Walk On

“To grow, to discover, we need involvement which is something I experience everyday, sometimes good, sometimes frustrating.”

- Bruce Lee

Feeling down this week.  There is a situation in my hula group with one of the newer students, and I think her behavior will force me to quit the group. I am deeply saddened and extremely angry with this. I love dancing hula, and I have been in this group for more than five years. To leave because someone is uncivil and disrespectful is disappointing.

This situation has caused a lot of stress and agony.  My blood pressure has been elevated and have not been sleeping very well. I have been very sad, angry, and moody as a result of this.This week, only after two days of crying, anger, meditation, and introspection, I have finally returned to my happy normal self.

In my introspection, moving on may be the best move for me. If one is in a negative situation, the best defense is almost always to walk away.  Some may think that it is running away, but I interpret this as taking the high road, avoiding a truly destructive situation, and not stooping down to their level. As someone who is only had a kidney transplant less than six months ago, having a positive attitude is important.  I feel that given my priorities, it is not worth it to attempt to continue going to a place where I regularly experience stress, especially if it is an extra-curricular activity. As much as I love my teacher and most of my hula sisters, I have a new kidney to protect, and weekly stress and frustration will not be beneficial to it and my overall health. 

I still have other activities to enjoy, and will continue dancing hula, whether it is on my own or with a new group. As Bruce Lee had said, “Walk on”.

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.

Relief: Update from my Last Follow-up Visit

My husband and I had an excellent visit with my nephrologist at the Transplant Clinic this week. The doctor gave me a check-up, and then we spent the remaining time of my visit addressing my concerns. He probably spent twice as much time with me than normal, and I am very grateful for it.

Here are the highlights:

·       The high blood pressure may be due to Renal Artery Stenosis or the narrowing of the renal artery. In this case, it may be due to the way my grafted artery, now grafted to a new kidney, is healing (To simplify: it could be the result of the actual transplant procedure).  The doctor assured me that it is not something that I did or caused by any cholesterol build-up. We will be having an ultrasound next week to determine if it is indeed stenosis.

·       The variations in my creatinine are normal. Creatinine is a waste product in the blood, and creatinine level is one of the measures of kidney health. For someone like me, even though it increased by 0.15 points, it should be okay. The doctor also said that I should ignore the standard range of less than 1.11, because this applies to people who did not get a kidney transplant. For me, I should not be concerned as long as my creatinine is less than 1.50.

·       Unfortunately, the cause of weight gain is unknown. My doctor said that since my weight has been fluctuating over the last two years, the weight gain is probably normal. They said I should be concerned if I gain more than 10 pounds. In retrospect, when I was on dialysis, my weight fluctuated from 66.8 to 70 kilograms (about 147-154 pounds), more if we really had a great weekend in Monterey or the California Wine Country. I would think that this is my normal range. Hopefully, once my health stabilizes, my weight would settle in as well. I will still keep an eye on it.

Please keep in mind that these conditions only apply to me. Each patient is different and has circumstances unique to that person. For anyone else, I hope this will serve only as a clue to what you are experiencing, but consult your doctor for the actual diagnosis. I guess that is what makes Medicine so interesting and challenging: it’s not like engineering where everything is exact and precise. It really is more like an art.

I mentioned to him that I would not have been as concerned if their documentation (see image for reference) did not state the signs of kidney rejection include fast weight gain (more than four pounds in a week) and an increase in creatinine. Increasing blood pressure is not a good sign either, because that can impact kidney function (My husband later explained that the documentation is generic and meant to reflect a broad patient audience). The doctor said that they might need to change, update their documentation. Lastly, my anxiety would probably have been reduced if we had more frequent visits; the doctor remedied that by scheduling our next visit in two weeks.

Here’s to better days ahead!

Search for Holy Grail (or why is my blood pressure so high)

My blood pressure has been extremely extraordinarily high lately (220+/100). A lot of people have been surprised that I am still walking around with a BP like that.

It all started when we stopped the Amlodipine. Unknowingly, that drug has been causing some significant fluid retention. And I thought I was just getting fat. Back in November, when we doubled the dosage (because my BP was 170/90 then - still high), my ankles started swelling up. Worse case, my BP did not drop; I think it went higher.

It has been a quest for new blood pressure medications since then. Most of these drugs have names that sound like they were crafted from the mountains of Mordor: Doxysasin, Teraxosin, etc. I am hoping that Gandalf will come and fix my BP for me. I am already soooo pissed off that my BP is sky-high (and that absolutely does not help).

I hope my nephrologist fixes the situation soon. He is going to have me do an electrocardiogram to see what other meds I can handle. I am already on three BP-regulating drugs (four, if you count my dizzy pill).

The most frustrating thing about this ordeal is now I cannot even enjoy my activities. Walking from the parking lot to my desk is tough. I get tired easily and dizzy doing aikido. We have not even gone skiing since the end of January.

The good thing about this ordeal (if there is a bright side) is I have lost the fluid weight. For the first time, in a long time, I am below 160 lbs! Yey!

Now, let's just try to prevent a stroke.