to change into and getting you started with all of the final preparations before the surgery. As soon as I was done changing, Mary and Angel, the same two nurses who had worked with Jeanne the morning before, grabbed me and took me to a room for the final preparations. It was very comforting to have them take me through the process. They were very interested to hear how Jeanne was doing and I was happy to tell them that all indications were that this was going to be a successful kidney transplant and she was already on the road to recovery.

Once I had all of my vitals taken and the necessary paperwork completed, I was shuttled off to a waiting area to wait for the surgeon to arrive. By this point, Susie had joined me so she was able to keep me company during the wait. We shared the waiting room with a couple who had brought their little boy, probably no more than 5 years old, in for surgery (later Susie learned it was to remove a growth near the brain). It's really sad to see these kids so young have to deal with such issues.

After 45 minutes or so, Dr. Del Pizzo came in and we confirmed that he was removing my left kidney and then he marked my left side with a marker. After re-signing some paperwork that I had completed the previous week, he asked if I had any questions. My only question was "Do I get a picture of my kidney?" Unfortunately, he seems to be reluctant to provide me with any pictures, even though he admitted that pictures will be taken. I'll have to ask again during my followup visit in a couple of weeks. I can't imagine what his concern would be.

Soon after Dr. Del Pizzo left us alone again, an OR nurse came to take me away. What was unexpected to me, though, is that we passed all of the way through the holding area that Jeanne had been in the day before and I walked myself all the way to the operating room and climbed up onto the table. Somehow, I had figured I would be all drugged up before I ever saw the inside of the operation room. When I arrived, there were about 8 other doctors and nurses already there waiting for me. Immediately, they set to work sticking me with IVs, strapping me down to the table, stripping off my pants and asking me various questions. It all went by very quickly. The last thing I remember was them telling me to breath in this "Oxygen". I recall taking about three breaths in and that's the last I remember - something tells me there was something more than oxygen in there :-)

Of course, I don't recall anything for the next few hours, but I am told that Dr. Del Pizzo came out about 10:30am to tell Susie that the surgery was successful. Then, I was apparently being held somewhere while they waited for a spot to be made available in the recovery room for me to be cared for. When I first came to, I think it was around 11:30 or so. I do remember Mom, Dad and Susie all visiting me in the first few minutes as I came out of my sleep.

Once I became aware enough to notice any pain or discomfort, I was surprised to find that the pain in the area that the surgery was performed was pretty minimal. In fact, at first, it was only #3 on the list of discomforts I was experiencing. The most discomfort I was having was a huge knot I had in the middle of my back. I'm guessing that in order to perform the surgery, the doctors likely had my body twisted into some uncomfortable position on the stretcher, and my back was not happy about it by the time I woke up. #2 on my list was my eye. It felt like when a piece of sand flies into your eye at the beach - all watery and very irritated. Nobody seems to know what happened, but it did earn me a visit from an opthamologist right there in the recovery room. She diagnosed me with a scratched cornea and ordered me some eyedrops to help provide some relief. Neither one of these discomforts lasted very long. And, with help from the Percoset, even the pain from the surgery site was (and continues to be) very minimal. Most of that pain comes when I have to move myself around - either from activities like getting in or out of bed, or when coughing or burping jiggles up the abdominal area.

Pretty quickly after I was awake, I was cleared for removal from the recovery area and transfer to a hospital bed, as soon as a room was made available for me. At first, talk was that I would be going to the 15th floor. But, it seems that there were having trouble finding an available room. In fact the whole hospital seemed to be pretty full - a little surprising since I thought that generally they tried to get folks out before the weekend started. So, in the recovery area I remained.

Not that I minded much. Steve, my nurse, was giving me excellent care - helping to make my back as comfortable as possible, and giving me juice and pain medications as needed. Brenda, who was Jeanne's nurse from the day before, also was stopping by from time to time to check on me. And, various other doctors were stopping by from time to time to check on me as well. So, I was getting all of the attention I needed.

At some point while I was in the recovery area, I learned that my recipient was a "she", and not a "he" as I had been expecting from my last conversations with Marian. I also inferred that she must be roughly the same age as me, because some of the people who I was meeting with were getting confused and thinking that I was giving my kidney directly to my wife instead of us being involved in a kidney donor chain. All of the indications from the medical personnel were that the kidney transplant was a success and my former kidney was already working well in her body.

Finally, around 5PM or so, they found a room for me. And much to everyone's surprise, it ended up being the room right next door to Jeanne! This was highly unusual as the section that Jeanne was in is normally reserved just for transplant patients. But, given the shortage of rooms, this turned out to be the best available place for me, I suppose - unless someone was pulling some strings for us behind the scenes. So, when they wheeled me to my room, rather than leaving me in the hallway while they took care of the necessary paperwork, they pushed me into Jeanne's room so we could chat and she could see for herself how I was doing.

Once in my room, I found the hospital bed much more comfortable than the stretcher and that brought quick relief to my back. Marian stopped by not much later on her way out of the door to say hi. I told her everything went well and thanked her and the whole transplant team for making this all possible for us. My liquid dinner came about 8 and then I got up around 10 or 11 for a short walk and that was about it for surgery day.

Tuesday, March 1, 2011

strep throat

Well, we took Brian in to the doctor's today and learned he has strep throat. One of the things that must be done to a recently transplanted kidney patient is that their immune system must be extra suppressed to prevent the kidney from being rejected. That makes Jeanne in her current condition especially susceptible to catching things from other people. So, we'll be keeping Brian and Jeanne pretty much separate until Brian gets himself feeling better. And, we'll be taking extra care to wipe things down with alcohol wipes whenever Brian is done with them. Hopefully, nobody else catches this from Brian either.

The trip to the doctor's office pretty much wiped me out today. All I really did was sit in the car on the way to the doctor's office, walk in and out of the doctor's office, walk and and out of the pharmacy and then sit in the car some more on the way home. But, that pretty much did me in for the day. It is amazing to realize how low my energy level really is. It's kind of frustrating, too, because when I just lay around, I feel good and want to get up and do something, but then when I get up and start doing something, I pretty quickly run out of energy and just feel like lying around.

I received my followup phone call from the hospital today. They asked how Jeanne and I were doing and I said we were both doing quite well. They mentioned that the woman who received my kidney had been released from the hospital and that things were going well for her also.

Jeanne heads back down to NYC tomorrow morning for an 8AM appointment. They'll draw some blood, have it tested, and then making any necessary medication adjustments based on the results. This will be the first of quite a few such visits she will be needing to make over the next several weeks.