Thursday, June 19, 2008

Here we go to St. Francis - Bartlett for an IVIG - hopefully!

The status of my receiving an IVIG is as being on the old merry-go-round at the Fairgrounds in Memphis, up and down, round and round. You know, that was many, many years ago, like in the 40s. Okay, let's not digress

I have not written here yet about all that happened with the cessation of my receiving my IVIG at St. Francis - Bartlett Hospital, though I did make many attempts at doing so. It just never seemed to gel into anything acceptable to me. Much has been going on, most of it I *get it* but there is yet some I do not. There is just so much here, there, and yon.

It has come to a point now where it is not only easier, but probably more advisable to pull it together now, and it may even come with that pretty little bow.

I am not sure of the time sequence, but we had received paperwork to be filled out, steps toward reaching approval for getting an IVIG done on an out-patient basis at an infusion center. Jim wasn't sure what good it all would do, but he completed them. This is the area that I do not recall, nor understand clearly

The stage was set. It was Thursday, June 5, 2008, and time for me to go back to St. Francis - Bartlett, Hospital for my next IVIG on Monday the 9th. He would be having his prostate surgery the following Wednesday. Shortly after time for the office to be open, Jim called Dr. Seed's office to remind Sheila about sending Dr. Saeed's orders to the hospital for approval of admission. He had to leave a message for one of them to return his call; it was not long before my cell phone rang; it was Dr. Saeed. He talked to me a few minutes, explaining there would be no IVIG, and some explanation of why, until he got to the point that it would be easier for him to explain and discuss it with Jim.

In a bit, he came back over to where we had been having our morning time together, but he did not sit down. Instead, he told me there would be no IVIG the next week, nor the week after that, nor after that, on and on. What? It is at this point I have found it hard to keep going on with telling everything. I was just so shocked, and trying so hard to absorb what he was saying. Nothing could stop the sudden burst of tears. What would happen now? For a few moments I sobbed. I felt as if I had been stabbed in the heart, and all life-giving blood was draining from me, all hope flowing with it. A flood of emotions flowed through me, one after another. There was even one of gladness that I was not having to finish packing to be gone for a week. That was but a fleeting one, not lingering. Otherwise, the quietness was deafening, bound to burst any drum. It is stuck in my memory of Jim standing there in that loud quietness, finally saying, "I'm so sorry." On one hand it seemed he was apologizing that he had to go on with his surgery, that all was "go" for him, while the floor had just dropped out from beneath me. His empathy was deeply felt. It was, I guess, one of the strangest moments in our lives together. I told him to let me have my good cry, then I'd be ready to face whatever it was we were facing full force. That was good to a point. Problem was, I had no idea what we were facing. All I had gleaned at that point was that I was banned from receiving IVIG treatments at St. Francis - Bartlett Hospital, paid by Medicare. The way I understood it, if I could and wanted to, I could pay for it myself. Sure. No way could we pay for any of one, much less one each month. What to do? What was going to happen? It was scary; frightening. I had been hit with the realities of MG in a sudden burst to begin with, and here I was still learning all the ins and outs even now. It did no good to think about things; I didn't seem to know enough to even think about. You cannot think something through that you do no even know about or understand fully. The main thing that filled my thoughts were "no more IVIG treatments." And the way I understood it, I needed these for any chance of improvement. Here was Jim getting ready for the hospital. Peg also has cancer and in need of surgery. Then Saturday morning I got an email from Aunt Naoma that Uncle Harry had died. In between were other of life's _______ , feeling as if I were in the middle of this hurricane, being spun round and round and round, going deeper and deeper and deeper as if there were no end in sight. Sometimes even today I get that *spun out of sight* feeling when thinking of all of this. So, what is "this?" Where did *it* come from, and where was *it* going?

The packing for the next week was almost finished; I just lay back on my bed. We talked, bringing up one thought after another. Jim knew that some of what he was being told as the *reason* held more than a grain of truth to it as far as Medicare was concerned.

One of the first things Jim did Friday morning was to send an email to some he knew in he health care business from here, and all about the area, asking if any knew of any infusion center. Before the work day was finished, he had made a contact. It is so interesting to see throughout the day how things dwindled down to a single center near to us in Jonesboro at St. Barnard Hospital. We closed our eyes that night with a glimmer of hope way down at the end of the tunnel.

Here, we had been making that trip to Memphis, through traffic, and all sundry events from Shields to Kate Bond, spending an average of a week in the hospital, then making that return trip home, hoping I felt better than when I had entered the hospital the previous Monday. If I felt good enough, we usually would get a good meal out of discharge day. It was a big chunk out of my month. Now here we were talking about 50 miles to Jonesboro, home of Turtlecreek Mall that Ashley and I seemed to be drawn to like a magnet.

What were the trade-offs, though. Nothing squares away equally. If accepted at the infusion center, it would be out-patient, meaning a drive to Jonesboro every day for five to seven days, depending on how I handled the treatments now, and they had to be five or seven days. Could we handle that drive that many days in a row? Ha! I told Brenda I could just sleep in my clothes if we were due to be there very early.

The woman at the infusion center located at St. Banard's called Jim early Monday morning, the 19th. One thing she mentioned was that they required a local neurologist. Aha! I *do* remember that much. Jim called Dr. Saeed's office and left a message for him to call the center. He had not been aware of if. One of the things that he had learned on Friday or earlier in the week, I think it was, was that I had been approved by Home Health . . . again, *I think* that is where the approval was, but they had a few misgivings due to the side effects that I experienced, especially the one last month. Was it safe for me to have the infusion outside of the hospital, not close to doctors and medical personnel. There is still more talking to be done about that. What is the risk to me?

One of the criteria Jim learned was that a local neurologist is required. He understood that the neurology clinic was filled, and getting an appointment, being taken as a new patient would be quite difficult. Jim called Dr. Saeed to have him call the doctor at the clinic.

With moving down to Debbie's, Jim's surgery, and other things, it has sometimes gotten difficult to keep up the days and dates. Debbie has been picking up our mail, and Jimbo picked it up earlier in the week, and took it to him. In with the mail was a *new patient* information sheet from this neurology clinic. It is our summation that 1) Dr. Saeed has called the clinic/doctor. 2) I have evidently been accepted as a new patient with an appointment given for 10:00 a.m. the day following receiving the mail. 3) Unable to keep that appointment due to the lateness in receiving the notification, Debbie was to call and change the appointment.

Now, another thing . . . The time required between the last IVIG and the next one that Medicare will pay for has elapsed, and this coming week will fulfill that requirement, meaning I am eligible to receive an IVIG next week beginning the June 23rd! I have not talked to Jim today about it. This is all through yesterday, the 18th.

Debbie has been handling all of this on our end for Jim and me, or I should say *with* Jim. It is also time for my port to be flushed, and she has had to take care of seeing to arranging that. Since I *should* be getting my IVIG next week, that will take care of that. I have not talked to her yet today; she is just barely home from work, and at the ball field right now. Tonight or tomorrow will bring more and clearer news. Maybe tonight since I just got a call from Jim. I'll have him look over everything I've written.

Debbie said the orders were received effective for Wednesday. I'd really like to begin Monday, I guess out of habit, but just being able to get it is really good. Now if we can just get things settled with the Jonesboro clinic, and doctor there.

I should say things are looking much better than they did two weeks ago. Having new pictures of the great grand-babies make lots of things look better. Here is our princess Kaitlyn on a summer day in Dayton.

And having things going well with my honey helps, too. Here he is the morning after surgery. I'd say, the gentleman does look nice in a robe, doesn't he? He's always claimed not to like wearing one, but he may not have a lot of choice once I get him home. I doooo like the way he looks, and this is before his recuperation. hehe

Striving for a world without Myasthenia Gravis

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