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.
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