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  • I met with the surgeon about the spleen.

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    Old 04-08-2005, 06:01 PM   #1
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    I met with the surgeon about the spleen.

    Many of you have been so incredibly supportive since I began attending "these meetings" as I have inquired about my own HIV+ status and the recent issues regarding my spleen. So, today I had the appointment with the surgeon and I try to be brief: basically the spleen has nearly doubled in size in a year and a half. We learned of these changes because of the issues I began having with my hemoglobin which dropped to 6.6 (usual highs are 12-14). I was transfused once in Dec. and once in Feb. and a week after the transfusion I was infused with iron at the prescription of my hematologist. As I understand it, my white blood cell count is 1.3 which is pretty low. Even the surgeon was surprised that I have never been ill in the eleven years since I was first diagnosed. (My viral load remains undetectable and my T-cell count has never been above 200.) The fact is that the spleen, I think, is stealing the good white blood cells and that's why the overall condition maybe perilous.
    SInce I work in a large trauma center, I have access to doctors and library materials so I have a fairly good sense of what's going on and which doctor/surgeon to stay away from and which ones to see. This surgeon was recommended to me by the Chief of Staff who is a close friend and my former PCP who is not doing an ER Fellowship. (My new PCP is OK but I don't think he has a handle on HIV so I'm relying on him to contact the doctor who first diagnosed the HIV issue and they can partner that.)
    The overall prognosis is scaring the crap out of me. First, I thought he could do the surgery laparoscopically but, because of the size, he can't. Thus, huge incision, longer recuperation time. Second, because of the white blood cell count being low, there is a possibility of infection and I know all about hospital-based infections; they can kill you! Third, I am truly a chicken about this - while I've worked in hospitals for nearly twenty yrs, I hate the idea of being a patient. Can stand the thought of being vulnerable and needy and despite the haunting past, am much more of a prude than even my grandmother so the thought of people seeing me naked and asking personal questions freaks me out.
    So, if anyone knows anyone who has had their spleen removed (preferably those who have survived) I would love to hear from you. And, as you all seem to do so well, keep me in your thoughts and prayers...cflas. (chris)

     
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    Old 04-08-2005, 06:26 PM   #2
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    Re: I met with the surgeon about the spleen.

    Well...i've never had my spleen removed, but I can offer you some words.
    It sounds like you're in really good hands as far as your surgeon goes. It's not as though you picked him at random, someone you trust recommended him. With that being said, it can help take the edge off. Your body seems like it's going to fight this thing out, and come out winning in the end as it has been. You've been healthy for more then 11 years, so I don't think now's going to be the time you're body gives up, you're a fighter, and it's very evident. Just go in there stronger then ever, and don't worry about them seeing you naked, just picture them naked! I'm almost positive that everything will be okay...and of course, I will be praying for you! When are you going in???

     
    Old 04-08-2005, 07:01 PM   #3
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    Re: I met with the surgeon about the spleen.

    thanks for your kindness...I have to go back to the surgeon in two weeks after he talks to the hematologist. Then, I'll know...And, yes, you all have become good friends, I will let you know when this all goes down (...or comes out). bless you...

     
    Old 04-08-2005, 11:09 PM   #4
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    Re: I met with the surgeon about the spleen.

    cflas--

    i have not had the opportunity yet to welcome you here to the healthboards. i am very glad to see that you feel comfortable to get some support here, and i am equally impressed with your ability to counsel others. i have been here for quite some time now after i went through hell with a HIV/AIDS related illness after the birth of my 1st son in 2003. i am however negative, but the doctors had a hard time swallowing that as they have only seen the particular illness i had in a normally healthy patient 4 times in 20 years, me being the 4th. so in a way i do understand somewhat what you are going through as far as having this complication and not knowing what may transpire. i can also relate to your fears about recovery in a germ infested place. i have a lot of information on homeopathic remedies and ideas that could aide you in healing possibly, body and mind. i have been through the ringer in the last 3 years health wise so i can also offer my support in the overall category of "this sucks"

    you are doing a lot of good for the people here that are so afraid for their life because of a possible exposure. thank you for your help. if there is anything i can do, please let me know and once again, WELCOME!!!
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    Old 04-08-2005, 11:27 PM   #5
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    Re: I met with the surgeon about the spleen.

    Hmmmm ........." Preferabely if they survived" .....
    Well anyways .... Do you like boxing ? I've always been a fan of mohamad ali . Fly like a butterfly sting like a ......... Well that's another story. What round are we in now ? I would have to say 7 and 3 more to go .
    Round 8 - see the hemotologist and surgeon again in 2 weeks
    Round 9- set a date for surgery
    ROUND 10 - go through with it
    For all who read this thread let me give you some insite into what the spleen does .
    The spleen is considerd the largest limph organ . Blood is passed through and strains through layers and sinuses inside the spleen where the cd4 cells (T-CELLS) and macrophages wait inside a pulpas material to destroy dead red , white blood cells and platelets and other foreign material like pathogens . In humans the spleen does serve many functions in filtering the blood but it is not a nessascary organ and if it is removed the missing functions will be picked up by the
    Liver , bone marrow ,
    And the kidneys . So what I'm saying you can live without you're spleen if it is removed .
    Like I said to you in you're last thread and I also suspected in our first post to post conversation you're spleen is damaged , swollen and enlarged and now totaly defective and it is engulfing hemoglobin , red , white blood cells and even platelets .
    It is (so to speak) eating you're good celles and using them to destroy it self and take you with it .
    Now before you stand at the gates of hell writing you're will out .
    There are (and I'm sure you already know this) standards and guidelines for handleing hiv/aids patients and other immune surpressed individuals to prevent secondary infections ( like isolation from other hospital population) and you will probably be started on a course of antibiotics befor,during,and after surgery . The hemotologist may tranfuse and infuse you again to help bring you're platelets,iron,and also hemoglobin back up to (at least ) near normal levels or better .
    You can live without you're spleen in humans it is not an absolutely vital organ and the liver , kidneys , and bone marrow will pick up the slack with no problem ( that's why I was asking about liver and kidney function befor) a trama surgeon would be the wisest choice for this kind of operation because of skill and experience .
    I'm sure you're scared to wits end and if we could we would give you the BIGGEST HUGGGGGGG !!!!!!!!!!!!!!!!!!!!!!!!!
    But a few smilies will have to do
    My hope , prayers , and love are with you
    In you're hours of darkest of despare
    Keep the faith - be strong and most of all
    KEEP FIGHTING !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!
    You're friend ......................
    .................. Lost Spirit .........................

     
    Old 04-09-2005, 05:32 AM   #6
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    Re: I met with the surgeon about the spleen.

    Dear Everyone! It's morning! The sun is up, the birds are glustering at the feeders we have set up be the kitchen window, and, for whatever reason (which makes no sense since I live my life by prescribed expectations rather than surprises) I have a wonderful night's sleep. I thank each and everyone of you for you thoughts, prayers, and good light.
    In one of the books I am currently reading (KEEPING FAITH - A SKEPTICS JOURNEY by Fenton Johnson) (I am also reading the fourth Harry Potter book so that I can read the fifth before the sixth comes out in July!) I stumbled across this which I have underlined in red, strung stars and arrows along the margins, and will, probably, highlight in yellow: "The writer and religious historian Joseph Campbel reports how, when the knights of Kind Arthur's Round Table went in search of the Grail, each entered the forest at the darkest place of his own choosing - each knight knew that the greatest rewards lay hidden in the most fearful place."
    That triggered for me one of my favorite seens from the movie CAMELOT. It's when Merlin and Arthur are walking together and Merlin turns Arthur into a hawk. As Arthur soars above the woodland, Merlin shouts to him: "Arthur? What do you know as a hawk that you did not know as a man?"
    Again you guys are the best! Lost Spirit - I really like your analogy and will keep your thougts with me...please continue this friendship. Nyxin - you too. Let me know about the homeopathic information (especially for the spirit because that seems to languish more than this discrepit body of mine). And panaSONIQUE - bless you.
    More later. chris

     
    Old 04-09-2005, 06:10 AM   #7
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    Re: I met with the surgeon about the spleen.

    Chris/ Cflas, you are an amazing and strong person, yes I dont know u but ur words say so much about u. Ill be honest I dont know anything about wat u are going through, the thoughts u might be thinking, or the actually surgery itself, but I just want to say that u are in my thoughts and prayers. Panasonique is very right in saying ur a fighter, ur strong, and u will get through this, prayer is a very powerful thing, and u are in many peoples prayers. God works in strange ways and we will never quite understand why he lets certain things happen but he has a purpose for ur life Chris, God never makes us face anything he knows we cant cope with, so u will get through this.

    May God Bless u and may u stay strong!!

    Living in hope (Alicia)

     
    Old 04-09-2005, 07:18 AM   #8
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    Re: I met with the surgeon about the spleen.

    i don't know what kind of sense of humor you have chris, but your story reminded me of monty python's in search of the holy grail. ......"bring out the holy hand grenade".........

    as far as the natural stuff, look up amino acids. they can do wonders on the mind as far as keeping you sane. i will write more later-- i have a 21 month old and a newborn and they are both needing me right now. have a great day!!!!
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    Old 04-09-2005, 11:16 AM   #9
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    Re: I met with the surgeon about the spleen.

    nyxin: I'll search about the amino acids. Humor? Certainly MOnty Python...always on the side of the bizarre...English at times...slapstick? always. But of all things, I think I love laughter mostly... Take care of your wonderful babies...more this evening. chris

     
    Old 04-10-2005, 01:13 PM   #10
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    Re: I met with the surgeon about the spleen.

    Hi cflas I just wanted to let you know that I had my spleen removed 2 1/2 yrs ago. I was in a major car accident so they were not able to remove it laproscopically. I had the huge incision from pubic area up to the sternum. I am doing well. I do seem to get colds easier, just make sure you get your pneumococcyl and meningitis vaccines. I am not HIV+, but i just wanted you to hear from someone who had their spleen removed and survived. I know you will be ok, you seem to have a very strong immune system. If you have any ?s about the surgery don't heisitate to ask me.

     
    Old 04-10-2005, 08:31 PM   #11
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    Re: I met with the surgeon about the spleen.

    Dear cahcinderella: I have tons of questions...I met with the surgeon on Friday and the more we've talked about it, the less I am comfortable with him. A friend at the hospital where I work, as well as "lost spirit" here have recommended trauma surgeons becuase the remove so many spleens. If you'll let me formulate my questions, I will get back to you tomorrow as it's really late here now. How long were you in the hospital recuperating? thanks, so much - cflas.

     
    Old 04-10-2005, 10:17 PM   #12
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    Re: I met with the surgeon about the spleen.

    I don't blame you're for being afraid of hospital infections and recovery time and the sooner you get outa there the better .
    The bacterial infections can be prevented by antibiotics but the viral are mainly what you need to worry about .
    With you're white blood cell count so low you need to build them up again .
    If you want to try a health store I would recomend ( and I also use these )
    Alpha lipoic acid
    Seleniam
    Thymas glandular
    Cats claw
    Vitamin c
    Ip6
    Milkthistle ( for the liver)
    And a deep organ cleanse (they sell capsuls )
    I hope this will help you

     
    Old 04-11-2005, 06:38 PM   #13
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    Re: I met with the surgeon about the spleen.

    Dear Ls, myxin, livinginfear - all of you. You have blessed me in incredible ways. I trust you know that.
    LS You need to know this about me - I believe almost everything. If you suggested that I chew on a chair leg, eat a weasel, or smoke bamboo chips I either have already done it or would intend to the very next chance I get. I appreciate the advise regarding the list of herbals. Will the vitamin/herb guy know what dose to take and will these interfere with my meds - Agenerase, Epivir, Viread, and Norvir. (Also Toprol XL, Pravachol, and Prevacid.)?
    Certainly, the most frustrating things is that the doctor who first diagnosed me (and who kept me alive) is not practising for the moment and does education. The only surgeon I trust in now practising in North Carolina. And, my most recent PCP, is doing an ER Fellowship.. So, my PCP is new (although he keeps in contact with both of old PCPs). I spoke with the surgeon (now in NC) and have faxed everything to him. But I still feel less certain of the new docs whcih has just about shot my anxiety through the roof. (Which, right now, is the only thing getting off.)
    OK, I will stay calm...I will focus on my inner self...I will put Faure on the CD player. Thanks, as usual, for everything.

     
    Old 04-11-2005, 11:29 PM   #14
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    Re: I met with the surgeon about the spleen.

    Yes you are right ........
    I've tried chewing table legs myself and got nowhere with it but hmmmmm bamboo chips you say ?
    Well any ways whatever the outcome ( YOU OWE ME A STEAK )
    All kidding aside I hope you are well , strong , and a bit calmer .
    You seem to be a lot stronger than you give youreself credit for and my advice to you is when there is no one else to turn to turn to god . He always answers in 1 way or another and it is realy in a way up to us whether we hear him or not .
    I've been a bit under the whether myself and I don't think ill be back for a while but even still ............
    MY HOPE ,PRAYERS , AND LOVE IS WITH YOU
    KEEP FIGHTING .................
    ............... Lost spirit ...........................

     
    Old 04-12-2005, 03:48 AM   #15
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    Re: I met with the surgeon about the spleen.

    Dearest Lost Spirit: Remember I owe you a steak! So, what's going on? Tell me about your illness? What's happening? YOu are the first person I connected with here and what ever's going on with you I know that it just may be your time to accept the love and caring that you have so graciously and generously shared. Write back. love, chris

     
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