OT- son with sudden anemia/renal failure

[dclfun]

I just wanted to share this with my Disboard friends. For those who don't know us, I am a widowed mother of four children who are now grown ( husband passed away in 2001) who has ALS ( Lou Gehrig's disease). I've done really well and with excellent care and equipment have managed to continue to work fulltime, but my time to "retire" is coming near. One of my boys, who is now 20, went to the Dr. yesterday for something routine and they found out that he is severely anemic ( 1/3 of the normal hemoglobin) and also in renal failure. He is undergoing dialysis today and will be on the transplant list. I am so devastated. Meanwhile both my parents are having severe health crisis issues ( like so many of us who have raised our children and now have elderly parents who need us) and here I am, barely able to care for my own self. Don't know how we'll pay the bills or what will happen from here but right now my concern is for my son to be better. I knew something didn't feel right about the holidays this year...now I know why. ----Kathy

 

[Michigan]

Kathy I'm so sorry to hear about your son. Don't worry about the financial part let the hospital social worker take care of that for you that's what they are there for.

 

[Cheshire Figment]

I don't know if the doctor told you about this, but the kidney, in addition to filtering the blood, sends signals to the bone marrow for production of Red Blood Cells. I had been anemic for years after losing a kidney, and a hemotologist started me on a drug called Aranesp (Darbepoetin Alfa) and now my RBC count is well into the normal range.

The medication comes in a pre-filled syringe for subcutaneous injection. Initially I was on one dose (100 mcg) every two weeks, now my dose has been cut to one injection every six weeks.

 

[SueM in MN]

I am so sorry to hear about this. That is a huge bad shock.
Hope things work out and he recovers quickly.

Like Michigan said, let the Social Worker deal with the financial part of everything.

 

[dclfun]

I'm not so worried about the medical bills but for our other bills, like rent and electricity. We shared bills together just to make ends meet since so much of my money goes to my own medical care ( just so I can live at home ). The Dr. is fairly certain that David has had this all his life and it's just now to the point of needing dialysis and a transplant. He received another two bags of packed cells yesterday and they removed 3 liters of fluid ( he still has plenty of fluid). He was also given an injection to help rbc production. Fortunately his Dr. is the one who treated my husband - the fact though that he died of renal failure isn't helping my son's morale.---Kathy

 

[Michigan]

I'm not so worried about the medical bills but for our other bills, like rent and electricity. ---Kathy

The social worker is also responsible for finding you programs that will help with things like that too.

 

[Forevryoung]

Kathy to you and your family

I'm sorry to hear about your son. Are any of his siblings a match for a kidney?

 

[MommytoMJM]

Oh Kathy, I am so sorry. You will always be in our prayers. We're going to Candlelight Friday and were hoping to hear you and skye sing, will you still be there? Lisbet will be here from the 26-Jan 7. Hopefully we can work something out so we can give you a hug in person. Until then, hugs, prayers and pixie dust.

 

[dclfun]

I don't know if I'll be singing again this year. Not only is my heart not in it, but I have no voice from a virus I've had for nearly three weeks now ( also have a mild right sided pneumonia ). David had a really rough night with very high blood pressure. They gave him yet another bag of packed cells. In the near future they are going to do a biopsy to try and determine the cause of the deterioration and to see if it's cancer. The worst thing for me will be going back to work this weekend. I *have* to go or we won't be able to pay bills, but I don't want to leave him while he's so unstable. ---Kathy

 

[minnie61650]

I was so sorry to read about your son and other family members.
I will keep you and your family in my thoughts and prayers.

Please keep in touch.