July 23, 2021

A strange new medical problem have I!

By John Guy LaPlante

Yes I do. Now in my 93rd year on this planet, I have now developed a brand new medical problem.

It is called lymphedema.

It is not a disease. Not a sickness. It is best described as a condition.

Well, to me that “condition” has become a very definite problem.

I had never heard of it. I saw it happening but I thought it was a minor thing. It was annoying. It was unsightly and for sure I was increasingly concerned about it.

But no pain. Absolutely no pain.

I had thought it would simply take care of itself, like a cold, hahaha, and simply go away.

I will bet that you have never heard of it. And have never known anybody to have it.

But after I have explained it to you, please do let me know if you have some knowledge of it. But not personal knowledge!

I wouldn’t wish this on anybody.

I have just spent several hours online researching it.

It turns out a lot of people have it, men as well as women, and very often it has happened to people who have had cancer of some kind.

I have never had cancer of any kind.

It can affect people in different ways. Sometimes on one leg and one arm.

It affects me on both legs from right below my knees down to my very feet.

And I have just spent a month going to treatments at a lymphedema clinic in San Luis Obispo, California.

That’s the fair-sized city just down the road from my home here in Morro Bay.

The clinic occupies a small house, surely somebody’s home at one time. I’ve been there half a dozen times, always driven there by my daughter Monique or son-in-law David.

I have checked. There is no other such clinic within driving distance for miles around.

It seems to have a staff of four people, three of them trained, certified lymphedema therapists, plus an office gal.

I have traveled and lived in many places, here in the USA and in many places around the world.

It is the first time that I have become aware of such a strange problem, or of such a clinic.

Lymphedema has become such a personal worry that I have put aside my life story that I have been writing up of late — taking a break, so to speak.

I saw what was happening to me.

There was a terrific swelling of my legs, from my upper feet to my knees. Yes, it was happening to both legs, not one or the other. And equally.

It is most easily described as a huge ballooning. More than twice normal size.

When I was dressed up, this ballooning was concealed by my trousers.

I did not like it. There was no pain. Absolutely no pain. I thought that it would pass. And it took me quite a while to realize that this ballooning was the result of a buildup of fluid. What kind of fluid, I had no idea.

And the whole point of the treatment is to get rid of this fluid.

This is done by squeezing it out of your body. To this day I do not know how it leaves the body. There is no natural orifice for it. This has still not been explained to me.

The only thing that seems to make sense is that it is squeezed out like urine.

This will be my first question to my therapist on my next visit, which would be four days from now.

Actually, the condition was brought to my attention by my cardiologist. She is a very fine cardiologist.

I have a very slight heart problem. Not unusual for a person of my age. I was advised to go to her as a preventive, to forestall the need big time of truly needing an expert cardiologist.

She is the one who referred me to the clinic. In fact, the clinic sends her detailed reports of its findings and of any improvement I am making.

The condition is covered by Medicare, fortunately, but not of any items used to treat it, which can include medications and items of clothing.

In fact, I was given information on how to contact my local representatives in Congress and have them protest that this is an oversight not to be tolerated.

My therapist that first time was Jamie. About 30, I’d say. Very sweet. It quickly impressed me that she knew what she was doing.

Yes, David had driven me. As I’ve reported to you, I’ve given up my license to drive after more than 70 years at the wheel. A very, very sad day that was for me.

Never killed anybody, never injured anybody.

I am so, so fortunate to have David helping me in so many ways as I do my daughter Monique.

I am giving my 10-year-old Hyundai Sonata to my grandson Thomas in Florida, who needs a better car.

It barely has 70,000 miles on it and looks great.

Now back to my lymphedema problem.

My therapist Jamie had taken me into a small treatment room. David got to see everything she did. He’s retired, by the way.

I wanted him to see it all and I got my daughter Monique to take time off to come and see for herself as well.

Jamie had me lay on my back on a treatment table. She adjusted it to the right height for herself and for me. She had a long roller made of very dense plastic, about a foot in diameter and four feet long. She had me raise my legs and placed the roller below my knees. She spent several minutes examining my problem.

And told me that she was going to work to get rid of this fluid by wrapping the affected part of my legs with very long compression tapes.

They are made of a thick white fabric. About four inches wide and many, many yards long.

She started above my toes. Kept wrapping the band around my ankle and kept wrapping it up to just below my knees, one layer upon another, locking it in place by using a piece of very heavy tape. Then sent me home.

And that was it.

“I want you to come back in days for another treatment,” she told me.

I already have a hard time walking.

I use a 3-sided “walker”. I am sure you have seen such.

I use it with David at my side to assist me if necessary.

Sometimes I get along by using not one but two canes!

Just getting me into the front passenger seat of his car and buckling me in takes a major effort. As it did when we got back to Morro Bay and he had to assist me to get into my home.

I was exhausted. It was only three in the afternoon but I had been told to go right to bed and lie on my back with my legs positioned higher than my heart level. That was extremely important.

I have an adjustable hospital bed, which turned out to be a great assist.

David made sure that I was all set, said goodbye, and told me he would come back and assist me in the morning.

How fortunate I was to have him helping me!

I wasn’t accustomed to sleeping like that, flat on my back. I usually sleep on my left side. But finally, I fell asleep.

But then a great pain developed in my lower right leg. It was wrapped so tightly there that at one point it was cutting into me. As if by a knife.

Just my right leg. Not my left one.

What to do?! What to do?!

Somehow, I don’t know how, I managed to lower my hospital bed to its normal, not-in-use position, sit up on the side of the bed, and reach down to my right foot, and somehow release that huge band of tape that Jamie had so carefully put on.

What an enormous relief.

I was very, very worried. Finally, finally managed to fall asleep.

Since then I have been to the clinic six times.

I have met another of its therapists. There seem to be only three.

His name is Hasheem. About 45.

He used the very same technique that Jamie did. But he has a very special gift. He enjoys talking, talking, talking as he works, explaining in detail the right way and the wrong way of applying those compression bands.

Now they have shifted from the bands to extremely tight compression stockings of the perfect size for me. So, so compressive that they are very difficult to put on me.

And the last time I went, he told me they have done everything they can do for me. It’s up to me now to have the discipline to do this as long as necessary, perhaps even for the rest of my life.

Wow!

That was a shocking thought, of course. Meaning that I might have it to the very end of my days.

No need to come back for another office visit, I was told. Only to come back if I have more questions or want to have my compression technique tuned up. They were straightforward about that and I admired that.

Since then I have had an appointment with my cardiologist. She told me she had been receiving detailed reports about my progress from the clinic and was very pleased.

By the way, if all this arouses your curiosity, do go online and check out “lymphedema.”

I have met a whole new world of information about it out there. I was amazed to see so much about it. How it affects people in different ways. Especially the photos. The photos are incredible. Beyond description

I have the condition in both legs. Well, some people have it in one leg and one arm, and there is no concealing it. And so many come down with it so much earlier in life.

I am so much better off than they are.

Obviously, very many people have a lymphedema problem.

I am just one of them. My lymphedema is far from cured.

I have no idea whether it will be a problem of a few days or a few weeks or a few months. Or for the rest of my life.

I have worked out a daily arrangement with my son-in-law David and my daughter Monique.

David is retired and Monique is still working.

They live 10 minutes from where I live.

Every morning he comes over to put on my compression stockings. I cannot do it because I cannot reach way down there and anyway I wouldn’t have the strength to adjust the stockings just right.

He has become an expert. He does that seven days a week for me.

As some of you know, I pedal a tricycle every day. Now electrified, meaning power-assisted, as you know. But it still requires some actual pedaling. This is very important to me because it is the only physical exercise that I get around to doing.

And my compression stockings must be adjusted just right. Otherwise, they cut into my legs as I pedal. David has become an expert at it.

Monique stops by on the way home from her office every day.

She removes the stockings, applies a therapeutic lotion to my legs, and freshens the stockings. No need to wear them in bed anymore.

This takes place 7 days a week, morning and night.

How very fortunate I am!

I do plan to keep you up to date.

I do intend to get back to my regular blogging. But I’ll give you an update if need be.

If you have lymphedema, or know someone who does, please tell me about it. That would interest me greatly.

Oh, I have not yet received a report from Medicare about this. It will be interesting to see how much the San Luis Obispo Lymphedema Clinic is receiving for its services.

Comments

  1. Yes, once you said lymphedema, I knew what you were talking about. It involves your lymphatic system which attributes to your edema around your ankles and legs, because your heart isn’t as strong as it used to be and cannot pump your blood as strongly, so much so that the veins don’t have that osmotic pressure to bring that fluid back to your heart to restart that process. Do you have to get a pacemaker, eventually? My grandfather had gotten a pace maker around age 80 and he walked everywhere, almost 4 miles a day, which I’ve heard 4 miles a day or 10,000 steps daily is good for your heart. He lived to 105 years old until Alzheimer’s (or a broken heart I feel since his son, my dad past a year before him and noone was allowed to tell him). My grandpa was stripping down naked at my mom’s and my aunt’s is what started concerning them, but I thought, “hey, you’re 105, you can do whatever you want” in my humble opinion!
    I know it might be too late to reverse this condition, so much so that you can try walking up to 4 miles a day. I love my FitBit watch, which is a pedometer, sleep monitor, meditation tool. So it counts my steps along with my iphone.
    I know those compression socks should help squeeze that juice back into your heart so your heart can pump it out toward your kidneys to excrete out excess fluids. Hopefully, those compression socks help you. Also elevate that leg when resting.

  2. Joan Perrone says

    Hi John, I like to decorate cakes, and make cake toppers for special occasions. One of my customers has bought several toppers from me. Her daughter is getting married in July, and she asked me to do a wedding cake topper. In the course of our texting, I found out that she has a number of illnesses, one of which is what you are experiencing. She has recently started going for treatments, so you are a little further along in the treatment than she is. She also has a number of other ailments (congestive heart failure, and several other conditions), so she is dealing with a lot of things going on with her body. It seems like it is something that you need to do over the long haul, and I know you can be determined when you need to be, so you will be doing well. You have never let anything keep you down. You are a fighter. You also have the intelligence to look things up to help you better understand what is going on and what you can do to help yourself. I pray that your legs will improve with the wearing of the compression stockings, and that you will be tooling around on your bike very soon. Love, Cousin Joan
    P.S. Note the change of my email address. Thanks.

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