Cardiologist Visit - Results Are In

Today we went to the Cardiologist (Doctor Kuo) to review the results of all of the tests she ordered. As usual we have some good results and some not so good results.

The Stress Test revealed “No Blockage”. Everything A-OK

The Holter Monitor confirmed the rapid heart rate we told them about but showed no other signs of acute heart disease.

Liver function test as well as the Thyroid test both came back “Normal”.

Most of the blood work came back just fine too. They did not do a WBC count so I don’t know where Lori’s white blood cells are at the moment.

The Tilt Table Test paralleled the results we produced when we did the “Orthostatic Vitals” test. When Lori stands up her heart starts racing while her blood pressure drops. One of the readings from their test was a blood pressure of 55/60, with a heart rate of 149 beats per minute. Lori was on the verge of passing out. I’m sure we had similar results however our “Walgreens Blood Pressure Monitor” doesn’t read properly at that level. This test was the “Bad Results” I mentioned earlier.

Lori now has a new condition to add to her lengthy list of diseases, syndromes, etc.

It is classified as a “Dysautonomia” disease, which is a disease that affects the autonomic nervous system. It is literally a dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. As Doctor Kuo explained to us your autonomic nervous system slows with age. In some elderly people it slows to a point where they have to stand slowly to keep from getting dizzy. This is a normal part of the aging process. What Lori has is not normal. Her autonomic system is “messed up”

The specific condition Lori has is called “Postural Orthostatic Tachycardia Syndrome”, or POTS.

POTS can be defined as:

1. A disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.


2. A condition of orthostatic intolerance in which change from the supine position to an upright position causes an abnormally high increase in heart rate.


3. Dr. Kuo defined it as “Lori’s reflex reaction to standing is not adequate”

POTS is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing. Lori's is typically right at 150 beats per minute or higher when she stands.

POTS is a chronic illness that can be debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease. Most patients will have to make some lifestyle adjustments to cope with this disorder.

HERE is a link to a great web site Doctor Kuo gave to us for any and all the information you need on the condition.

As far as what caused it . . . we’re not sure, we forgot to ask Doctor Kuo and she was not specific. From the research I did it could be a secondary condition to Lupus. There are other causes as well including trauma to the body (which could be associated to chemotherapy). From what I read today many people who have it can not pinpoint a cause. It is a disease that has not been recognized for very long therefore there are many unknowns. It was first identified as a syndrome only 15 years ago, in 1993.

Doctor Kuo said it is something that Lori will have to deal with for the rest of her life. There are no long term complications that the doctor is aware of other than the quality of life issue. The severity can change, even from day to day.

What do we do you ask? That is a problem. POTS can be very difficult to treat. The basic idea behind treatment is to raise your blood pressure. This is contraindicated to the treatment of Lori’s Kidneys.

Lori has been on two different blood pressure medicines for her kidney disease. According to everything we have learned for all of the Doctors over the last two years it is very important to keep your blood pressure under control in order to help alleviate some of the strain your kidneys go through each and every day. Now we are dealing with a disease that, in order to treat it, you have to raise your blood pressure. In order to treat one, you have to not treat the other.

Doctor Kuo has already warned us that it will take some time to get the balance just right. She has ordered Lori to stop one of the two blood pressure medicines. Also she has ordered that Lori no longer use her Diuretic. Next week we go up to Atlanta to see Doctor Tumlin. He is supposed to be revising Lori’s medicines to start treating the Nephritis again (it has been over four months since Lori’s last chemotherapy treatment due to the low white blood cell count). We will see what he has to say about the blood pressure medicine at that time.

The other treatment Doctor Kuo prescribed is a set of custom fitted thigh high support stockings. I’m sure they are very similar to those worn by people with circulation problems in their legs. We have a prescription for them. We just need to find a place to get them made.

Dr. Kuo said Lori may have to come off the blood pressure medicine completely. This would not be done anytime soon. There are other medicines that she can prescribe down the road if necessary. She does not want to do too much at once or we will not be able to tell what is working and/or what is not.

There are a few other things we are to do for treatment

One of them is to get Lori a shower seat. One of the worse things you can do is to stand in a hot shower. Eating different foods in a different pattern may help as well. More meals with smaller amounts are easier for your body to deal with. Lori also has to continue her 64oz of water per day regiment.

Doctor Kuo requested that we monitor Lori’s Blood Pressure frequently as well as her heart rate. If it gets too high we are to call her right away. If not, we go back for our next visit in two weeks.

For now, at least we know the cause of some of Lori’s severe fatigue problems. With the proper treatment she may get some of her quality of life back . . . as long as her Kidneys can hold out.