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  1. #1
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    Nov 2009
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    Smile Caregiver for SLE LUpus Pt./Fiance`

    B]Hello everyone,
    My Fiance`, Karen, will be starting Dialysis soon and we have picked Peritoneal(APD). Karen is a special person and her getting the best care is my first and upmost goal in life because I've witnessed alot of mistakes made by health care professional's in hospital's. This is because they carry an over-abundent work load. That's why I dedicate my love and my help taking care of my fiance` because she deserves the best care like everyone would want in their caregiver's/Doctors, etc... Karens been suffering from sle Lupus since she was 15. She was told(back in the early 80's), that she had 6 months to a year to live.
    She said " No Way I'm gonna subcumb to this illness". She is now 42. I feel fortunate to have, not only, be the one who gets to be her mate, but also, the one who gets to take care of her. I met Karen 11 yrs ago and everyday I'm still amazed by her strength and determination not to dwell on her illness. Her story is so amazing I get chills in my body just thinking about it. Karen will be starting Dialysis in about a month and we're doing at home. She's been through so much from what I've seen and what she has explained over the years such as: surgery after surgery, holes drilled in her hips and knees to promote blood flow, lens implants, IV infusions, implant port(s) in her chest (3xs) because she had problems each of the ports, weekly blood draws, sepsis infections and unfortunatly the latest fallback, she had a heart attack 3 weeks ago and put off the Dialysis. She thought it was a upper respitory infection that morning cause it showed all the signs, but she also had pain in her jaw, which for women, that a classic sign of an heart attack along with shortness of breathing and pains in the chest. Karen's throat was sore to and that's why she thought she was just getting the flu. She called her doctor and they said go to the emerg. dept. and the EKG confirmed that she was having one. She had to go to the cath lab and they found her right artery was completed blocked so they fixed the problem and inserted two (Drug-Induced) Stent's. She was very fortunate to have caught it when we did. No damage to the heart,thank god. This experience really scared her and she usually is very strong-willed. But who wouldnt be?.. One of the nurse's in the Cath-Lab said to Karen " your about to have this major surgery and your still smiling". I don't know where she finds all her strength, but like I said, she's amazing. But we got through this and the Heart Doctor just stopped her Plavix and in two weeks she'll have the cath-Line implanted in her stomache. I figure the best way to help her is to throw myself completely in(the forum) and get as much information as possible and possibly help other's along the way. Karen's "Will to Survive" story is to long to tell all at once but it's an amazing one. I look forward to being able to share more of her story and are grateful for any help understanding more about what to expect from this type of dialysis and how I can make sure that I'm giving Karen the best help that I can possibly offer.
    God Bless everyone and thanks for caring,
    Guy & Karen`]

  2. #2
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    Re: Caregiver for SLE LUpus Pt./Fiance`

    Best wishes to the both of you. My daughter has Lupus and I know how difficult it is. It makes me never complain about my CKD.
    I wish more people understood what Lupus is and how devastating it can be. Also find a CURE.
    Fifty years without one new medication!

  3. #3
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    Re: Caregiver for SLE LUpus Pt./Fiance`

    Thanks adpadp for your thought's. I hope you don't leave cause I think this site could be benificial for a lot of people. Maybe if it was run by the proper people, we could get learn a lot and help other's too. I do my best to contact the right people and call them personally at the DaVita offices cause good things shouldn't be wasted because of a few bad seed's.
    Hope to hear more from you.
    MdGuyS~

  4. #4
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    Jun 2009
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    Re: Caregiver for SLE LUpus Pt./Fiance`

    Hello MdGuyS. I don't know much about Lupus but it sure sounds like your fiance has been through a lot. Her courage and determination are to be admired.

    I am a caregiver also. This is a great site for support, education, etc. Wishing you both the best and looking forward to seeing your posts.
    "Life isn't about waiting for the storm to pass...
    It's about learning to dance in the rain. "

  5. #5
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    Re: Caregiver for SLE LUpus Pt./Fiance`

    Thanks looneytunes for your thoughtfullness and may I say " I love your caption that comes with each of your post, very inspirering (learn to dance in the rain)
    Best wishes,
    MdGuyS~

    here's a link to better understand Lupus:http://www.uklupus.co.uk/

  6. #6
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    Nov 2006
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    89

    Re: Caregiver for SLE LUpus Pt./Fiance`

    Hi how's Karen going? I also was diagnosed with SLE when I was 14- I was given 6 months to live. I've been on dialysis since 1969 without ever having a transplant. I am fortunate that my husband is my carer.
    We patients, need the support of people like yourself who not only offer physical but emotional support. Sometimes just being there is enough.
    Hats off to you. Home dialysis is the way to go as you are the ones in control.
    All the very best-Susan

  7. #7
    Senior Member
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    Jan 2009
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    371

    Re: Caregiver for SLE LUpus Pt./Fiance`

    Hey there!

    Just chiming in. I'm also an SLE person. Diagnosed in 1985, told I would likely lose all kidney function by 1992.

    I made it until 2009 before needing dialysis.

    (and my lupus has been quiet for years. Haven't taken a lupus med since the late 90s).

    Be well.

  8. #8
    Junior Member
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    Mar 2010
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    Re: Caregiver for SLE LUpus Pt./Fiance`

    I've been reading all the messages for several months hoping to find some help.
    I'm in remission from losing my L kidney to Renal Cell Carcinoma. I, too, have Lupus, Rheumatoid arthritis and a heart condition. In September I was referred to a Nephrologist in a town 3 1/2 hours from my home. He stunned me by telling me that my GFR should be 75 for my age but it's 26 and I'm in stage 4 Kidney Failure.

    I'm an artist and during the last year lost the sight in my L eye and have some distortion in the R eye. I became very depressed and since I live alone, I had no one to talk to about my fears. In October I turned 79 and thought my life was over. I was overwhelmed and seldom left the house. My depression deepened.

    Last week my son and his girlfriend took me to LasVegas where I met and spent several days with my favorite niece and her family. I was careful about what I ate, but otherwise had a glorious time. I was exhausted on the long drive home...five and a half hours, but was fine otherwise.

    Now I know there is a definite connection between the mind and body. I would like to find a way to harness whatever it was that made me so happy and gave me the strength to live normally for those days. I learned that being alone is not good for me. Now I have a glimmer of hope for my remaining years.

    Just finding that other CRF patients, also have Lupus, gives me the hope that I can learn from them how better to cope with my situation. I'll keep reading.

    Much love to all of you, Rosebudd333

  9. #9
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    Jan 2014
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    Yes, I totally agree with the lines which you had written in this post. The Heart Doctor just ended her Plavix and in two weeks she'll have the cath-Line inserted in her stomache. I determine the best way to help her is to throw myself absolutely in(the forum) and get as much info as possible and possibly help other's along the way.

    Thanks!

  10. #10
    Junior Member
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    Sep 2013
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    3
    I have had Lupus (SLE) for almost 20 years. The diagnosis came right after I lost my sight for 3 months, I regained most of it back. Due to high dose steroid's I had to have a hip replacement that has now failed. Lupus also played a part in my having a problem with my mitral valve and requiring surgery on it 2 1/2 years ago, immediately after heart surgery my kidneys failed. They came back just not all the way. I am back in congested heart failure, mitral stenosis now, I can't have a revision of my hip because of my heart problems and kidney failure. My cardiologist and nephrologist toss the blame back and forth for the heart failure, cardiac surgeon says there is a morbidity rate of 25% for me to have surgery on the mitral valve, he suggested me be put on dialysis a bit sooner than necessary to see if that helps with the fluid build up. Nephrologist says no. So here I am, stuck!

    I am in stage 4 kidney failure, my GFR has been as low as 8 but is back up some now to 20, which I like. I just wish I could find a way not to gain 10 pounds or more in 2 days without having drank any more than usual, doing the same activities etc. I will then lose it over the next few days, to begin the horrid cycle again.

    My employer and I discussed my health issues yesterday. She had been very supportive, but now says that if I lost 100 pounds I wouldn't have the problems I have. I try to explain that the kidney failure, heart failure, lung issues and hip, are all lupus related and Lupus is not weight related. Yes weight loss would help but even my physicians have said that as long as I am eating a nutritious meal (no wrong foods) than don't stress over it. But my employer is like it has to do with my weight. I explain what I eat, that I am only supposed to have 32ounces of fluid a day, most folks can drink over a gallon a day with no problems, I drink a gallon and my weight would go up 5 pounds over night easily.

    What am I supposed to do? I am tired of doctors not being decisive with what to do next, people at work bothering me about my weight, and on top of that having to deal with all the medical crud going on along with trying to keep a positive outlet.

    Any suggestions, I am about to the point, where I may just do nothing.

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