A lot of time has gone by since I last posted. I think I posted mainly about my concern re: the angiogram-- but things got so busy etc. that I couldn't post re: the heart surgery.
My husband has had open heart surgery last February. (Feb 5,2015 to be exact.) Many issues around that surgery but he weathered it -- but it was huge. Surgeon said (after surgery) there was a "river of blood". Very chilling.
My husband was set up on Humate-P during surgery and after for 12 days. He has Aquired VWD 2 (I think.) I think it's 2, but it is definitely acquired. I know how rare this is. Very rare. (Apparently, in 2010 there were only 300 cases reported world-wide.) ( It's been some years since then, but I doubt that figure has changed substantially -- maybe now it's 3,000 cases world-wide. Who knows??)
Anyway, we have a new problem, hopefully someone in the U.S. can answer (though obviously we are open to any thoughts.) But mainly it concerns Medicare reimbursement. My husband is due for a hernia surgery which is normally an outpatient procedure, but he will be kept in the hospital for a week after the surgery to receive Humate-P (which is the same thing used for the open heart surgery.)
My husband is not willing to have the surgery unless he can be assured of coverage by Medicare. (We've called the hospital (different departments) many times but no one seems able to answer our questions.) My husband placed a call to Medicare and that number was for providers -- not patients. Maybe we can find another number.
Anyway I'm wondering if anyone has had a similar situation? A situation in which you normally go home after the surgery, but you are kept in the hospital to get blood products or
Humate -P because of your VWD. (I imagine this is true for hemophiliacs?) Has your insurance covered the blood products?
If the only reason he is being kept in the hospital is to receive Humate P, then he maybe can get it infused at home by a home health visiting nurse that the pharmacy arranges. but I don't know if they do twice a day, if that is what he will be getting. Usually they give it twice a day til the levels are built up and then once a day for several days after that.. I assume they'd want him in patient for at least a couple days, but if there are otherwise no problems and a "normal" person would have been sent home, I'd opt to go home and get the remaining doses at home. My experience has been a hospital charges tens and tens of thousands of dollars for a dose, but when the pharmacy ships it to you at home, it might cost 3k. per dose. But that is paid by your pharmacy benefits. Ask your hematologist about that possibility. Frankly, if your husband has a comfortable IV in place, he can administer it himself, or you can, if they train you. I've done many of my own, the nurse put initial IV in, and then I did the administration every day after that and took the IV out myself. Not a big deal at all. ON another note, it is my understanding that the instances of acquired Type II vWD often exist because of a faulty aortic valve. Is that something that was fixed/replaced on your husband? If so has he had his blood checked since then?
Most of the nurses that travel around to do this stuff, they work for the specialty pharmacies, have a lot of experience with Humate P and/or similar drugs. That is not true in a hospital setting, most nurses have never encountered it. Sometimes pharmacy mixes the humate and sends it up, and I've been hospitalized where nurses mix it. My last hospitalization in March of 2015 (Umass Memorial Worcester) at that hospital, minor prothe blood bank houses the humate, not the pharmacy, so it goes to the floor for preparation. But I was on a floor where that was not allowed. It was a nightmare, there were all kinds of nurses and administrators having a pow wow in the floor nursing office, it looked like a clown car. I said dammit, bring it to me and I'll mix it myself. That was allowed if OK'd by the doctor, which it was. They only had small dose vials, they came up with SEVEN boxes, so I had to unpack, warm in my hands SEVEN vials, mix all seven, draw into syringe... the nurse administered it. I believe the pharmacy didn't want control of it because it's so expensive and if someone's insurance doesn't pay, they have to eat the cost. so it's a budget busting hot potato. The director of the blood bank came up to see me, very nice man, he apologized for the mess. (That was not the first mess up of the humate, but the first one's another long story, but that's how I ended up knowing who he was so he was on "speed dial"
Suzee has the question of the day about the aortic valve. If the "acquired VWD" was due to a faulty valve closure breaking up the VWV/Factor VIII and the valve was repaired the the VWD might be gone. What a blessing, if true.
I have had several procedures covered in the hospital, one minor, with factor being administered first until my PTT came down. It didn't do much because I have inhibitors that destroyed the factor, but Medicare did not seem to take issue with it. Keep the thought of inhibitors in mind if that is the type of acquired VWD you are dealing with. IGIV had to be used on me once because transfusions and P humate would not stop an internal bleed. The IGIV suppressed my immune system and it stopped making the @#$&&@@ inhibitors. I lived!
The hospital business office should have the facts as they usually clear the payment before the procedure.
Another thought, and I can't believe it's not my first thought because it would be my first thought if this were me contemplating surgery.... is this surgery absolutely necessary? Really necessary?
Anyway to answer your question Suzee your question about necessary surgery is a good one -- one we've wrestled with. Maybe you have other thoughts. In some ways this surgery is not necessary --my husband is wearing a hernia belt and that seems to take care of the pooching problem, however if he got into an emergency situation which the surgeon believes is possible, though he didn't push this -- most likely our local hospital would not have the proper blood products or the proper infusion schedule. (We would need to go to our local hospital instead of one an hour from here as planned) So given this, we feel the surgery is necessary. Also my husband is going to be 80 in August and that feels like who knows his situation then. 80 is starting to be very elderly -- though so far my husband is doing fine-- doesn't feel almost 80, doesn't look almost 80 etc. But also I just had a very bad diagnosis which I'm trying to deal with -- not cancer-- in case you wondered. I am 73 and this was quite sudden. So I'm not too sanguine/optimistic about what may happen after 80.
Btw - my husband, Ivar, doesn't have a heart valve problem so no answers there.
I was interested to read your approach to being in the hospital and nurses not knowing how to do the Humate P.
So you obviously "took the bull by the horns" and did it yourself. My husband isn't that type, just so you get the flavor of who he is.
Thanks for thinking of us. (I'm still unfamiliar with this site and may not do all according to "hoyle" ) Judy
Nurses not knowing the procedures...... expect this anytime you have to have P Humate (Alphanate) administered.
Even though my local hospital keeps dehydrated Alphanate in the Pharmacy, just for me, apparently, I have never had the same Nurse twice and it is always a first time experience for them.
I have my laptop connected to the hospital wifi and look up the alphanate administration protocol on Alphanate website. When the nurse comes in, we go over the administration procedure (buried in the fine print!). I always stress that the push IV (not a drip IV) be administered no faster than listed on the instructions. I have a big clock on my laptop that you can get by clicking on the time in the right-hand corner of Windows. I try and get across the idea that too quick a delivery breaks up the von Willebrands multimeres as they go through the IV needle and waste several thousands of dollars of medication.
We are dealing with a rare disease. Veterinarians who deal with Rottweilers have more experience with VWD than most hospitals. (The dogs are famous for having VWD)
Suzee takes the bull by the horns because she is outcome-oriented. In today's health scene, UK or USA, you have to know how to instruct the medical people with your "street knowledge". Most medical people accept that rare disease patients probably know more than they do and will work with you without getting upset over the role reversal. I find the nurses really relax when you take charge and tell them what you know about the procedure. After all, they have no experience and you do.
If you do have issues with medical people, call the hospital ombudsman. I carry her card in my wallet. If you are in the USA, make sure you have a copy of the Medicare Complaint number that comes with your Medicare statements. I have used that when a hospital was not following the rules. Medicare reacted immediately and the hospital started to behave... immediately. Also.... if there is post-surgical bleeding, take lots and lots of pictures (including details that show you are in the hospital) and if there are legal consequences, the trial will be a lot shorter.