OT August Chit Chat

[nuthatch]

Rose, everything you shared was exactly what I have dealt with myself regarding treating lymphedema. We were taught how to do the light touch massage by a lymphedema nurse years ago. She also tried using a compression pump (like a sleeve for your leg that does a graduated compression, kinda like a blood pressure cuff) but the sleeve was hot and made the swelling worse.
Heat or sun really cause swelling in me.

At one point, years later, the lymphedema was so bad that the top of one foot and the big toe opened up and would not heal. I was sent to a podiatrist who wrapped me in a special medicated material. I would return every week to have it rewrapped until it was healed. For a time I was having daily home visits by a lymphedema nurse who would wrap each toe individually, then the legs all the way up to the top of my thigh in multiple layers! The process took hours each day but she managed to reduce the fluid build up considerably.
She took multiple measurements daily, then ordered Juxtalites adjustable upper leg, lower leg, foot/ankle wraps and Farrow toe caps (compression toe socks). Believe me when I say all this is quite expensive and Medicare or insurance doesn't pay for any of the wraps, the toe caps cost nearly $90 per foot alone. I couldn't handle wearing the upper leg wraps but I wear the rest from morning to bedtime. It has really helped. I call it my mummy garb!

I did try the compression tubes you speak of, also support hose. Not helpful and downright painful.

I sleep with my feet elevated with pillows under my knees every night. My feet feel so much better in the morning and are wrinkly like a raisin, until I get up. By the time I get out of the shower, were back to square one. I should elevate my feet several times daily but . . . can't get much done with my feet up. Exercises are impossible when you can't even move your legs or toes.

I'm sorry you have to deal with this on top of all Jon's other issues. You and Jim have so much on your plate, yet you take the time to offer your knowledge and support to all of us here. I want you to know how much I appreciate you. Thank you, Rose.

Joan aka nuthatch

[nuthatch]

Agate, after the discussion on this forum about grocery delivery, I decide to give Instacart a try. I see that one of the stores that they deliver from is CVS. I don't know if you have Instacart there, but it's just a thought.

Also, I'm seeing commercials on TV about something called Pill Pack or Pill Box? Haven't been paying attention, so I don't know anything about it, so it may just be like mail order Rx.

[Howie]

Ann, the sleep problems continue. I seem to sleep every other night. I stopped coffee entirely, and it didn't make any difference, the same every other night sleep cycle. So after waiting over an hour to go to sleep tonight, I did make coffee which I'm having now.

I was taking an OTC sleep med right before bedtime, and it worked great for many, many years. But now, it doesn't. I don't know why. So I've decided to get in the cycle of sleeping, every other night, and see how I do.

"They" say, the older you get, the less sleep you need. Okay then, they must be right. I'll just go with the flow, and tonight is a no sleep night. Goodnight sleepyheads!

[stillstANNding]

The “elderly” need as little as 5 hours of sleep a night. I don’t know what “elderly” means any more.

As I recall, you were taking something like Benedryl (w a different name). Maybe you just need some more time for your body to adjust to not having it. It is very mild and helps people get drowsy to be able to fall asleep.

Enjoy your coffee.
ANN

[Howie]

Ann, it's Diphenhydramine, which like you said is Benadryl. It's the main ingredient in many OTC meds. It can be used in allergy meds, sleep meds, and many others. Since I didn't sleep last night, I'll stay up until my usual 2am, and try sleeping without any med.

[agate]

Howie, there's one good thing on the horizon. Recently I had to visit mySocialSecurity.gov or whatever it's called and noticed that September's funds will roll in on August 31. Monday the 3rd is Labor Day.

About swelling--years ago a PT recommended elevating my legs twice a day for at least 15 minutes. I've been doing that but only once a day, just before the afternoon nap so as not to have to interrupt the day. I was advised to get a foam block but couldn't find one the right size and so I rest my lower legs on an overturned laundry basket.

[Howie]

I had the hope that it would go that way. It's good to have the confirmation. Thanks Agate.

[Catdancer]

So, it only took me 45 minutes on the phone to save $75 a month! Whee!!!!! My phone/internet/satellite tv bill had soared to over $212/month! Ouch! Where I live in the country, having satellite TV is essential -- without it, we can access only one standard station reliably, even with an expensive antenna (we know; we tried). We've had a "bundle" with our local phone company since 2002, which included all three services (phone, internet, satellite), with DISH being their satellite contract. Turns out that they changed "bundlers" some time ago to DIRECTV, which is much cheaper (and where the cost savings came in). On top of that -- and this is MY mistake -- I've been "renting" a modem for years, at $10 a month! I didn't know I was renting it! I thought it came with the internet service!! No!!! I have to BUY it for a one time purchase fee of $100.

So -- next month I'll have a $100 charge for the new modem (coming in the mail to me, next week). And a technician will be coming to the house (for free), to install the DIRECTV service (and disconnect DISH). Other than having to learn a new satellite system (all our favorite channels will change numbers...) … and having to call DISH to return their equipment....we'll have pretty-near the same services for only $137/month. And a new modem.

That will help our budget for sure!

[Cherie]

((((((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

I do lymphatic massage which does not seem to help. Compression stockings help some but not a lot. The only thing that seems to work is metolazone added to the lasix. Lasix alone does not do the trick. And I do not drop my potassium with Lasix but I sure do with the metolazone. Thanks Rose. All of these things have been part of the tool kit for at least thirty years now for me. It just gets worse in the heat and when I am more active.

[agate]

I'm paying $53/month for the cable TV with Comcast AKA XFinity, and until Sept. 1 or thereabouts $80/month for Internet and landline phone with Century Link. So that is regarded as cheap--judging from what you're saying, Cat. I just haven't moved with the times. I've failed to realize that people now expect to pay that much.

My Century Link is about to go up from $80 to $124/month because a 5-year deal they offered me is expiring. I'm planning to fuss about this on the grounds that their Internet service has been so very rotten all along, and after spending hours (literally many hours) on the phone with them trying to get it fixed, I gave up many months ago but still am irritated at how bad the connection often is.

I do tend to forget the early times when there was a dialup connection, and you waited and waited while the dialup went through various steps, keeping you informed: "dialing the Internet connection," "handshake," "connecting to server," etc. But nowadays it's just as long a wait but a different bunch of steps to go through while computers talked to computers. I try to think back on those days when I get too irritated.

One problem with thinking back on those days is that I always recall also how at that time the Internet was free or very nearly so if you looked around for free dialup services. For a long time I had Freeinet, whose motto was "Because the Internet was meant to be free."

That idea slipped away long ago--and so did Freeinet and all other free dialups.

[Pegakafarmgirl]

I love our Direct TV,, we just have cable, phone and internet is thru our phone company,, a small town company,, but it works, good,,,, and if I have a problem,, they come out, or our IT tech son comes out.

[Catdancer]

Agate, when you talk to centurytel/centurylink, ask them about their "lifetime" rate. That's what I got this morning: unlimited phone service "guaranteed for life" at $85/month. Then it you rent a modem for internet accexx, add $10/ month, or buy a modem for $100 (one time cost). The rest is for basic satellite, with local stations...

[Cherie]

I am paying $154/month for phone, cable and internet and I also get Showtime and HBO with that. Verizon Fios is our provider.

[Earth Mother 2 Angels]

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

nuthatch ~

I believe that one of the purposes of the life I've been given is to help others. That is the main reason why I joined BT, as I am considerably older than all of the parents on our Child Neuro forum, and my children are older than their children. The wonderful part is that I have learned so much from all of them! And from all of you here on the MS forum!

You have been through so much with lymphedema. I'm so sorry for all that you've endured. I can only imagine how miserable it is to have lymphedema and water retention. And I do know how frustrating it is to manage it.

Jon's therapist did the 3 layer wrapping, and it worked beautifully, but it didn't last. We wrapped his legs for awhile, but the PT didn't want to continue doing it, once it stopped working.

Jon's feet and legs blister and weep lymph fluid. Per the PT's suggestion, I'm now applying Aquaphor. It's helping a little, but when the scabs fall off, the new skin is pink and raw.

He also has a chronic ingrown toenail on his left big toe, which a podiatry assistant cuts out every 9 weeks in a home visit. The top of his toe is split now. I'm running out of ways to treat it. I'm going to ask his nurse for silver and collagen to apply to it.

When Jim met with our pulmonologist, who is also an ICU intensivist and has cared for Michael and Jon, he asked Jim how Jon is. Jim told him that Jon has lymphedema. The doctor frowned sadly, "You'll be chasing that forever. I'm so sorry."

So, we really get what you and everyone here with fluid retention are going through, and we empathize with you.

Cherie ~

I figured that you knew all of this, as you are a nurse. I'm so sorry for you too that you have to contend with this during the hot weather. Unfortunately, hot weather seems to be the "new normal" for our planet.

Virginia ~

I'm glad you were able to go out for dinner. I've been praying for your brother. Did he have the defib placed today? Thinking of you and your family.

All of you are in my prayers, and I send you healing, positive energy every day.

Love & Light,



Rose

[Virginia]

I too thank you Rose for all your information. I thank you for being willing to share what you have learned through the years, however I am sorry it was necessary for you to learn it.

Cherie, you are most fortunate to have cable, internet and phone for that amount of money. Mine is $193.30 a month and I had to haggle to get them down from over $220.00.

Brother had defibrillator put in this afternoon. He finally started talking a little to his daughter who went there yesterday from N.C. He has not been talking, the lights are off all the time and the TV is off. Some of that may change in the next couple of days. I think he has been in so much pain and gone through so much that he just didn't feel like having any commotion around him. They hope to move him to rehab within a couple of days. For one thing they need the space.

Thank all of you who have prayed and thought about him. This morning his daughter did not sound as good, when she texted that his breathing seemed weak, that he was not eating and also when they come in to try and get him to breath into the tube he just gets mad. He doesn't want to fool with it. But this afternoon when she said he was talking after the surgery for defib it sounded better.