Happy New Year and ALS

Happy New Year!  Hard to believe that 2010 is almost over but i for one will not be sorry to see it go.  Please join me in a glass of champagne on new year’s eve drinking to a better 2011!  

I also wanted to send my good wishes to my father who was hospitalized early this morning for – wait for it – kidney problems.  He is at Abbott Northwestern in Minneapolis and sounds good – getting a bunch of tests and desperate to get out of there.  Hopefully he has just been too good taking his diuretics.  Water pills like Lasix make your kidneys pee out salt and water even if your body doesn’t have any to give.  It is essential for congestive heart failure  but can lead to difficult balancing between the heart, the body and the kidneys.  Truer words. 

I would also ask you to take a few seconds to read the info below from a colleague (Al Lewis for those of you in the health plan world) who is working to increase funding for research into Amyotrophic Lateral Sclerosis or ALS (also known as Lou Gerhig’s disease).  The wife of a dear friend has this terrible, progressive, debilitating disease.  There is no known cure.  This (along with HUS and TTP) is on my top 10 list of conditions not to get.  If you can take a minute to support this effort, i would appreciate it.  Happy New Year.  Lisa

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Subject: plz take 30 seconds (no money) to support ALS research in a unique and powerful way

Dear Friends of Al:

I am trying to raise money for ALS research, but I’m not asking you for money. All I am asking is that (for reasons described below) you go to www.whytheheck.com (my blog) and “like” the facebook fan page or put a comment on the blog itself, and then maybe forward this email as much as possible.

This free and fast simple step will help more than you could imagine as I try to get to 5000 “facebook fans” for my ALS advocacy project.

Some background: As a few of you know, I lost my second wife to ALS. (The whole story is on the blog now.) I would like to convince the Yankees to raise money for ALS research simply by selling Lou Gehrig #4 jerseys for maybe $100 apiece, and donating the profits to ALS research. Given the reaction from the 2100 people who have found my blog and “liked” the facebook page — and in many cases added their own stories of loss — the Yankees would sell a ton of ‘em.

This is the opposite of most fundraising efforts in that plenty of people are ready to contribute but they don’t have anyone to contribute to, yet.

The problem is that the Yankees don’t return emails from the general public. This is probably not because they are an Evil Empire as we Sox fans used to believe before we started signing all the free agents, but more likely because only about 0.0001% of those emails would contain anything worth reading. However, if I can get 5000 people in support of this idea, a PR person has agreed to approach them on our behalf.

The ironic thing is that we are not asking the Yankees for a favor. This is very much in their interest too. They’d have people all over the country wearing these jerseys, and almost everyone touched by ALS (about a million Americans have been touched somehow), would become Yankee fans. For instance, I would never wear a baseball jersey with someone’s name on it, and I HATE the Yankees, but both of those opinions would change overnight if they did this.

If you are one of the people touched by ALS, you could up your commitment to this worthy project by doing 1-4 other things too:

(1) Don’t just “like” the facebook page or the blog – put a comment on or add a photo or a remembrance;

(2) Write a polite note to dcarabello@yankees.com and tell him what a good idea you think this is;

(3) If you know any influential person in baseball or the sports media or New York media, forward this note to them;

(4) Many of you are in pharma — if you know of a project seeking ALS funding, send this to them;

(5) You could also listen to WBZ-AM 1030 January 3 in Boston between 9 PM and 10 PM at 617 254 1030 (I am doing an interview for this project and my book), or listen online at http://boston.cbslocal.com/ and call in when the ALS subject comes up.

That’s it. Although participation in this project should be its own reward, I would like to express my own gratitude in a unique way. Read the intro to my book at http://www.whytheheck.com/downloads/whytheheck-intro.pdf and if you like it and participate in the above project, you can have the entire book electronically, free. Just ask.

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Gifts

It’s Christmas evening, and after a very enjoyable day – I found myself pondering what my favorite gift had been this year. My day started with an early (and rather chilly) walk with Brin and Gabby. And I’m certainly blessed and thankful for the gifts that come with having pets (Bas and Kirby too!). After that walk, my friend Tim and I went over to Placitas to check out a hiking trail there. Another gift – the ability to move my legs, observe and enjoy the great outdoors with good conversation. Back home, and I rounded up Brin and Gabs and we headed north to my sister Kris’s. She was working today, so I took my dogs, her dogs, and her neighbor’s dog for a walk. I’m not sure why, but at my house Gabby needs to be on a leash – up there – she runs wild, but always circles back. Anyway, the dogs (all 5 of them) were acting like puppies today – the gift of joy and amusement from watching the dogs cavort! Kris and I then met up at our friend Deborah’s house for dinner and we exchanged gifts both at Deborah’s and back at Kris’s. I received many wonderful things from my friends and family and won’t bore you with the details – but is it wrong to be super excited about 3 pairs of smartwool socks? And of course the pictures of my nephews are super special! But in really pushing myself, while I LOVE everything I received today – it struck me that the gift with most meaning this year is life. And I think I’m finally getting (and yes, for being brilliant it sometimes takes me a while to catch on to the simple things….) what this kidney donation means to Lisa, her friends and family. Last year at this time, Lisa was grasping for life, something most of us take for granted. Many of us have other friends or family members who are sick or who have battled cancer or some other chronic illness; and most of us have suffered loss of a loved one. And I’m sure you wondered if there is anything you could do/could have done for that loved one – but most times we can’t do anything but be supportive, considerate and kind. I may have gone a bit beyond that this year – but am happy to say that Lisa is alive and I’m alive. And, if you are reading this – you my friend – are also alive. And that, I believe is the greatest gift we have each and every day. And on this Christmas night 2010 – it is that for which I am most thankful.

I subscribe to a daily email from gratefulness.org – one of the quotes received this past week: Take care of yourself, you never know when the world will need you. (Rabbi Hillel). As we all reflect on yet another holiday season, I think it’s important to realize that we are all needed in different ways….

I hope that everyone is having wonderful holidays in 2010. And I’m looking forward to a spectacular 2011!

Our Story on Air

For those of you local in Denver, Gloria Neal from CBS4 will be doing a story about Sarah and I and the gift of living kidney donation today.  Part I will run during the 5:00 news and will air around 5:12.  Part II will run during the 6:00 news around 6:12 pm.  Merry Christmas all and especially to Sarah.  Brutus gave me a little scare this past week with an elevation in my creatinine to 1.37 on Tuesday, but by Thursday he had settled down for the holidays to 1.18.  Happy Holidays!

Identity

We all have a way that we think of ourselves.  Growing up I was the smart one; as an adult I was the doctor who worked for a health care company and was pretty darn good at her job (at least I think I was).  All of a sudden this “event” happens and I am out of work for four months on STD (short-term disability for those of you who think that STD stands for something else) and I am the sick one, the one on dialysis, the one who needs help taking care of herself and her kids.  It really messes with your head.  Having a chronic disease, or illness, or frankly anything that brings you into frequent contact with the health care system has a way of completely taking over who you are and, if you are not careful, defining much of how you think about yourself and how others think about you. 

I realize part of this is my doing since I have been very open and transparent about my condition and my ups and downs.  I am hopeful that others can learn from my experience since I inherently like to teach.  In these days of HIPAA (the law that requires your doctor to have you sign a paper confirming that you have read their privacy policies,) it is much easier to keep medical issues private.  My friends were very careful to do this on my behalf in the early days until I was able to make the choice to be open and public.  So while I am glad that folks have benefited from my experience (I hope), I don’t want this experience to define who I am or what I am about.  I hate being a patient since, to me at least, “being a patient” implies a lack of control and a sense of powerless-ness.  I didn’t even realize I thought that until just this moment as I am writing this. 

There are ways to communicate to and about people with an acute illness, chronic diseases or other major health care need.  For example, my father is not a diabetic; he is a person with diabetes.  Cancer survivors have many things that define them of which their history with cancer is only one aspect.  It is very important that we remember this, both as friends and families, health care providers, payers, and fellow patients.  Patients are people, and while in the acute stage your disease or illness may consume your life, once things are back to normal, even a new normal, I at least do get a little weary of people asking me  “how ARE you,” like it is more than a perfunctory question.  Not that the inquiry and sentiment is not appreciated, it is, and people have been SO wonderful, but it does make it hard to forget and feel normal. 

Needing a transplant puts you in a different category since you need to publicize your story in hopes of finding a living donor.  I spread my story far and wide looking for a donor.  It was a numbers game –and I was a bit embarrassed at first since it seemed weak to me to be in this situation.  I had so many friends (and family, although because of my condition they were not allowed to donate in case it was genetic) who volunteered but since the closer the match the better we wanted a large pool of potential donors.   I will let Sarah talk about how it changes your identity to be willing to donate a kidney.  To allow a surgeon to remove a part of you to give to someone else has to change how you think about yourself.  It certainly changes how others think about you (although again I am biased).  It really amazes me that not only my friends but acquaintances and perfect strangers were willing to donate to me.  I think as a society for the most part we are incredibly generous to people in need.  But that is a story for a different day.  Happy Holidays everyone.  To quote Margaret and Helen, I mean it.  Really.

On the fence

On the fence

As you might recall, Gloria Neal with CBS Channel 4 in Denver is working on a story about Living Kidney Donation. Once complete and aired, we hope to provide a link on this blog so people across the country can watch it. I finished up my part of the interview with Gloria on Monday. She asked me a question that I don’t think I did justice to in my response. The question was: “with my experience behind me, what advice or guidance would I give to someone considering donation, but on the fence?” I think I rather diverted my response, because my first reaction is not all that positive. In my opinion, someone “on the fence” isn’t ready to donate. And if you are going to go through living donation – e.g. surgery, removal of an organ – you need to be ready and committed to following through. So, I’d like to provide a bit more perspective to someone considering donation.
1. Be informed/educated about the entire process. Too often in our health care system, as patients we allow the system to take care of us vs. being empowered to take care of ourselves and protect ourselves. I’m not saying the system is evil – but that as a potential patient (remember this is voluntary) that your expectations are realistic. You need to ask questions. You should not assume that if you haven’t read something or been told something that it’s not in your best interest knowing. If you have a question, and there is no dumb question – ask it! As an example, while I don’t have any plans to get pregnant, I still had a question – what if – I got a wild hair and decided I did indeed want a child? Is it possible with one kidney? Would I have additional risks – other than being over 40 years old? (the answer is kidney donation does not prevent pregnancy. Women with one kidney are perfectly able to have children. The one caution –which I read about – is that there will be special attention paid to pregnancy related hypertension). You are donating a part of your body, it is your responsibility to ask questions and protect yourself, do not assume the health care system will do it for you.
2. Really, really think hard about your motivation and be sure it’s pure. Is your motivation in-line with your beliefs and value system? If you can, picture yourself in the period post donation – do you think you’ll regret your decision? What is nudging you to action? I’ve mentioned this before, but for me – I needed to know that my kidney was going to someone I could trust would do everything she could to keep it. Some things are outside of the control of the recipient and the health care system, but for me – I’ve taken care of my kidney, I only wanted to give it to someone who would do the same. It’s really important to identify your motivation and confirm it’s consistent with your beliefs. The entire process takes strength and courage and you’ll need that from within yourself.
3. Verify that you have the support of your family. While I spoke to the most important family members to get their reactions, I didn’t learn until after surgery that my donation was causing some stress and anxiety and it wasn’t likely to go away. At that point, I could do nothing. I don’t know that had I known I would have done anything different. But I will admit to anger. So, I had physical support post-donation, but not sure I had the emotional support I expected. Fortunately, as I mentioned previously, I’m stubborn. I chose a course of action, I stuck with it and I have no regrets. I can’t control others. But as a potential donor, will your family support your decision? How will you react/cope if they don’t?
4. If you know the recipient, have a discussion about what your donation means to them and what they expect from you. You both need to be on the same page. This goes back to the blog about the psychological aspects of donation and post-surgery implications. Things change post-surgery. You’ve done what you decided to do. It’s now up to the recipient. For altruistic donors, this is still an area you need to ponder. What if your recipient never wants to know you? What if you never have contact? Are you okay with your kidney being out there in the world and not knowing? I’ve aired my views on this topic and my expectations in a past blog – no need to make anyone cry again.
5. Do you have the support of your employer? Provided you aren’t independently wealthy or retired early… can you take at least 2 weeks off? Do you have the vacation time to cover your time off? Or sick time, or other kind of leave? If you do – GREAT! But if not, you need to think about the financial implications of taking time off or using short-term disability which doesn’t typically pay at 100%. And keep in mind, that while most people seem to return to desk-type jobs at about 2 weeks post-surgery – this isn’t true of everyone. Consider worse case scenarios where you might be out longer. Do you have enough money saved to cover all of your obligations?
6. What expenses will be covered by the recipient? Remember, you cannot accept money for your donation. However, your basic needs right prior to surgery (if you have to travel to the surgery location), health care costs, etc. might be covered by the recipient’s insurance. In our case – Lisa and I both have Anthem Blue Cross Blue Shield. However, other than some mistakes by the medical laboratory, all of my expenses were covered by Lisa’s policy. My travel to and from Denver, my hotel the night before surgery and all care provided to me in the hospital and leading up to surgery. Lisa was also very generous and paid for my mom and sister to get to Denver and home as well. I don’t know if her policy would have covered my expenses in the days post-surgery when I needed to stay in Denver. I stayed with friends. But, that is something to consider – while I only asked 3 transplant centers, all wanted the donor in the town of surgery for a week post-surgery.

There are probably some additional considerations I’ve missed, and I’ll add those when I think of them. For those living donors following this blog – if you have anything you’d like to add to this discussion, please let me know and I’ll be glad to put up an additional blog on this subject. Perhaps the most important aspect of this and most important consideration is how will your sacrifice benefit another? How will that make you feel? What could that decision do to change your life?

I have no regrets. I’m super pleased that Brutus is doing well with Lisa and it has given her hope. Hope for a life off dialysis. Hope for a long future with Daniel, Sophie and Mr. Bingley.

Hello World

The title of a Lady Antebellum song, and a good description of how I feel since surgery. First, a public comment on Lisa’s Love, Luck, Loss and God post. This may seem rather naïve, but I never realized how much we actually had in common and how much this journey has changed us in similar ways. Maybe it’s a function of being ambitious and successful in our chosen profession, but like Lisa – I hate asking for help. I hate admitting any kind of weakness. And am darn right stubborn about it. But where I feel lucky is that I had the ability to help. And help in a way that really challenged me. This journey has made me find incredible strength to just get tested to see if I was a match, and then the courage to go through with it. Even though Lisa gave me an out nearly every week ( and sometimes daily!). Like Lisa commented – I also agree that everything happens for a reason and there are lessons to be learned from every experience. This journey has pushed me out of my safety zone. Out of the comfort zone that I had established; sometimes into the center of attention where I don’t like to be. I’m a middle child – I’m used to being the quiet one that can pretty much skate through situations without causing commotion. So this experience has been incredible incentive to open up, to share my feelings, to share this experience, and to even acknowledge my weaknesses. Now then, the God thing. Lisa and I actually talked about the number of people who have commented or sent notes about how they were praying for us. It’s fascinating to me that so many people expressed, publicly, their belief in prayer. And I know that those prayers were answered. I don’t think that God promises us a life full of roses, but I do believe we’re only challenged with what we can handle and learn from. I actually pray/talk to God when I’m out walking the dogs. That’s my worship place – the great outdoors. I prayed before I had my labwork done to see if I was a match – at that point it was more about living through a blood draw. And I asked for the courage to go through with the transplant should I indeed match. During the period that the transplant center was looking for a closer match, I prayed that they made the right decision, and if I was still needed that I would still have that strength to go through with it. And of course, my prayers were always for the best outcome. I feel incredibly blessed to have had this experience and now know I need to take advantage of all live has to offer. So Hello World – my old friend. I’m looking forward finding my next challenge and just embracing each and every day.
I don’t have much of a medical update. As I mentioned in my last post, we’ve been watching my blood pressure. I’m not particularly scientific with my observations – and accept the best reading on any given day. That might be cheating…. But right now it’s in normal range. I’ve been doing a little research on the topic of hypertension and will post that in the near future because it’s really important for EVERYONE not just a person with one kidney (or Lisa’s collection). My IV site issue seems to have resolved. My torso scarring is looking a lot more like the picture Lisa posted a few weeks ago. My weight loss is a bit stalled due to the holidays and that I like to bake. It’s essential to taste test all products! But my activity levels remain high and overall, I still feel pretty darn good. On days when I’m tired, I really don’t know that I can attribute that to kidney donation. It’s more likely due to a grey cat that thinks that 4:30 a.m. is a splendid time to be fed…..