I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on December 30, 2007, 11:58:58 PM
-
Article published Dec 31, 2007
Single mother of two struggles with kidney problems
Chronically ill woman refuses hospice care
By Tabitha Yang
DEMOCRAT STAFF WRITER
Unless she can get the kidney transplant she needs, Cherise Marcelle may not live much longer. Three months ago, doctors recently advised her to go into hospice care, but she refused.
"It would be too depressing," her mother, Helen Marcelle, said. "She told me, 'I need a reason to get up in the morning.'"
Cherise Marcelle is just one of many chronically ill patients who must make decisions about hospice care.
"Every situation is entirely different and individual, and there's just many, many factors that might go into that decision," said David Robinson, the medical director for Big Bend Hospice. "In general, for any treatment or combination of treatments, you really have to balance the overall benefits and potential burdens, and then after that it's up to the person to accept or refuse treatment."
After weighing her options, Cherise, a 32-year-old single mother of two, opted instead to continue taking classes at Tallahassee Community College. Already certified as a licensed practical nurse, she wants to get a degree in office technology so that in case she gets a transplant, she will be able to support herself by doing administrative work at a hospital.
Cherise was diagnosed with kidney failure nearly 10 years ago. She knew something was seriously wrong because she was nauseated and throwing up constantly. She's been on the transplant list since 1999. She found out a year ago that her antibody levels are too high to get a transplant. A person's antibody levels are increased by getting blood transfusions, and in women, antibody levels increase with pregnancy. Unfortunately, Cherise didn't know that until recently, when she asked someone at Shands Hospital in Gainesville why it was taking so long for her to get a match.
"That was my first time hearing it in the years that I had been on dialysis," she said. Not knowing what to do or what to expect has been an ongoing concern while continuing the treatment. One of the side effects of getting dialysis and taking the drugs she has to be on is that she's lost most of her hair, but she said she was never told to expect that. She also has had some memory problems due to the dialysis, another side effect she didn't know about. It's hard for her to retain information long-term.
"I went through school and I did really well without studying because I had a phenomenal memory," she said. "But now, all of the sudden, I'm struggling to get C's."
Cherise has to get frequent surgeries related to her condition and often must go to the hospital. She would like to move somewhere where she could be near a kidney specialist, but in order to do that, she'd have to leave her family, which is basically her only support network, behind. Besides her two sons, ages 14 and 10, her mother and sister live in Tallahassee.
Recently, her car's transmission stopped working, and she can't afford to fix it, so she's been waking up at 4 a.m. to take a community shuttle to get her dialysis treatment. She usually calls her sons from the center to make sure they're up and ready for school.
"I'm doing the best I can," she said. "But sometimes it feels like I'm caught in the worst Catch-22."
# Contact Reporter Tabitha Yang at (850) 599-2304 or tyang@tallahassee.com.
http://www.tallahassee.com/apps/pbcs.dll/article?AID=/20071231/NEWS01/712310313
My Comment: Hospice??
-
My Comment: Hospice??
Strange to be talking hospice in this situation. Something must be unclear about her health?
-
My Comment: Hospice??
Strange to be talking hospice in this situation. Something must be unclear about her health?
What meds would she be taking that cause hair loss? and why would she need frequent surgeries? I agree there is information missing from this article. She had been driving herself to dialysis and taking classes at CC when the doctor recommended hospice??? It's hard to make sense of that.
-
Hello Karol,
I think Cherise is just getting tired of having to get surgeries to clear blockages in the portals (that’s probably not the right word, but I’m not sure what the proper term is) through which dialysis is conducted. She has congestive heart failure in addition to kidney failure, and is currently on oxygen.
Tabitha Yang
Reporter, Tallahassee Democrat
277 N. Magnolia Dr.
Tallahassee, FL 32302
(850) 599-2304 (office)
(850) 599-2304 (fax - select option 4)
From: Karol Franks [mailto:okarol@yahoo.com]
Sent: Monday, December 31, 2007 3:03 AM
To: Yang, Tabitha
Subject: recent article - Cherise Marcelle
Hi Tabitha,
I am curious about the recommendation that Cherise go to hospice care. I had never heard this before. I know patients who post on our forum at www.ihatedialysis.com that have been on dialysis for many years. Of course a transplant would be wonderful, but in the meantime dialysis is life support. I wish her good luck.
Karol
-
She probably has so many complications and it may all be too much for her.
Thank you Okarol, for doing some background work. There is always more to the story than they can write in a small article.
-
I find the part about antibodies in women interesting. I have had four children. I was told my antibodies were low. I wonder if it was because I am Rh neg and my husband is Rh pos. I had shots during each pregnancy. I can't remember what they are called right now. I had a reaction to blood products so they have to match when I get blood.
If you read this Stauffenburg I would like your thoughts. You seem to know about these things.
Also I don't understand about the hospice like the others have said.
Her heart might be the reason. I hope she gets a transplant soon.
-
Hi Romona, the doctor kind of explained to me that during my pregnancies (also 4) my body saw the fetus as a foreign body and build up antibodies; lots and lots of antibodies. So, my body still wants to reject their blood. I don't think it happens to everyone, but I do remember reading that more men receive transplants and it could be due to the antibody thing. Men don't have that problem.
So, now we are both waiting for Stauffenburg. We are lucky to have so many great minds here to help us!
-
I find the part about antibodies in women interesting. I have had four children. I was told my antibodies were low. I wonder if it was because I am Rh neg and my husband is Rh pos. I had shots during each pregnancy. I can't remember what they are called right now. I had a reaction to blood products so they have to match when I get blood.
If you read this Stauffenburg I would like your thoughts. You seem to know about these things.
Also I don't understand about the hospice like the others have said.
Her heart might be the reason. I hope she gets a transplant soon.
Yes, pregnancy is one of the things that cause your antibody levels to rise. So is previous transplants, and blood transfusions, and maybe some other things, but those I know for sure. I don't think it happens to everyone, obviously, it didn't happen to you, and it didn't happen to me. I had a previous kidney transplant, I had 2 children, and many many blood transfusions and my antibody levels were at 0% while I was on the transplant list for a 2nd transplant.
Wierd.
-
It is weird. It just shows like snowflakes we may be similar but when you look close we are one of a kind and unique.
-
Wait, how did she even get on the list with congestive heart failure?
By refusing hospice, are they really saying she was thinking about quitting dialysis and would have needed hospice for the last few weeks of her life, but then she decided not to stop?
-
I had congestive heart falure in 2005. I had a bad case of the flu and the virus attacked my heart. I think you are always considered having congestive heart failure if you have a history of it. I was very lucky and my heart is very healthy. If you pass the heart tests you can get listed. Also sometimes transplant helps the heart afterwards. The better your kidneys work, the better for the heart.