Tuesday, October 10, 2006

It has been a long time

It has been a while since an update. My last post was about being hooked up to a machine. Well, Sandra choose to go off the machine because it caused her to wake up in severe pain every time it was draining. It continued to drain even though there was nothing left. They tried to adjust it without any success, so she finally gave up, and is now back on manual pd. In many ways it is a great relief, because in addition to the pain, she was stuck to the machine for ten hours every night. Which meant that she would either have to go to bed and hook up very early every evening, or she had to stay in bed to late in the morning. Sandra feels she has more control with the manual, even if she has to do four exchanges per day. The machine sounded like the perfect alternative at first, but sadly it did not turn out that way. We have not heard anything in regards to potential donors lately. Oh, how I wish there was a perfect match out there somewhere. In the ten months since the diagnosis, there has been a big change. Sandra no longer fit into any of her clothes, and short of maternity wear, nothing will fit around her belly anymore. She can't carry anymore than five pounds at a time, she can't stand long enough to cook a meal, or wash dishes. It's fortunate that I work nights, with the days free, so I can help her with those things. However, Sandra is still healthy enough to be able to handle surgery if a kidney would become available now, but if she gets any sicker, she will be taken off the list until she gets better.

5 Comments:

Blogger Unknown said...

Hi Christina,
I saw your post on I hate dialysis. Just wanted to say hello. I am a mom of a daughter who also needs a kidney transplant. I think you webpage looks great. You can read about Jenna's story at www.xanga.com/i_korn. I also got her a Caringbridge site - do you have one of those? It's a great way to meet other people in the same circumstance as us. Jenna's page is www.caringbridge.org/visit/jennafranks. I pray you find a donor. What is the wait time for Sandra now, for a cadaver kidney?
All the best from one mom to another!
Karol

8:15 AM  
Blogger Mr Mans Wife said...

Hi there Christina,

I live in the UK and came across your blog completely by accident. I was simply viewing my own blog stats and your blog address was listed, as if someone had come to my site through yours, which seems impossible as there is no link to my blog on this site. Anyway, here I am, and as bizarre as the appearance of your blog address is, I’m glad it happened.

Although the health problems of your daughter are very different to those of my husband, as a carer I can relate to many of the frustrations, the heart break, the helplessness, and the sheer desperation you must feel at times while watching your loved one become so sick.

My heart goes out to you and all your family. After reading through your posts I see that this is not the first major challenge in the form of health difficulties to affect your family.

I have no idea how I can help at all, but if linking to you helps in any way so that others can read your story, it’s done.

Mr Mans Wife

11:41 AM  
Blogger Calamity Jane said...

Hello Christina, I've just stumbled on your blog. I wish I could help your daughter with a kidney but I have ESRD myself. I've nver tried CAPD but I'm sure it's a pain in the butt. I'm on haemo myself so I'm only too familiar with the fistula saga, I have to have another access created after Christmas as my last 2 have failed.

I need a combined kidney and pancreas transplant, I'm not on the list just yet because I need to lose some weight. It's difficult with the restrictive diet and the time involved with traveling to and from dialysis means I don't have much time for exercise.

I know how tough all this can be so feel free to contact me via my blog.

CJ

2:07 PM  
Anonymous Anonymous said...

Is your daughter listed at only one facility? Please research listing her at several,this will increase her chances of finding a deceased donor. My prayers are with you.

8:16 PM  
Anonymous Anonymous said...

hi , just want to say i will be parying to allah for your daughter.

mohammed

9:32 AM  

Post a Comment

<< Home

Guestbook