Thursday, March 27, 2008

My most unusual IVIG hospital experience to date! Part II

NOTE: Direct quotes from my journal will appear in blue. Click on pictures for full size.

Here we happily come to Admin/Holding, the next step in the journey to the 3rd floor. Chris puts my stretcher next to the wall like they do upstairs, and it makes for much more room in there. Oscar fits nicely over in the corner. He places the globulin marathoners (IVIG bag on pole) next to my stretcher. Since I am tethered to them, they have to go everywhere I go. Everywhere! That means gathering the marathon runners, getting into Oscar, getting Depends and pads, and heading to the public bathroom. Here, it means having to be appropriately dressed/covered, whereas in my private room, I can be dressed the best way to accommodate my incontinence. Needing help for dressing or making a change in clothing requires help from the nursing staff For now, though, I am going to climb back into bed, and await lunch. Lunch comes late today, about 1:15, in a little plastic container such as is used in Same Day Surgery over at Baptist. Attempt is made at hot food, but really, there is nothing to keep it hot. Any way, for such a short period of time there, it certainly is not an issue. It is better once upstairs in a real room, on a tray, and in a hot plate. Maybe not much longer since I am starting my second day here.

A little while later Debbie, NP, from Dr. Saeed's office comes by. It is nice to see her again. I cannot remember what it was that alerted her to the fact that I might be from Arkansas, but when I told her I was, she asked where. She was from Bald Knob. A few moments of fun, light talking. From my journal, ". . . did a pretty good assessment. Going to do some PT in preparation some Home Health PT hopefully to strengthened my leg muscles, and have the speech therapist to see me about my swallowing, choking, throat area in general. She stressed the importance of taking the Mestinon on time. " She said the PT could not start until I was in a room, and she'd really like to see me in a room later that afternoon. (don't laugh at her and my naivety!), though I *did* tell her I thought it unlikely to happen today, Tuesday, because my neighbor was one ahead of me. We, my neighbor and I, had pretty much moved along together, one after the other. She noted the change, the weakening of my facial muscles as we talked. One other thing she noted of importance was that going five weeks between IVIG treatments is too long. My symptoms begin reappearing, and worsen too much.

I was very pleased with Debbie's examination and assessment of my Myasthenia Gravis, and with her plans to incorporate some new therapies with the Hope of assisting the immunoglobulin, those globulin marathon runners coursing through my body with healthy antibodies! *Happy smile* This is the type of thing that lifts my spirits, and pushes me onward with zest. It is a much better *pill* than the Prozac! It is something tangible, something to look forward to, to work for, to strive to accomplish. This is the positive position and attitude that is so beneficial for a myasthenic., and whenever I *am* down, and despondent, I want, and try to do something to rise above and out from that level. It is hard, but with my *team member*, the one that makes the two of us ONE, Jim is sensitive, and takes steps to encourage me.

Debbie and MarkThis seems to be a day, or night as the case may be, for Debbies. I got the sweetest text message from daughter Debbie. It brought tears. Very happy tears. Caused me to have to ask for a box of Kleenex because my Puffs are packed in my bags, and I cannot get to them.
Anyone who has been reading this blog knows I will be staying with her and Mark following Jim's robotic prostate surgery April 30th.

Christen, I can fly!
Don't you know Christen (thirteen (13) year old granddaughter) and I will spend some computer time together, especially at MySpace. I need to overhaul mine with a new layout. We can watch videos. And we both love photography, so we will do some crazy photography. Who knows . . . we might do none of the above except for my getting my blog published! Anything else is possible!

There is no doubt I will be spending Tuesday night in here. I failed. Can you believe it? Me, the journaler of all journalists - ha ha ha very big joke! What did the great Ragdoll do? Or, not do in this case? What did I not do? I failed to get the hanging of the second bag of runners, gammaglobulin, recorded. A portion of my journaling got lost when I evidently fell asleep, and did that same ole same ole thing of waking to changes having taken place on my work before me. What I think happens is that I fall asleep with my mouse in my hand, and while dozing, it highlights portions of text, and then that text is easily deleted. Why, one time I woke to the screen of Publication successful! This is just a part of me and *My* Myasthenia. It is not quite as bad as it used to be, and is also worse whenever I am having an MG episode short of a crisis, and in need of sleep to restore my poor, needy muscles.

It is Wednesday, and the second bag has been hung. It contains a whole new batch of gammaglobulins, so they must acclimate themselves to my body, or my body has to acclimate itself to them. Which is the proper way to address it? Dr. Ali explained it to me one time. For my body, it has to get used to the more than 1000 new globulins. I think that's it.

"I sure hope I get to go to my room this morning. The inconvenience is not so bad, but being on this stretcher is beginning to cause some bleeding in the genital area and lower back with which I had so much trouble, requiring consultation with infectious disease doctor George. There is a funny story that goes with him on my first visit."

I can hear the globulins grumbling about being hungry, and soon some scrambled eggs are on their way to appease their complaints. That is all a done deal when it is med-time. Whoopee! Don't I just love taking all those pills and capsules. Yuck! Right behind the nurse, though, I see Dr. Saeed coming towards my cubicle.

I am anxious to talk to him. One of the things I wanted to talk to him about was taking Cellcept (not sure if that is the correct way to spell it). He said I still was not good, improved enough to do any medication changes yet, and we needed to continue on with our plan of five days of infusion every four weeks. I told him about the oxygen. Journal entry,
"Oxygen. I’ve been on O2 since I came in. A couple of times I have been off of it and I can tell a big difference. Now you want to know the differences, don’t you? I knew you would. Should have done this earlier when it was fresh on my mind. For one thing, let’s just say everything about my chest area is “quieter.” I had been having a bit of phlegm whenever I had this cough which has started recently. Not much; just *some* which was significant because I was not used to having any at all. I am having almost zero coughing, and much better breathing while on it. There was definitely a noticeable difference. Dr. Saeed said he was going to leave it on there, write an order for it. Shrug If something is working why change it?"

After a few more words, Dr. Saeed left with my feeling good, secure with him, and his treatment plan. We did discuss trying to get some way to get backing to get the IVIG done at home. I told him about receiving a request for our financial records.

I had the tremors really bad, and checked my blood sugar which was low at 56. Thankfully breakfast was late today . . . One thing I enjoy about breakfast when I am here are the little cartons of milk. Wish I could have them at home. Hmmm . . . might just have a small glass today.

Just as I was settling from the hypoglycemic, Jessica Simpson stepped into my cubicle. And just *who* is this Jessica Simpson? She is the speech therapist that Debbie, NP, ordered for me. She is not the same one that I had last May. We went over all the swallowing, aspiration, choking, breathing problems, and she was going to order another speech pathology x-ray, and a soft food diet. I told her about the recommendations that Jessica in May had made. She thought that might be retired, but I told her since I have been a regular patient since then, that they would would probably still be active. She said she was going to Medical Records and check, plus draw up some plans herself.

I love a parade! People must have found out about our marathon of gammaglobulin runners, and this new batch of them, and wanted to come and see how they were fairing with my body today. They are about halfway through this Wednesday race; they should be finishing their part some time tonight. Each one is set for 24 hours, but invariably they run a bit longer than that; they are set to drip at 16.7 ml per hour. This group of globulins are making my head hurt worse, and beginning to include my neck somewhat. Elias comes by shortly after Jessica leaves.

It is not recorded in my notes, but I believe the nurses have put a request on the front of my chart for him to order the lollipops. The percocet is not working for the headaches. He said he saw it, and was going to do it. These meds for these bad headaches, the scalawags, are usually already ordered, and I do not have to wait for pharmacy to get them to the unit or floor. Hopefully, this will not be one of the times they take for ever to fill an order! That was about it for Elias' visit.

Jackie, the dietician, came by after lunch, and we talked about the soft food diet, and the possibilities for that. After she leaves I have a quiet afternoon with the increase in the headache, the ole scalawag, finally getting a Percocet about 5:30 .m.

5:30 p.m.
"Been lying here for 48 hrs now. I am miserable. I’ve been lying in this same position for soooooooo long. I’m beginning to think - well, phooey, I forgot what I was saying because I interrupted this sentence for something." Copied.

Not long after that I get the excited word from across the nursing unit, "Mrs. Wages, we have a room for you!" Oh, I cannot believe it. Finally! I start to get my things, what few there are, together, but she (I completely forgot her name, but she had a yellow phone ;) said to wait, they had to get things ready, the report and all. So, I lay back to wait. Hey, what's a few more minutes. My heart beat with excitement!

Next thing I knew, I saw Joie. She had come down to get or give some paperwork. We saw each other, and she came over to give me a big hug, a hug filled with excitement. She told me how they had printed out the last month's blog with all the pictures about the IVIG, and they had hung it. They were all so proud of it, and just couldn't wait until I got back this month. She told me about Stephanie's reaction whenever she heard I was assigned the next bed, and said she had to go and get Mrs. Wages' room ready for her. From the first day, and Erica's idea, we put my bed against the wall, which leaves room for Oscar, and still room for people to get around in the room. We laugh, and call it Erica's design.

Just 30 minutes after being excited, and telling me I have a room, my lady with the yellow phone (Brenda?) comes to me to tell me there had been a "change of plans, that Dr. Saeed had been contacted, and he said only as long as my infusion was not interrupted, which she assured him and me it would not be." I said, "Oh, an emergency?" She just said, "Yeah. An emergency," then walked out of the cubicle. I'm a little slow to catch on. Why would an emergency change of plans need Dr. Saeed's approval? She had no expression on her face at all. That was the total of explanation I was given, and I believed that was what had happened. That is something I can understand and accept. No problem. Never have seen it happen in all the months I've been coming here, but there has to be a first time for everything. Right? Right.

6:29 GOING TO A ROOM!!!!
7:00 Change of plan. Not going yet. *Emergency* supposedly came up. :( They already had the room upstairs turned around and ready. Joie was down here to pick up something, and she came in and I gave her a hug. She said Stephanie already had my room changed around. That means a room number had already been assigned.

I want to make this notation very clear. *I* was assigned a room on 3rd floor to the extent that the nurses there had prepared the room for my occupancy. This was not a maybe or possibly, but surity until *someone* came along and put out that fire.

I was disappointed, but what could I do? I had already turned off my computer, so turned it back on and did a bit of journaling. Not too enthusiastic about it. Mainly made the notation I have copied above. A little after 1:00 a.m. I got a warm washcloth to wash my face, looking forward to getting to my room to unpack and get to my clean up stuff, as I'm still going off of Monday morning's before I left the house; mine is packed and unavailable in my bags. I must smell and look awful. Yak!!


Here we go with a whole new batch of gammaglobulin. Maybe they'll bring a room with them. Ya think? I'm willing to think anything at this point. It is Wednesday night, or Thursday morning, whichever way you want to look at it. In my notes, I have it as Thursday since I am keeping up with times of blood sugar checks, and when I get pain meds, and such.

I have to tell you, dear readers. I am tired of relating my week in the hospital, but it really does need to be done, and things really do get worse. My humor is hiding from me, but with the dawn of this new day, Thursday, and with Jim and the babies getting up, maybe things will be looking brighter in a little while. Going back over these events is making me feel blah.

Pat Sasser with Jimbo circa 1965It is amazing what a change makes. Everyone up . . . breakfast, morning time with Jim . . . listening to my iPod . . . reading an email from a friend from the 60s which had a photo that needed some cleaning up. It was from his slides circa 1965 he had scanned, and had cleaned as good as he could. The one I worked on was of Pat and Jimbo ("our baby" huh, Pat? ;). This was a good diversion. I feel refreshed (with some help from my pain meds for the headache I am sure), and am ready to get started once more while Jim is preparing us some lunch.

Thursday was a relatively quiet day for me, but I did do quite a bit of writing. I also noted some problems with my Mestinon which I will discuss later. I just do not understand why that has to be such a difficult thing for people to understand. I take 60 mg first thing in the morning when I wake. Two hours later I take the 180 mg timespan. Then I take another 180 mg timespan in the afternoon, and at bedtime. That's it. Anyway, there was no 60 mg this morning, so I had to take one from my purse finally at 9:30.

Evelyn stopped by on her way out. She wished me a Happy Easter. Easter. That was the first time I had realized it was Easter. We'll see. We'll see. I hope.

Lollipops! Finally something stronger than Percocet for the headaches! That helped. Supper was my soft food, and it was fine. I dropped off to sleep, and was wakened for vitals when the 7:00 p.m. shift came on duty. I had drooled, and all down the front of my jammie top was soaking wet, which meant a clothing change. Thank goodness for the way we, mainly Jim, packed with all my gowns and jammies in the red carpet bag, and I was able to pull out a clean set.

*All fresh, I fell asleep for another nap, waking around 9:30 with lots of commotion going on around my cubicle. I looked across the way, and could see that the one with the man in it, who was ambulatory for the bathroom, was empty. They were returning the hospital bed of the man in the cubicle next to me. He had been admitted with what appeared to be a foot injury. As I am typing this, my emotions are being renewed, and I do not know just how good my writing skills will be, and the exact chronology of my thoughts, journaling, call to Jim, and attempted call to Jane Garrett (always a busy signal to her pager) who had told me when she was visiting that I could reach her at any time. Well, this *any time* I could not reach her, and oh, did I need someone. JIM! My partner. My team member. My one who makes me one. JIM.

I was shaking so that I could barely punch in the keys on my cell phone (think I will set up my speed dial now, as I could have used it then), and when I got in touch with him, I was sobbing so that he had trouble understanding what I was saying, but I finally did get it across to him that they had passed me over, not once, but TWICE! I was ready to disconnect from the IV, and come home. You will understand my quick thought of this after you read my journal entry that I will have here further down, for I was already becoming very discouraged with my treatment - seemingly hospital treatment, not the IVIG treatment.

When I was finally able to settle down where I could talk to Jim, he helped me to see I needed to stay where I was because I needed the treatment so badly, especially from the shape I was in when I came into the hospital, and started the IVIG. When I got off the phone, my nurse Joyce was there with a Percocet and a Xanax though I had asked for neither. I suspect she thought I needed them to help settle me down. I took them. If that was her purpose, she was probably right. Jim had told me he would be down the next day after he took Ashley and Ashton to Cave City. After what I was told next, it was a good thing I had had the Xanax. Joyce said I was "going home tomorrow." Friday? I was only on bag #3 out of five. How could that be when each bag is 24 hours long? She said that she had the next bag, #4, and when that finished I would be going home. NO!!! It is supposed to be five, not four!! She said she was only going by what the doctor ordered. I asked what doctor, and she told me Dr. Elias. I am forever grateful for Linnie and Jackie. Only you two can know what you did, and what it meant to me. Oh, Linnie, how I wish we had gotten a picture of us together, and Jackie I'm glad you continued to get better girl.

Headache. Headache. Headache. Finally a Lollipop at a little after 12 midnight,
Friday morning. I'm sure it has been worsened by all this upset. My hips are bothering me, too. This osteoarthritis does not like lying on this stretcher mattress all week long, either. We persist, the hips and I. I do fall asleep for a while because from 2:15 and 4:45 a.m. bag #4 is hung.

4:50 Scalawags are recorded! Percocet given. Not one iota of good for these kind of headaches. Just the kind we had been working to overcome, and had done the last two months, especially last month when we went five days at 16.7 ml/hr. Now it's been undone, and why make me suffer unnecessarily. These nurses have been great. Really, really great in a situation they are not used to. The nurses on 3rd have been doing this since last May, and between us we have learned a lot in the pain management of these scalawags. The nurses here have been great to work with me, too, especially Joyce and Jama here at the end of the week when things have been so bad, being caught in the middle of a very unpleasant situation.

Dr. Elias came by later on. His primary emphasis was on my bag of marathon runners that had been going since the middle of the night. Looks like I won't be going home on Friday after all. He did not speak to me. I ask if I could have Dilaudid for the headaches. He made a motion of okaying it. Every four hours. Jama was in the room during this *dialog* and as soon as she could, she brought me the injection. Finally some relief so that by 1:30 I was able to go to the bathroom and change my clothes. Ahhhh. It felt so good. I'd had those socks on since Monday morning. Moving from that one position felt good, too. At home, I can adjust my bed whenever I get uncomfortable, or my muscles get weak and painful from supporting my head and upper body, but this manual one, well . . . it cannot be adjusted to relieve the back and neck pain of the MG. No one, not even Dr. Elias I think, understands the secondary pain that is associated with MG. I have to sit up all the time, yet sitting up causes pain, and I must readjust my sitting position frequently. Cannot be done on a transport stretcher. Well, not without someone being at my beck and call continuously, and no way am I going to do that!! I said in another post that the hospital cannot adjust to me, I must adjust to it. So be it.

Dear reader, I am so tired of this. Almost, but not quite as tired as I was of being on that stretcher last week. I refer to my notes, then write, and I have to tell you, my transfer to prose is waning, and I'm quickly drawing near to just transferring the notations on to here. There are only a couple of things that I consider really noteworthy, one of them waking in the middle of Friday night with severe upper stomach pains, just over/under (?) my diaphragm, shooting up the left side through the left side of my neck, and out my shoulder. New, totally new. Not being able to turn, all I could do was grasp that area. That was about 2:00 a.m. and Joyce gave me a Percocet. I went back to sleep, waking again with the same abdomen pain, and Joyce gave me an injection of Dilaudid. I told her I was going to miss her. That brings tears to my eyes even now as I tell it. She was absolutely super! So was Jama. It was way past time for her to have been off her shift when she came into my cubicle to say good-bye. I quizzed her on still being there, that she should have been gone a long time ago, and she said she got behind on her charting. Out of 30 years of nursing, I was only the second MG patient she had ever had, and she told me what being my nurse had meant to her, which I will not recount here, at this moment, as there are some others I want to mention and will do a blog entry on all of them together in a separate entry from this, especially Jackie and Linnie.

We crossed over into SATURDAY with these stomach pains. Yay! Day to go home! Out of this place with a bitter taste on my tongue. Nurse this morning is a new one, Vanessa, and she is just the one I need on a day like this, after a week like this. Just perfect. For one thing she cleans off my bedside table, and lowers it! Something none of us have thought to do this entire week. *laughing* That's okay. I'll know next month.

11:00 a.m. and guess what! I had fallen asleep once more, and guess what I awoke to? My one and only partner, one and only team member that makes us one - JIM! No one more welcome, more blessed for these ptosis eyes to see! Yep, brings tears to my eyes to remember his showing up, too.

I was still having the scalawags quite severely, even with the dilaudid, and he told the nurse that he wanted to make sure that it was noted on my discharge papers in the space provided. She said she would have to get her supervisor, and we finally ended up talking with Amy, the acting house super for the day. She and Jim had, to me, a good conversation. Ha! Even I understood some of their hospital lingo talk.

Now, I know this is already super long, and if you are still here with me, thank you very much for listening, but I want to post some thoughts I had just written of my feelings. Blogging has been teaching me to do this instead of just thinking about things. They are all prior to Thursday. I'll try to keep them in chronological order as much as is possible because sometimes I just picked up my laptop and started typing.

"It is hard to keep my spirits up and going. This is becoming one of the worst experiences of all time, I believe. In addition to dealing with the IVIG side effects, I am now contending with my hips of osteoarthritis, the connective tissue diseases, and the pain of just my body touching the stretcher. I’ve been lying in this same cramped position for 72 hours now, beginning day four down here. I’d really like to see that there has never been an opportunity for me to go to a room other than last night when I got bumped.. Maybe last night was the only time. I surely do not know. If we are going to have to spend this many days down here, then something needs to be done to make it more livable. I want to find out if this is the only hospital Dr. Saeed uses, because this is just too much. It just gets a little worse each month. Where is the stopping point? Will there soon be a waiting list. That is just the thing. We know exactly when I am going to be here. The hospital knows, and gives their *whatever* on Friday before we come on Monday. Is that a preregistration or what? If so, then maybe they are allowing too many to preregister at a time. I just cannot keep from crying. Sure it is from everything all put together . I know that, but just how many *lotta little* things all put together can one cope with? Certainly a different amount for each person, and even different amounts for each of one at different times, and I think seventy-two (72) hours on a stretcher, bags still packed, and inaccessible, and blah, blah, blah . . . don’t you know I could just keep on going, going, going like the pink Energizer bunny (I have a bunny story I could tell, but it is way too sad to put out here for everyone. Why the tears it would bring everywhere. River banks would overflow, dams would do whatever dams do when they get too high. Oh, it is such a sad , sad bunny story.

A note in here . . . This is also contraindicated for the Multiple Connective Tissue Disease I have, and for which I am being treated. I also have osteoporosis, and osteoarthritis, especially in my hips, and that is causing me considerable discomfort. But only two things mattered. Complete the infusions, and do it by Friday. Me? Why, who is Me? This is the Me who spent six days on a transport stretcher at the whelms of whom? My neuro? My hospital internist? The hospital? All of the above?

Well, with 200 mcg of Fentanyl floating around in my blood stream, probably side-by-side with the new globulins, the tears have dried, and I’m feeling better. Of course, we all know that is a false front, a cover-up, but at least it is a good side effect from the pain reliever.

Abandoned. That is a veritable feeling I have. Even with the Fentanyl, the feeling is still there, but just more tolerable (say “less tears“) I guess you would say. Hey, out of seventy-two hours and counting, one time is not so bad Click. Click. Click. The digital clock on the wall clicks one second at a time. My cell phone has been so quiet.

Now that the pain has up and run away with the Fentanyl, it is somewhat brighter in here. Wonder why? J There must be a reason for this happening to me. I have been saying that God is doing something, working on something in my life (more than just patience maybe ;), so I cannot say that I can *see* Him working in one area, yet not in another simply because it does not agree with what I *want* or how I would like for it to be. Therein lies my patience, don’t you think? “Be still and know that I am God.” That is one thing that might be hard to achieve upstairs in my room. Stillness. Of all the places I go, right here in this corner in Admin/Holding is just about as still, and away from all other place I know that I might frequent, except my bed cove in the dining room at home. The curtain to my cubical is open to allow a little life in here with the gammaglobulins and me.

More quietness. My hearing aid batteries just quit, and the new ones do not fit. If I could just unpack, I could get to my batteries Wanda gave to me, but . . . You know the story. "

One nice thing about hearing aids. They are just little microphones. Mine are new, and have not been adjusted down, still a little high. This enabled them to pick up bits of conversation when they were huddled together just before coming to tell me the plans had been changed. I had picked up my name, and a few other familiar things that perked my interest. Not recorded, nor written here. Just in my memory.

We conclude with our good-byes, thankfully not with those who had been such a blessing to me during my hardest times, and from the few hours spent with Vanessa, I know that she would have been a joy to have as a nurse. There is truly some very excellent nursing staff of all levels at St. Francis - Bartlett, and I encountered some of them during this week. They did all that was humanly possible to make my stay as pleasant as they could considering the circumstances, and to my understanding, beyond their call of duty in some instances.

Striving for a world without Myasthenia Gravis
* In rereading this I feel I have recorded the exact time incorrectly. Right now the file with my notes is not available for me to recheck it.


Cara said...

Hello :-)

Just stopping by to say hi.



ragdoll said...

Hi Cara. What antics has Baby done today? It has been raining and our babies have been lazy, sleeping all day.