Thoughts on National Kidney Month

We are at the end of National Kidney Month. Hopefully, this month, each one of us took this opportunity to give special attention to our kidneys. 

Early detection and treatment, especially for those in the high-risk group, is very important. These steps can slow down or prevent kidney disease. High-risk groups include those with high blood pressure, diabetes, and obesity. Even smokers are part of this high-risk group.  According to the National Kidney Foundation website, “chronic kidney disease affects 26 million Americans--1 in 9--and millions more are at risk.”  Kidney disease is common and harmful, but treatable.

If you are part of this group, do not hesitate to ask your primary doctor to test your kidneys in your next physical. The usual tests are a blood pressure test, blood test for kidney function, and a urine test for protein and albumin in the urine. If you do not have a primary doctor, the National Kidney Foundation has a Kidney Early Evaluation Program that offers free screenings for those at risk.

Watch out for early warning signs. Have your blood pressure checked regularly, especially if you have a history of hypertension in your family. If this is caught early, your blood pressure may be fixed by having a healthy diet, exercise, or if needed medication. 

Another sign is unexpected fast weight gain – one of my early warning signs. This usually indicates fluid retention.  In a span of a year, I gained almost 20 pounds! In retrospect, I probably should have gone to the doctor sooner than later, instead of trying to lose the weight.

Prevention is also very important. You can take care of your kidneys by enjoying healthy food, and regular exercise, and maintaining a healthy weight.  

By keeping these tips in mind, you can maintain healthy kidneys, not just during National Kidney Month, but all of the time.

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!

Frustrations: Patient-Physician Communication During the Digital Age

I have been exceedingly frustrated with the Transplant Clinic. Over the last two weeks, my blood pressure has rose and is now exceedingly high (180/90), and I have gained 7 pounds since the transplant (about 5 pounds since my weight normalized).  I tried to wear my fat jeans yesterday and it was not comfortable. These doctors do not realize how much work I’ve done to lose 2 pounds and now I’ve gained 7 and can’t fit in my good clothes. I am supposed to return to work in 9 days and if I can’t wear my work clothes, how am I supposed to do that. It is extremely frustrating.

As of early Saturday morning, we did not receive any meaningful response to our issues on the blood pressure and unexpected weight gain. The last response that we did receive was a prescription for medication that I had told the hospital that I am allergic to. My husband, and also the pharmacist at Kaiser, already called them several times, only for them to promise to call at the end of the day. But no calls came. We had to raise hell to get some sort of feedback. Seems that the clinic does not access the medical records in their own hospital. I am also stuck with a transplant coordinator that does not seem to enjoy communicating on the phone – I feel rushed every time I talk to her.  I’d be less frustrated if I can talk to a doctor, perhaps a cardiologist, and have them figure out the issue with my BP.  Instead, I feel like I am in a guessing game.

I have been very frustrated to the point that I have asked my husband to be the one to speak wirh them going forward. With almost a week of dealing with them, he is also getting frustrated. 

Without any reasonable response, I began my own investigation and unleashed my inner Nancy Drew (or Jessica Fletcher). I am thinking that the blood pressure increase may be due to fluid retention, which could partially explain the weight gain. I have searched the Internet to find some possible answers and found some possibilities. It could be some swelling (edema) from the surgery or the anti-rejection drugs may be causing my abdomen to swell.  I have not discounted the possibility that I am gaining real weight due to my new diet and exercise routine – but I don’t think that explains all 7 pounds and that soon.

I really-really wish that the doctors and nurses would provide more transparency. If I could discover possible answers on the net (granted, it took me two or three hours), then surely they could provide me with such information. After all, they have years of experience on this.

In this age where health information is just a Google search away, I don’t think that our health care providers can just say that “what you’re experiencing is normal,” and not provide an explanation. Patients are more educated about their condition. They are going into their doctor visits with a number of questions based on what they found on WebMD or similar sites, credible or not. Our health care providers need to realize that they will not be treated like the “man behind the curtains” anymore; they need to explain the condition thoroughly, respond to any questions that the patient may have, and debunk any false information that may have been read on the internet.

Also, patients are still patients. We’re scared. Chances are this is the first time that we’ve encountered a serious medical situation (as an example, it’s not everyday where I get a kidney transplant).  Anxiety is one of the side effects of the anti-rejection drugs. I wonder though, that if there were specific, reliable, and timely communication between the doctor or nurse and the patient, that this anxiety could be avoided. At the very least, it could be greatly minimized.

I am expecting that my and my husband’s questions will be answered in my visit with them tomorrow. Here’s to my anxiety being relieved.

On writing

Now that I am still recovering and am not supposed to exert myself as much, I have some time to write. Right now, it helps me fill time and get used to semi-working; otherwise, I’ll just sleep and watch TV all day.

I’ve been updating my blog fairly regularly; actually, more so immediately after I was discharged. Now, since I am trying to move more, I am still trying to post at least once a week and not slack off. Still, I don’t want it to feel like work, since the most important thing right now is to focus on recovery and not work, even if it is for yourself

The Social Worker at UC Davis said that most transplant-recipients do not remember the challenges they experienced immediately after surgery – all they remember were the good times. I want to remember so I can look back and can appreciate the transplant even more. It also helps me deal with stressful weeks like last one's.

I think of my blog as my journal. When (or if, given last week) I am finally feeling better and back to doing my normal activities, I want to look at the journey that I made from dialysis to transplant to full-recovery. In fact, just a few days ago, I read my posts from when I was in dialysis, and reading them again made me cry. I've experienced a lot since then and have gone a long way; it made me appreciate where I am now. Unfortunately, the journey is not quite over yet. I realized how important this blog is to me, especially when I have challenging times. Of course, sometimes when I am having a bad day, that is when I am not in the mood to write.

One of the unexpected side effects is that my blog and tweets provide me with support from folks who have witnessed or experienced dialysis and dealing with kidney disease. This community has been really helpful, since this is all new territory. It makes me feel that I am not alone. I am hoping that my blog and tweets are also helpful to others who are going through a similar experience.

Until next post.

#BadDay

I woke up this morning and as usual, I weighed myself. 151 lbs - I was surprised and very concerned. That meant a five-pound gain in nine days. I called the transplant coordinator about this a couple of days ago and they did not seem to be concerned, but no one is explaining why I am gaining weight. I feel that no one is really concerned and consider that this is normal. It was the start of a bad day.

I know I am gaining fluid. I told the doctors that I have not been urinating as much, and I have been drinking about 8-10 glasses per day. I feel that I am bloated and retaining fluid, but no one seems to care.

The last time this happened I gained 19 lbs. I attributed it to not exercising enough and an unhealthy diet (although I felt I was eating well). So I adjusted my diet, exercised as much my work and personal life allowed, and after a significant weight gain, I was diagnosed with Chronic Kidney Disease, Stage 4. Now, you can see why I am frustrated that everyone is just shrugging it off. This seems to be a replay of what happened six years ago.

I called U.C. Davis this morning and was very upset. Somehow, they were more concerned about my anxiety than my kidneys and recommended that I go to the ER. If they are worried about my anxiety, why can't they tell me more about my kidneys? They suggested for me to go to the labs today and get a kidney panel done and possibly a kidney ultrasound via my local nephrologist.

I will not get the lab results until perhaps tomorrow. The ultrasound is not until Monday afternoon, which means a weekend of anxiety. As much as I try to get back to a normal routine, I actually don't have one at this point that does not involve recovery. In fact, I woke up today and did not even know what day it was. I think its inevitable that my weekend will not be a happy or productive one.

The one thing good about dialysis is you see a nurse every other day. They can gauge how you are doing and what adjustments are needed. Now, it's all new territory. Also, since the doctors are now only seeing me once a month, it's difficult to know how well or bad I am doing.

Worse thing is I cannot talk to someone who can share with me what is going on and also sympathetic to what I am feeling. I had that in dialysis, but now, I do not have that luxury. Everyone is seems to have abandoned me. Except for my husband, a few friends, and the nurses and doctors in the clinics, I've have not spoken to anyone else since I've returning home from the hospital.

Like most things, I guess I will just do this on my own. Hoping for good lab results this weekend. Fingers crossed.

Adjustments and Anxiety

I am somewhat on pins and needles today. With the rise of my blood pressure this week, an accidental hit on my new kidney spot, and to top it off, starting our tax preparation, it was a pretty stressful day.

I am hoping that this anxiety is normal. After all, one does not experience a kidney transplant everyday. I find myself very protective of it, much like a mom protecting her new baby. I embrace a pillow every time Meow is around to prevent her from jumping on me, wear a mask and gloves when I go to my check-ups and my weekly trips to the labs, watch my potassium, and the list seems to go on. Any little change is stressful: I always ask myself if the new kidney is still working or did I do something wrong? Sometimes, today included, I feel that it was better when I was on dialysis.

Hubby always reminds me that the stress and anxiety is somewhat counterproductive, maybe more harmful to the new kidneys. While I agree in concept, I am finding it difficult to remain calm and centered. He also points out that we were both used to the routine and diet with dialysis; major surgery and a big change like this will surely require adjustment.

Hopefully, tomorrow will be better. My meditation project starts tomorrow, and even if I meditate for five minutes each day, it may help calm me down.

Also, in hindsight, maybe we should have our taxes done by H&R Block this year.

Back in the Hospital

I went back to UC Davis Hospital today to remove my kidney stent. It should be a minor procedure and not take longer than 15 minutes. However, I was still feeling a little bit of anxiety. I think this was primarily a result of reading about the procedure on the web and seeing what a stent looks like. Or perhaps, it was because the last time I was there, the surgeons cut me open, and the incision still hurts a bit.

We were asked to check in at 7:30 am (which means we need to leave the house at between 5:30 and 6:00 am). No solid food after 11 pm the evening before, not even my morning medication, and no liquids after 5:30. That meant I'll be hungry all morning.

The procedure was not until 9:30 in the morning, but they needed to check me in, go through pre-op prep, insert an IV, then finally, pump me up with sleepy juice (anesthesia).

While in pre-op, I met 2 nurses, the surgeon (who also did my transplant, which was reassuring), the anesthesiologist, and the urologist (who will be doing the actual procedure). The nurses and the  anesthesiologist went through my medications and when I took them, what I ate and when, and what I am allergic to. I was concerned about the pain. They assured me that I will only be conscious enough to move from the gurney to the operating table -- I will be sedated and will not remember anything.

It's game time! They gave me the anesthesia via IV. After that, all I remember is my saying "I'm getting sleepy." My next memory is a nurse saying "breathe deeper." The procedure was done.  I really did not remember anything. Well, maybe except the fact that I am hungry... and still sleepy.

After I was discharged, I had my meds, a granola bar, and a caramel coffee frappe. I forgot that I am not supposed to have any calcium within two hours of my medications -- I was still too groggy so I was not sure what I was doing. Oh well, we'll make up for it this weekend.

Then I took another nap in the car: one of many today. Hope I can sleep tonight.

One Foot in Front of the Other – Part II

As part of my recovery, I’ve been asked to walk daily. For those following me at my tweets at twitter, you know that at first, I thought I was supposed to walk for only 10 minutes a day. Looking at my discharge orders, I was shocked to see that I was not walking as much; it is supposed to be 10 minutes for three times a day. Whoops!

A portion of my Daily Walk

I guess that this is consistent with the “Let’s Move Program” which recommends physical activity for 30 minutes for adults. Got to get in the program. It is actually about the same amount of exercise I used to get during my dialysis days (I exercised more on the days that I did not go to dialysis).

I have been walking around our condo complex. I used to walk only about 75% of the perimeter, but now I have to increase the distance. Just in case something happens, Hubby does not want me to go outside of the complex yet. Also, even though I am in the complex, I carry my cell phone, just in case. I walk about three to four laps, twice a day. It’s 0.8 of a mile, and it takes me about 18-20 minutes.

My first goal is to walk without pain. The incision still hurts a bit but not enough to stop me from walking, and I still have some lingering pains outside of the incision related to the surgery. Once the pain disappears, I am hoping that I can get back to my old pace; 55 minutes for about 3 miles.

Then I will begin training for the Kidney Walk.  Wish me luck.

BTW, check out my original post on walking.

Vindication - Hopefully

Hurray! My potassium is now 5.0 – thanks to a reduced dose of Tacrolimus and a low potassium diet. It did increase slightly from Monday’s lab results by 0.1, but my nephrologist said that the difference is not significant enough to be of concern.

I am hoping that with the reduced Tacrolimus, my potassium will continue to lower. For now, I have been advised to maintain a low potassium diet – that means forgoing my beloved tomatoes, avocados, and bananas. My cereal now has low potassium almond milk with 1 teaspoon of sliced almonds. At least, I can have Honey Bunches of Oats - until I have a chance to check the potassium content. Today, I had a half a bagel with only cream cheese – I miss having tomatoes and avocado on it. That is one of my guilty pleasures.

Balanced diet? Some phosphorus, Some potassium

My frustration is that dairy, which is high in phosphorus, is also high in potassium.  Ice cream is the ultimate guilty pleasure for me. I couldn’t have ice cream when I was on dialysis; I had to settle for a sorbet when I wanted something cold for dessert, and I missed ice cream’s creaminess and sweetness. When the dietician recommended that I have a huge ice cream sundae, we went ahead and indulged in some ice cream bars and Haagen Daz. The dietician still recommends that I continue with my ice cream habit, until my phosphorus rises; unfortunately, it’s decreasing again!

At least, my potassium is now within normal range, but still on the high side. Hopefully, with a semi-balanced diet, I can tackle both Hyperkalemia, Hypophosphatemia, and any more Latin that they throw at me. Or is that Greek?

Hubby thinks that the answer lies within peanut butter. I don't think he meant Peanut Butter Ice Cream.

Until my next lab results!