Live IU Transplant Twittercast

"An organ donation is really helping TWO people: the recipient, and the next person on the waiting list." -Dr. Goggins

About three weeks ago, IU performed a living kidney transplant. Of course, this is a wonderful thing, but in itself isn't particularly newsworthy. However, they decided to do this transplant involving two living (friends) patients--a kidney donor and a kidney recipient--live. Not on live television, but on social media via Twitter. This is called a 'twittercast' for those who aren't up-to-date with social media terminology. 

http://www.latimes.com/news/nation/nationnow/la-na-nn-live-tweeting-kidney-transplant-20120613,0,4934514.story

Taking Care of Business

I am very happy to report that Dad is back in California! (This is pretty overdue--he actually flew home 11 days ago...) It's hard to believe that this journey has come this far. I actually am extremely relieved about all of the progress Dad has made, but I have been overwhelmed with many different emotions since I came back to New Jersey on May 19. In fact, I think I'm just overwhelmed.

I think I am still processing everything that happened the past few years, months, and weeks. Getting back to my life at home and work has also been a strange adjustment. I have a new appreciation for life as the cliche goes, however I'm having trouble balancing that with my usual to-do lists. Aren't they all intertwined? I want to paint my bedroom so I enjoy the space more, but why am I 'wasting a weekend' if I can be enjoying some precious time with friends or family? I want to plan a vacation, but how can I book something before I know when I could see my parents again? Why would I spend time blogging at all anymore? Yet--shouldn't I spend the time to maintain the intention of this blog and capture the experience of everything related to my father's liver disease--particularly the good news and emotions?

Leaving On A Jet Plane

I cannot get Peter, Paul & Mary's song Leaving On A Jet Plane out of my head the past few days. The song has a pretty similar meaning to what I have been feeling lately (except I'm leaving my father, of course). Dad also has been playing his Peter, Paul & Mary (PPM for short for today's purposes) Pandora station a lot, so I have heard many PPM songs over the past several weeks, including this one. In fact, I brought in my father's iPad into the TICU and played that station for him hoping that it would help relax him given all that he was battling. Last week, in the waiting room at SOPA, I even taught Dad the concept of putting headphones into the iPad to listen to Pandora and he was singing along to this station. Perhaps even he has a lot of PPM songs stuck in his head now, too.

I'm ready to return to my life in New Jersey. However, I am coming back with a very new perspective and I'm fairly weary. To say that I am grateful for my father's life-extending and quality of life-improving transplant would be a gross understatement. That being said, I also have endured a lot of stress over the past 6 weeks. Thankfully, I believe that Dad is truly medically stable and more independent and I feel more comfortable flying back home.

Enjoying the Outdoors

I am technically back to work and Dad has plenty of recovering to do from his huge surgery with significant complications, therefore I really shouldn't be doing much other than helping my father and doing work. However, the weather in Indianapolis has been beautiful the past several days and quite frankly, how can you pass that up? Given that I still have the rental car (take that, Indy!), I have tried to take advantage of the car and the weather every day for a little sanity. Indianapolis is an interesting city with not a huge downtown presence, however there are plenty of recently-rejuvenated areas that have made for welcome breaks from the hotel. In case you ever want to visit Indianapolis in nice weather, I have some suggestions based on our week...

We went to Garfield Park on Saturday for a little picnic. There happened to be a sidewalk chalk festival with live folk music and plenty of children (and the associated-ice cream truck was convenient for our dessert--and, yes, I believe in dessert after lunch these days) which certainly broke-up our first full day in the hotel. The park is pretty large with various facilities, but seems like a long-time established park.

Picnic at Garfield Park

"You Are Not Boring. We Like Boring."

Not only have I learned a lot about transplants in general in the 5 weeks since I have been here in Indianapolis, but I can now begin to appreciate that the IU transplant program is very impressive. I could describe at length how the team here work well together and do their respective jobs well and certainly saved my father's life.

Yes:
The medical team at Indiana Health University Transplant saved my father's life and I am incredibly happy that Dad endured the move to Indianapolis and the prolonged waiting process here

Dad going for a stroll around TICU with 2 nurses on Day 6 (and a nursing student trailing)

Dad working with one of the physical therapists on the OTU

Back to the Hotel

After months of living alone in a hotel room in Indianapolis while waiting for a liver transplant, Dad actually was somewhat attached to the particular residence hotel that he stayed. A hotel is certainly not the same thing as home, but my father spent most of his hours and days in one hotel room. In fact, not only did he get used to the environment, but the staff at the hotel all were a part of his daily life beginning on January 1st as well.

It is a strange environment at this hotel, as so many guests are waiting for various treatments at the hospitals nearby and are generally pretty sick. I suppose that the hotel staff get used to the unique nature of the guests and develop a different type of relationship. A few of the employees at the hotel frequently asked about how my father was doing as I was running back from or on my way out to the hospital. Once Dad was somewhat awake after this incredible ordeal, he recalled to me that some of the front desk folks would even call up to his room to check on him periodically before the transplant. Given all of that, I was not too surprised that Dad was actually looking forward to returning to the hotel after his long stay in the TICU, the Organ Transplant Unit, and eventually the rehab facility.

On Friday morning, Dad finally left all of the inpatient hospital settings behind and came back to the hotel. Here he is in the standard position with CNBC on the TV and in his recliner. We still have a long recovery ahead of us, but it's certainly nice to see progress in the form of a little comfort...

Flashback to Day 1: How We Learned of the Transplant

Today marks one month since Dad had his liver transplant. Since things have seemed to be somewhat medically stable the past few days, I figured I should recount parts of the actual day of the transplant since it was so...how to describe this....interesting?

Dad certainly likes to do things his own way. I usually understand his general reasoning, even when I do not agree with it, however the day of his transplant falls under a new category. I had to find-out that Dad had his liver transplant in a very unusual way: only once he was discovered missing and I had to fight several IU employees citing HIPAA laws and his wishes that I could not find-out anything about his condition. Awesome.

As if I wasn't on edge enough about everything going on, especially with the fear that he could start bleeding from his varices or become more encephalopathic (and end-up in a coma) or both at any point, frantically trying to find my father who went missing was absolutely terrifying....

http://vandelinder.wordpress.com/2010/10/29/pressing-the-panic-button/

They Tried to Make Me Go To Rehab...

Yesterday, Dad found-out he had insurance authorization to leave the hospital and go to a rehabilitation facility. As with most things we have experienced, this was a very frustrating process since we spent several days waiting for the insurance approval since he was medically ready for the next step of the recovery process after the long ordeal of transplant surgery and it's various complications a couple of days ago. I really do not understand why the insurance company would drag their heels like this (which I heard is very common) as it would only add to their bills, but I am trying to avoid this blog diving into the health care debate at this point.

To make it even more interesting, we literally were told at 5:30pm on a Friday that we had the green light to make the move from the hospital to the rehab center. Really? 5:30pm on a Friday? When there is no one around to have basic questions answered? When there is not enough time to grab some clothes at the hotel for Dad and try to arrange for a rental car for me? Yes. We were told at 5:30pm on a Friday.

Transferring from the hospital to rehab in style

Facebook Helps to Increase Organ Donation Awareness

I came home from the hospital last night to see an article that describes how Facebook is going to start encouraging organ donation through the ability for members to share their organ donation status on the ever-popular social networking website:

http://www.usatoday.com/news/health/story/2012-05-01/Facebook-organ-donation-feature/54671522/1?fb_comment_id=fbc_10150792658168770_23024082_10150792715548770#fa5b3ac9

I thought the above article to be incredibly timely and interesting. My entire family has been very thankful for the gift of life that my father received. I hope that this outreach helps more families like mine.

Get Those Out of Here!

For those of you that do not easily feel queasy from medical-related images, today Dad had some of his staples removed from his incision. His belly is still pretty full of fluid (both from before and after surgery) and the photos don't capture the full length of his incision to his right side, but here is what it looks like 3 weeks after a liver transplant (and what a staple remover looks like, too--ha):

[Photos are shown in full post....]

Hospital Visits and Outings

I have a confession to make: the past 3 weeks have been very, very challenging for me. I also really hate to complain: Dad's prognosis is very good with the shiny, new liver that is still working well, Dad seems to have overcome ARDS, and Dad is still Hepatitis C-free.  I tend to be more optimistic than my father, however, going through all of the challenges since Dad had his transplant have taken a toll on me.

Thankfully, I had my husband and a few family members out here for a bit of the past couple of weeks. Unfortunately, my husband went home last week and the rest of the family will be leaving soon. Like so many things, I take for granted how nice it is to have people around and am starting to get anxious about being alone with Dad once again in a couple of days. It makes me realize how tough Dad has had it while waiting for the liver transplant alone in a hotel room in Indianapolis while feeling sick and now having only a very short visit while actually conscious with anyone other than me. Again, how can I really complain?

Thankfully, I have had some moments that have provided some emotional relief for myself. I have been able to get a little gym and yoga time in lately and went out to a few restaurants for dinner the past week or so. Today, a few of us took Dad outdoors to get a break from the hospital room for a break and the weather was fabulous. To sit outdoors for a few minutes and enjoy the sunshine was great. We even snapped a few photos to mark the milestone:

Dad showing-off his adorable outfit

And We're Off!

Dad has determination, for sure, and it doesn't go unnoticed. Today, he was transferred from the TICU to the Organ Transplant Unit (OTU). After all that he has been through, including just getting off of the ventilator yesterday, he decided to combine his transfer with his physical therapy and walk there. It was pretty impressive!

As one physical therapist told him--this may be a new record!

Days 7-17: Just Breathe

I left you all at Day 2--not an intentional move, but this liver transplant has been quite an ordeal thus far. As Dad and I talked the past several years about a possibility of having a liver transplant, we both talked about what a large surgery it was and how there are so many potential complications. As one can expect with the luck of this family, this has been the case for Dad.  It has been quite a tough road since Dad came out of the second surgery (the fascia closure) on Wednesday, April 11 and there have been plenty of complications. The great news is that we have made it past quite a few big hurdles and I can try to catch my breath a little today.

I have had to remind myself several times to just breathe these past couple of weeks. Advocating for a close loved one experience significant medical problems, that in itself is not always easy. I suppose I knew that going into this, but you all can probably relate to how difficult to really know what something will be like until it actually happens. Watching my father rely on the ventilator to breathe for most of the past 17 days...wow...just breathe indeed.

http://www.nhlbi.nih.gov/health/health-topics/topics/vent/printall-index.html

Day 2: The Comedian

Yesterday was the beginning of a new journey--Dad with his shiny, new liver. Well, Dad with a "very nice" liver from a donor that just provided Dad with a shiny, new future. It does not get more generous than that: giving someone--particularly a stranger--a second chance at life. Wow, pretty crazy to really let that one soak-in--I'm still processing that part of the past couple of days.

The last 30 hours or so have been a whirlwind for me, but I have spent the past 20 hours in a TICU room with Dad and watched him start the recovery process. Modern medicine is amazing and the staff at IU is great. Dad is also quite a patient {sarcasm}!

April 09, 2012

This morning was a normal Monday morning as far as I knew. I got up (late), drove to work with my husband, and set-up at work for the week ahead. That changed when I received a call around10:30am from Mom in a panic that she could not locate Dad. I'll save the details for later, but I was able to eventually figure-out that Dad had his transplant this morning.

YES. Dad had his transplant this morning!!!!

I am currently sitting with him in TICU (Transplant ICU) in Indiana. Pretty strange to be typing that after everything we have hoped for the past several months years. From what I have learned in talking to a couple of his surgeons today and his current nurse, everything went well. He has been slowly waking up right around when I walked into this room (~9pm tonight), but has a while to go. I even saw him looking me with open eyes and give me his frustrated look that he typically gives and pulled on his restraints, so I know he's coming around and it's great to see.

More updates to come, but had to share the good news. There are still a lot of hurdles to overcome, but the ridiculous wait for a new liver is over. Someone donated a liver last night that replaced my father's original liver--that his doctor here said looked 'like Afghanistan'. I am thankful for so many things right now, even though I am also very aware that my father has a lot to recover from and we don't know how that liver will ultimately 'take' in it's new home. I do know that Dad made it through of a lot of critical points so far in this process, including the surgery and the first 12 hours or so after.

It may finally be time to start changing the meaning of 'my mazel' in this family today.

Our mazel!

[Unlucky] Numbers: 02 06 13 19 32 Powerball: 22

Surprise! I didn't win the lottery last week! In fact, I bought $10 worth of lottery tickets and I literally had 1 number pulled. 1 number out of $10 worth of computer-selected numbers. I think that may be impressive in itself. Well, I lost $10 instead of the usual $5, but nothing new otherwise. In the meantime, last Friday was not a good day for the numbers for Dad at Indiana either.

Here are some very unlucky numbers to give a sense of what we're dealing with at the moment:
02 06 13 19 32 Powerball: 22

Winning the Lottery

I realize this is cliche, but I spend a lot of time thinking about what I would do if I won the lottery. As the Mega Millions is over $500 million this week, there is a lot to dream about. Completely unrealistic, but kind of fun. I try to buy $5 every time the pot grows past $100 million--something I learned from watching Dad do that when I was growing-up--and consider it money that will promptly be wasted. However, you can't win if you don't play, right? Strange, too--I don't gamble at all in other ways, but I feel compelled to play the lottery and continue to have big, unrealistic lottery-winning fantasies.

In past years when the lottery peaked above $100 million, I would think about having prettier household items, traveling to more amazing parts of the world, and a private helicopter to get me around so I never have to sit in traffic on the Pulaski Skyway again. I really don't think I'm too different than many people when I daydream about these things. This week has been giving me a lot to think about what I would do if I won the lottery. It has not been particularly easy week for me:

Topic of the Week: Public Commentary Continued

I have come across a few articles that are interesting and timely that I thought I would share. Either I am more aware or there is an influx of stories about organ donation this week. I suppose it could be a combination of both. I can really only process so much information these days, but I am also a bit compulsive, so I read both articles and figured it would make sense to share them here.

A close family member happened to listen to part of an NPR segment that interviewed the author of the controversial WSJ editorial that I began to discuss in my last post. Here is that NPR article and audiocast: this is the audio link and this is the transcript link. I happened to listen to this while at the gym yesterday and was pleased to hear that Dr. Richard M. Freeman made some very convincing, strong arguments to refute what Dick Teresi was claiming in his new book and the WSJ editorial I discussed. At one point, Dr. Freeman even claims that Teresi is "flat-out wrong."

http://dms.dartmouth.edu/news/2009/10/28_freeman.shtml

Public Commentary

My goal is not to preach to anyone or tell my family's stories to the general public. Yes, I have a blog. Yes, I often share my opinions--and strongly voice them. However, I am mainly doing this blog as an outlet for myself but also to keep some closer friends and family updated. I try to avoid broadcasting this information and also try to keep this somewhat anonymous. This is an extremely personal topic for my family, however there are many aspects of this situation that are impacted by public policies and opinions. Some I have already described, such as the national transplant system method of allocating organs--specifically livers using the MELD system. Others I have not brought-up yet, including the baffling low number of organ donors in this country.

I tend to get very frustrated with most media outlets easily about a range of topics: how the pharmaceutical industry is portrayed and how politics are covered as two examples. I actually get frustrated enough that I often avoid the news. However, in order to keep up with whats going on in my industry and the rest of the world, I try to listen to NPR and review articles in specialized forums, including the Wall Street Journal (WSJ) Health section. I came across one article the other day in the WSJ that I felt I had to bring-up in this forum since it was another case of a public opinion that the media is only exacerbating an ongoing problem in this country. In this case, this public opinion impacts Dad's situation.

The WSJ published an opinion by Dick Teresi titled What You Lose When You Sign That Donor Card. In case you don't have time or interest (or have access) to the article, the author talks about all of the rights that

Checking the Boxes

In my last post I talked about the long process of making it onto a liver transplant waiting list. In order for you all to appreciate how involved the process really is, I though it would be an interesting exercise for me to lay-out what is actually required during the evaluation process at every single center that you would like to be listed at. Remember, Dad went through this twice, because he is especially lucky. Not like getting listed twice made his situation any better...

The pre-transplant evaluation process is a mechanical process that is highly regimented and ignores any patient individuality or humanity. For all of you that feel you don't get enough individual attention when you see a physician, consider what is involved in getting onto a US-based organ transplant list. You are essentially treated like a black box that every analyst involved (mostly highly specialized health care professionals) has to evaluate you as an inanimate object and check the box. Once that box is checked, however, everything has to be analyzed together to consider you for the list. It all comes down to treating a patient that needs an organ for survival like something that needs to be 'managed' and the associated risks to be assessed before proceeding.


http://www.sciencedirect.com/science/article/pii/S0048969708006931


Pre-transplant Evaluation Requirements:

Making the List

I described a little bit about the organ allocation process in this country in a previous post--certainly a frustrating system, especially in our case. What I haven't really described is how fun it is to go through the process of actually getting on a waiting list somewhere. Since Dad was lucky enough to go through this twice, I figured it may be a good idea to share a little bit of what it was like. Honestly, the list itself of everything that has to get done and considered was so long, that I felt it deserved it's own (long) post. This post is to go through the general process of what you need to make it onto a liver transplant list in this country.

First, you need a referral from your local GI. I mentioned this a little bit in the post explaining how Dad eventually wound-up in Indiana. This means that your specialist that has been helping manage your liver disease realizes that there are no other options to help at this point other than receiving a healthy, new liver. (Is it really new and healthy? That's a separate topic...) That's a very positive way to start the process, right?

I remember Dad telling me a few years ago that his colleague, also what we consider to be his local GI at this point, told him that he needs to start considering getting on the liver transplant list. That news was very tough to hear. This is the equivalent of the doctor saying: "Even though you cannot survive without a working liver, your liver is not recoverable anymore."

Welcome to the process of getting on the liver transplant waiting list!

Next, you need to select the center that you would like to be listed at. Most people, like Dad at his first pass, will choose a center near home. Depending on where you live, that could be a single option. In the Los Angeles area, there are a few to choose from, however the local GI felt UCLA was the best option.

A Hell of a Diet

"I highly recommend this diet!"

This is probably the second most common sarcastic phrase to come out of my father's mouth. For those wondering, "my mazel" is probably #3 and I'll keep you in suspense for now what #1 is.

I am an eater. Always have been and still am. Ask any family member, friend, or colleague that sits within earshot of me and they'll tell you that I can put away a serious amount of food. Since I was 7. I'm still very proud that I could amaze entire restaurants full of people with how much the "small blonde girl" ate.  I am not alone--this runs in the family. For those keeping count, my family eats and kvetches a lot. Dad falls in the 'family member that can eat' category. Well, he was an eater until his liver disease progressed.

Another terrible side effect that doesn't get discussed enough is how advanced cirrhosis is certainly effective at unintentional weight loss and malnutrition. In fairness, there are so many significant side effects of this disease that it's really hard to keep the 'top 5' list of worst symptoms straight. End stage liver disease (ESLD) causes lack of appetite, difficulty digesting properly, increased risk of infection, and all sorts of other issues relative to metabolism and absorption.


http://www.cghjournal.org/article/S1542-3565(11)01169-4/journalimage?src=fig&loc=gr1&ishighres=true&allhighres=true&free=yes

 As a lot of people, right around Thanksgiving and the end of the year I noticed that I was eating too much and I already had added extra [8+!!] pounds since coming back from my Honeymoon in August.

Google Scholar

I am currently in Indiana visiting Dad again and am happy to report that he's feeling better. Well, relatively speaking anyway. Dad is still not up for leaving the room due to his many physical symptoms despite my annoying pleadings to get him out for a short bit, but since he's been comfortable enough during this visit to at least sit with me upright in the living room for several hours the last few days, I will take what I can get.

http://www.expedia.com/Indianapolis-Hotels-Candlewood-Suites-Indianapolis-Downtown-Medical-District.h1627340.Hotel-Information

We visited Dad's physician (his GI or gastroenterologist) on Friday practically as soon as I stepped off the plane from New Jersey. His GI was kind enough to make an exception to see us on a Friday: he usually only sees pre-transplant patients on Wednesdays and post-transplant patients on Fridays. Thankfully, there was some flexibility somewhere in this crazy mess (or mishegoss) called waiting for a liver transplant.

Hey, baby, what's your type? A little history of anti-HCV therapy

In the fight against Hepatitis C, there has been some very exciting new developments. I receive daily news updates about all of the activities going on in pharma/biotech in the field, including several [expensive] acquisitions by big pharma just to have access to the new Hepatitis C drugs in development. There are several new classes of therapies that either just were approved or should in the next few years that are considered direct acting antivirals. As usual, it is incredible frustrating that these new drugs *in theory* would benefit my father, however the timing could not be worse as he needed those therapies a few years ago and now it's too late--well, sort of.

Viral life cycle and direct acting antiviral  targets.
http://hepatitiscnewdrugs.blogspot.com/2012/01/direct-acting-antivirals-for-treatment.html



Hepatitis C has been identified for a couple of decades now with plenty of research done towards a cure, however the drugs that came-out in the 1990s were not very effective and came with a lot of side effects as I briefly mention in one of my first posts.

Pause

I certainly do a lot of kvetching. Well, I did title my blog as a fair warning to readers. But, yes, a lot of complaining still. I realize that.

Tonight I left my apartment and noticed a strong smoke smell as soon as I shut my door. My first instinct was that a unit in my building was on fire--that smell was so strong in the hallway with 3 doors and a flight of stairs between me and the street that I assumed it had to be my building. I practically ran outside with my heart racing. I started thinking about where important documents and what treasured items I would take out of the house if I had to run back in to take anything out. As soon as I went through the final door to the street, it was obvious there was a terrible fire brewing--and it was not my building.

A fire is currently still blazing around the corner from my house. It started over three hours ago and there were flames coming out of the building when I first saw it about an hour after Hoboken Police Department was already on the scene. It was such a gut-wrenching site--I stared in shock for a solid 5 minutes. There were 5 fire trucks on the scene and another fire truck was driving down the street from Elizabeth (a town that's really not that close in fire terms) once I started walking away. There were dozens of shocked people staring like me at the horrific site. The smoke burned my nostrils and eyes and I was a block away.

http://hoboken.patch.com/articles/building-evacuated-after-three-alarm-fire-on-washington-street#photo-9149561

I'm Batman!

No matter where I am or what I am doing, I feel like I have an alter ego these days. My (internal dialog) mantra last week was "I'm Batman!" anytime I couldn't rationalize a particular situation.

http://trailers.apple.com/trailers/wb/batman_begins/trailer/


People at work have no idea what's going on with me and my family. I prefer that it stays that way, however it is so odd to have so much going on in my head as well as the daily phone calls, emails, and occasional trips where I'm missing work. I know plenty of colleagues wonder what I'm up to and make (incorrect) assumptions. Part of me wants to tell everyone the whole story--have a little sympathy before more judgements are made about my occasional run down the hall to get into a conference room for a personal call or a missed couple days of work without talking about where I went or why I'm so exhausted and low-energy these days.

Medical Education: Hepatic Encephalopathy

The liver is an amazing organ when it is working properly. It is the largest and heaviest internal organ. According to wikipedia--a fantastic source of medical information, I know, especially to all of the medical and lab professionals out there--it is thought to be responsible for ~500 separate functions in the body. It is important in many types of protein synthesis, all sorts of metabolic cycles (e.g. carbohydrates and lipids), produces blood coagulation factors, stores such substances like vitamin D and iron, and breaks down toxic substances (many of you know that about drinking alcohol, for example).

Bottom line: when you have a failing liver, you will have a lot of different problems to look forward to.

It was clear a few years ago that Dad started to have trouble breaking down toxic substances. Again, Dad never really drank, so this is not an issue about alcohol. Or drugs--he doesn't do that either. The liver plays a key role in converting ammonia to urea. Ammonia (NH3) is the product of oxidative deamidation reactions. The reaction is part of the breakdown process of amino acids (they are the building blocks of proteins, for the non-scientists). To humans, ammonia is toxic even in small amounts. In a healthy person, ammonia is converted to urea via the urea cycle and then excreted from the kidneys. When someone has end-stage liver disease, they could potentially have a build-up of ammonia levels. This is not good.

http://smmhc.adam.com/content.aspx?productId=39&pid=1&gid=000372

Preparing for a Roller Coaster

I have loved roller coasters since I was born. Literally. There are stories of me crying from my stroller when I couldn't go on the bigger rides at various theme parks when I was barely old enough to talk. The day that I was tall enough to go on Space Mountain for the first time was one of the highlights of my life. And now I am on the ultimate emotional roller coaster: Dad waiting on the liver transplant list.

I have to say, like any other stressful situation, you can never truly be prepared. I have been through some tough times with my parents, yet the past month has been something I have never experienced before. Some days I'm feeling hopeful (even excited!), other days completely terrified, and others completely exhausted. I explained in my last post a little about how the national transplant list works, but this process is painful. Period.

The past week has been about as extreme of a roller coaster I have ever been on.

What's the score? The Road to Indianapolis

Yeah--this post title sounds like the 2011-2012 season of the NY Giants. It is sooooooo not about the NY Giants. Actually, since they made the Superbowl they made my life a total nightmare potentially. For now, let me get back to the real topic I intended to kvetch about now: our country's liver transplant allocation process.

I'm sure folks are perplexed about why this story is taking place in Indianapolis. Why doesn't Dad just get a liver transplant in Southern California where he lives? How does the liver transplant process work, anyway?

About three years ago Dad was told that his liver was deteriorating and he needed to start thinking about getting on a liver transplant list. How tough can that be, especially since your doctors are telling you that you need a liver transplant? He has good insurance, there is a medical need, and Dad has no other major health conditions or any unhealthy habits (smoking, drinking, drugs, etc). The process is easy, right?  Like so many things in this family, it is far from easy, except in this case Dad is in the same boat as about 16,000 other people. 


http://optn.transplant.hrsa.gov/

In order for someone in the US to be considered for an organ transplant, first they have to have their physician refer them to a transplant center. Three years ago, Dad was referred to UCLA liver transplant center by the local GI in town. If you look on the UCLA liver transplant website (click here for link), it seems like the ideal opportunity for Dad: they have the most active program in the world and handle the more complicated cases. Dad went through the [ridiculously complicated and long] process of getting on the transplant list and was officially listed in the Summer of 2009 at UCLA. Hooray!

Social Experiments

Between the complications from advanced liver disease, side effects from the long list of drugs, and the bleakness that comes with being extremely sick in a strange and cold place while waiting for a liver transplant, Dad has not been up for leaving the hotel room. During my 3 day visit with him last weekend, we spent a good chunk of time tracking medication dosing and trying to control the symptoms that are relentless. We didn't get out much, but when we did, I had a very interesting [interesting not in a good way] experience that I'm still trying to understand. More on that later.

One positive social aspect of the weekend was taking advantage of our cell phones to talk to concerned family members and using FaceTime. Technology is amazing. 10 years ago I began using a Motorola clunker of a cell phone sparingly and today I don't have a home phone line and we can FaceTime! Dad and I FaceTime-d with my husband a few times throughout the weekend to check on his progress of cleaning our house while I was away (joking! well, sort of...). My husband is always good for helping lighten the mood and injecting a few jokes into the conversation. Also, early on Saturday morning we 'met' my friend's 8-month old daughter for the first time from Florida. Aside from the fact that it adds 10 pounds to your face and it is generally not flattering, FaceTime is awesome!


This is at the airport, but a typical scene throughout Indianapolis right now

We dared to venture out of the hotel on Monday. After waiting out another bought of nausea, we took advantage of my rental car and drove around Indianapolis in the afternoon. We drove all around downtown Indianapolis and could not escape the preparations for the Superbowl. The football stadium is in the heart of the city (which is really only a few square blocks in total), so there's a very compact area buzzing with construction vehicles, Superbowl banners, and in-progress tents.

Medical Education: Variceal Bleeding

I have done some intense Google searching over the past several years about liver disease, and yet I still am frequently learning something new. Usually, I learn something whenever Dad has a new or more severe side effect from his cirrhosis. Of course, that means more Googling. I can certainly just ask Dad about most of these questions that I have, but it's so much more satisfying to see the pictures and read the various definitions and statistics for yourself when you are not a doctor and of my generation, right?

In January of 2010, Dad was hospitalized. Again. This was not the second time he was hospitalized in his life, only the second time mentioned in this blog. It was the second or third time he was hospitalized for variceal bleeding and when I really started to learn more about the topic.


Note: This picture is not entirely accurate in Dad's case as he has no spleen.


For the record, I am losing count of specific hospital stays for two reasons:
1. Both of my parents have been hospitalized about two dozen times in my lifetime for a barrage of reasons, so without a forum like this it really is hard to keep track. I am currently wondering why I didn't start something like this much earlier.
2. As mentioned in a previous post, Dad checks himself out of the hospital right away-- regardless of how sick he is--so the details of each hospital visit becomes blurred.

Let's get back back on topic.

Life's Not Fair

I suppose this blog is meant to talk about Dad's current situation, therefore it would seem that his liver condition defines him. Like so many other people with life-threatening conditions, that is far from the truth. In fact, it's hard to reconcile that someone that I have always looked-up to is in this terrible position through no fault of his own with so much out of his (and my) control. [Yes, friends, I am a control freak. I know.]

It's not fair!


OK, I got that out of my system. For now.



http://iamlegendcrossfit.blogspot.com/2011/02/when-lifes-not-fair-get-over-it.html

Once In A Lifetime

Not only has my yoga instructor played the Talking Heads song Once In A Lifetime recently in his classes and it always gets stuck in my head, but it seems to have such an appropriate line:

"You may ask yourself, well, 'how did I get here?' "

Well, how did we get here?

It starts with a story from 1978 that takes place in Simi Valley, California.

Welcome to Kvetching

Let the kvetching begin!

Welcome to my blog that will serve as an opportunity for me to inform my family and friends while venting about life. First-time blogger with over 30 years experience in kvetching, I am planning to talk about stories of past and present, especially related to my father.

What makes my father so special? That will be obvious if I dedicate enough posts to him, but he is an amazing person. Unfortunately, he also has--as he has dubbed it many, many times--"my mazel": an appropriately sarcastic Yiddish phrase he has used describing his own poor luck.

On New Year's Day, Dad made the big move to Indianapolis to officially begin waiting for his liver transplant there. Why Indianapolis? Why a liver transplant? There are plenty of topics to be covered in later posts. I'm assuming this will be a relatively serious blog, because topics such as organ transplants tend to be heavy. Also, with my Dad's mazel, a lot of stories in the past have been...well...fercockt. However, with a lot of positive thoughts, I am hoping that the future brings much better mazel to Dad, giving new meaning to "my mazel".

With that, I am officially beginning the public venting sessions....