I'm finally getting an infusion
Posted: Thu Sep 12, 2019 6:12 pm
I have been meaning to post about this for days now, but my days are full, either with visiting places and people (mainly Ann aka viewsaskew!) or with trying to sleep.
I have been taking oral iron for years. I have noticed if I stop, my symptoms worsen after a month to 5 weeks. When I start again, there is an equal lag (4 or 5 weeks) before the symptoms subside again. So I figure there's a good chance IV iron will be effective for me.
The specialist in Edmonton that I see every few years, however, is not willing to recommend infusions when my ferritin is over 40 (maybe if it was under 100, I could convince him, but not with it up around 200). I contacted Johns Hopkins but was not going to be able to see Earley. And if I wanted to ask questions of the doctor they had assigned me (such as, will you prescribe infusions if my ferritin is 200) I would have to pay a thousand-dollar fee for a "remote medical opinion". So in despair one night at 10 PM I emailed Dr Buchfuhrer in southern California. By 11 PM he had replied, and the next day when I called his office, they were expecting my call. I got an appointment to see him Sep 3.
It was a long trip to get here, but family and friends have made it easier for me. Buchfuhrer's office had to re-book me for the 4th, which was apparently a very unusual event, but what a great consultation on the 4th! I have 4 options to change my treatment, one of which is IV iron and all of which can be done in combination. The others are:
to increase the Lyrica (scary cuz gabapentin made me severely depressed and thinking suicidally);
to add a bit of Neupro (scary because I augmented in days on ropinirole - but, my ferritin is higher now so it might be ok); and
to switch from hydromorph contin to Belbuca (buprenorphine film) (but he wants me to lower my current hydromorphone dose by one of the other methods first).
I wanted to try the iron. I have no insurance in the US, but Dr B's office tried to find the cheapest option for me - considering both the cost of the iron infusion itself (cheaper if I could get InFed (the iron dextran) and cheaper if I can get it done by a pharmacy nurse who comes to your home, as opposed to being referred to a hematologist, which involves a second consultation, the possibility that the hematologist refuses, and the added cost of staying here longer because of the time it would take to get in with a hematologist then to wait for the actual infusion.
Yesterday morning I was told that they had found an infusion pharmacy that would accept cash patients but would only use Injectafer (the iron carboxymaltose), probably because they were still gun-shy of iron dextran from back when suppliers provided a high-molecular-weight version of the substance, which caused toxic shock in a lot of people who took it, instead of low-molecular-weight iron dextran, which is very safe and is the only type now supplied. The Injectafer would cost 1500 instead of something like 500.
Yesterday afternoon I got a call from the infusion pharmacy, very apologetic, but about a month ago - unbeknownst to Dr B's office - they had to change their billing practices to charge uninsured patients the same as insured ones. So the cost is going to be $3000. OUCH. Especially because I might have to be back in a few months - if it takes, I don't know how long it will last! 1500 was a heavy enough hit, 3000 is evil!
But this is the thing: my life is only a fifth of a life. I hvae very little energy. I have money saved for retirement, but what's the use if I die before I get there? What's the use, if I get Alzheimer's like my mom, and can't do anything with my money? What's the use of retirement money if I'm not going be alive or have all my faculties? So I decided to spend now and worry about retirement later.
Tonight I will get visited at my little b&b by a nurse who will give me 750 mg of Injectafer. The place is a tiny 3-room bungalow in Long Beach with no real privacy - I'm in one bedroom, the other one is occupied by another paying guest, and the owner is sleeping on the couch in a very small living room! We can hear each other breathe. Both of them will probably be home. Lol. But we get along well so it might be a teaching opportunity about WED/RLS.
I was surprised to hear Dr B say I am on a high dose of hydromorphone. (9-10 mg). I was up at 18 -21 before I changed my diet. I also saw that Ann wasn't having daytime symptoms as much as I was (just in the few times we've been together). I've started to wonder just how bad is my WED/RLS - I like to think that it;s not bad because it;s gotten so much better. But those two things now make me wonder.
But I don't really want to dwell on that.
So that's where I'm at! Since I had to come here anyway, I decided to make a trip of it. I'm staying in Long Beach to be near Ann (and it's a pretty cool area). I spent two days at a racetrack in the desert learning to ride a sportbike (what an awesome rush). I have a number of other things I want to do here, but first - now that I know when my infusion is going to be - I need to arrange a flight home!
I have been taking oral iron for years. I have noticed if I stop, my symptoms worsen after a month to 5 weeks. When I start again, there is an equal lag (4 or 5 weeks) before the symptoms subside again. So I figure there's a good chance IV iron will be effective for me.
The specialist in Edmonton that I see every few years, however, is not willing to recommend infusions when my ferritin is over 40 (maybe if it was under 100, I could convince him, but not with it up around 200). I contacted Johns Hopkins but was not going to be able to see Earley. And if I wanted to ask questions of the doctor they had assigned me (such as, will you prescribe infusions if my ferritin is 200) I would have to pay a thousand-dollar fee for a "remote medical opinion". So in despair one night at 10 PM I emailed Dr Buchfuhrer in southern California. By 11 PM he had replied, and the next day when I called his office, they were expecting my call. I got an appointment to see him Sep 3.
It was a long trip to get here, but family and friends have made it easier for me. Buchfuhrer's office had to re-book me for the 4th, which was apparently a very unusual event, but what a great consultation on the 4th! I have 4 options to change my treatment, one of which is IV iron and all of which can be done in combination. The others are:
to increase the Lyrica (scary cuz gabapentin made me severely depressed and thinking suicidally);
to add a bit of Neupro (scary because I augmented in days on ropinirole - but, my ferritin is higher now so it might be ok); and
to switch from hydromorph contin to Belbuca (buprenorphine film) (but he wants me to lower my current hydromorphone dose by one of the other methods first).
I wanted to try the iron. I have no insurance in the US, but Dr B's office tried to find the cheapest option for me - considering both the cost of the iron infusion itself (cheaper if I could get InFed (the iron dextran) and cheaper if I can get it done by a pharmacy nurse who comes to your home, as opposed to being referred to a hematologist, which involves a second consultation, the possibility that the hematologist refuses, and the added cost of staying here longer because of the time it would take to get in with a hematologist then to wait for the actual infusion.
Yesterday morning I was told that they had found an infusion pharmacy that would accept cash patients but would only use Injectafer (the iron carboxymaltose), probably because they were still gun-shy of iron dextran from back when suppliers provided a high-molecular-weight version of the substance, which caused toxic shock in a lot of people who took it, instead of low-molecular-weight iron dextran, which is very safe and is the only type now supplied. The Injectafer would cost 1500 instead of something like 500.
Yesterday afternoon I got a call from the infusion pharmacy, very apologetic, but about a month ago - unbeknownst to Dr B's office - they had to change their billing practices to charge uninsured patients the same as insured ones. So the cost is going to be $3000. OUCH. Especially because I might have to be back in a few months - if it takes, I don't know how long it will last! 1500 was a heavy enough hit, 3000 is evil!
But this is the thing: my life is only a fifth of a life. I hvae very little energy. I have money saved for retirement, but what's the use if I die before I get there? What's the use, if I get Alzheimer's like my mom, and can't do anything with my money? What's the use of retirement money if I'm not going be alive or have all my faculties? So I decided to spend now and worry about retirement later.
Tonight I will get visited at my little b&b by a nurse who will give me 750 mg of Injectafer. The place is a tiny 3-room bungalow in Long Beach with no real privacy - I'm in one bedroom, the other one is occupied by another paying guest, and the owner is sleeping on the couch in a very small living room! We can hear each other breathe. Both of them will probably be home. Lol. But we get along well so it might be a teaching opportunity about WED/RLS.
I was surprised to hear Dr B say I am on a high dose of hydromorphone. (9-10 mg). I was up at 18 -21 before I changed my diet. I also saw that Ann wasn't having daytime symptoms as much as I was (just in the few times we've been together). I've started to wonder just how bad is my WED/RLS - I like to think that it;s not bad because it;s gotten so much better. But those two things now make me wonder.
But I don't really want to dwell on that.
So that's where I'm at! Since I had to come here anyway, I decided to make a trip of it. I'm staying in Long Beach to be near Ann (and it's a pretty cool area). I spent two days at a racetrack in the desert learning to ride a sportbike (what an awesome rush). I have a number of other things I want to do here, but first - now that I know when my infusion is going to be - I need to arrange a flight home!