50th Hospital visit. Infection

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50th Hospital visit. Infection

Postby cjhurt92 » Thu Nov 03, 2011 6:25 pm

my names carlos i'm 19 its been awhile since I posted on LP forums. I have had Lyphedema for 7½ years First I had it in the left leg (inflammed by spider bite, thats how i was diagnosed) I had dozens of cellulitus infections from 2004-2007 the doctors at Loma linda University in California (wonderful hospital) strongly suggested for me to have they Lymphatic leg amputated. after a month long instense consideration i decided to go threw with it. I had the surgery Oct. 5 2007 at U.C.L.A medical center. The surgery was successful they above knee (leg weighed 85 pounds , My wound healed within three weeks and i adjusted to amputation within 6months the remainder of 2007 and 2008 went well. The stump was still swollen but easy to manage things were great until Oct. 2008 the lyphedema spread to my Genitals I got numerous Cellulitis infections then its spread to abdomin I had 8liters of fluid removed! (now about 16oz a month). Then in November 2008 The lymphedema nearly drowned me to death, it spread my left lung collapsing the lung in November 08 and december 08. The surgicaly inserted a drain that automaticly drains lymphatic fluid into abdomin. It just seems to be a non stop flow of fluid from lung to stomach. They also inserted a interthecal pain pump wich gives me Diladid daily for my non stop pain in lower back, stomach genitals. the pain is so bad i also have to take morphine pills three times a day. thanks to God I am able to stay somewhat sane :wink: of course i get down every once in awhile but I seem to have been able to keep up my spirits.

I just wanted to (try) to give the shortest version of my story before i ask my "infection" question.
Sadly last week was my 50th Lymphedema related hospital visit and about my 35th "infection"!. The day i got the infection i had been out at mall for a long period on my wheelchair. That night i woke up at 3am With The normal Infection symptoms: chills, fever, Nausea/Vomitting, soreness and intense pain. I had mom call 9/11 (only do when i feel like i can't wait in ER) i was treated with anit-biotics and pain medication and the usual annoying cat scan, x-rays numerous blood test and of course the doctors who just don't seem to understand.

The odd thing is its been about 18 infections since it was diagnosed as a "cellulitis infection" now they can't seem to find out threw blood test and lymphatic fluid test. They always say the Blood test are all negative and Lymph fluid just has a high amount of protien. Pat C. (or anyone else) Do you Know what the heck is going on? When you get an infection what do your blood test show?

thanks ahead of time for answers and sorry for the spelling or grammar errors i am on cell phone.
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Re: 50th Hospital visit. Infection

Postby patoco » Fri Nov 04, 2011 10:33 am

Hey Carlos

Good to hear from you!!!!! :!: :!: :!: :!: :!:

Gotta tell you though I am still steaming about those doctors who wanted to amputate your leg because of lymphedema. Those guys need to have one of theirs taken off to see how they like it.

I did discuss amputation with a number of the most recognized lymphedema doctors in this country and they were all 100^% against amputation unless there is lymphangiosarcoma (life threatening cancer) present.

I too faced "drowning" with fluid in the lungs. I have Pleurx catheter tubes in each side and can hook up drainage bottles to the tubes. My concern about draining it into the ab is that the possibility that it may overload the abdominal lymphatics AND make the genital lymphedema worse.

Infections generally will not show up in the blood work unless it is systemic (in the blood system itself) - been through that a few times too. If you don't have an infectious disease doctor, you really should find one to go to.

Because I had such a problem with recurrent infections, I now take a daily "preventative" antibiotic. I went from being hospitalized with IV antibiotics to very very mild infections (and very few of them). The preventative antibiotic can be a real life saver.

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Re: 50th Hospital visit. Infection

Postby cjhurt92 » Fri Nov 04, 2011 2:59 pm

Yes exactly :!: Yeah Pat It was actually Dr. Emily Iker From Santa monica who recommended It :? .
I am going to definitely take that advice and see an Infectious Disease Doctor. sometimes these silly doctors just think its in my head and i don't really have an infection i nearly have to be dying with High fever, high heart rate pukining my guts out :!: .
Sad to hear you also having the drowning feeling but its also good to know im not alone i thought i was just over reacting and the doctors didn't help insisting it was just anxiety, but i have an appointment next week with Respitory I have been fighting with them for years to get oxygen or breathing treatments for morning time. Thats when i get the Horrible drowning feeling. its not a fun way to wake up. Its not like im asking for oxygen 24/7 i just need it from at least 5am-8am when its bothering them most. but i will not take no for an answer this time :!: so please wish me luck or say a prayer for me Pat :)

Oh and by the way Pat i think i had told you awhile back that i had contacted Dr. Marlyes Witte of Tuson Arizona. A few people i had talked to online were not sure she was still seeing patients, but i talked to her Assistant and he said She is still seeing patients and she accepts my insurance. So i am trying my very best to go out and see her as soon as i can. the thing is her assistant did tell me off the record that she is coming towards the end of her medical career so he recomended that i do not wait long. so i am excited about that maby she can help I have heard great things about her and her late husbands work in Lymphedema.

so say a prayer for me pat and anyone else who can :wink: i will update soon.

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Re: 50th Hospital visit. Infection

Postby blubrdfrend » Mon Nov 14, 2011 10:43 am

Carlos, You are such a brave and patient person for one so young. I believe in prayer and you are on my list.
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Re: 50th Hospital visit. Infection

Postby cjhurt92 » Mon Nov 14, 2011 10:03 pm

Thank You Betty I truly think its the prayers that keep me going. thanks. :D
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