Davita - Home Patients

Discussions for Patients, Family, and Friends HD For Patients
21

Can you clarify your question a little more? If you’re asking whether a home patient can get an in-center HD treatment at a different clinic, it depends. If you’re traveling, you can do dialysis at a different in-center clinic. You can use your insurance and/or Medicare to pay for it. If your other insurance is primary and refuses to pay, the clinic can bill Medicare for 80% with the other insurance denial. You’ll be left owing the 20% but for a short time, it may be worth the extra money to travel. If your Medicare is primary, unless you have a Medicare Advantage plan, you can go anywhere for dialysis.

So far as routine back up dialysis, the dialysis clinic that has trained you to do home dialysis is the facility that is responsible for providing in-center dialysis to you if you have a problem at home or if your partner needs a break. This is part of the responsibility of a home training program. It could help you arrange for a closer clinic to provide your dialysis temporarily if there’s a problem with your machine or your partner needs a break and you live some distance from their clinic. This would be like traveling dialysis.

As “kidney nurse” said, the reason why most dialysis clinics administer IV iron at the dialysis clinic is safety. The FDA has not approved any IV iron to be self-administered as far as I know and I’ve checked. It would be easier for the clinic to let patients self-administer just like it would be easier for patients not to have to go to a hospital or dialysis clinic to get their IV iron. However, if a patient stopping breathing while getting their iron IV, being away from trained staff and emergency equipment would drastically increase the odds that the patient would die. No one wants that. If some clinics have chosen to allow patients to administer their own IV iron, when the first patient has an allergic reaction, stops breathing and dies or is in a coma, people (including the family’s lawyer) will ask how clinics could have allowed patients to self-administer and every dialysis clinic again require patients to get IV iron where they can be monitored by healthcare providers.

22

We do venofer through the IV. Ralph gets it 2 times a month. We order it through my husbands insurance. Because it is given IV there is no co=pay.
Pat

23

Your arguement sounds good but just how often does it occur. Is there any documented cases of a home patients dieing from administering IV iron? You ask what are the deal breakers on home dialysis here is one. If your willing to travel a couple of hrs to get into a home program going back to the clinic for IV iron is a deal breaker. I can just see us traveling 12 hrs. once a week or once every other week to get IV iron. Our chances of dieing in an automobile crash are far higher than the chance of dieing doing IV iron administration at home especially in the winter months when the roads are bad. If you truly believe this is a major safety concern, I wouldn’t recommend patients get involved in home programs to far from their homes. The theory after training it is only 1 visit a month could become very misleading if in-center IV iron is the only safe way to go. I think maybe this issue should be addressed looking at all the scenarios. What if a patient is in-center and the closest hospital is 40 mins. from the center or the patient is home and the closest hospital is 10 mins away. If you were a patient where would you put your odds? I think the question of IV iron should be addressed with the patient and nephrologist and the patients whole circumstance be considered. No matter what we deal with for dialysis there is never just one right answer for everyone and I don’t think IV iron is any different. In a perfect world where everyone was near a clinic and hospital; I would agree but there are times and it’s not just dialysis where alternative solutions have to be reached. I can tell you from my own experience, physicans have allowed me to do treatments at home for both my parents because they felt it was safer than having them exposed to the public area where infections were more likely to be picked up. I’m sure they consider how capable the caregiver/patient is when making these decisions.

24

There is a very real risk from IV iron, but I wonder if it would be possible for a home patient who is far away from a “base” clinic to get the IV iron at a regular, in-center clinic closer to home, or even at a doctor’s office.

25

After reading all this I am now getting worried. I do my own Iron (Ferrosig 2ml ampoule once a month) in a syringe with 8ml of saline over an hour) and didn’t realise I should be so worried about reactions. Yikes! We are tested first during training and then it is all over to us. In centre patients get there iron paid for, some home patients don’t, now that’s a joke. Depends how rich and benevolent the Public Hospital is.

I hated having an Iron infusion in the arm in hospital several years ago before dialysis though. The needle wasn’t placed in securely and first thing I knew arm was all red and swollen with the stuff. I had severe staining up to my forearm and still do years down the track, like a dark tan gone wrong. Hospital acepted no liability but then it is a little harder to sue out here than over there.

26

I would have to agree with kidney nurse, its the same thing they told me at my clinic, all based on FDA rules…

But hey, each time I was getting I.V. iron I felt weird, gave me some icky effects!! :shock:

I decided to go with oral iron, that worked much better for me…less side-effects…

27

I am on NxStage and I am not allowed to use IV Iron or IV Epo at home. It could easily be given through my machine, but no go. I am taking Proferrin Forte as my oral Iron med. http://www.coloradobiolabs.com/ProferrinForte/default.aspx
It seems to keep me afloat. I would not allow the IV iron isssue to determin rather or not I would do Home hemo. I loose less blood on my machine and since I have been on it my Hemoglobin has gone back up.
It will be a good day when they let us do IV iron at home though…
LSB

28

…the trouble with orally-taken iron is the poor absorption by the body. But for some it’s the only way I guess.

  • Bear
29

Dori, The answer to your question is probably not. You should just try sometime to co-ordinate an iron treatment through someone other than your own center. I think you’d find the amount of time you spend on the phone trying to connect with the right personnel to get it done and set up the appointment very discouraging and to go through it each and every time would be a real hassle. Then have to do it for 10 or more patients and you would be spending your day on the phone. If you think the patient could make the calls (wrong again) because no one in the professional medical world will take the word from a patient that they need an IV iron treatment without doing blood work first. More than likely even if you did find a place that would do the treatment they would want to do blood work first. I can’t see how the risk for the patient is any less by having it done in-center? Unless the center is closer to a hospital. Someone is going to call 911 be it the center or your dialysis partner. I find it impossible to believe that nephrologist who allow IV iron to be administered at home haven’t considered the risks of home administration as compared to center administration and concluded should an event happen a patient at home is just as capable of having a partner call 911 as the center calling 911. If the risk of IV iron, is so paramount why not just insist IV iron only be administered in a hospital? I am not trying to down play the side affects of IV iron but trying to correlate the safety of iv iron with where it is administered is too big a stretch for me. Obviously death from IV iron must have occured in centers or in hospitals or we wouldn’t know it could happen. So far no one has come up with the evidence it occurs more often in home administration.

30

From the institute of health. It is estimated that more than 1.5 million Americans per year are injured from medication errors in hospitals,
nursing homes, and as out patients.

31

Marty, they probably don’t call 911, they keep Benadryl and/or epinephrine on-hand to administer if there are any early signs of wheezing, shortness of breath, etc. that would suggest an allergic reaction. And I wasn’t thinking of patients trying to set up local IV iron by themselves, I was thinking that perhaps the home center might arrange it.

32

It is my understanding that persons allergic to bee stings carry benadryl
with them in case they get stung by a bee. Then they go to the hospital.
Seems to me at risk home patients could have the benadryl also. When we do IV iron at home, I am never away from dad for more than 5 minutes I would for sure catch early signs of wheezing etc. Suppose a patient did go into shock or coma in-center what do they do if a DNR order is in place? Realistically Dori, no home dialysis nurse has the time to be making iron appointments at other facilities for patients and realistically no other place is eager to take on the interruption of their scheduling on a frequent basis. Realisitcally, I still cannot believe any nephrologist who writes a prescription for IV iron to be administered at home doesn’t know and hasn’t considered the side affect of IV iron. My guess is they also think it’s a stretch to take the risks of IV iron and determine that if it is done in-center this some how eliminates the risks and more appropriate action will be taken. I know when iron is administered to an in-center patient no one is there the whole time it is being given watching the patient. They go on and do other things. At home we are there. We certainly would see a reaction much faster. I think I’ve said enough. If decisions are made on “where” IV iron should be administered based on fear and not fact I can’t do anything about that.

33

Staff in dialysis clinics do more than call 911 if there is an allergic reaction or a respiratory or cardiac arrest. All staff (nursing and non-nursing personnel) at dialysis clinics should be trained to do CPR. As a dialysis social worker, I had to be trained, re-trained, and certified regularly in my clinic. We had nursing personnel in our dialysis clinic that had advanced cardiac life support certification (ACLS) which required special training in reading an EKG and knowing what to do in an emergency. I don’t know if every clinic has this, but in my opinion, this is wise.

Every dialysis clinic has a “crash cart” with emergency drugs that are supposed to be checked regularly and replaced when outdated. There are the devices to use to help get oxygen into the patient’s lungs if he/she stops breathing, an EKG monitor to watch the heart rhythm, and a defibrillator or AED to shock the heart if it stops.

If a patient stops breathing, one staff should call 911 and other staff should immediately start emergency procedures long before the EMTs arrive.

I would encourage everyone to learn CPR even if they don’t have someone with a chronic illness in their home. You never know when you might need to know it.

Here’s an abstract of a study that examined different IV iron products and problems related to them:

Nephrol Dial Transplant. 2005 Jul;20(7):1443-9. Epub 2005 Apr 26.

Hypersensitivity reactions and deaths associated with intravenous iron
preparations.

Bailie GR, Clark JA, Lane CE, Lane PL.

Albany Nephrology Pharmacy (ANephRx) Group, Albany, NY, USA. bailieg@acp.edu

BACKGROUND: Parenteral iron therapy is an accepted adjunctive management of anaemia in kidney disease. Newer agents may have fewer severe hypersensitivity adverse events (AE) compared with iron dextrans (ID). The rate of type 1 AE to iron sucrose (IS) and sodium ferric gluconate (SFG) relative to ID is unclear. We used the US Food and Drug Administration’s Freedom of Information (FOI) surveillance database to compare the type 1 AE profiles for the three intravenous iron preparations available in the United States. METHODS: We tabulated reports received by the FOI database between January 1997 and September 2002, and calculated 100 mg dose equivalents for the treated population for each agent. We developed four clinical categories describing hypersensitivity AE (anaphylaxis, anaphylactoid reaction, urticaria and angioedema) and an algorithm describing anaphylaxis, for specific analyses. RESULTS: All-event reporting rates were 29.2, 10.5 and 4.2 reports/million 100 mg dose equivalents, while all-fatal-event reporting rates were 1.4, 0.6 and 0.0 reports/million 100 mg dose equivalents for ID, SFG and IS, respectively. ID had the highest reporting rates in all four clinical categories and the anaphylaxis algorithm. SFG had intermediate reporting rates for urticaria, anaphylactoid reaction and the anaphylaxis algorithm, and a zero reporting rate for the anaphylaxis clinical category. IS had either the lowest or a zero reporting rate in all clinical categories/algorithm. CONCLUSIONS: These findings confirm a higher risk for AE, especially serious type 1 reactions, with ID therapy than with newer intravenous iron products and also suggest that IS carries the lowest risk for hypersensitivity reactions.

34

Beth, Just what are you trying to justify here. That all patients who aren’t close enough to go in-center for IV Iron treatments give up home hemo? So lets look at the real deal here.

I take dad back in-center because even though he hasn’t had a reaction to iron in 6 years he just might and they can save his life even though he has a DNR order.

Now that I have made this decision, he can now live with no appetite, no energy, hypotension, RLS, confusion. and this is a given. My question is will he live longer or even “want” to live longer with crappy dialysis as compared to taking the risk of doing IV iron at home and truly being able to enjoy his life until this iron reaction kills him if and it’s a BIG IF it ever does.

So what this really boils down to is you are willing to have a patient take the risks and side affects of in-center treatments as compared to taking the risk of administering IV Iron at home.

Sorry, it’s the patient suffering here and it should be their choice. Once you start insisting IV Iron only be administered in-center you are taking away their right to home hemo (if the drive doesn’t permit it) and you are not letting them make the choice. By making a decision like this it would Knock our home hemo program in half and all those patients enjoying and having a good life would once again spirtually die and feel sick.

Becareful what you wish for … you just might get it.

35

Are you telling me if a patient has a DNR order the center is going to ignore it and start there heart and give them CPR in the event of an iron reaction. Why do patients give DNR orders if they aren’t going to be followed. Here’s where I’d sue.

36

bobeleanor, To answer your question I don’t think there are any laws that totally include every center. I think there are Federal Regulations, State Regulations and Center Regulations and Nephrologist Regulations and it just depends on where you are at and who you are working with as to what you can and cannot do. I know your frustration. You go on line and hear of people doing things and then find out you can’t simply because someone’s policy is different.

37

In clinical studies, several patients experienced hypersensitivity reactions presenting wheezing, dyspnea, hypotension, rashes, or pruritus. Serious episodes of hypotension occured in 2 patients treated with Venofer at a dose of 500mg.

From the post-marketing spontaneous reporting system, there were 98 reports of anaphylatic shock, loss of consciousness or collapse, bronchospasm with dyspnea, or convulsion) associated with Venofer
administration between 1992 and August 2004 based on an estimated use of MORE THAN 3.4 MILLION PATIENTS.

38

Hi Marty,

I can tell by your vehement posts that this topic is one that really bothers you. It’s certainly frustrating when a policy that seems to be just bureaucratic makes it difficult or even impossible to do a home treatment.

98 reports of anaphylactic reactions among 3.4 million people seems like a pretty small number. I did a little sleuthing in PubMed to see if I could find a paper that clearly states the risk of other types of anaphylaxis (e.g., shellfish or other food allergies) in the population so we could compare the risk. The best I was able to find was a possible rate of 1-3 per 10,000. 98 in 3.4 million would be one per 34,000, so about 1/3 the rate of food allergies (which they called “common” even though there were no numbers!).

Clearly, this is truly a small number. Unfortunately, it’s not just a matter of patient choice to take on the risk, because every dialysis provider has a fleet of attorneys who try to reduce their exposure to possible lawsuits–and if someone dies doing IV iron at home, it’s a lawsuit waiting to happen, even if a disclaimer is signed ahead of time. Sad but true.

39

Hi folks
Hey Marty
It is very mixed up, and it depends on the first center and doctors the pt and family have contact with, with me the first center and group of doctors I knew for a fact were not up front with me. So that really s–ks big time. The thing the pt needs most first and fore most from the center and the doctors is trust. When that is lost the center and doctor can never get it back at least not from me. Others may feel people are human and make mistakes. mistakes are ok in baseball or football, but when it comes to your health, these folks must have a back up check sytem in place to question the nurse or doctor to try and make sure mistakes are tiny ,not life theaten.

On iron I’m working with a new doctor and he and I had a good talk this day9/26/06. I’m going to try a RX iron orally. I’m going to cut by my txs. to 4 days( longer tx time up to 4 hrs) a week instead of 6(2.5 hrs) just till the end of Jan.07. We will then see how I feel and what the #'s say. I do want to go on nocturnal down the road, but that will be sometime in the spring of 07. The big thing for me is my day light time to get work done.

As for renal nurse , I have no question on your point about why your in this job. It is just hard but I’ve around long time and have seen the changes. I know that nurses have far more work that they must do today than in past. But you know not every pt is a good pt and not every nurse is a good nurse. I have met both, like I said my first trip into dialysis left me very concerned about centers. I don’t have the time nor the $$ to travel over the country to see all the centers. and since this page won’t permit talk about centers and the deo page is junk it hard to get a real feel for how pts in center across the country and world have there centers set up. I’ve see three centers so far two have been ok center but the first I was in was a hell hole.

40

Yes, my post were on the angry side. The post raising the big safety issue of IV iron not only scared patients but in a since was implying that nephrologist who prescribed this were not “safety concerned”. This I totally resented as our nephrologist is great and I knew he wouldn’t do something without really studying the benefit against the risk.

If it’s a bureaucratic issue and someone is worried about lawsuits so be it,
but call it what it is and don’t try to defend it by over playing the safety issue. That was misleading and unwarranted. With the odds of 98 to 3.4 million, I’d say those lawyers waiting for the lawsuit better get another job or they will starve to death first.

As far as the patient aspect goes that didn’t bother me near as much, I think it’s unfortunate this can be a deal breaker for patients when we are looking for ways to get them into home hemo not keep them from it.