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.

#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.