Really nasty doctor makes it worse

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Really nasty doctor makes it worse

Postby Teddi » Fri Jul 28, 2006 10:40 pm

I joined the group yesterday but I'm not really familiar with how these groups work and I guess I put my story under the wrong heading.

Anyway, I have had lymphedema in both legs for about three years but looking back at it, I think it's been much longer - it was only three years ago that the leaking and sores started. Let me back up a moment and tell you that I weighed about 200 pounds when I got married 30 years ago and was still about that when the lymph started. I was a dancer when I was very young and in my 20's and 30's I skied, skated, rode my horse, traded stable mucking for board, swam constantly every summer. In other words, I have always been very physical.

I should also mention that I was born and raised in NJ, moved to Fl in 1973, met my husband and married him in 76. We lived in Hawaii for about 7 years and then San Antonio, Tx for another 7 and no, we're not military - just love to travel. My husband was born and raised in Iowa and we've lived here in rural IA for about 16 years now. Which is why there are very few resources available.

When the lymph started, I went to my doctor. She sent me to a "lymphedema clinic" about 35 miles away. They wrapped my legs and showed my husband how to do it but said that they could not treat me because at the time, we did not have insurance. Nothing we did helped the legs and they leaked so much that I was using 6 sanitary pads taped together to soak it up and they had to be changed four or five times a day.

I noticed that I was gaining weight so I went on Atkins on Jan 1 of 2005 and lost about 100 pounds in a year.

I had applied for disability and it took about a year but it was approved and I was also granted medicaid of Iowa. So I went back to my doctor and she said quite honestly, that she did not know what to do for me but she made me an appointment at the univ hosp in iowa City which is supposed to be on the cutting edge. I should back up and tell you that
around January, I noticed a growth starting on my inner thigh - it was about softball sized when I went to the doctor and she said - I think they'll want to remove that as well which made me very glad as it was uncomfortable to say the least.

Unfortunately, several days prior to my scheduled appt in Iowa City, I became very ill - chills, fever, nausea - the whole 9 yards. My husband had never seen me so sick and he called 911. He tells me that they took me to Mercy in Mason City but I don't remember that at all - he says I was there one night and the next day they put me back in an ambulance and sent me to Iowa City which is about 150 miles away. I don't remember the ride and I don't remember being put in a bed and having all kinds of tubes attached but i do remember that from time to time i experienced major pain up and down my spine and across my shoulders. Long story short, i was there for 4 weeks. My kidneys had completely shut down, liver function was off the wall and I had a raging blood infection. They managed to fix me up - 6 teams of doctors from different specialties. And someone had the bright idea to bath my legs twice a day with ascetic acid and then put a liberal amount of Silvadean cream on them and then cover with gauze and wrap. By the time I was aware enough to notice, the leaking had stopped completely. But, I overheard the nurses talking one day when they took my weight from the bed scale and they said, "504 pounds." I freaked - where had it all come from and in so short a time. I had been unable to so much as look at food and was getting my main nourishment from the IV. The main doctor told me that it was water that I had retained from when my kidneys were shut down. My immediate question was, how do I get rid of it - can I go right back on my diet?? They said no, I had to eat to heal and too much protein is hard on the kidnes - wait, they said until you are stronger. The surgeons came and looked at my growth - I begged them to take it off - they said not while you are still weak. See us when you are stronger.

I was finally transferred to a nursing home for another three weeks while I learned to walk again. Which was not easy with that lump between my legs. When I got home I had a home nurse once a week but no physical therapist (ins parameters). My husband has taken great care of me although he sometimes gets impatient with all of it. He works at home on the computer now so that he can be with me in case I need help. And I am learning to do the same job. But the lump has grown to basketball size and is so uncomfortable it makes me crazy. So back to the doctor I went and again she said she really did not know what to do about it and I needed the big dogs in Iowa City. So she made an appointment.

I was having a really hard time trying to get into the van - cannot climb even the smallest step. So Michael (my husband) designed a ramp that I could walk up, then turn around and sit.


We finally got down to Iowa City - not an easy task. M put the mattress from the hospital bed in the van and set up the ramp so I could carefully climb up and turn around and sit down on the mattress. Then he took my legs and turned me around into the van. It wasn't terribly comfortable...but it worked. We left at 6 am and got there about 10 for a 10:15 appt.

He took me out of the van and put me in the wheelchair - which is not easy to push with me in it! We registered and they directed us to Internal Medicine which I swear was a mile away through overpsasses and underpasses and myriad departments of this and that. We got lost twice but finally found our way.

The first doctor we saw was a Dr. Flanagan. Very nice - seemed quite concerned. Was somewhat at a loss as to what to do for me. He called in a second doctor whose name I do not remember. She was also very nice and assured me that they would find a way to help me even if they had to brainstorm for a few days to come up with a course of action. The two of them decided that the first thing was to do another blood workup to make sure that my kidneys and liver are still doing good. They also said that the first thing would be to consult the surgeons and get something done about the growth. I was so happy to hear that because its so terribly uncomfortable and although I need to have the excess water weight drained, the lump is first in my mind because without it I could walk, exercise and do lots of things that I can't do now which I think would help toward getting rid of the water. I explained how it had come on so fast and they were both in agreement that a solution needs to be found. They got me an appointment with general surgery for later in the day which they said was a minor miracle and then decided that I should have another ultrasound so surgery would have updated information. So after a guy came in and took a ton of blood, it was off to the ultrasound lab.

So far so good - the ultrasound was easy and we did not have to wait around much. The lab was way back in the other end of the hospital so poor Michael had to push me about another mile.

After that, we had the appointment with surgery. The first woman who came in listened to the background and checked the lump and said that yes, indeed it needed to come off but she said that she is a young surgeon and had not seen one of these before that was this big and wanted to consult her boss. So in a few minutes another somewhat older woman came in and she agreed but said that it could be a problem getting it off successfully. She was worried that it would take forever to heal and might not for a very long time. She said that she needed to get one more doctor in and I said fine.

At that point a young surgeon came in who looked familiar - he said he had seen me when I was in the hospital in March but only for a couple of minutes. He wanted to look at the lump which was fine with me but as soon as he started, the other surgeon came in and he ran out saying that it really wasn't his case.

A much older man came in - looked at the lump and said that it would certainly infect and kill me one of these days. I said, "well doesn't that make it imperative to get it off"? He said, "Well, we always have to weigh all the factors - and maybe it's better to leave it alone - I said but it will kill me - he said yes it will!" I said , "what about liposuction - would that work?? He said, "are you rich? Liposuction requires cash on the barrelhead and lots of it! Then he said, "besides, I don't know how to do it"!
He then said - it is a very high risk to operate on someone your size anyway - and i said, well isn't there a way to get the water weight off and then I will be a much more manageable size. He said, "nope and then he said - "you're problem isn't water or the lump, it's fat so just shut up and stop eating!" At that point, Michael chimed in and said, wait a minute - she doesn't eat much and this weight came on during the four weeks she was in hospital. He said, "I don't believe you - so again just shut up and stop eating. At her age, he said - she needs very little food. As a matter of fact, she could go without for a long time. Michael said she has to eat or she'll die - and he said well, not for a while! Michael tried to point out that all of the gain was around my hips and butt and belly and I am much smaller from the waist up - but he wouldn't listen. Michael also told him how I spring leaks from time to time and the excess water spurts out of my hip. His answer was well, maybe there's a little water but the rest is all fat!

I said check my hospital record, it will tell you that I came in at one weight and was over 200 pounds heavier when I left. You just don't gain a couple of hundred pounds in four weeks! It will also tell you that they had a lot of trouble even getting me to eat at all and Dr. Daniel kept telling me that I had to eat to get enough nutrition to heal. But I found it very difficult to do. Michael then said, this is true and I prepare the meals and she doesn't eat much at all. He said, I don't have to check anything because I don't believe you. Just lose weight - I came back at him and said , "how???" He said just stop eating - I said what about bariatrics and he said oh, I know they have that here but you probably wouldn't be a candidate anyway!" Then the other doctor, the woman said that my blood work showed that the kidneys were good and I could do Atkins again if I wanted to. And the old guy said oh, they're all the same - just keep your mouth shut and don't eat. He then said - lose some weight and come see me in two months and he left the room.

Michael was pissed and I was in tears. We got no help and I know that this will kill me if something is not done. If I could only get rid of the lump, I could walk and exercise and start to get some muscle tone back - but we got absolutely no place with this opinionated - fat phobic - excuse for a doctor! And they all acted like it was him or nobody. I don't know what to do next and Michael is in a foul mood. I wept most of the night after we got back... and then things got worse.

Wednesday the internist, Dr. Flanagan called. He said the lump could not be removed surgically - that he had talked to the head of surgery and they declined to operate. I again asked about liposuction. He told me that liposuction only removes fat and the lump is not fat, it was caused by the lymphedema and is full of lymphatic matter. I said are you telling me that this is going to kill me? And he said, yes it will and I give you maybe a year. He said the only things I could do to possibly prolong my life would be to lose as much weight as possible and to swim every day. I can go back on Atkins but I defy you to find me a pool in rural Iowa - especially one that would be possible for me to climb in and out of. I'd need a hoist, for heaven's sake.... and I do not have a bathing suit - or any clothes (save a very large dress and some nightgowns) that still fit me. I could get one made but it would be very expensive and we do not have money. We do our best to keep body and soul together but it isnt easy.

So that's it - that's where I am - 62 and they are telling me that I will not see another year. Talk about depressed. At least I had the presence of mind to get on the web and found this site. Thanks for listening.

Teddi
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Location: Marble Rock, Iowa

Postby patoco » Sat Jul 29, 2006 2:00 am

HI Ya Teddi :)

Nawwwww...now everyone tells me I gotta stick around...so if I do, you do too :!: :!: :wink:

Not gonna give up on this for you.

Here is a page of Vodder therapists in Iowa:

http://www.vodderschool.com/find_a_ther ... tate=IA%20

Here's the therapist page for Iowa from the Klosa school:

http://www.klosetraining.com/pages/dire ... p?state=IA

You can go to the other therapist pages on the Schools of Therapy page under the index Therapist on the left.

Please...make an old lympher (me :wink: ) and contact one that is closest to you.

Teddi, have these doctors told you what they think this lump is specifically?? have they mentioned any names like lymphangioma...lipoma...or anything else? Let me know and I''' do my darndest to find out some info for you.

Big hug to Ya

Pat
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Thank you so much for the info.

Postby Teddi » Sat Jul 29, 2006 8:12 am

Thank you for the information and I will start contacting them right away.

No, they have not said any of those names for the lump. The one doctor, Flanagan said that it is caused by the lymphedema and full of fluid at the cellular level but not free flowing so it can't be drawn off with a needle. I really do not understand what it actually is - I only know that it is huge and hard and very uncomfortable. And if it wants to eventually kill me, it is my enemy and I would do almost anything to get it off.

It is my understanding that the disease itself, although without a cure, is not normally life threatening - that my problem is the lump breaking down and infecting - does this sound logical to you?

I really can't believe these doctors just throwing me away and not even trying to get me any kind of help or therapy at all. I'm still in shock that they basically said just go home and die and don't bother us again. Where is their hypocratic oath? and at the very least, where is their humanity?

Teddi
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Location: Marble Rock, Iowa

May I ask a question?

Postby Teddi » Sun Jul 30, 2006 5:08 am

Actually two questions - one, is it true that le will prevent healing? And has anyone here tried any alternative medicine, i.e. acupuncture? herbal remedies? healing hands?

Teddi
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Location: Marble Rock, Iowa

Postby silkie » Mon Jul 31, 2006 10:15 am

Hi Teddi

And welcome sorry I not talked to you before
life and limb go hand in hand and i have been Mom the fixer for the last
week or so


I read your experience with doctors my heart goes out to you
and your husband. There are so many of us that are treated badly and with total lack of any compassion


I feel if anyone has got good advice it will be Our Pat he is amazing our rock many times

The lymph does hinder healing, that is one reason why we try to keep
infection free the fluid on the skin has a corosive effect

any perferation of the skin can lead to infection

Aquapunture is the perferation of the skin and i would not risk it personally
there is information pat has put in on berbal, aquapunture alternative remedies

There is no cure hun no fixing this only having some control
MLD skin care massage wrapping support garments do help an aweful lot

i have lost litres of fluid with every day care first by the therapist and then by self care

but each day we make more fluid so each day the fluid must be helped to be removed and the best way is manual lympharic drainage (a special massage for lymph)

I do think lymphadema theropist like pat suggested is the best way forward

I hope you find one soon i was amazed by the changes that happened to me quickly

I also know a young woman that went into a vodder clinic for three weeks intensive therapy and it was a success that she continued on coming home


Huggggggggggggggggg

Silksssssss
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Perhaps there are other alternative med remedies

Postby Teddi » Mon Jul 31, 2006 11:47 am

If not acupuncture, maybe acupressure possibly? And if it were just the swelling and occasional leaking, I could deal with it - but I have become so big, it's very uncomfortable and i can do hardly anythng without help. And my biggest problem is this lump on the inside of my thigh - it's so big now that I can hardly walk at all and even urinating is difficult because the lump is in the way. It also creates folds where it is attached that I have to keep very clean so as not to get sores and possibly infection.
Teddi
 
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Location: Marble Rock, Iowa

Postby silkie » Tue Aug 01, 2006 2:54 am

Hi hun

the Wrapping does reduce

My friend was done fully 24/7 and physio 3 times a day
i remember she actually did get it thru her insurance

i am talking 100 plus weight loss in the time she was in treatment

three weeks in all this was nothing except diet wrapping physio massage
intensive mld

The following Summer she addressed a vodder conference
on her treatment and stay

i will see if it is ok to give you her e mail addy i think it may help to
talk to someone that had many similar problems if you wish me to

Hugssssssssss

Silks xxxxxxxxxxxxxx
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email address

Postby Teddi » Tue Aug 01, 2006 3:23 am

Yes, thank you - I would love to speak with her. I feel so alone right now. My husband is not demonstrative either emotionally or physically and is incapable of comforting anyone and living here at the end of the earth where i have no friends I can use all the support I can get.
Teddi
 
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Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Postby JonquilJan » Sun Aug 13, 2006 10:08 pm

Teddi

I was released from the hospital the end of February with a less than 1% chance of living 6 months (I had Hodgkins disease). That was 1971. Doctors don't have all the answers.

I have recently (June) gone through a terrible experience with a cardiologist - who blamed all my problems (Lymphedema, heart pains, fainting) on my weight. I stood up to him for the stress test - refused to get on the treadmill (my gait is very uneven and my Physical Therapist told me not to) and eventually told him if he wouldn't treat me entirely chemically, the 2 IV's could be pulled right now and I will walk out of here. The stress test was done entirely chemically (nothing wrong with my heart).

I had given up entirely for years - been told many times there was nothing that could be done for my lymphedema. Been through the compression boot therapy, debulking surgery, dozens of hospitalizations for cellulitius attacks.

I am fortunate that I have found a Physical Therapist - who is not treating me for lymphedema - who doesn't judge me (or anyone else) - listens to me - tells me the truth - and has had startling results with reduction of my lymphedemous leg - without specifically working on that problem (working on strengthening and conditioning after I fainted in January and subsequently went downhill physically and strengthwise).

Keep asking - tell insulting doctors they are fired - don't settle for anything other than the honest truth.

Jan
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Postby Teddi » Sun Aug 13, 2006 11:41 pm

Jan - thank you for the supporting words. I only wish that I lived somewhere civiized! My ins is only good here in Iowa and in this state the first and last word in medicine is the "big dogs" at th Univ of Ia Hosp. It is supposed to be on the cutting edge but I have been treated shabbily and told basically to go sit in a corner and die The therapist that I finally am going to does not know much about primary lymphedema - these people are only used to dealing with secondary le and again, although she does not blame my weight for the le, she has very few ideas on what to do.

Please read my last post in the Welcome Family category and you will see my dillemma right now. I feel as though I am tied up and can only look but not reach the sunny day that i know is out there!

Thanks again, Jan - I am so pleased to meet you.

Teddi
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Postby joanne johnson » Tue Aug 15, 2006 9:55 pm

Hi Teddi,

I was reading your last post. You mention that your therapist has more experience with one type of lymphedema rather than the other. It makes no sense as the treatment is the same whether the lymph is primary or secondary. Maybe she can explain that to you. I sure am curious myself. Let us know how you make out. Best wishes toyou!
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Postby Teddi » Tue Aug 15, 2006 11:05 pm

So far she hasn't done much other than to advise lying flat and raising my belly off the groin. But she admits that she's never seen a growth like mine before. She tried to wrap it last time and said it would probably fall off which it did. I really think I need the massage and to be taught how to do it at home but she said it would do no good until we can get the growth reduced and she hasn't a clue how to do that unless we can somehow bring compression to bear. That's what she was trying with the wrap but it is a difficult shape to deal with. My husband has decided that I need some sort of a bag affair to go around it but he hasn't come up with a difinitive design yet and when he does, he may be able to coach his mother in sewing it but she is in her 80's and doesn't really grasp anymore. And I never could sew. We live at the end of the earth and I have tried before to find a seamstress with no luck. I really think my best chance is to go to the Mayo - BUT, they won't take me without some insurance coverage and my insurance is only good in Iowa.

Teddi
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Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa


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