Step-daughter in hospital with calciphylaxs and scared to death

[Concerned Step-Mom]

I am new here, and I wish I had found the group long ago. I have been stepmom for 24 years to C, and she went on dialysis 15 years ago. I have been her caregiver of one kind or another ever since. I won't burden you with the details, but mom just doesn't "have the time". Mom and Dad depend heavily on me in the medical dept. because I just have a knack for it. I don't mind at all, but right now, she is spiraling downhill fast. We aren't getting straight answers from the docs. She is scheduled for her 3rd surgery in 4 weeks tomorrow early in the morning. Her pain is horrible, but she has started hallucinating. She called me yesterday morning when we were about 20 minutes from the hospital, with wild stories, and I knew she was talking "out of her head". The choice is so hard for everyone because the pain is real and excruciating, but overdosing is a problem. Watching her cry, moan and scream from pain is so stressful for us. Mom only goes to the hospital for 3 hours a week. We were going every day for the first 2 weeks, but have had to cut back to 3-4 days a week. We live an hour away from the hospital. Neither of us work anymore, thank God! So, we stay 8-10 hours with her when we go. She has been thru the mill, getting a transplant in '09, then losing that kidney several months ago. Now this. We just feel helpless. I am angry at her mom, but I know that is useless. I am angry at the dialysis center's nephros for not knowing what she had months ago! I am worried about my husband, who had bladder cancer in the middle of this mess. Can I scream now?

[MooseMom]

Oh man, I've just been reading up on calciphylaxis after reading your post, and it seems criminal that her docs didn't pick up on this earlier.  It seems to me that this is a condition that should never be allowed to occur in any patient with renal problems.  I'm concerned that her pain isn't being managed, and this doesn't seem to be the time for worrying about overdosing.  Is she being seen by a pain management team?

I'm assuming that the surgeries are for debriding necrotic tissue?

Being a stepmom myself, I agree that being angry with her mom is useless.  Try not to waste your valuable energy on that.

Why are you worried about your husband?  Is he ill or in treatment for bladder cancer?  Is he finding it difficult to be cope with his daughter's illness?

[Concerned Step-Mom]

She was put under a Palliative Treatment Team, with a Pain Management doctor almost immediately when finally admitted. It took us 4 months to get her any care, and almost tackled one of her original nephrologists in the E.R. when we had our daughter there for the 4th time! She took one look and said she was admitting her. The next day she had it figured out. Anyway, last week they moved C  to a "Specialty Care" floor in the same hospital building where she gets more intense nursing care. The hallucinations are disturbing to her, plus the narcotics cause her to move so much while trying to sleep that she really doesn't feel rested. They are trying all that they can to help her. We just talked to the plastic surgeon who told us he cannot guarantee that he can do the skin graft over the 4"x 6" deep wound (down to her muscle) because the surrounding skin has died. He said things don't look good. And this was the overly optimistic surgeon just 2 weeks ago!

My youngest son died at 18 yrs of age in 2005. My husband raised him from age 3, and my son thought of him as his dad. He idolized my husband. We were devastated when he was killed in a car wreck. Also, my husband lost a baby in a previous marriage. This is a lot of loss. That is one reason I am worried about him, plus his own health problems.

[cassandra]

What a horrendous time you all been having. I agree with MM to not waste any energy on the mom.

Remember to take care of yourself too.

Wishing you lots of strength, Cas

         

[Concerned Step-Mom]

Thanks so much for your replies. I know there isn't much you can say about this situation. I was hoping someone else might have had some experience they could share with me, but then I really don't wish that on anyone! Thanks for letting me vent. 

[MooseMom]

This is just such a horrible condition; I'm really at a loss for words.

It does sound like C's medical team is doing all of the right things.  I can see now why you are worried about your husband.  He has indeed suffered such loss in his life, and now this.  I hope you will keep us updated on her condition.  I have not seen a lot of discussion about calciphylaxis on IHD.  I'm still rather upset that this wasn't caught sooner and that the things that lead to this condition were not addressed earlier. 

[okarol]

I hope they can help her. Is she diabetic? That makes wound healing even more of a challenge.
I am so sorry, this is a very serious condition and it sounds awful for all of you.
All I can share are the wise words of our dear past-admin Goofynina, "Hope for the best, prepare for the worst."
 

[Concerned Step-Mom]

  MooseMom, this is what I felt like doing to the nephrologists at the dialysis centers that saw her lesions because she showed them to the doctors and nurses several times. One finally referred her to a rheumatologist with an appointment 3 months away. The nephrologist said he thought it was related to Lupus. Then, she changed dialysis centers, and that nephro ignored it completely. Then, the rheumatologist office called the day of the appointment and cancelled! I can forgive the E.R. doctors easier than the nephrologists. However, it is a waste of my time and energy to concentrate on that right now. There will be time for that later. I don't want anyone else to come to this point, if it can be avoided.

Actually, Okarol, my motto is always, Hope for the best and prepare for the worst! That is one of my favorite sayings.

C went through the skin graft on the open wound, but the surgeon said it will take time to find out if it is going to "take". Yesterday, after the surgery two doctors met with us to give us their prognosis, which is very poor. They started an IV of nutrients since she isn't eating enough to get all of the vitamins she needs to heal. She doesn't have diabetes, but she doesn't heal well, as I said. She cried from the pain all day yesterday, except for short periods of relief from the injections. Then, she couldn't carry on a conversation. I don't wish this on anyone - patient or caregiver!   For now.

[MooseMom]

I can't say that I'm surprised about her prognosis.  This is such a horrific story, and I am so very sorry to hear about C's suffering.  I can understand you worrying about the effects of the pain meds, but it seems to me that at this moment, pain relief is the top priority.  The pain must be horrible, and if it is not controlled, then she will not be able to rest and heal.

Ugh...words just do not suffice.  I am so sorry.

[MaryJoe]

if ever a person had the right to scream... I am so sorry you and your husband have to endure this tragedy. I wish there was something useful and comforting I could say, but as MooseMom has already observed works just do not suffice.  I believe the doctors must get her pain controlled for healing to occur. I hope they can get the right mix of pain relief and sedation worked out soon. 

  to both you and your husband.

[amanda100wilson]

She should be receiving more frequent dialysis, probably six days a week.  Suggest you ask them if they can up her frequency, to see if this improves the situation.

[Concerned Step-Mom]

Amanda, I appreciate your input on more dialysis. I agree with you, but truthfully it is hard to get her to dialyze at all. The nephrologist that admitted her and has treated her off and on since '98, is watching all of her lab results. In fact, she sent her for dialysis the day after she had  been dialyzed because her calcium level was too high. When she is in terrific pain, she refuses to do it. The dr. said that if a patient refuses, they must accept that. She also told us that the pain may get so great that she will choose to stop dialysis all together. This docs compassionate, but very knowledgeable. C is not a fighter, by nature. Her father has medical P.O.A., and really, C is not capable of making clear decisions. She had mental and learning challenges before her illness, but they have worsened over the years. Now, with the heavy pain meds, I don't understand why they don't turn to her father for decision-making. I know she has rights, but she cannot even carry on a two-way conversation, remember her own birthdate! I think the nephrologist is hoping that the graft will "take", the nutrient supplements will aid healing, dialysis will help control calcium and phosphorus levels, the parathyroidectomy will keep PTH low, physical therapy will help her regain strength...and the calciphylaxis will stop. I know...a lot to hope for. I told her I am pessimistic, and I am usually an optimist. I have decided to back away some, and let my husband spend more time alone with his daughter. She seems to want that right now. I will continue to wash her dirty clothes, make sure she has protein bars, gowns, etc., and go when my husband asks me to go. This could be a long-term situation...and that is my two cents worth 

[obsidianom]

I have a couple of thoughts. Hyperbaric oxygen can help with wound healing in these cases. I just got back from a two day seminar including wound care and hyperbaric oxygen  , and it is very useful . Ask your hospital about it.
More dialysis is also useful as others have mentioned. If she is in too much pain. is it from a fistula?  Perhaps a central line /catheter could make it easier in the short run. There would be no pain hooking up that way.
Sorry about all the pain and problems .

[Concerned Step-Mom]

obsidianom, Thanks for the suggestion. Hyperbaric oxygen was used right after the first debriding surgery, in the form of the VAC. It didn't help at all. Her largest wound had necrotic skin develop even with that. The hook-up is not what is painful at all. She is sooo accustomed to that...it is nothing. The fact that all pain meds are "washed out" by cleansing of the blood, is what causes so much pain. This team is doing everything, I guess, that can be done. I appreciate all of the suggestions, though. The neglect of care occurred before being admitted to the hospital a little over a month ago. She was suffering at least 4-5 months before that, as I have said. Nothing can be done about that now. I will go on a crusade at those dialysis centers, later, to try to avoid any other ESRD patients from having to go through all of this misery. We may not be able to stop it from occurring, but catching it early is key to survival.

[okarol]

Can they do an epidural? The localized anesthesia might last longer?

[Concerned Step-Mom]

I just wanted to report that our beautiful daughter, Carrie, withdrew from dialysis, and only two days later, passed away on November 15. Her father and I were at her side went she passed. Please don't leave it up to the doctors and nurses to keep an eye on the phosphorus, calcium, and parathyroid levels. We learned the hard way...the worst way. Thank you for your kind support.

[MooseMom]

Thank you so very much for letting us know.  Carrie's story was particularly horrible.  She endured immense suffering, and I am grateful it is over.  To you and your husband, my prayers and best wishes. 

[cassandra]

       


And lots of love, and strength, Cas

[okarol]

I just wanted to report that our beautiful daughter, Carrie, withdrew from dialysis, and only two days later, passed away on November 15. Her father and I were at her side went she passed. Please don't leave it up to the doctors and nurses to keep an eye on the phosphorus, calcium, and parathyroid levels. We learned the hard way...the worst way. Thank you for your kind support.

OMG I am so very sorry. This just should not happen. Sending you and your family lots of sympathy and {{hugs}} 

[paris]

I am so sorry.  I am glad you were with her when she left this world. May God wrap His loving arms and give you peace.  Such a sad situation.