In Appreciation of all Organ Donors

April was National Donate Life Month. In appreciation to all those who are registered as an organ donor and all of the organ donors, living or deceased, I am dedicating this post.

Through a registered donor, I was able to get a kidney transplant earlier this year. I feel very fortunate to have a new lease on life. I have never won anything in my life, but after that I feel that I won the ultimate jackpot. While on dialysis, my career, weekly activities, and travel had necessarily taken a backseat to my dialysis treatments. But now, and for the first time in a long time, I am actually thinking about the future, not just living day–by-day. Now, I am able to spend more time doing the things that I enjoy and not going to the dialysis center three days a week, four hours at a time. I am even considering taking night classes to improve my career. What a gift!

This month, I’ve learned that in this country alone, more than 100,000 people are waiting for an organ transplant. About 92,000 are waiting for kidneys, 1,600 are waiting for livers, and 3,000 need hearts. The wait is long: I waited almost five years for a kidney – seemed even longer. Thousands of people die while waiting: about 18 people per day in the US alone. Some like Moy Sweetman in Australia just give up.

There is much progress in getting artificial organs. At Massachusetts General Hospital, researchers have successfully created a functioning rat kidney in the laboratory (from a New York Post article). Here in California, UCSF is leading a team of scientists from all over the country to make use of Silicon Valley technology to create an artificial kidney: something like a small dialysis machine implanted inside a human body (from the Mercury News). However, such progress is years away and may not provide something viable for thousands of people who are currently waiting for a transplant. For now, it is only through these donors’ involvement that people with end-stage organ failure will be able to survive. The need is greater than ever!

So, a big well-deserved thank you to all who have given a relative, a friend, a neighbor, or even a stranger the gift of life.

If you have not registered yet, I hope that you will consider registering as an organ donor. One organ donor can change as many as eight lives. For more information and to sign-up, please visit www.organdonor.gov. Help make a difference.

Back to Work - Full time!

As of last week, I went back to work full-time. I had mixed feelings going back to full-time, since I had become used to and somewhat enjoyed my medical break routine: I walked in the morning, prepared and ate lunch, napped, and then walked again. I would even have the television on in the background to listen to Chopped, Kitchen Nightmares or CNN’s Wolf Blitzer. As I mentioned in one of my tweets this week, I have memorized most of the commercials – at least, those on CNN, BBC, and The Food Network (just ask my husband!).

I had planned to work from home all week, but my project required me to spend some time in the office. It was a welcome change to being home, but I was concerned about the drive and the ability to stay awake (no more naps!). My plan was to enjoy a phosphorus-caffeine-boost (translation: a soy coffee latte) midday to keep me up and about. An added bonus was being able to get new nail polish and a new CD this week – from an actual store!

Actually, things went quite well this week. I went into the office twice and got to interact, catch-up, and laugh with my friends at work. I was also able to both start and complete my project. The only casualties were a cancelled meeting (so I could complete my assignment), my jeans, and now a sore back. My tummy was still a bit bloated, so my jeans were really tight while I sat down.  Bummer, but it gives me a chance to wear (cute) dresses more and shop for accessories. The sore back may be due to sitting and not moving around very much. I guess my body is rebelling from sitting 8 hours a day in the same chair.

Next week is another full workweek. I am again hoping that I can work from home most of the days. However, as has been said before, the best laid plans often go astray. I probably should rest up!

In Retrospect (or After The Angioplasty)

I am happy to report that after my renal angioplasty last Friday, things seem to be back on track. At the risk of sharing too much information (or TMI), I am so happy to be peeing again. The last two weeks I had extreme fluid retention and was barely urinating. It’s very scary for someone who just had a kidney transplant, because a lack of urinating and fluid retention is often a red flag of transplant rejection. To add to that, fast and unusual weight gain can be traumatic to anyone, particularly a woman – real weight or not.

I am writing this post not only to report success, but also to take a look back at the entire process. I am not complaining, but hoping that something can be corrected. I have been extremely frustrated, mostly rightfully so, and have been angry at times.

Here’s some background for those not familiar to my previous posts: I reported an increase in blood pressure almost a month ago.  The nephrologist and transplant coordinator said that it was normal. I also told them that I was gaining about a pound a day, and that I suspected that the gain was mostly retention of fluid. In spite of my saying that the weight gain seemed unusual, they said that it too was normal.

After almost ten pounds of extra weight and some 50 points higher on my blood pressure’s systolic number, along with two weeks of anxiety, an ultrasound was ordered. The prognosis: there is a possibility of a narrowing of the renal artery (or stenosis). It can only be confirmed through an angiogram and, if necessary, repaired (probably) by angioplasty and, perhaps stenting.  That brings us to now…

My frustration is that if this situation was caught earlier, it may have prevented my blood pressure becoming extremely elevated and my weight out of control.  I do not understand why it is that when a patient reports weight gain and increasing blood pressure, why can’t our health care partners automatically recommend a simple ultrasound to rule in or out Renal Stenosis. In one of my readings, I found an article that mentioned that transplant renal artery stenosis typically presents itself 3–24 months after surgery, although it can present at any stage after transplant (Note: access to the article may require set-up of a free account). Also, up to 12% of transplant recipients with hypertension (like myself) may have functionally significant Transplant Renal Arterial Stenosis. Last but not least, if this was caught earlier, I would have been able to handle it during my medical leave, rather than my having to take time away from my work; it really does not look very good in your first week back at work.

I felt that I was somewhat stereotyped. Just because a woman complains about weight gain does not necessarily indicate that she needs to go on a diet or engage in more exercise.

As it stands, it seems that “appropriate care” is up to the patient; the patient must be persistent with the physicians and nurses so that action happens. I do believe that we need to partner with our health care providers to ensure the best of care, and that is what we tried to do. It should be, however, a “two-way street” with much more communication from our health care partners taking place. As an example, I am not sure if there actually was a medical reason behind the angiogram delay. If so, that should be explained to the patient. Fortunately, I’ve found that my nephrologist has been explaining things more to me recently, and has even shared with me pictures from my angiogram. I am very pleased with this change and hope that it continues. Perhaps doing one’s homework and persistence really do pay off.

As a final note: I am happy to report that I have already lost about seven pounds since the angioplasty surgery. I also received some meaningful parameters from my doctor as to when to seek advice about something perceived serious. I do still hope that I will lose all the remaining weight that I gained, without dieting. I know that this may not be realistic, but one can always hope.

Back to Work

I’m back to my day job, at least part-time this week. I am slowly introducing parts of my “normal” life back into my daily routine.  

I am a bit nervous coming back to work since I have been out for couple of months. To add to that, I will be working on a completely different project, so it will feel like an entirely new job.

My doctor and I planned on having this first week as a “warm-up” for when I return to full-time.  I really wanted to ease into things so I am doing my best to resist the temptation to work a full day. My manager is flexible enough to adjust my work hours.  I find it really easy to be enthusiastic and work a full day the first day, only to deal with getting too worn out after.  In fact, that happened on my second day. I worked for five and a half hours, only to be extremely tired that evening.

Also, as part of my first week, I mostly sat at my desk at home, instead of working from the couch. This should give me a chance to build up my energy to sit-up for a full day. Each day, I worked a bit more. I found that working kept my mind off my blood pressure, fluid retention, and weight gain, which may be mentally and physically healthier for me.  

My daily walks are now a treat, rather than a chore. At the end of the work day and after being indoors all day, I love being outdoors and enjoying the fresh air, sights, and sounds.

The next couple of weeks should be interesting. I suspect that I will not be able to blog as much or as long. In the coming months, I am hoping that I can slowly integrate the more fun things of my life, like going back to hula and aikido. Still, we’re taking it one step at a time.