Labs Are Back

Sorry it took so long to post the latest Lab results. I’ve had a busy week and don’t feel too good myself. Some kinda head cold thing kickin’ my butt for over a week now.

Anyway, the labs are back and they look surprisingly good! The proteinuria has dropped to its lowest level since May 2004. The Total Protein is 3186. Keep in mind the ‘normal’ level is supposed to be <150, so we have a long way to go, but this improvement is without any treatment for the past 5 months due to the low WBC Lori had.

At this point we are hopeful that this downward trend will continue and eventually the Nephritis will go into remission. We have yet to hear from the Nephrologist in Gainesville.  I will give them a call next week if I don’t hear from them on Monday.

The Low White Blood Cell count has improved also. The count is now at 3.3. 3.8 is the low end of the normal range, so we’re almost there. We’re still not sure what caused the severe drop to begin with. We’ll probably never know for sure. If it were the chemo it should have ‘fixed’ itself quite some time ago (according to Dr. Tumlin). Perhaps with everything going on it just took some extra time to build itself back up. Keep your fingers crossed it keeps going up.

Lori’s energy level is about the same as it has been since she got her support hose and revised her meds. She has been able to do some activities, followed by some serious naps. Kinda like the old days. Oh well, at least once again she is able to do something.

We haven’t filled the prescription for the new steroid that is supposed to treat the POTS. I think Lori is afraid of going on another steroid. The side effects are similar to Prednisone but according to Dr. Kuo they shouldn’t be quite as bad. Everything I have found out about the drug says the side effects will be as bad. I’m sure Lori has found the same information. I don’t know if that’s why Lori hasn’t filled her prescription or not, but my guess is that’s it.

Tomorrow is Halloween. Some of you know what that means, but for those of you who don’t it is when we start decorating for Christmas. Last year Lori could not do anything. It was a pretty depressing time. Here is the post I did last year. The Christmas Miracle I asked for never happened. Maybe this year. Lori is going to try (a little at a time) to do the decorating again. I know what ever she does will be wonderful.

I update you on her progress later in the week.

Low Energy Level . . . Still

The energy from last weekend never came back this weekend. Lori did manage to muster up the strength to sit outside for a few hours on Friday and Saturday. It was a neighborhood garage sale. We had a few big things we wanted to get rid of. Time spent for dollars earned it was not worth it, but we did get rid of a couple of things.

After we finished Friday (around 2:00) Lori went right to sleep. With the exception of about an hour for dinner she slept until 7:30 the next morning. Saturday we finished around 12:00. Lori didn’t fall asleep but she stayed on the couch until after dinner. Then it was off to bed till this morning.

Today, even with her stockings on she never had any energy. Big difference from last week.

Tomorrow we go for some more blood work. I’ll post all of the results in a couple of days, including the latest protein numbers.

The good news is Lori’s spirits are much better than they were a couple of weeks ago. So, were simply back to just taking things one day at a time.

Hit the Wall

On Monday I posted “the combination of the support hose and the decrease in the blood pressure medicine seemed to be having some effect”. This is still true however the downside is Lori is back to ‘crashing’ hard.

This weekend she did more than she has done in months. By the end of each day she was really tired and usually fell asleep right away. The next day she would wake up feeling ok. She would put on her stockings and would get a bit of energy again. But now, after almost 5 good days (4 ½ really) she has hit the wall.

Tuesday evening she really looked like she was wilting fast. We decided she wouldn’t try to do anything on Wednesday. She wasn’t even planning on wearing her stockings. Just planned on a day of rest. Hopefully feeling better by the end of the day.

It turned out a bit more than that. She was hardly able to do anything yesterday. With the exception of a couple of phone calls she slept all day. She tried to do a few things in her room and just ended up falling asleep in her chair. Around 7:00 she woke up and asked about dinner. After a quick sandwich she went back to the couch, watched a little TV, and went to bed. There was no sparkle in her eyes at all.

This morning she doesn’t look any better. When I asked how she felt she said “worse than yesterday”. Hopefully she will perk up in a little while and not feel as miserable as she did yesterday.

Maybe she overdid it this weekend, or maybe she is getting a little bug. Whatever the case I hope she gets some energy back again soon.

POTS Questions and More Treatment Options Discussed With Dr. Kuo

Yesterday we had our 1st follow up visit with Dr. Kuo since she diagnosed Lori with POTS. Dr Kuo was very anxious to find out what our Nephrologist had to say. Unfortunately we had to tell her that we did not go last week. We explained the situation. She understood and said she wants to know what the new Doctor has to say when we see him.

Dr. Kuo was pleased with the slight improvement in Lori’s condition. She reminded us again that it would take a while to ‘play’ with the medicine until we get the maximum benefit with the least amount of distress to other conditions.

We asked her if the POTS is related to or could be caused by Lupus. She said that people with Auto Immune Diseases such as Lupus are more apt to develop an Autonomic Dysfunction such as POTS. While the two aren’t necessarily related they can go hand in hand.

We discussed the compression stockings. Lori legs really hurt when she takes the stockings off. Dr. Kuo said that was not unusual and should go away as she gets used to the stockings. She also told us Lori should wear the stockings as much as possible.

One of our questions was whether or not we should see a neurologist for treatment. She said there really was no need for it. There are only a couple of treatment options available. The bottom line is you have to raise blood pressure. She felt another Doctor would not necessarily help the situation.

She added a new medicine to Lori’s treatment. It’s called Florinef. Unfortunately it is another Steroid. Many of the side effects are similar to Prednisone, but not as bad according to Dr. Kuo. She is starting Lori at the lowest dose available (0.1mg). We are supposed to call her back in 1 week and she will discuss raising the dose at that time, depending on Lori’s results that week.

The last topic was just how high should we let Lori’s blood pressure get. The goal, according to Dr. Kuo, is a Systolic reading of less than 140 with a Diastolic reading less than 90. We are to monitor the results ourselves and report to Dr. Kuo either at our follow up visit or immediately if Lori’s BP goes too high.

On a side not I have had a couple of phone calls with the new Nephrologist’s office in Gainesville. The ‘new patient’ process goes something like this. Get the referral from your doctor and send any pertinent information to their office where someone will review it with the Doctor. At that time IF the Doctor decides to take you on as a patient they will call you to set the appointment. The secretary at Dr. Peditto’s office said this is happening more frequently lately. As of yesterday we had sent them the referral sheet from Dr. Peditto and Dr. Tumlin’s latest office visit notes.

Today I received a call looking for a couple of more items. I put together a fax of 15 pages of lab results and test reports. I hope they have enough information to make a decision now.

Some Possible Relief?

The combination of the Support Hose and the decrease in the Blood Pressure Medicine seem to be having some effect. There have been a couple of days where Lori has been able to do things. In fact on Friday she went to Wal*Mart by herself. With the use of their cart she was able to "shop" for over 2 hours. She only bought a few things but I know it felt good for her to get out on her own.

Yesterday we weren't to a couple of stores together and she did OK. Today we went to her Mom and Dad's house for lunch. Lori was very happy that she felt well enough to go over there. Once we got home she was really wiped out and went to sleep, but it was nice for her while it lasted.

The biggest drawback so far to the stockings is how bad Lori's legs hurt after she takes them off. Hopefully that will not last.

We go to Dr Kuo on Tuesday. I'll let you know how it goes.

POTS SUX

It has really been an emotional week. Since “the diagnosis” things have not been good. It took a couple of days for Lori before it really sunk in. I think she just built this wall around her, refusing to let anything in. This POTS thing is really bad from what we have read. There are people who have it much worse that Lori, but that’s hardly good news. A lot of the people who have it treat it with high sodium, high protein type diets. It is still freaking us out that the treatment for one disease makes the other one worse!

We bought a new Blood Pressure machine. It is one of the wrist types. So far it seems to be working quite well. A lot easier to use and gets readings the other one wouldn’t. The craziest reading so far was a BP of 85/55 with a heart rate of 163. Unreal stuff goin on here!!!

We also went out and found her stockings last week. She ended up having to go to the full pantyhose type (to the waist). The thigh high would have cut in to her thighs too much and/or would keep falling down. The frellin things cost $110.00. Now that we know what to get we have checked online and can get them for about $20.00 less.

Lori did notice a difference when she wears her stockings. They really make her legs hurt when she takes them off though. She wore them for two days and then kept them off for two. Today she had them back on again. She is sleeping now, wasn’t doing too good this evening. For some reason she got an upset stomach and threw up about an hour ago. Not sure what that is from. She did say she had a bit of a headache earlier.

We have an appointment with Dr Peditto on Thursday. I’m curious as to what she is going to think of this latest “condition”. She has always given us good advice in the past. We’ll see what happens on Thursday.

As I said it has been an emotional week. In addition to dealing with the POTS diagnosis we made the decision not to go to Atlanta to see Dr. Tumlin any more. If you keep up with this blog you know Dr. Tumlin is moving his practice to North Carolina. We just don’t have the resources to fly up to see him and it is just not practical to drive. 2 tickets and a hotel for one night will cost around $500.00. Throw in some meals, airport parking, and a rental car (or a handful of Taxi trips) and you’re easily looking at $650.00 plus the two days downtime. I wish we could do it, but we just can’t.

So, now we get to find a new nephrologist. This has been weighing heavily on Lori. We liked and respected Dr. Tumlin so much. The one good thing is he was about to start a new treatment (the chemo did not work). We have not started it yet so starting with a new Doctor at this time would be good. There is a large Nephrology group in Tampa that we are going to look into. Hopefully they will work out.

Lori also heard from Jim at the Spa this week. He is now officially in charge of the Spa (congrats Jim if you are reading this). Lori REALLY misses working. It was great to talk to Jim but it also made Lori sad. The addition of POTS has added to the reality that Lori may never be able to have a regular job again. It was another blow to Lori’s emotional well being.

On Sunday Lori received a call from her Mom. She told Lori that she and Lori’s Dad were going to sell their condo and move to Kingsport TN. They have both mentioned this before, but this time was different. They had made an appointment with their realtor. It was more than just talk now. This really pained Lori. It really means a lot knowing that her Mom and Dad are near by. If something were to happen to them OR to Lori I know she would want to be close. It bothers her that she can’t visit with them as much as she would like to. It is just too hard on her. She can hardly take a shower by herself and many days she could use help just getting dressed. (I’m getting very good at blow drying her hair). Even though she can’t visit it is very comforting knowing they are there. She was crushed thinking of them leaving.

Yesterday we found out that their plan is to stay in our area (if they can find the right house that is). That brightened up Lori’s day a lot to hear that. Now we just have to hope they can find something they can be happy with and still be close.

Combine all of the above with all of the conditions, medicines, diseases, doctors, etc. Lori goes through and no wonder she had a really bad week. I have always wondered how much she can go through before it starts to get to her. I think I know now. She has had some “feel sorry for yourself” days before, but nothing like this. She is simply tired of it all. She actually appeared to give up any hope of ever getting well enough to lead a semi normal life. There was nothing I could do for her except listen and promise to be there by her side through it all.

After many hours of talking and crying she was feeling a little better (emotionally) today. I know she is still feeling overwhelmed (you can’t fool me Lori). Maybe talking to Dr. Peditto will be a good thing for her. I hope the next couple of days don’t bring too much extra “stuff” for her to deal with.

She just woke up and came in here where I am. It looks like her “Lupus Rash” is acting up again. . . . . . . and away we go!

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.

Back From Vacation, Back to the Couch.

The day's since our return from vacation have been very un-eventful. In the week we have been back Lori has been able to pick up the family room once, made herself lunch once, and mustered up the energy to do one load of laundry.

It has been really difficult for her. She has been able to navigate the stairs ok in the morning and again at night, but has had a great deal of pain in her hips. It is really hard watching her try to do things.

She is much better at asking for help than she was in the past. I'm really glad to see that. I know it hurts her though to have to ask for almost everything to be done for her.

We went for her Tilt Table Test last week. See the "Cardiologist Visit - Results Are In" post for more results on that one. Let's just say - not good - and leave it at that for now.

The bright spot of the week was spending time with the boys (as usual). Ricky and Jason's birthday was this week. On Saturday they came over. We went to dinner and watched a movie. Mike was able to get the day off to join us. It was a really fatiguing day for her, but worth it.

The next day Jay, Ricky, & I went to the Bucs game. Lori stayed home and read her book. A friend of hers brought over a casserole dish on Thursday, so Lori was able to put it in the oven when we left the game. When we got home I finished up the dinner and we ate. It was a good way to get a nice dinner without any effort on our part.

The theme of the week was "Lot's of Naps". Lori wanted to do a few things that she never was able to get done. Oh Well. Maybe next week.