I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: babygirlsmom on February 28, 2009, 08:08:30 PM
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My first born and only daughter is the love of my life. When she was 3 years old, she developed chronic bronchial asthma. She had lots of allergies too. I had high hopes that she would outgrow the asthma. She did not. She loved playing softball and she was quite an artist. When she was 21 she decided that she wanted to attend the Art Institute in Chicago. While visiting Chicago, before she had enrolled in school, she had an asthma attack and passed out. Her friends got her to the hospital, and the next thing she remembers is waking up to find out that she has a high creatine level, which meant kidney disease. She was told that one of her kidneys was much smaller than the other one, because it was deteriorating. The doctors wanted to biopsy her good kidney to try to diagnose the problem. She considered the risk and decided not to do the biopsy for fear of damaging the good kidney. Over the next few years we visited a nephrologist regularly. There main concern seemed to be getting her blood pressure under control and my main concern was why aren't they trying to get her on the "list". I had a lot to learn......more than I could ever imagine. A few months before her 26th birthday her doctor decided she needed to go on dialysis immediately. She was feeling extremely tired all of the time, and she was nauseated a lot. The doctor reassured me that she was going to feel so much better after she starts dialysis. He promised that she probably would be feeling better than she could ever remember feeling. She was scheduled to go too the hospital to have a permacath placed in her upper chest so she could start dialysis right away. She was in a lot of pain from the surgery. She was awake. They used lidacaine to numb her as they inserted the catheter. Not even a year has passed yet. She has had one problem right after another.
During her first hemo treatment, after they had her connected to the machine, they let me go back and see her for a minute. She seemed fine. But she was allergic to the dialysate in the machine. She had a rash going up her neck and down her arms. 2nd treatment was the same. Before the 3rd treatment they decided to rinse the machine twice and give her benadryl before starting the treatments. That helped. Before her 4th treatment the catheter was infected and had to be replaced. (knock on wood, this has been her only infection so far) She has had 11 catheters in the 8 months since this all began. Mostly her body rejected them by growing fibrin sheaths over them. She has had two failed AV fistula's. This is due to a clotting disorder. Needless to say, as of this date, I have not seen any improvement in her condition. After hemo treatments, she was starving, always seemed to have a killer headache, they pulled too much fluid, her blood pressure dropped too low, etc. It was always something. My heart is breaking over and over again. God knows I would do anything to be in her shoes. She doesn't deserve this. She is so young. She wants to do so many things with her life. She would like to have a child someday. She dreams of her wedding. I cry and cry. Her illness is destroying me too. She points out that I am of no help to her, because I'm not taking care of myself. I can't help it. I feel like I'm losing my child and it is killing me!!! Finally she makes me realize that I do need to see a doctor too. I did, and I'm taking antidepressants now. She thinks I'm doing better, so I must be.
She decided that she wanted to do peritoneal dialysis because of all of the problems at the clinic, and because she needed to feel that she had some control over her body. Just before thanksgiving she had surgery to place the catheter in her abdomen. A few weeks later when it was time to start using it she did her first treatment at home, and the next day it would not work. Again surgery was scheduled to due an omenectomy, which should take care of this problem. The catheter drained and filled just fine, but the pain during drain was a 10+. She had surgery day before yesterday where the surgeon moved the catheter away from a fold in her bowels. Which he believed would correct the problem, but she is still having drain pain, not as intense, but still there. We need something good to happen soon. Pray for my baby girl please.
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I will pray for you two. I hope the PD starts becoming more comfortable for her. Both of you need a break in all the trauma. Dialysis doesn't always go smooth especially at first.
The reason doctors can get away with saying we will feel better than we remember when we start dialysis is because there is usually no place to go but UP!
Hang in there and stick with this site. You will learn so much and you will both laugh again.
:welcomesign;
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Welcome babygirlsmom, good to have you aboard.
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Pray.
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Welcome to our community! I was so moved as I read your intro. I too have a 26-year-old, and I know what it is like to want to just see your child happy. My caring thoughts and prayers are with you both. I trust that things will get better for you two. This is a good place for you to be. This is much more than just a dialysis website - it is a genuine caring and sharing family. :grouphug; Please keep reading and keep posting, letting us know how your daughter is doing.
Looking forward to hearing from you.
Bajanne, Moderator
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:grouphug; We laugh, cry, and pray together here. :welcomesign;
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Welcome to our site. I am so sorry to hear about your daughter. It's not easy. There is alot of support for you waiting on this site. Please post often.
Boxman,Moderator
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Oh my goodness. I am so sorry. It's your babygirl.
I am a caregiver to my s/o Ray. Lord, what I would give
to trade places. It hurts so bad when I cannot do any
thing to reduce his pains. Jesus, it would be a whole other
ball game if it was one of our daughters...
There is a thread on this board about selling your soul to the
devil...(if only).
I started a journal to record my feelings. Also, making notes on
Ray's battle with End Stage Renal Failure. The most helpful
therapy for me has been educating myself about his fight.
Another is joining IHateDialysis. Connecting with other caregivers has
literally saved my sanity, be it information on a symptom or
the calming words written by a member (Joie, aka TheWife is
a pro).
I hope your daughter joins IHateDialysis, too. Take care and
don't be hesitant about sharing.......deborah
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:welcomesign; babygirlsmom. I'll keep your daughter in my thoughts and prayers. Glad you found us and hope we can give you some information and support to maybe make things a little easier. Post often, we are a wonderful group. :cuddle;
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:welcomesign; My daughter (14 years old) is also on dialysis and another (18 years) is expected to start dialysis this year. Some days are just unbearable. I wish I could change places with her. I would do it in a heartbeat. Unfortunately, I can't even donate a kidney, because I am blood type A and she is B. I will pray for you and your daughter. The both of you will survive these storms and the sun will shine again. Stay Positive and strong for your daughter. There is much knowledge on this board and knowledge is power. :flower;
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Babygirlsmom -
I'm so sorry to hear about everything your family is going through. I'm close to your daughter's age and am currently doing PD myself. I started with CAPD and will go on the cycler later this week. I did PD over hemo because my physicians said it was much closer to the normal function of a kidney...hopefully once you have the catheter situation under control, she will start to feel better after dialysis and not have so many up and down health swings. And you can make adjustments to the level of dialysate you use during the day, so she may find she's more comfortable based on that fact.
It's not an easy age to have to deal with this (although I don't know if there is a really good age!)...so many life decisions come in your twenties. I have similar hopes and dreams as your daughter...to grow old, have a family. We just have to take everything day by day and keep the faith.
I lean on my own mother a lot...to vent, to cry, to share success stories. Despite the pain this all may cause, your daughter will continue to look to you for strength, so I think it's wonderful that you have such compassion for her situation. Stay strong!
Wishing you and your daughter the best,
~DenverLaura
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I know how we love our children
both my girls have pkd -- and I gave it to them
we do not know about our son -
'F with me; but don't F with my kids'
I heard a neighbor say that to another neighbor once
I will pray for you and your daughter
life can really suck at times
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Welcome to IHD. From one Mom to another, I am crying with you. There is no pain like a Mother's pain. I am so sorry your daughter has had so much go wrong. Llife isn't far sometimes. I hope we can be a good place for support for you. You can scream and cry to us and we will always be here for you to lean on. You do have to take care of yourself so you can help her. When you can't be strong, come here and talk to us. Lots of prayers for both of you :cuddle;
paris, Moderator
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Babygirlsmom, I really wish that you weren't going through this and that your daughter weren't either. My heart goes out to both of you. :grouphug;
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Welcome babygirlsmom!