It is amazing how fast time goes. Sixteen months ago today this all started for me when Daniel and Sophie were born and my kidneys went kaput. I am also just three weeks shy of my 6 month transplant anniversary which is a major milestone. Most days I almost forget there is this aspect of my life and history. I was reminded yesterday when I met a resident in clinic (where I was being a doctor, not a patient) who had heard my story and told me how much they had all been pulling for me, even though they didn’t know me. It was so nice, although I confess at first I didn’t realize what she was talking about.
I don’t identify myself by this medical event although I suspect people think of it when they look at me, especially those who I don’t see often. This condition doesn’t define me; those of you with chronic diseases or who have had major acute illnesses may relate to this although I would be interested in hearing if you have a different perspective. I was thinking about this very issue recently when I saw an acquaintance whose family had suffered a catastrophic event. I think about it every time I see him, and I wonder if he thinks about it all the time (I am sure he does) but if he also wants to live a normal life without having it be top of mind 24/7. It is something to ponder and consider when talking to folks with major medical issues, especially for clinicians.
Brutus is doing pretty good overall although creatinine was a little high this week. I will get it rechecked on Friday. I blame it on OH State losing in the NCAA. Sarah, what happened to your boys? Every time OH State loses my creatinine goes up. At 6 months, hopefully the prednisone will come down and I will drop off some of the other meds.
Kids are doing great, walking, chatting although not using real words yet, and getting in to everything! Thank god for child proofing. They are getting through their second batch of teeth and learning to use utensils (see photos of practicing using spoons with creamed spinach – NOT a good idea.) Daniel loves books and music, Sophie is my little adventurer – she loves flying high on the swings and being tossed around in the air. They love Bingley the dog and a favorite activity is throwing him the tennis ball and then break into peals of laughter when he chases it.
We are taking our first plane trip alone (i.e. just me and the kids) going to Minnesota for Passover. Should be interesting! I hope to see some of you when I am in town.
As I’ve mentioned before, I try to live my life without regret. But sometimes, that means having to leave some “what ifs….” on the table. When donating a kidney – the what ifs are numerous – what if a family member or sibling needs a kidney in the future? What if Lisa (or any recipient) rejects quickly? What if Lisa’s HUS comes back and it kills off the kidney (lovingly referred to as Brutus…)? What if something happens during surgery? What if I get diabetes or something else and I end up needing a kidney transplant? I’ve made my decisions about the kidney donation and decided the what ifs didn’t outweigh the potential benefits. Now, I’m faced with another “what if” and I can’t make a decision. I have a lazy eye. I’ve always had it, but it wasn’t glaringly obvious (pun intended) when I was young enough to fix it through eye exercises and an eye patch. Fortunately my left eye has always compensated for the right. But today, its official – my left eye sight is finally giving in to age. It seems that as humans move past 40, their vision begins to blur and we become nearsighted. Well, my left eye is finally at the point where it can’t compensate for both. The ophthalmologist says my right eye contributes very little to my overall vision. We’re talking a damn lazy eye! Anyway – the appointment was very eye opening (another poor pun). He asked me if I go to 3-D movies. I told him I’ve never sought them out because I don’t seem to “get them.” He said because it’s impossible for me to see 3-D. In 42 years and numerous eye appointments – NOBODY has ever told me that. But it certainly confirms why I’ve always believed 3D is a waste of money and why it’s so hard for me to even try to experience it. So, back to my dilemma. He said to help with my advancing age blurry vision problem – I could get reading glasses from the drug store. But, for me, they probably wouldn’t work well. But what he REALLY recommends is I get glasses, bifocals to be exact, and plan to wear them ALWAYS. Why? Because of a what if…. If anything happened to my left eye – I will be legally blind. Not legally blond. Legally blind. I will not be able to drive, nor read, etc. My right eye just can’t do it. I really didn’t have long second thoughts about living with one kidney and those what ifs. (in addition to the above – there is the what if I want to join a gang and get shot in the abdomen, or what if I want to start playing ice hockey or tackle football?) But this what if – I’m not comfortable with. I won’t be able to use contacts – those won’t be protective. Sure, I’ve gone through 42 years and nearly 11 months without eye damage – but is the risk still worth it? I’ve always taken great comfort in being able to decline vision insurance on an annual basis – the ophthalmologist said I should reconsider that too. He was quite the smart ass.
Anyway – for those of you who thought I didn’t do a blog last week because I had gained weight – WRONG. I lost 0.6 pounds. Okay – not stellar – but still a loss and overall I’ve lost 7.2 pounds. I’ll weigh in again tomorrow. Not so confident this week…..
Last week, had the opportunity to chat with Harvey Mysel, founder and president of the Living Kidney Donors Network (www.lkdn.org). Harvey is a kidney recipient and now devotes his life to helping other recipients. We really had a fascinating discussion and I want to share a few points that really resonated for me.
1. People (patients) in kidney failure often don’t know their options for living donor transplant.
2. Our health system, quite simply, is not geared toward living donation and this is multi-faceted:
a. Physicians, by accepting their creed as doctors of medicine – first must do no harm. And while Lisa’s physicians’ goal was to help her, by taking a kidney for a live being (that’s me) they are actually doing me harm. I was (am) healthy – by undergoing surgery – they were risking my life and health in order to help another. That’s against their very basic principles.
b. Dialysis centers profit from people in kidney failure staying on dialysis. Their goals are not to get people OFF dialysis, but to treat them with dialysis. Educating dialysis patients about a transplant could hurt their profits.
c. Hospitals, most specifically transplant centers, certainly have incentive to help their established and even new patients receive a transplant – but only when that transplant occurs in their center. Sharing willing donors between hospitals is sharing with a competitor and potentially losing income.
d. Health insurers – it’s actually more cost effective for insurers to promote transplant. The costs of long-term dialysis and lost quality of life, productivity, poor health outcomes outweigh the costs of transplant.
This all just seems wrong! I have not hidden that my primary interest in this blog is to advocate for living donation, to eventually turn my experience into something that can help other donors or those considering donation – but good grief – people with kidney failure have some pretty steep battles to fight. One of my current frustrations is recognizing that there are thousands of people in the U.S. and the world in kidney failure. They don’t know all their options and our health care system just isn’t adequate nor incentivized to help them. I always thought being in health care was about helping people. I think we need to get back to those basics…..
Overall donation status update: I’ve mentioned in past posts that I periodically have discomfort along my incision – I don’t recall feeling any at all this week! As I’ve been losing weight, I’m noticing my tummy in that area is rather lumpy. Will have to keep watching that – I don’t want lumpy abs unless they are 6-pack! My quest to prevent diabetes and hypertension via weight loss continues. I lost another 3 pounds in my 2nd week in Weight Watchers. That earned me my first 5 lb star (and an overall total to date of -6.6 lbs). I am really pleased with that level of weight loss this week. I’m an emotional eater. I had a really crappy evening on Monday, and I didn’t turn to food. I re-directed and called a friend! For me, that’s a great success! More to come next week. In the meantime, think about what you might be able to do to help educate people on their health care options – don’t assume our system will be their advocate.
Today was my 1-week weigh-in at Weight Watchers. I lost 3.6 pounds! That’s almost 10% of what I want to lose. Sure, I’d love to lose 30 pounds in one-week – but I’m a real person, with a real life – thus will accept 3.6 and continue to work everyday to change my eating habits, turn up the notch on physical activity and get it done. I’ve started working with Gabby on jogging with me – that’s a bit problemmatic. She has 2 speeds – plodding and an all out sprint. However, I think she’s my best canine candidate. Brin, at 67 pounds is all muscle and I can foresee some desert face plants should I attempt that route. So, with that – I’m celebrating with pretzel sticks and looking forward to another week of trying new recipes and working hard to continue on my journey of preventing hypertension and diabetes. Anyone else have a success to share?
In reflecting on the last year, plus or minus a couple months, I can summarize this kidney donation gig in the following bullets:
1. Pondering getting my blood drawn to be tested as a possible match for Lisa
2. Actually getting tested and waiting for results (I actually still remember being really nervous when I told Lisa what I had done…)
3. Finding out I was a match. Not a perfect match but viable
4. Full steam ahead – tests, tests, and more tests to figure out if I was healthy enough
5. Being told the transplant team wanted to find a closer match (but I was also REALLY healthy and had nice looking kidneys!) Maybe I should use that with online dating: Normal outside, and darn good looking kidney
6. The waiting game, with Lisa periodically reminding me not to give my kidney to someone else (don’t interpret this as coercion, it actually got to be a joke. I didn’t exactly have people lining up hollering pick me, pick me!)
7. Disappointment and frustration for Lisa when her closer matches fell through and the dawning that I was “it” again
8. The final cross-match and wait for the transplant team to approve my donation
9. Full steam ahead – again – this time we actually scheduled a surgery date
10. Going on Atkins to lose as much weight as I could in 3 weeks. Note – this was not required for me, I was just trying to be proactive. I figured if I lost weight before surgery, and felt sufficiently like crap after surgery that I’d lose even more and actually be close to goal. I did, however, lose 9 pounds in 2 weeks on Atkins before I started to hate barn animals with great intensity.
13. Realization that not only was I not at goal weight, and didn’t feel like crap long enough to lose more weight – my plan to lose weight and hit my goal had failed.
14. Reminder that family has a diabetes history and I best get my arse in gear and start losing weight
So, to summarize – it’s been about 10 months of some pretty big highs and lows. Over the past month or so that I’ve been traveling more than normal and not always exercising nor eating nutritious, weight conscious foods – I’ve gained weight. I’m up about 10 pounds from pre-surgery. Three years ago, I lost 30 pounds on Weight Watchers. I’ve regained 15. Ouch. But now, it’s time to celebrate successes and focus again on being proud of my body. So from the above summary – my corresponding successes.
1. Getting the nerve to actually be tested.
2. Having numerous and I mean numerous vials of blood drawn.
3. Losing 9 pounds in 3 weeks.
4. Not chickening out of surgery when I was TOTALLY freaked out in pre-op.
5. Waking up from surgery and not killing anyone when I simply wanted some friggen’ ice.
6. Losing 12 pounds in 1-day – you have to love IV fluids just to see it happen!
7. Walking around the hospital floor in a hospital gown, dragging my IV.
8. Going to get real coffee in hospital cafeteria – in jammies (to id myself as a patient).
9. Removing myself from vicodan within 5 days of surgery. Because I really didn’t need it. Wahoo – pain threshold!
And probably the most important one since surgery – Joining Weight Watchers again and going to my first meeting last night. If you’ve never tried to lose weight or never been to such a thing – let me tell you – going in and getting weighed where someone else sees that number is HARD. It sucks. It’s all about facing the facts. And I didn’t want to face those facts, yet know I needed to. So, today is day 2 of weight watchers. I peed enough in my first 2 days to be very confident about my next weigh in. And I’ll let you know how that goes next week….