OT August Chit Chat

[Cherie]

This summer heat is hitting me harder than usual. We do not have central air but I am fortunate to have a window Unit in the bedroom and and other in my office off the bedroom so I am essentially spending most of every day in a 12x18 area of the house. The pool room is too hot to be in because the air is hard to breathe even when I am in the cool water. I am retaining fluids in a way that I never have before (10-12 pounds on in a 48 hour period starting 2-3 days after intense diuretic use ...prescribed and planned by the doc I am seeing to manage BP who is VERY knowledgeable about MS and the autonomic issues that create this syndrome in some.) I am starting to become short of breath in the heat on exertion. Saw my Primary doc yesterday because he was concerned. My EKG has changed and the "voltage" is diminished in the rhythm so I am to have a Nuclear stress test and an Echo in the next week or so. He is concerned that I have early congestive heart failure which both my mother and her mother died from. Will keep you posted but suffice it to say it has been uncomfortable for the past couple of months and in that respect, I am glad I am not working much away from home.

Today was a diuretic day with three doses of different diuretics spaced throughout the day and potassium supplements 3x/day. Tomorrow will be another large dose of diuretic in the morning and 3 doses of prescription potassium and lots of dizziness and lightheadedness and nausea. but Sunday and Monday and Tuesday should be lovely before it starts to build all over again. My electrolytes are a mess. I see my neuro in less than 2 weeks and he , hopefully, will weigh in on this but will also likely order the next round of Rituxan infusions (which my PCP says is the only med I am on that can cause cardio toxicity.) This is part of what I was talking about when I said a few days ago that I was not in a good place.

Also the professional organization problems mentioned are growing and unfolding and I am part of a group of about 40 nurses who are trying to come up with ideas to fix and prevent and move on. That is a huge responsibility and honor and gives me a sense of purpose. There are a lot of young, idealistic nurses that are new to MS nursing who want to charge in and give ultimatums and that will not solve anything or help promote the growth of that field so I am a voice of experienced reason in that whole thing. I can still use prayers and positive thoughts for wisdom and discernment. Also wish I felt better physically.

Blessings all and have a good weekend.

[Pegakafarmgirl]

Hi,, Virginia,, sorry to hear of your brothers health problems,,hope all goes better for him,,Cherie I have no central air either,, we do what we have to do , to stay cool,,

Tomorrow we again go to another wedding {my best friends son} at the state park,, should be a good day..,,grandkids should be up,, riding horses and shooting guns,, its time to get ready for youth deer season,, in September,,.

weather is finally cooling down,, which is nice,, then it will probally heat up again,,,,,lol

oh and canning potatoes I think Linda asked,, cut them in chunk,, par/boil them,, drain,,, pack quart jars,, put fresh boiling water {with a 1/4 cup salt},,,water bath for 30 minutes,,

[agate]

Cherie, I seem to be one of those people with the autonomic issues you mentioned, and I've been tinkering with a diuretic for years. In the last 10-12 years the dosage has been stabilized but it took many years to get it right. I take potassium chloride (pills) and watch the potassium level closely. If it should start to dip, I start eating more potassium-rich food. I can often tell without a lab test if the potassium is going down because I'll start having palpitations but I get lab work done several times a year.

Went to the optician for new glasses on Monday. They'll be ready in a couple of weeks if I'm lucky. On the way home the paratransit system used a local taxi company. This happens sometimes, and it can be bad news. This time the driver was on time and pleasant enough but he was talking on his phone for the entire trip.. He had one of those headpieces where you can talk handsfree. He kept talking and at first I thought he was talking to me. But it was in a foreign language and went on for so long that I knew he wasn't just talking to the dispatch center. It was a personal call.

There was no air conditioning going though it was 90' that day. He did have a couple of windows open, and the breeze was helpful. I didn't know if I could ask him to turn on the AC since his English was minimal, and I figured that the trip would be only about 15 minutes. The taxi drivers don't usually pick up or drop off other riders.

It's been cool here for a couple of days but is going to be hot again (90s) by the time I have to go to the hearing aid place on Monday.

[Virginia]

Cherie, I am sorry to hear about your physical problems. That is bad and worrisome. I hope that it can get straightened out so that you feel better and also so that the worry of what is going on is taken off you and David. I do hope that it is not early congestive heart failure. I am glad you are in a professional organization that tries to be a voice of reason for newer MS nurses. As a nurse and someone who also has MS, I think you should be a good person to give sound advice about solving problems in the MS world.

Agate, I too have problems with fluid retention. My ankles are permanently swollen now. I have a mild diuretic, but have only taken it several times. My Doctor did not want me to take one until it was absolutely necessary so she gave me some when I went to my nieces wedding and that has been two years. I did not want swollen ankles while wearing a dress. Until MS began to be very symptomatic I never had swollen ankles. I think I am in the same position you are in. I know that diuretics can deplete the potassium in the body but I do not know how to regulate these things.

I am glad you are getting new glasses, but that does not sound like a good trip back. I probably would have been anxious.

Cherie and Peg I think your weather is a lot different than N.C. weather. Air conditioning is almost a must around here, especially for those who have health problems.

[Cherie]

Virginia, A/C is almost a must here too but we live in an 1883 Victorian cottage that has no duct work...only steam radiators so A/C would have to be installed outside and broken through and mounted on walls near the ceilings and we are looking at quotes in the $15-35,000 range depending on if we just did the downstairs bedroom, living , dining and kitchen or if we wanted it available in the whole house. We have pretty much not had many house guests the past couple of years in the summer because it is too hot and fans are not sufficient. Tentatively we will be back in the mountains a week from now but the past few times it has been warmer there than here by the ocean. AND there is A/C there.

[nuthatch]

Like others here, I have very, very swollen feet, ankles and legs. It all started when I first started with MS symptoms. My feet would change color for no reason. Sometimes they would go red, other times purplish. I could not feel any difference but friends would notice the color changes when I was wearing sandals and ask me why my feet were red or discolored. They would change back to normal color, sometimes within minutes.

Over the years swelling became a big problem. I have been put on diuretics by more than one doctor without it helping much. Through researching, I've learned that I have lymphedema, not edema, which is what most doctors treat people for with diuretics. There is a difference. Diuretics are actually harmful for lymphedema.
Years ago a doctor put me on diuretics, but when there was no improvement she added another very strong diuretic plus more potassium.
I ended up in the emergency hospital, very, very weak with major heart arrhythmia from serious potassium depletion, yet my swelling was unaffected, if not worse.

I suspect my mother had this also.
Every time I've taken diuretics, I pee like crazy but when I stop the meds I can't urinate much for several days. I think the body becomes dependent on them very quickly. Yet doctors dole them out like candy! Certain foods are natural diuretics. Watermelon is one for me. Beer works as a diuretic for me also, but I don't like beer.

These sites discuss edema versus lymphedema
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Only registered and activated users can see links., Click Here To Register...

p.s. Most elderly people die of congestive heart failure. The heart simply wears out.

[Howie]

Another sleepless night. I tried, but couldn't do it. So I watched TV, and after a while, I watched a DVD. I wasn't sure it would play a regular DVD. It's a Blue Ray player, and I have a few Blue Ray DVDs, so I tried it. It worked just fine.

Being Sunday, I will watch a few discs since it's a bad TV day. I have quite a few channels considering I have only antenna TV, but I can pick up about 30 channels. Best of all, it's FREE!

I think it rained a little last night. My deck looked wet at sunrise, but it could have been just a heavy dew. All that humidity around here has to go somewhere.

Everyone have a great day!

[Cherie]

Thank you for the links Nuthatch. I don't think mine is lymphedema because it is all over and not just in one or two extremities and there is deep pitting when it is at its worst. I put on 10-12 pounds in a day or two in heat like we have been having (rarely have trouble in the winter) and take it all off in about 12-14 hours with diuretic. When it is hot like this, it may reaccumulate in 3 or 4 days and the cycle is repeated. It also worsens with exercise which is the opposite of lymphedema which is improved with activity. I just have to wait out the warmth and stay in as much as possible till cool weather and all of the symptoms will improve.

As far as congestive heart failure is concerned, as a Geriatric Nurse who, for years, worked with the 80+ year old population, I saw relatively little congestive heart failure. It was much more common in the 60-75 year old folks than those over 80. There are a couple of blood tests now that are specific for it and my mother tested off the charts but did improve her numbers with specific therapies.

[Jeanie Z]

:) My son's friend fixed my central AC, but it is working harder now and my electric bill went way up. I may have to go ahead and have new AC put in.

My son Jim is in North Carolina for a week. He left Friday and Friday afternoon my little house scooter quit working. I have a spare small one but it is not comfortable at all but will have to do until Jim gets back. He had already ordered the part. It is here but I don't want to try to put it on.

I went last night to hear Andy's band and my grandson came to play with them. Before hand I had dinner with a friend who always goes to the band practices.

I am still sleeping a lot but the blackout mask works good as I am having dreams.

I too have edema especially so in my weaker leg. I wear compression stockings all the time. Jeanie :)

[agate]

Cherie and nuthatch, my swelling is all-over swelling too, and my experience has been that I'll gain weight but lose a lot of it with the help of the diuretic. Sometimes the swelling used to be so bad that breathing was a problem, and I just wanted to lie down and sleep most of the time. That was back when I was reluctant to increase the diuretic dose beyond what the instructions said on the bottle. The only way I could bring myself to tinker with that dose was to remember that one doctor I respected had advised me to "play around with it."

I get e-mails about upcoming Masterpiece Theater offerings and notice that one that is to be shown starting September 9 might appeal to anyone who likes dollhouses. It's based on this book--The Miniaturist by Jessica Burton:

Only registered and activated users can see links., Click Here To Register...

Trailer:

Only registered and activated users can see links., Click Here To Register...

[Catdancer]

Cherie and nuthatch, my swelling is all-over swelling too, and my experience has been that I'll gain weight but lose a lot of it with the help of the diuretic. Sometimes the swelling used to be so bad that breathing was a problem, and I just wanted to lie down and sleep most of the time. That was back when I was reluctant to increase the diuretic dose beyond what the instructions said on the bottle. The only way I could bring myself to tinker with that dose was to remember that one doctor I respected had advised me to "play around with it."

I get e-mails about upcoming Masterpiece Theater offerings and notice that one that is to be shown starting September 9 might appeal to anyone who likes dollhouses. It's based on this book--The Miniaturist by Jessica Burton:

Only registered and activated users can see links., Click Here To Register...

Trailer:

Only registered and activated users can see links., Click Here To Register...

I've never heard of this book! I have to go over to amazon right now, and buy it!!

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Jon has lymphedema, as well as water retention. Both were diagnosed by a Physical Therapist with the nursing agency, who specializes in treating patients with lymphedema. When he visited a couple of months ago, he told us that Jon’s swelling wasn’t lymphedema. “It’s water,” he said.

We have tried about every option, which Jon can tolerate to manage his fluid.

We have used compression tubes, which come in a roll. We just cut them to fit Jon’s leg. And there are many ways to use compression, but it’s important to know which points require more compression than others. Sometimes, the PT will tell us to fold over the tube (double it) over the top of Jon’s feet. Sometimes, he recommends just having a tube from ankle to under the knee. We also cut notches on both ends to avoid constriction.

The tube sizes we had were too small and restricting. This drove all of the fluid up into Jon’s torso. Heart rate elevated, SATS dropped, and we suctioned, and he vomited, and water was gushing out of him. Very scary stuff. We’ve been through it multiple times through the years.

On his last visit, the PT gave us 2 larger sizes of tubes. They work a little bit, but with the heat and humidity, they caused Jon temperatures, sweating, etc., so we had to stop using them.

There is a special type of massage, which the PT taught us, for lymphedema. The touch is light and circular. There are lots of videos on YouTube showing various methods of the massage.

Positioning is also very important. Legs elevated. If your feet are down, water will fill up there, causing dependent edema. You may need to put a pillow under your knees, when your legs are elevated.

Diuretics:

Jon’s physicians hesitate to give him Lasix or any other diuretic, primarily because of potassium loss, as well as dehydration. Even when he was third spacing in ICU and had 50 lbs of water in him, his intensivist was reluctant to give Lasix. When he did, it was a very small dose.

Natural diuretics might help such as watermelon, lemons, pineapple juice, even coffee and tea. Jon can’t tolerate real food any longer, so we don’t have those options.

And, even then, we have to be aware of potential dehydration.

It seems counterintuitive to drink more water, when you’re trying to evacuate water. But I believe the ICU docs and nurses, and Jon’s reactions to diuretics. It’s important to maintain a balance.

My heart goes out to all of you, who are struggling with edema. I just wanted to share our experience, in case there is something worthwhile there to help you.

Love & Light,



Rose

[stillstANNding]

Hi Howie, sorry you are still having sleepless nights. And thanks for telling us that Blu-Ray players play regular DVDs, Peter and I didn’t know that.

I hope things are alright with Virginia.

ANN

[Virginia]

Hanging in here Ann. Thanks for asking. A little anxious about things, but otherwise doing alright. Went to eat with 1 brother and 2 sister-in-laws tonight. First time in many weeks.

[agate]

Virginia, I'm glad if you've had a chance to be a little less worried about your brother. Sometimes it helps just to take a breather from worry and put a little distance between yourself and whatever you're worried about if that's possible. Sounds as if you were able to do that for a while.