My most unusual IVIG hospital experience to date!

As you can see by the previous entries things did not go as they usually do. At first, it was much better. Admissions could not have been any better, except I was not able to be a direct admission. Not surprised with the way this hospital is growing by leaps and bounds, and having to enter an expansion program into the short years of its life. Their census is overwhelming. Thank you David Shaw for helping to have Dr. Saeed's orders there this time. We all got a big laugh out of the fact that there were four, three extra copies! That's okay, isn't it?

The only place they had they could put me was in the hallway in the ER, so we went to the waiting area to wait to be called. We did hear Evelyn say it looked like maybe there was someone in a cubicle getting ready to go home, so when we had to wait a while, Jim thought maybe they were waiting to put me in there. Sure enough. As Oscar and I had putt, putted, along behind the nurse, we just barely got through the doors, when she said, "Turn left right there," which I knew from prior experience it was cubicle #2 (was in #1 last month ;). Christen was my nurse. My, Christen, you sure did grow up fast, and I see you became a nurse. Noooo, Billie, it is unusual, but this is another with the name spelled with a *C* just like our Christen's is spelled. I got up on the stretcher in Cubicle #2, and did my best to get all comfy for the time I was going to spend here, and in Admin/Holding before going to 3rd floor, and *real* comfort.

It was most difficult to get comfortable, first of all because it was so narrow, and secondly because it was so stiff and hard. It will do temporarily, though. Jim went out and got my belongings for the week's stay. The afternoon was drawing on, and he was tiring, so he went ahead and headed back home. Check-in is so stressful for him, both physically and emotionally. Wish it didn't have to be so drawn out for him.

Christen got on with all the question taking. Oxygen was a bit low, so she started it. Oh, what a difference in my chest! She got interrupted frequently, so it dragged on. One of the interruptions was the report from the lab saying my blood sugar was 564. Christen called Dr. Elias, then I gave myself 25 units of Humalog, and was to check back in an hour with Dr. Elias. One hour later it was 400, which meant from what I had been taught in the diabetic clinic that if it was dropping, then the insulin on board was working, and it should be checked in another hour to check the status, and if still dropping, all appears well, but to keep on checking it. Instead, Dr. Elias order fifteen (15) units of *Regular* insulin at the one hour mark, an insulin I have never taken, and had no idea how it would work with me, and especially with my pump. Christen gave it to me, and we waited. Elias was looking for a >300 reading. We gave it to him at 9:22 with a 201 reading. That was satisfactory with Elias and Christen, but I knew I had two different insulins working on board, and I know how I go hypo during the night (down to 16 a year ago), so I made sure I stayed awake to check on my blood sugar. I ate graham crackers to stave off a low; 88 was as low as I got on any reading I took.

The hospital was unable to provide me with my evening Mestinon 180 timespan, and I was asked to get into my emergeny bottle that I carry with me at all times, and take one from that. I do not like it to be known that I have that on my person because in the past they have asked me to use my own meds. I took a Mestinon 180 timespan from a bottle of pills I had in my purse. It was my understanding that Christen noted it in my chart that I took my own medicine, and not one provided by the pharmacy.

My view from the strecher.

Christen got my IV started. It only took two tries. The left arm blew immediately, but the right one did beautifully. Now, we just wait for pharmacy to get all my little gamma globulin buddies readied as they will course through my veins as in a marathon. They anxiously await. I, their hostess, arrived about noon, and once finished with admissions, and in Cubicle 2, more than 1000 and upwards to 10,000 of them have been being preparing for this big event. The time draws nearer. I am anxious, excited. Last month's IVIG yielded such excellent results with the five (5) day infusion rate, and working with the nurses whenever the headaches started. All in all, an experience looking forward to repeating.

IVIG started @ 9:00 p.m. Monday, March 17th

And they are off and running! An IVIG for those who are new is an Intravenous Immunoglobulin with a link here to Wikipedia for an indepth description. Here, I refer to them as my gamma globulins, and sometimes my globulins. Just depends on my mood. The IVIGs since last May have brought enough improvement in my Myasthenia Gravis that I look forward to this treatment every four weeks. It is only baby steps that I am making, but to me, they are giant steps! Yes, I do get discouraged at the slowness of the process, i'll not deny that, and sometimes I wonder at the futility of it all; is it worth it all in the long run. I do battle with depression, and I have found other myasthenics do. We tend to hold how we are feeling physically because people tend to not believe us when we express our pain, exhaustion, etc. One thing about the ptosis, no one can dispute that! I have read on the UK Forum of those who are able to work that their peers do not understand them and their disease until it reaches a severe point. This is one other reason I came online, is to speak for myasthenics overall. I am not in control, and there is no doubt for me, but what about those who are moderately under control, and can partially function in their world, but with adjustments needed?

A couple of hours later, Dr. Ali stopped by my cubicle to say "hello." My journal entry, "11:00 p.m. Dr. Ali came by to see me. He is not on my case, but he saw my name and wanted to come by and say hello. Dr. Elias will be my doctor throughout the admission.. Does this also mean no Liesl? This saddens me, and puts a kink in things for me. It doesn’t mean that I do not like Elias, but he doesn’t listen to me like Dr.Ali and Liesl." Elias just asks me how I'm doing, but never checks me like a doctor. I've never known him to check my heart and lungs, leg swelling, and the other things that are pertinent only to the IVIG infusion. He *appears* to be unaware of my MG symptoms, especially bulbar and facial ones whenever they have worsened. If so, he never talks to me about them. He has no idea how frightening it is when you are having trouble swallowing, breathing, aspirating your own saliva, choking . . . and other upper problems. I have not seen him yet, so since he is the only doctor, maybe this time will be different since he is the only doctor other than Dr. Saeed, my neurologist.

Mercy, those runners are making themselves known, running all throughout my body, giving me all their good antibodies. At 4:00 a.m. my blood sugar reads 88 again. I have a new nurse on duty, Gregory. Ahhhh . . . a family name. In fact, that is Oscar's last name. I'm still on oxygen, and am developing a headache, though only mild at this time. Still considerable vision disturbance. Still a bit too soon to be noticing a big lot of change for the better.

The headache is progressing, and I get a percocet, with breakfast soon afterwards. Not much, but I'm sure it was bound to help. I felt really rotten when I was admitted, and am feeling better now; I'm sure getting my bg back to normal plays a big factor in that. Whoo! I'm not used to a 564 bg! What happened was my pump reservoir emptied on the way down to the hospital, and during admissions. I was hungry and had eaten an Arbys because I was so hungry, and knowing it would be a while before I could get something to eat. I was not aware my reservoir was empty throughout that time in admissions. Not until the lab came back with that reading. Refilling the reservoir got things under control once again.

Most of my meds were there by 10:30, a few trickling in at a time. My Mestinon was the main problem I had; my most important med, along with my Prednisone. With MG it is of the utmost importance that I take my Mestinon *on time* for it could be dangerous, especially so where it concerns my breathing. This is something I have had a problem with the entire time I've been receiving the treatments, but the nurses on the 3rd floor have just about all learned how it is to be dosed. I bring a detailed description with each admission. I gave it to Christen when I was admitted. It also lists all the medicines I currently am taking at home.

Liesl was down in the ER, and saw me in my cubicle. I motioned for her to "come in." We talked about the changes that had been made, all without my knowledge. I had had Dr. Ali explain it to me the night before when he stopped by to speak to me. It still was not completely clear to me at this point, but I did get the impression that I could request Dr. Ali to be my doctor next month, that I, the patient, had a say-so in the doctor who treated me.

From my journal following Liesl's visit, "Liesl was in the ER and stopped to say Hello. Told her to stop to “visit” after I was upstairs, that Dr. Ali had done that last night. An unofficial visit. I could tell they were disappointed at not being on my case. Not nearly half as much as I am. Gonna have to talk to Saeed about that. Makes me cry to think of this change.. Not good. Definitely a bump in the road. :( *big* bump!"

The first signs things did not seem to be going well for me this time. This concerns me because my *spirits* play a big part in the success of the IVIG. We really found this out last month when I was involved in the blood drive with Manic Mommy. It showed me just how much interacting with people was so good for me, not only with the IVIG, but with my MG itself. It has been my plans since the blood drive to find something else in which to get involved. My IVIG began to wear off right after the two (2) week mark, and by the 4th week, I was showing more serious symptoms, and by the time I came in on Monday, it had been five (5) weeks, and the symptoms had worsened even more. It was later determined that I could not go more than four weeks between infusions, something that Dr. Saeed and I had already established. This change was to help accomodate our family as Jim was due to have prostate cancer surgery on Wednesday, the 19th, and this would fit into our plans better. Well, now we see that it wouldn't have.

Just to make sure my pump, and everything was still doing okay, I kept check of my blood sugar, and it was always around the 88 mark. Good.

Chris and Brandon popped into my cubicle about 12:45, and said I was moving over to Admin/Holding. And just when I was so comfortable. :::Sigh::: This meant putting everything on the stretcher because I have to drive Oscar over to the other area. It is such a hassle to do anything down here because of my chair, and having to get it out of tight places, like in here. The guys get it all done, and we are off to Admin/Holding, the next leg of my journey in my IVIG treatment at St. Francis - Bartlett.

Since last fall the hospital census has been such that a direct admission would have to be someone severely ill, or in need of the cardiac room. Coming every four weeks as I do, I pretty much know the drill, and expect to spend at least a day in the ER//Admin/Holding area, not always having to go to the ER area first, though. And when they are having to put me in the hallway as they did before, and were about to do so this time, it means they have many waiting to go to a bed upstairs. I know the drill; those first-timers do not know to expect that, and many get very upset. In fact, the patient's husband in the cubicle next to mine was quite upset, and oh, my, they still had the next step yet to go. I wonder if their doctors tell them about the waiting. Dr. Saeed did from the very first time last May, and that was only for a few hours of the same day of the morning I saw him. He was wanting to admit me on the spot. It was not untl later, as I learned more about MG, that I understood why he was wanting to get an IVIG started as soon as possible. *We* thought we would be doing better by coming home, and returning early Monday morning. Oh, boy, were we ever wrong! We should have stayed on that Friday!

From my journal entry, "Chris and Brandon moved me over, I drove, they piled everything on my bed, Brandon brought it, Chris came with me, handling all my tubing. Got an extension on it so it isn’t so short this time."

The move did not disrupt the marathon. Chris carefully handled the bag containing my marathon globulins. They probably did not even know what was happening, which was good. They continued on with what they were called on to do, bringing those good antibodies into my body to replace my bad ones.

See you over in Admin/Holding, gammaglobulins and all!

Toodles
Striving for a world without Myasthenia Gravis