Archive for March, 2011


Flying High

We seem to have most of the issues sorted out. Most importantly, I have a very happy liver and all the numbers seem great. I have not had any pain medication for five days or so in the hydraulic leaks have stopped. I am still on a bag of saline every day for hydration but I assume that will stop fairly soon. So, I am one happy camper.

Yesterday we drove to the suburbs visited the office and house. Picked up the mail and check that the Apple Store for the new iPad. I feel very normal, start out at 100% every day like always, but just start to fade after a while. That is the next thing to fix but that only comes with time and exercise. I have no complaints. At this point, all of the issues seem long ago. It will be good to get back into the saddle again.


The Impatient Patient

That’s me…

Everything is going as expected. Over the last week I have had only two real issues, both which are not issues but expected. One is the draining from the wound. (The hydraulic fluid problem) some people leak for 30 days. I think I’ll have the problem solved before then, but it is been very annoying. The last couple of days drainage has slowed considerably. The other is dehydration. I have always dehydrated quickly. But because of the leakage I have to drink tons of water. In addition they keep pumping in about 1 L of fluids every day. The more you leak the more fluids they give you which increases the leakage which really sounds like a perpetual roundaboute. But, eventually it stops and it seems to have stabilized over the last couple of days. It gives "happy trails to you" a whole new meaning and I feel like a leaky boat that the bilge pumps running continuously. A week ago I had constipation issues which becomes uncomfortable. Interestingly, the wound and my gut do not hurt at all. I maybe take a Tylenol at night but I can go from laying flat and sit up and nothing hurts. They said the muscles that they cut through would hurt for some time so maybe I didn’t have any muscles to hurt. I am now about 8 pounds below my preop weight, but I’m still a long way from being the Boy from Biafra.

Everyday they keep adjusting. They take very small measurements of all the good stuff in the blood and then make adjustments on the medication as they cut it back. Being two blocks away is a godsend because it’s close and they can do everything very quickly. Folks in a rural area have to travel to get to a hospital for the blood work, and then it takes a few days to reach Northwestern which I assume is more problematic and places patients more on a roller coaster trying to get everything cut down. The number of pills has generally gone down. I am on a study to eliminate antirejection medication permanently which seems to be a wave of the future. If something gets out of whack, that’s easily fixed as it shows up in the blood work immediately. If there is any rejection you see in the blood work long before you feel it in your body. I would assume in six months the worst case I would be on one or two medications.

I am the impatient patient because I really thought I would be walking around the block after for five days after surgery. I think I was slightly too optimistic. Now it’s even more frustrating because I feel fine and everything is great until I walk 100 yards and at that point I am winded. They keep telling me how well I’m doing –very well, and I know it’s true. There are some folks that I have met having a really rough time but were in not so good shape going into the surgery.

We checked in with some of our other friends today at the clinic. The guy that got the kidney donated by his son look fantastic. They took out all the to see had for dialysis because of never have to do it again. Their daughter wants to be a nurse and is Nancy’s new texting Buddy. I think she would make the perfect St. Norbert student in the nursing program. These amazing stories happen on a daily basis and there is no question the various members of the team go home at night knowing they have done wonderful things for people. They really make a difference to everyone around them and virtually everyone in the liver clinic are frightening smart people that really know their stuff. I would assume that attempts are made to poach them. They are really that good.

I keep on picking up bits and pieces of the surgery. Today I found out that when Nancy, Laurie, and Annie wanted to see the old liver (which I really thought they would do) they didn’t know quite how to handle it. Apparently of the thousands of transplants they have performed, we were the first ever to ask. So, they did what they do with any crazy person–they sent in the psychologist. I wish I could’ve been a fly on the wall. My family probably just kept digging the hole deeper by talking. I am sure the records now states "patient’s family has separation anxiety with patients old liver". One thing is for sure, I know we have been around too long. Today, Nancy’s twin sister Jane came for a visit. Everyone greeted her thinking she was Nancy on the elevator. Having a twin wife has its advantages.

I think I have now given away 50 boxes of Girl Scout cookies to the staff. Thanks Melissa for selling me all of those. Thin mints seem to be the prevailing favorite and I’ll probably be dead meat when I run out.


Day 11–Going Strong with Minor Hydraulic Leaks

Things seem to be going extraordinarily well. Every day equates to more energy and less pain. And the pain isn’t all that bad. I didn’t cry once. Pain is controlled with only a Tylenol product. All of my systems seem to be functioning well. All blood work remains normal and everything seems to be falling into place as planned. I am now only 10 pounds above my pre-op weight. At this juncture it is safe to say that there’s probably no aspect of this that could have gone any better. I seem to be healing quickly and my stamina increases every day. Currently the limiting is stamina which really drives everything else.

As I have said many times before I am highly impressed with the NMH staff. Now, being involved in the whole experience gives me yet another unique perspective from which to judge. I am well familiar with the culture within a mission driven academic institution and the commitment that comes from those involved. NMH is A Center of Excellence and all of the staff is focused on the mission like a laser. The result is an institution that attracts only the very best. If you’re not the best in what you do you would be frozen out by the others. The best attracts the best and soon you have a group of high performers probably in the upper 3% of the world. I am certain those involved in the transplant unit consider it a privilege to work and learn among their peers who are considered the best and brightest at one of the world’s leading research institutes. Nancy and I are very grateful for everything they do, especially being on the receiving end.

I also have a new appreciation for my skin. Skin is very useful because it keeps the body held together and all the wet stuff inside. And when it leaks, we usually have a good idea of the source through quick process of elimination. However in my case, and all of my noncompliant holes, I don’t know from where all the leaks emanate. Part of the healing processes getting rid of the liquids. After leaving the hospital they still have drains hooked up, but after being home for two days they remove the drains which means the Staples leak a lot. Frankly, it looks like 5606 hydraulic fluid. So, if I wanted to escape it would be difficult because one would only have to follow a trail to find me. I have also found a new use for them feminine products–they are great for soaking up the hydraulic fluid. (Maxi pads nighttime SKU #462 180 6381 thanks David for your advice) Anyway, this is all normal, but continually leak checks are always the order of the day. In the meantime, with all the bandages on my front I’m scared to go outside as I could be mistaken as a bomber.

So, I am very pleased with the results so far. My docs say in six months will be able to ski all day without a problem. I could not have asked for a better outcome.


Hello test, test, testing…

Dan here….

Thanks to very one for the very kind notes and call. All of us are very appreciative and we will all talk soon.

So, it all seemed to go on planed. They caught me at the office around 1pm on Monday. I can always tell when it is one of those liver calls, because the coordinators flip to their talking points so they can cover the contingencies. These ladies are real trained professionals, they have been in the game a long time, and know their stuff. Anyway, this had been the prefect one they were looking for and I should show up around 6PM. I called Nancy and the girls and we all met at the condo and walked over to NW at 6PM. The liver was a short flight away – I think Peoria- and it would be in around 8PM. They promised they wouldn’t tale the old part out before the new one arrived …..

It takes about an hour for prep before they even start the de-installation. They put you under for that which was the last I remember. It took 4 hours to remove the old liver. My surgeon said I had a “massive organ” so now my friend Terry refers to me as his friend that used to have a massive organ. They thought the old liver looked pretty good, but the new liver was really, really good.

The entire op took 11 hours or so. And it all went as planned.

The next thing remember was fuzzy, but there was no pain and I told the Surgeon the next day it was a non-event. But that is before all of the plumbing re-boots. And it is easier to shut down than it is to start up again. I’ve been home now since Friday Afternoon and it all gets slowly back in sync. The home nurse was in yesterday and today. And tomorrow I spend the entire day in clinic. They say my blood work is really good and all the things I check at home are looking good as well.

So, the bottom line is I could not ask for this chapter of As the liver turns….

To have gone any better…


Home Again Home Again

Its less than 4 days since the transplant and Dan is back at the condo. We are very proud of him and of his determination to heal and get out of the hospital. Today was filled with meetings with just about every kind of specialist, doctor, dietitian, social worker, pharmacist, etc geared to prepare us for the next few weeks. Nice/Naughty nurse Nancy is ready to go with a huge bag of meds- it really is a ton of information and will be a full time job keeping up with his requirements at least for the next few weeks. He is doing awesome. If you were sitting at a table with him you would see no difference in him- he is completely back to normal mentally and looks fine. His energy level is low and he moves slowly but he can and does walk a lot. Pretty incredible although we are not at all surprised, I am very sure that a huge part of his success has to do with his positive thinking and incredible outlook on life.

There is a lot to be said about our experience as a whole at Northwestern that I hope my dad will start to write about tomorrow. The incredible staff as well as our experience meeting the other organ donors and recipients on the transplant floor was truly life changing and inspiring. There were 4-5 other families that we got to know a little bit this week, and it was so amazing getting to see people regaining their strength and then you would see someone walk for the first time and just feel this amazing happiness for them. When someone was discharged (including dad) it inspired the whole floor. I know we will all have a lot to say about this experience and about organ donation, but right now I am at a loss to even begin to start to describe what we experienced and what it feels like to be somebody who benefited from organ donation. We will never be the same and we feel compelled to give back to this circle of giving however we can, I think I can speak for my whole family when I say that.

One thing I have mentioned is that he has had a chronic case of hiccups since his surgery. His diaphragm is irritated which is why he has them. If you know the cure to hiccups please post them now- we have tried everything and standing on his head and drinking water is not an option today.


Outta Here!

Mom and dad are packed and ready to get out of the hospital. Sometime after noon Dad will be discharged! Right now there is a parade of staff giving them post-transplant instructions. There is a ton of new information for them!


This is the spot on his old liver!

Laurie Lee

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