Thank you..I would like to know how things usually progress..not sure he wants to 🙂 I can go see the education people by myself, but no phone call from them yet..will pro call dr's office tommorrow.

Could you send me tha name of the meds or contact info or such, of the drug/drugs you are speaking of?

I may have unscribed to this...going to subscribe again 🙂

Replidea™ has been shown in a phase 2b clinical trial to effectively and safely treat SHPT and the underlying vitamin D insufficiency in pre-dialysis patients. Vitamin D insufficiency arises in CKD due to the abnormal upregulation of CYP24, an enzyme which destroys vitamin D and its metabolites. Studies in CKD patients have demonstrated that currently available over-the-counter and prescription vitamin D products cannot reliably raise blood vitamin D prohormone levels or effectively treat SHPT.

"OPKO intends to market Replidea™ along with our proprietary point-of-care vitamin D diagnostic test currently in development," stated Phillip Frost, MD, CEO and Chairman. "We envision these remarkable products as part of the foundation for a new and markedly improved standard of care for chronic kidney disease patients having SHPT and/or hyperphosphatemia."

Alpharen™ has been shown safe and effective in treating hyperphosphatemia in the phase 2 and 3 clinical trials undertaken to date in dialysis patients. Hyperphosphatemia (elevated serum phosphorus) exacerbates SHPT and promotes bone disease, soft tissue mineralization and progression of kidney disease. Approximately 90% of dialysis patients in the United States require regular treatment.

I've copied the statement by OPKO about their latest med for chronic Kidney disease below. You can google more about it or ask your physician. most do not know about this medication for CKD but my husband's neph is really good at researching questions about meds.

Got the education...asked about a local support group.

Long story short ... my husband had a kidney transplant in 2012, donated by our brother-in-law (no relation). As a result of the immuno suppression (prograf) after the transplant, he developed squamous cell carcinoma (spindle cell) on his scalp. Local dermatologist and Mohs surgeon arranged for us to go to Mayo Jacksonville. In July 2015, his scalp was removed and replaced with a flap taken from his back. This was followed by radiation. More cancer appeared below the flap. Several surgeries and more radiation followed. The tumor board determined that more surgery was chasing ghosts and that a systemic solution was necessary. In summer 2016, he was weaned from Prograf in order to restore more immune system to fight cancer. He started Erbitux.

We knew that it was only a matter of time before he lost the transplant. He said he would not go on dialysis.

Beginning in Jan, the creatinine began to soar. He has hospitalized Mar 1 as Mr. Electrical Engineer was so confused and hallucinating, he could not even pick out underwear. It took 5 hrs dialysis over 2 days to recover to some lucidity. He will not receive another transplant because of cancer.

We started 5 weeks training immediately after he got out of the hospital for home-HEMO dialysis. His prescription is for 2 hrs, four days a week. We can do dialysis any time of day and any day we want, as long as not more than 2 days in between sessions. The NxStage System weighs 75 pounds and can go traveling! It can also be used for nocturnal dialysis.

I will not tell you it was not intimidating at first, but each time we become more comfortable.

Please take a look: http://www.nxstage.com/patients/system-one/

@gaybinator, Welcome to Connect. Thank you for sharing this information about your husband's dialysis option. But, most importantly, I feel that you are giving members a look at a potential alternate option for consideration when they are faced with this difficult dialysis decision.
I know that we have heard from some members who are doing home dialysis that have posted in the transplant discussions. I don't know if they use a similar system.

Who provided the 5 week training? And is there any follow-up or support available? I was briefly on inhospital and then outpatient dialysis for a while prior to my transplant. I think that my husband and I would require a lot of support.

I will be looking forward to hearing more from you.
Rosemary

@gaybinator, I want to offer you a most sincere welcome to our Connect Community. I am a transplant recipient, and that is why your entry is so special to me. I always feel blessed to meet other transplant patients - and this includes the spouse or loved one who has been the support throughout the entire process. For my husband and me, the whole transplant process is a "we" process.

Thank you for sharing your husband's remarkable journey. I admire the strength with which you and your husband are navigating the obstacles that have been set in front of you.

I invite you to take a look at some of the discussions that are occurring in the Transplant Discussion and Transplant Pages. And join in whenever you feel like saying something. I know that there are others who will like to meet you.
Rosemary

@angiede2001 Hi Angie: I've been thinking about you. I hope you are doing well. Teresa