New, ....again?

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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New, ....again?

Postby Robert Hayes » Sat Apr 07, 2012 7:52 pm

I am,I think new here,but may have visited in the past. Was dx'd w/ LYmphedema two years ago. I t has become steadily worse and I now have an enterobacter infection which has colonized. I also have Hereditary Angio Edema and have just this past week been started in the Lymphedema Program here in Topeka w/ Lynn Fast. Compression hose have not helped and it would appear the infection,HAE and LE have become swell (Pun intended) buddies. The leggings have been measured for and ordered. Still in the education phase. Any thoughts or comments appreciated? Thanks, Bob HAyes,Topeka KS :oops:
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Re: New, ....again?

Postby patoco » Sun Apr 08, 2012 7:16 am

Hey there Bob

I put in a reply on your other post, so be sure to check it out.

Were the compression hose custom made for you or were they off the shelf?

I can imagine how tough a time you are having with the combination of angioedema and lymphedema. I also meant to ask what type of antibiotic were they using for the infection.

I was on three solid months of gentamicin and unasyn to finally get rid of it.

Do you do any type of exercise? I don't know if you have access to a safe pool, but swimming is an incredible exercise for helping lymphedema. The gentle motion of the water actually acts like CDT on the legs.

Pat
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Re: New, ....again?

Postby Robert Hayes » Sun Apr 08, 2012 8:00 pm

Pat, the compression hose were of the strongest strength ( ??) Jobst makes. Issued to me by local V A. I am on moxifloxicillian on a 10 day course PRN (Basically as I see I need to be on it.The L E clinic here in Topeka, Lynn Fast< is reputed to be of importin the tx of this disease. She has done the thorough measurement for the "garments and displayed a set for me... Anyone seen the lower half of the Michelin tire man??? I feel I have a tremendous tx team FINQALLY.. An experienced V A doc-Finally_ a PCP civilian doc and a cool Allergist, Dr Viaco as well as Dr Jones for my infectous disease doc. They play together and I feel pretty safe with all this. I FINALLY get my head around the HAE and L E and the constant threat of the infection wears me down a bit here... But hoping to learn/and use the support here,even if it is only you!!!?
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Re: New, ....again?

Postby blubrdfrend » Mon Apr 09, 2012 9:26 am

Robert, I have had LE since I was 17. It was not bad then thankfully since no one knew what it was. I wasted a lot of time on x-rays and test. I am 66 now and I have never had the problems that you have. I have had infections over the years that were healed by antibiotics. My LE was gradual so that I was able to work for years. This was a blessing for a young widow with two small children. I worked in the court system until I was 50. The walking, standing and sitting with legs down had become a problem. I am so sorry that your LE has started as a hail storm. You are probably very young so I am hoping that after these infections are cleared you will be able to manage your condition.
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Re: New, ....again?

Postby Robert Hayes » Mon Apr 09, 2012 7:29 pm

Hey, Blue,your post IS much appreciated here,believe me> As to young... welllll,not so much... I hit 63 next month... but it has been a head scratcher that so much caught up so suddenly in the past 2.5 years... Sorta' smacked me up side the head like an old mule getting a 2x4... But what doesn't kill me makes me stronger, and they surely were trying to kill em!
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Re: New, ....again?

Postby Robert Hayes » Mon Apr 09, 2012 9:01 pm

Perhaps this will assits in explaining our plan..../? I contracted jungle rot from the not-so-nice- terrain in southeast asia while on my senior trip... It is our hope the residuals of the fungus we are treating w/ Terbinefine will knock out what MAY be the host and sets up the L E...at least that;s the plan...?
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Re: New, ....again?

Postby patoco » Wed Apr 11, 2012 6:36 am

Thanks Bob, it does help and makes sense from what you shared.

We share your hopes too and look forward to the positive results you will get.

My best as always :!: :!:

Pat
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Re: New, ....again?

Postby Robert Hayes » Wed Apr 11, 2012 7:15 am

Until the acquisition of the new duds here, It seems that we meet M-W-F @ 7 A M for the educative portion and exercise...like boot camp again and the cardio rehab after the two heart attacks a year ago... But it works for me!! :D
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Re: New, ....again?

Postby joanne johnson » Wed Apr 11, 2012 10:55 pm

Bob,

It sounds like you have a great team working for you. I wish you the best of luck. This will all take time to get sorted out but hopefully you will have good results.

It is lucky for you that you have Pat on your side. He is the guru of lymphedema. He is kind and chock full of important information! Keep us posted. This is a great caring family of people that understand what goes on with lymphedema.
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Re: New, ....again?

Postby Robert Hayes » Thu May 17, 2012 12:04 pm

I am almost two months into the LE tx here in Topeka. We have had some -according to Lynn Fast-the director of the program and my primary-and only-therapist have found when the fulkl body "expression of the lymph system is done. points around my upper thighs/hips will transfer strong pain flashes into my arms one side at a time, enough to raise me off the table. Very strange.Further, after our M-W-F 7 A M appts, I encounter a "trashy" mood w/ stomach upset and not feeling real good for almost the complete remainder of the day. Lynn says this is NOT common in here experience, but not surprising to her considering all my body has gone through. Last item. With the size of the bandages, and the fact I flat refuse to let this slow me down in my garden and all else, I slip on an older pair of Jobst compression stockings over the bandages so I can work in the garden and use my wed-eater and not get dirt in my bandages and toes Works VERY well. I badly needed another pair of shoes since my older Birkenstocks are more rapidly wearing out due to the size of the bandages so I went out to a local shoe store that sells shoes for diabetics and such,and got a new pair of Birks w/ extensions sewn on so I cqan buckle them-which can be removed when I finally get into the garments. They also have another shoe that I'll get for cooler weather. Tomorrow I am supposed to go to my grqandsons elementary school for grandparents day. The Jobst socks and Birks leave my feet looking almost normal and for that I am grateful!! Thought I should share these ideas for others.Hpe they might help???
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Re: New, ....again?

Postby patoco » Fri May 18, 2012 10:56 am

Wow....lots of good ideas there Bob....thanks for sharing.

I have heard others mention that mood too and I agee it isn't surprising considering what all of our bodies go through with LE.

Have a great time at your grandson's school. LOL...I have two grandsons now and another on the way in September. :)

I was a very active gardner until a couple years ago. What I did then was to garden in containers. I had a few containers with tomatoes, cukes...even zuchini, yellow squash, brocalli and flowers such as zinnias and cosmos.
By then this breathing/lung fluid issue just got to overwhelming to try any type of gardening, so I have officially retired from that, but sure do miss it......nothing like fresh garden grown veggies..

Pat
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Re: New, ....again?

Postby Robert Hayes » Sun May 20, 2012 4:26 pm

Pat, thanks SO much for your reply and thoughts. It is of help here . Things that have ocurred with the LE are pretty new to me and I relish any and all tips and feeedbac since this is a "for life" situation,like the HAE and the Bacteremia infection. The interplay 'tween this "trifwct" is helpful to me and how better to live (rather than simply existing with them. ??
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Re: New, ....again?

Postby patoco » Mon May 21, 2012 10:49 am

Just glad we can be of help :!: :)

My motto has always been lymphedema is a condition that just causes changes in the way we do things...not that we have to give up everything. That would drive me nutso.

I remember the first time I was ever in a room with several dozen lymphedema patients. They were horrified of all that I did and I guess I was horrified that they had allowed lymphedema to basically confine them to a chair.

Adaptation is a key with LE (lymph).

I also have a saying that life isn't a requiem for that which we can not do, but is a celebration of that which we can.

Pat
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Re: New, ....again?

Postby Robert Hayes » Mon May 21, 2012 6:29 pm

Robert Hayes wrote:Pat, thanks SO much for your reply and thoughts. It is of help here . Things that have ocurred with the LE are pretty new to me and I relish any and all tips and feeedbac since this is a "for life" situation,like the HAE and the Bacteremia infection. The interplay 'tween this "trifwct" is helpful to me and how better to live (rather than simply existing with them. ??
patoco wrote:Just glad we can be of help :!: :)

My motto has always been lymphedema is a condition that just causes changes in the way we do things...not that we have to give up everything. That would drive me nutso.

I remember the first time I was ever in a room with several dozen lymphedema patients. They were horrified of all that I did and I guess I was horrified that they had allowed lymphedema to basically confine them to a chair.

Adaptation is a key with LE (lymph).

I also have a saying that life isn't a requiem for that which we can not do, but is a celebration of that which we can.

Pat
Thanks for the birthdqay present today,Pat!! Much appreciated!? I am also aware the when the full lymph system is expressed like today, a couple hours later, the Trashed feeling begins and I get tremendously drowsy. To the point od face planting on/at the computer or elsewhere. Does anyone else note or report this??
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Re: New, ....again?

Postby Robert Hayes » Tue Jun 26, 2012 8:04 pm

Had another bout of infection...this time it was Klebsiella . Port infected again so we took it out today and I go back for a PICC in right arm for my infusions. The mortality rate for this infection seems to be 40-50% REALLY tired of this stuff.The LE is bad enough but the "for life" infection AND the HAE is ridiculous. I would hope for a normallife, if I just had a clue as to ehat one is!!!
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Re: New, ....again?

Postby patoco » Wed Jun 27, 2012 3:32 pm

Ugh...haven't had one of those infections yet. From what I read I hopefully never will. Hang in there my friend, things will smooth out for you.

Are they going to try to put in a new port later? I dread them ever having to take mine out, as my arms really start blowing up with even a picc.

From what I read, the Klebsiella pneumonia is the one with the 50% mortality rate. I guess I have learned not to listen to that kind of stuff anymore. Can't tell you how many times they told my parents I wouldn't make it through the night or more recently how they went to counting my time in days, here I am still hanging around.

Robert, thanks for letting us know how you are doing. Thoughts and prayers remain with you both for those infections and for the lymphedema.

Just wondering too, have they ever tested your immune system? They have been finding out that some of us, myself included have dismal immune systems thanks to the LE, so I was wondering if you might have that as well. Ask you docs about doing a
lymphocyte subset panel - that will tell you what your CD-4 count is.

You mostly hear about CD4 in terms of HIV/AIDS; but there are so many other conditions that can effect it as well - such as cancer. For a person of Northern European descent it should be about 1000. mine went as low as 48 once and seems to hover around the low 200's.

Keep in touch :!:

Pat
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Re: New, ....again?

Postby Robert Hayes » Wed Jul 18, 2012 7:32 pm

Pat, just returned from in=pt @ hosp from yet ANOTHER infection. PICC was removed and port was removed 2 1/2 weeks ago. Have my 1st set of garments.Solaris s'pposed to be on the way as well as 2nd set of garments. Tired of rolling bandages but it is FAR better then these infections w/ 40-50 morbidity percentages. AND it's 107 outside.feels like 300 w/ stockings... It DOES get better,eh???
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Re: New, ....again?

Postby Robert Hayes » Wed Jul 18, 2012 7:35 pm

Pat, the docs told me my immune system was functionally destroyed by the dioxins from Agent Orange. Just found a new link to the severity of the stuff as of 1999. I seem to recall it equated Chernoble..
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Re: New, ....again?

Postby patoco » Fri Jul 20, 2012 3:21 pm

Hey Robert

Yes! - it does get better Robert and I am rejoicing with you in getting the picc and the port removed.

I'm not terribly surprised about the agent orange - it has to be one of the worse things humanity has ever invented and there will be many generations paying the price for it being used.

What's scary is that many of us have been exposed to it, even if we weren't in the military. I stayed with a friend here in the Atlanta area when I first moved down here. Did gardening, yard work - which were hobbies. What I didn't know what that he ha previously used agent orange around his house and I have always wondered how much of the has played a part in my health since then.

What has happened to me is even strange for lymphers.

But, my friend, with a wee bit of caution, you can still do quite good with a dysfunctional immune system. I have farde qutie well in that respect...no major infections, viruses or the like. I just have set up perimeters and as long as I stay within them, I do ok in that respect.

It was so good to hear from you too, just be sure you don't be a stranger.

Pat
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Re: New, ....again?

Postby Robert Hayes » Mon Aug 06, 2012 5:06 pm

Have rec'd my "garments" as well as the Solaris night stuff and the pump is on the way. The bandaging and work by my LE specialist seems to have been magical. Another bout of a rare infection two weeks ago nailed my Picc, but have since replaced it last week. If we can make it a year w/ this PICC,I'll go back to a port in my chest,but the PICC is medically easier to replace than a port. My infectious disease doc told me there was no earthly reason for me to have had this latest infection in its rarity but that he was not surprised given the state of my immune system.
Patrick, I am blown away by the Agent Oraange in Atlanta.... Speechless here... warps my mind. WHY,WHY,WHY!!!/ That stuff is NOT for human interaction! So sad it's been used stateside!
Patrick, here is a link to a study I recently stumbled onto. The PDF version is replete with maps and more data than needed to make one hurl! The Da NAng Airport-when I was there-was known as the 15th Ariel Port and was heaviuly contaminated by the dioxins. When I flew from my forward base @ Dong Ha back to Da Nang,we always landed at the north end of the flightline, right across from Mort 5,which was the mortuary where body bags were dropped off for processing anf shipment back to the states in transfer cases for burial. Those who worked in graves registration were know as "Ghouls" since they were pasty white from the formaldhao they worked in... They did not know they were so heavily contaminated by the Agent Orange as the C-123's that took off would spill it onto them and the ground. This link will make one's jaw drop-It DID mine_!!! http://www.voanews.com/content/us-begin ... 54297.html Chernoble is somewhat tame considering!?
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Re: New, ....again?

Postby patoco » Mon Aug 06, 2012 8:54 pm

Thanks Robert, I will definately read that link. What freaked me out was that I didn't learn about my friend's use of agent orange until AFTER I have eaten tons of veggies I had planted in that soil.

I have always wondered too, if my lymphoma came from that instead of hereditary lymphedema. But, there is not way we will ever know at this point.

Wish you the best on the picc line. I had one in my left arm and then the arm went huge, so we had to get it out.

Then they put in the port, which I have now had since 2006 - problem free - I love it!!!

I agree with your infections doctor, it doesn't surprise me either about you getting the infection. With your immune system being so dysfunctional, I am surprised you haven't had worse.

I kept telling the docs they were missing something on me. They finally got around to doing a lymphocyte subset panel. My CD4 count, which for my Northern European heritage should have been about 2,000. It was 48, yep 48.
It has since increased but never beyond 248.

"Tis an amazing life.

Pat
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Re: New, ....again?

Postby Robert Hayes » Thu Aug 09, 2012 7:43 pm

Pat, I found the correct link for the report I mentioned above...it made me sick to my stomach when I walked through this whoe thing,especiallt the maps here. I remember this all too well and can even see the spot at the N end of the flight line where the rockets got us in the choppers that nite in '69. I wonder how the airborne particles of the "juice" could NOT have benn in the open,bleeding wounds that bloody nite?
http://www.agentorangerecord.com/agent_ ... e_reports/
Just scroll down the left side till you come to the "DA NANG Airport. It will come up PDF... Hard for me to look at.
BTW HAve this total,new Pump set=up they sent me I have no idea if I'll ever use it. The garments are holding me together fine. Wonder how to "repurpose" this monster. ...or find someone in need of it (Legs only) If you hear of someone, I'd like to help??
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Re: New, ....again?

Postby Robert Hayes » Thu Aug 09, 2012 7:47 pm

BTW I cannot log in here on my new laptop. I have to use the PC which I am phasing out... Any thoughts on how to retrieve the password here and apply it to the new one? My email is steckel@cox.net using Firefox/Mozilla Thunderbird Email... Thanksmy friend!!
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