Newbie here to this forum...

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Newbie here to this forum...

Postby Robert Hayes » Sat Jul 17, 2010 10:19 am

Robert Hayes here in Topeka,KS (61 yoa,male) recently Dx w/ lymphoedema. I have Angio-edema as well (died twice from the laryngeal edema and in ICU 24 times since 1969 because of it) Been using Cinryze prior to surgeries and Berinert as a rescue drug. (both are I V infusions) Pretty expensive stuff... I have had four knee surgeries in the last year,culminating w/ a TKR last Oct. Graduated the surgeons rehab and went on to local V A to complete rehab in the swimming pool. Discovered they used Bromine rather than clhorine in the pool. Apparently I am allergic to Bromine. After almost a month of severe itching, my B P surged to 267 over 190,wife (Catherine) was taking me to E R... When we arrived I was unresponsive. Turns out I went into septic shock and R leg was hamburger from knee to ankle.. Infectious disease doc says a massive strep infection from either the pool or dressing room @ V A.I have been on Cephradine since 2/8/10*/!).Lotsa' other issues. Cannot finish yet the rehab on L Knee replacement. Infectious disease Doc told me/diagnosed the swelling/pain red stain on R lower leg as Lymphoedema. The strep infection went -also up to an unknown abcess in upper tooth.Resulting in pulling ALL upper teeth in April. All molars had roots grown into the sinus cavity... When removed, one molar came out w/ a large chunk of bone,and due to that, I have an unclosed hole from gum line to sinus cavity. My V A doc does NOT wish odeal with the Angio0edema,so I have a conglomeration of civilian and V A docs who are often not on the same page. I am total and permanent disabled by V A from injuries in Vietnam in 1969, as the angio-edema first manifested there( One doc I saw in college first identified the disease as we were in the same area of operations as outcome from dioxins from Agent orange)...Nuff about that. I am totally fatigued w/ medical crappola and have been reading thru this site to find what may be some relief from this edema in legs and whatever homeopathic, etc, stuff those who know might direct me to. I retired (medically in 1997) from my private practice AND concomittantly the V A as psychologist specializing in treating survivors of trauma. Lookin' for some words back that might have a nugget of light in them for me.. All help appreciated? Bob
Robert Hayes
 
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Re: Newbie here to this forum...

Postby patoco » Sun Jul 18, 2010 10:59 am

Hey Bob :)

Super welcome to the family here :!: :!: :!:

Don't get me started with the Agent Orange issue. I've just known too many people who were really messed up from that garbage. It really infuriates me too how they have been treated by our government.

Angioedema is pretty serious, most people don't realize how life threatening it can be. We do have a brief info page on it too:

Angioedema

http://www.lymphedemapeople.com/wiki/do ... angioedema

Bob, I would imagine that massive infection was the final trigger for the lymphedema. It's well documented in the medical literature on infections, the damage they actually do to the lymphatics with subsequent lymphedema.

If you haven't been to a certified lymphedema therapist, I urge you to get a referral to one as soon as you can. At least there, you would get a complete evaluation, go through some therapy to help on the swelling and get a management process going. As you heal from everything, this is going to be central in not only preventing additional swelling, but also will help in the prevention of further infections and will greatly improve your quality of life.

Not sure if you have seen our page on leg lymhpedema:

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

The page has extensive info on it, including possible complications, treatment, stages and info on many things you can do yourself to help.

If you have any questions at all, please don't hesitate for even a second to post them. We are all here for each other :!: :!:

Am I understanding you correctly that you are a psychologist? If so the training on helping people survive trauma is going to be a super asset for you as you learn about LE.

One important thing that I wish all lymphers could understand is that having lymphedema doesn't mean you have to quit living, It just means you'll need to adapt your activities in relation to the lymphedema. With proper management, there is still a massive amount of good activities you can do.

I think the biggest challenge we all have is in coping with the emotional impact of LE. Just the time that you think you have things figured out, it really throws you for a loop.

You may find this page helpful too:

Lymphedema For the Newly Diagnosed

http://www.lymphedemapeople.com/wiki/do ... _diagnosed

I hear you about being fatigued with medical crappola. I'm not sure I have a very good reputation with doctors in this area. I tend to be pretty much of a pit bull with those who tried the "spreading manure" concept. After having LE for every day of my 57 years, I can really tell some horror stories about doctors, and their lack of knowledge and/or flat disinterest in the condition. Thank God now I do have a team of doctors that I have profound respect for and who really care about their patients.

BTW, one of them is an ID doc - and I'm glad to hear you've been under an ID docs care. Mine (Dr. Raizes) has been a real life saver for me. By the time I finally found him, I had been through a series of hospitalizations for cellulitis. Once I even had to be on two IV antibiotics for several months. He put me on a preventative antibiotic therapy and I've had only one minor infection in the last four years.

Anyway, don't mean to ramble here. Glad you found us and joined and as I said don't hesitate to bring up any questions or concerns. Even if it is just to vent, we here for that too.

My best to you

Pat
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Re: Newbie here to this forum...

Postby Robert Hayes » Sun Jul 18, 2010 5:13 pm

Pat, my thanks and appreciation for the depth and breadth of your reply! I won't go into detail here as I am involved ddeply on the HAE forum, but the info page you mentioned here-please excuse how this sounds!_ is seriously out of date and tends to focus on the stuff as primarily anaphalactic in nature. While it may reflect some of that,too many supposedly professional treators are under the misguided belief steroids and epi-pens are the path to nirvanah...T'aint so... The newly FDA approved human plasma drugs-C1H inhibitors- are QUITE expensive.. The Cinryze is $6,462.13 per 1,00 units and I require two infusions per week. The "rescue drug,Berinert..recently needed,is $16,000 per 2,00 units. I'm 6'4' and 250 lbs and my co=pay for the fun is $2,000.even w/ fed BCBS insurance. The V A is required by law to provide the meds for service-connected conditions but the chief of staff here called me personally to tell me" I'm a doctor in training only, I'm NOT one anymore.I'm a beaurocrat. ..and if I had ten million dollars,I would NOT spend a million on you. " I get it.... The $$ cost is HIGH! But I am in the middle of a congressional investigation by a Congressman whom I detest-he talks but really doesn't work for anyone who id $$$ challenged-AND I cannot but detest his stance on real world issues,conservative that he is. AND he believes men should tell women how to -or NOT to -express their reproductive rights...The V A is slow-walking their reply to us.
Knowing what I do about the angio -edema and how it works, I have questions about the potential interplay 'tween the HAE and LE especially around the Lymph system and the edema,which zI find VERY similar to the HAE... I have forwarded my questions to HAE HMFIC personell...awaiting answer. I really don't know what to expect from an LE specialist. My ID doc says it will take between 6-9 months to get an appt. As I have a 2 hour life expectancy at any moment w/ the HAE,it leaves me a teensy-bit uncomfortable. I have been icing the leg (S) and it seems to do little. I have always been one to carry my own pack, and I am troubled I can no longer do that. I HATE feeling like I have the recliner on my back as I DO things to help divert from what already is distressing W/ HAe... I don't like movies,preferring real life to some actor playing a real person w/ a writers words. I prefer function to form. I garden (urban farmer, run a community web site for large (mostly 1/8th scale model car buffs-mostly scratchbuilt... http://public.fotki.com/molderone/
That helps me keep appreciably sane SOMETIMES! ( I was a in High School, majored in drag racing (my 57 Chevy)and alcohol before I enlisted and volunteered to go on an extended senior trip in the jungle. I was-in a word-young,dumb,and stupid. I had NO idea -since I did not really expect to return stateside alive-) what all I did would cost me. I was D*#^@) good w/ a rifle back then, but that's not too socially acceptable nowadays...
I spent nearly a year in a military ortho hosp in body cast and saw far more than I will say here.
I WAS a psychologist... but I left all those toys in the sandbox when I retired in 1997 the old injuries-osteoarthritis, bone spurs, jungle rot, the HAE,and other old crap became too much... I was on a national PTSD training team for training other PTSD treators, I set up a number of in and outpatient units, trained and supervised social work PhD candidates, Psychology PhD folk, and Israeli Defense Forces psychiatrists and psychologists in tx of chronic PTSD. I lectured @ Menningers here in Topeka, was deeply involved in the Greater Kansas City Task Force on Trauma and Recovery, and Chief consultant at the Metropolitan Organization to Combat Sexual abuse in K C and consulted/treated children at the Two Rivers Psych hospital in K C as well as my own private practice treating police officers,fire fighters,and Burlington Northern-Sante-Fe grade crossing accident survivors. I did Critical Incident Stress debriefings on site on shootings, OSHA type accidents. All over the place. I LOVED what I did-like Will Rodgers said.."If you like what you do,you never work a day in your life!" I also feel like Lou Gerhig at home plate in Yankee Stadium.." I feel like the luckiest man alive"...and I'd kinda' sorta' like to stay that way...WITH SOME quality of life-cause lately that's been going downhill! Sorry for the rant,Pat...but that' my life in a nutshell... ..and having said all that, my mantra from long ago and far away has been and is..."I'm already dead,just waitin' for God to get the telegram"...I'm quite surprised each morning when I wake up with another day...? Further, if you-or anyone out there-who may know of a good dry cleaners ? ,perhaps my karma needs a SERIOUS cleaning?? Bob
Robert Hayes
 
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Re: Newbie here to this forum...

Postby Robert Hayes » Tue Jul 20, 2010 1:04 pm

Because of an exploded disc in my back and resulting surgery in '02,I am considered a fall risk ( The fragmentation of the disc nicked the S-2 nerve so I need a GPS to know where my left leg is at any given moment).While picking tomatoes last eve, I stumbled and scraped my R leg on tomato cage. Bled profusely for a bit till I put a compress on it. Bleeding stopped,but a couple hours later my Birkenstock was wet and sloppy from drainage of clear fluid. De to fears of infection returning, my wife cleaned it w/ alcohol and put neosporin on it + bandaids. She insisted I call my ID doc this morn and he reordered Cephradine to start immediately and to call back on Thurs w/ update... Is this normal procedure ya'll mostly go thru.(As I'm new to this L E gig!)?
Robert Hayes
 
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Re: Newbie here to this forum...

Postby patoco » Wed Jul 21, 2010 10:40 am

Hey Bob

Because of the lymphedema, your leg is immunocompromised and this makes us incredibly vulnerable to infections such as cellulitis.

Since you cut yourself on a wire cage that had been outside in the garden, it was an excellent idea to call the ID doc and get antibiotics. That's what I would have done. Cellulitis is not something to fool around with. I even had a node in my left groin become necrotic from cellulitis when I was 10 years old - and they had to cut it out.

Being a gardner, some of the worse infections I have ever had came about as a result of a cut or scrape while gardening.

BTW, that fluid coming out of the leg is called lymphorrhea. That's the stagnant fluid that builds up in the limb.

Lymphorrhea

http://www.lymphedemapeople.com/thesite ... orrhea.htm

Any nick, scrape - juts about anything seems to cause it to start draining or leaking out. If it continues, you'll need to take some steps to try and stop it. The fluid will quickly degrade the surrounding skin and you could wind up with a major "wound."

Pat
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Re: Newbie here to this forum...

Postby Robert Hayes » Wed Jul 21, 2010 2:05 pm

Thank you for the VERY helpful info,Pat!! I have a lot to learn about this "friend"!? ( I am allergic to both forms of tetanus,so that makes it a wee bit scarier here...)
Robert Hayes
 
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Re: Newbie here to this forum...

Postby Robert Hayes » Sat Apr 07, 2012 9:39 pm

Weeelllll. it's been a while... the LE has become much worse here, and I was FINALLY taken into the LE program here in Topeka, GArments have been ordered. we go to more education on MONDAY. Since last here,I was hospitalized one more time w/ enterobacter infection which has colonized in both legs. The LE started getting MUCH worse 3-4 weeks ago. Swollen 24/7 and I take Cinryze,1000 units into my port by self infusion every three days (@ $130,000 per month) for the HAE. Now I cannot really tell ANY early warning signs 'tween the infection, LE or HAE. AM w/o a clue where all this is going,... but if anyone happens to run across a good immunosuppression system for sale CHEEP, please direct them my way??? THANX!!
Robert Hayes
 
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Joined: Thu Jul 15, 2010 10:29 pm

Re: Newbie here to this forum...

Postby patoco » Sun Apr 08, 2012 6:10 am

Hey Bob

Good to hear from you!!!!! Was also glad to hear you have gotten into a treatment program. Hopefully, things will now progress better for you.

Enterobacter can be a very nasty infection and what is scary is that you can literally pick it up anywhere and especially becoming more common with antibiotic resistant strains.

Warning signs are difficult too, Robert, as they vary so much from person to person. My warning signs of an impending infection/cellulitis include an all over achiness (like the flu), craving heat, total washout on energy. One other thing is that I notice my emotions become very up and down. So if I feel very depressed with no apparent reason, I immediate suspect an infection (what is a moody Irishman to do anyway :?: ).

Keep going, my friend. Remember, cuss, slam a door or yell, but never ever give up....no matter how tough it seems.

I have to remind myself of that too, frequently now days, it seems.

Pat
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Re: Newbie here to this forum...

Postby Robert Hayes » Sun Apr 08, 2012 3:09 pm

Pat, what is going on here now sounds too much like what you just described!? I have an appt in the garden w/ my onions for a bit but shall return w/ some maybe helpful info ? Thanks for the welcome back!!!???
Robert Hayes
 
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Re: Newbie here to this forum...

Postby Robert Hayes » Sun Apr 08, 2012 4:29 pm

Okay, here is what I have put together: late last faLL, i STARTED GETTING CHILLS AND SHAKING ALL OVER(sorry,that damned caps lock!) This went on for weeks and I finally spoke with my PCP around Nov 1 He listened to my suggestion about a blood panel. ( BTW Had a NEW port put into my chest a year ago for infusing the meds for the HAE)... The hosp drew 20 ml of blood from my port then 15 min later 20ml from the back of my left hand as a control.As usual they put 10 ml of sodium chloride into the post. I returned home and w/ in 3o min became violently ill. ( seems that every time I infused my meds I got sick.Was beginning to blame my meds.) Called the emergency # for the doc, said it sounded like infectionThat they would have blood panel in the morn. They called back next morn telling me to get to the surgeon at once as the port was infected, I showed up surgeons office to have the procedure done. Surgeon had been on the phone while I was waiting, then came into treatment room saying we were way past the port removal point that I was totally, systematically infected w/ pseudomonis and I would not live to nightfall if I did not beat feet across the street to the hosp. I was already becoming aware my thinking was getting screwy, but left to get inpt and the I V started w/ antibiotic. Took me 45 min to find my way across the street. I was already falling into sepsis. After a week they pulled the port out and installed a picc... went home w. the PICC and kept it for 6 weeks then back in to have a new port installed just after JAn 1 of this year. After that little round o crap I began to notice the LE getting worse. TrIEd staying w/ the support hose but it made NO difference. I was number 7 on the wait list and due to the severity that seemed to be taking place, the HAE AND the everpresent Enterobacter infection which had colonized in me (Both) legs, they graciously moved me up to begin tx for the L E. It looks like I hit the Trifecta... with HAE for life, enterobacter infection for life AND L E as the third "Cherry on top" If there are others on here in the Topeka area, I'dLOVE to pick your brain...?I can use all the info I can get as to wa=hat I can expect w/ all this "stuff". Any thoughts or.....?
Robert Hayes
 
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Re: Newbie here to this forum...

Postby Robert Hayes » Sun Apr 08, 2012 4:47 pm

patoco wrote:Hey Bob

Good to hear from you!!!!! Was also glad to hear you have gotten into a treatment program. Hopefully, things will now progress better for you.

Enterobacter can be a very nasty infection and what is scary is that you can literally pick it up anywhere and especially becoming more common with antibiotic resistant strains.

Warning signs are difficult too, Robert, as they vary so much from person to person. My warning signs of an impending infection/cellulitis include an all over achiness (like the flu), craving heat, total washout on energy. One other thing is that I notice my emotions become very up and down. So if I feel very depressed with no apparent reason, I immediate suspect an infection (what is a moody Irishman to do anyway :?: ).

Keep going, my friend. Remember, cuss, slam a door or yell, but never ever give up....no matter how tough it seems.

I have to remind myself of that too, frequently now days, it seems.

Pat

Your laying out the warning signs is pure gold Pat... Deeply, THANK you!! Smack on target here!!
Robert Hayes
 
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Joined: Thu Jul 15, 2010 10:29 pm

Re: Newbie here to this forum...

Postby Robert Hayes » Wed May 09, 2012 2:19 am

Leg wrapping continues. Therapist seems to think we are getting the built up stuff out.. Get some really strange referral pain when she massages hip L G I get super sharp shooting pain in R shoulder down to R elbow. Where it was damaged in Viet Nam... Then I get pain so sharp in replaced L knee when she does the other side.The pain is so sharp I can tell exactly where the ends of the artificial knee are driven into the bone. Almost having too much fun here? Almost ready for new wraps. excited about that too... Donchya' love these life sentences of the infection, HAE and LD... Did I hit the trifecta or what??
Robert Hayes
 
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