I need some support

Discussion in 'Et Cetera, Et Cetera' started by viking, Feb 1, 2005.

  1. viking

    viking New Member

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    Ok, So I know this is no fun but, I need some input.

    My wife has been ill for some time now, 8 years of Lupus.
    After many years of steroid use and chemotherapy, her kidneys
    are giving out.

    We just found out that she needs a kidney transplant.

    Obviously, We're both freaked out.

    Have any of you been through this yourself or with a loved one?
    I am in therapy but would like some real feedback from someone who has been there.

    I would appreciate any encouragement or otherwise.
    I just really don't know what to expect and doctors are so unwilling to give you straight answers.

    Thanks
     
  2. KinkGuy

    Gold Member

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    I am so sorry to hear about this. I only wish I were able to give you some knowledge or insight. But know this, we are here and hoping/wishing/praying for you and your wife. All I have to offer is the incredible success rates I have read about regarding kidney transplants. My S.O. is a head surgical nurse and he says they perform many a year with very high success rates. Getting the proper "match" I have heard isn't as difficult now as in years past because of the new anti-rejection medications etc. Please, hang in with us and we will with you.
    Take care of yourself, you're an important part of this equation.
     
  3. madame_zora

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    Viking, my best wishes are with both of you. Kinkguy spoke the truth, you have to be careful not to let yourself get run down, you will need your strength, and so will she.

    I have posted before about being in an unsuitable marriage, but one of the main reasons I stayed as long as I did was because he donated a kidney to his sister. I wanted to make sure everyone was okay before I caused any changes in the lives of so many, life-or-death situations make personal happiness seem a weak excuse. This much I can tell you, the recipient has much better odds of healing than the donor, and less recovery time. Family donors' kidneys are received more easily then matched ones, but if it's a matched kidney you're looking at, the success rate is still quite high. It takes several months for the new kidney to fully perform on it's own as there is some adjustment time after being placed, but marked improvement can come fairly shortly.

    Strong advice- personally monitor the drugs different specialists give your wife, don't assume they are checking with each other! Very often, they are not. Drug interactions can cause more damage than the operation itself. We kept a 'round-the-clock watch on my sister-in-law, each of us taking shifts while she was in the hospital, each of us logging on a chart what medications she had been prescribed and administered, and asked each new doctor how her current regimen would be affected by any new change, this proved invaluable. So many specialists will be in and out, and each one is only looking at one certain aspect of her treatment, so self-monitoring is imperative.

    Help her to maintain her recommended diet and fluid intake, even though this can seem hard for her, the doctors are trying to relieve as much stress as possible from her failing kidney. She may experience intense mood swings both due to her drug cocktail, and the fact that she is considering her own mortality, don't take offense if she snaps at you or seems distant sometimes. Short of walking through her experience, it is very hard to understand. Do what you can to gently encourage her to believe in the possibility of a complete recovery, her mental state can greatly affect the success of the operation, as well as minimise the recovery. Do what you can not to break down in front of her, but find a few trusted friends to lean on, you'll need it. Also, don't worry that you may be "dumping" on your friends, those who love you will want to help, and this is one of the ways they can, by letting you let go sometimes. Remember that we are here as well, and we are real people who care about you. Jana
     
  4. Onslow

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    I was first diagnosed with kidney difficulties a few years ago. In my case it's a protein leak and the numbers are slowly rising. You have received good information as to how to be with your wife, you need to be 100% supportive of her and remain strong at all times for her since anything less can lead to guilt.

    As MadameZora said, you must help maintain a constant dietary regimen for your wife since the kidneys are in a fragile state. Be careful with fluids since too much can strain the kidneys but equally you do not want to dehydrate her. It will help you to have scales and cups and the sort for measuring everything. As well as this, be sure to read ALL ingredients and nutritional labels for food and beverage. There are proteins and sodium in the strangest places, both of which have effects upon the kidneys. In addition to this, as she indicated, drug interactions. Do internet research, speak to doctors (ALL of her doctors) and with the pharmacologist(spelling??). Be willing to ask questions and to question procedures which you are unsure of. Help your wife to do the same.

    When it comes to doctors that is another matter entirely. It is not that all doctors are always unwilling to give you straight answers it is just that they can't give you the exact timetable since each patient is different. When I first met with my nephrologist he seemed cold and uncaring and 3 visits later I was still getting that from him until I explained to him why I was so scared. On the day that I first met him, my cousin died from kidney(renal) failure. Once I had conveyed that to the doctor he understood part of why I was so spooked by my future. Add to this that within months of having received my diagnosis my older brother was given the same information (this means is we will not be giving each other kidneys) I had a lot of anger and guilt and even shame over my diagnosis at the start and even considered not going for dialysis but by talking with my regular doctor (who had first noticed the spike in protein levels) I got my head screwed back on tightly and began the fun of dialysis. The fact that my brother who has led the pure clean life of a saint has the same illness (a protein leak) has made it easier since I know it isn't the insane lifestyle I chose for so many years (although it may have weakened me overall). So what I am saying is sometimes you need to find a way to break through a doctors cold exterior and if this doesn't work then ask if the medical care your wife is receiving is top notch. If it is, then as bothersome as it is, stay with that doctor. If the care is not stellar then consider another nephrologist. I stuck with mine, mainly because he knows his stuff although apart from our one breakthrough of communication he remains quite distant. Talk it over with others and keep your wife in that line of communication, at no point should you shut her out of her health care decisions.

    For both you and your wife you need to seek out support groups. Millions of people are going through what you and your wife are and they are there for you with answers as to what to expect. Everything from how to speak with family and friends to keeping the fistula (just a small incision in the wrist wherein 2 veins are connected) area clean (I hope she gets that and not a shunt since shunts are more complicated) to the physical effects of dialysis. Many people are extremely tired after dialysis which considering what is involved makes sense.
    Be there for her and also for yourself. If she gets angry or depressed learn to read the signals and learn what action you need to take, often times a simple hug and an I love you are enough, sometimes a person just needs to be alone for a few minutes or hours. This is not a reflection on you, it is just the patient having to digest the nature of their illness, try not to get angry with your wife about it.

    Something you need to do as well is start discussing this with family to see if there are any people who are willing to donate a kidney and hopefully are also compatible. This does mean you should go over to her nearest blood relative and say "Hey my wife needs a kidney, how about you get tested?" Let them know what will be involved, blood tests, surgery, life with one kidney and the such. They need to make the deciusion as to whether or not they wish to give and if they don't then try as hard as it may be to accept their decision. It is also good for family and close friends to know of your wifes health needs. Not only will you most likely find people willing to be tested for donating, many of them will probably be willing to help you out i other ways as well. Everything from driving her to her dialysis treatments (and home again) to help in getting some of your basic chores done(housekeeping, laundery, cooking).
    At some point your wifes nephrologist will see that her situation has led her to a point of needing to be placed on a national donor list, if no family or friends have stepped forward or been found as suitable matches. This is usually fairly far into the final stages of kidney failure and it can be more stressful than expected. Again, keep a line of communication open with several folks you can turn to for emotional support.

    2 quick links for you (now that I've babbled for an eternity) which are starting places would be:
    http://www.medhelp.org/HealthTopics/Kidney.html and also http://www.aakp.org
    In addition to this might I mention a google search for support groups and any other kidney information. Throughout it all the most important things are a positive attitude, being armed with knowledge and as large a support group as you can handle----these are your essential tools.

    Okay that's it from here for now.
     
  5. viking

    viking New Member

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    Thanks for your kind words and especially for your insight into my situation.
    Every word helps!
     
  6. zzorus

    zzorus New Member

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    I can't give you any information, but I am sending both of you my thoughts and best wishes.

    Be strong when you are with your wife; let go when you are with your friends.

    John
     
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