Tag: Infusions- IVIG

  • More Hurry Up and Wait… The Joys of Hospital Stays!

    I’ve written before about one of my Dad’s sayings- “Hurry Up and Wait!” Meaning often times, especially in the medical world we are told to be patient and sit around for your turn, but when it is your turn you better be ready to jump to attention!

    Previous events have taught me this is wisdom for a lot of things, but especially waiting for a transfer to another facility! You need two things to happen and align. The first is that you are accepted by the receiving facility, and the second is that they have a bed available for you. The second is where the waiting comes in- you never know and can’t predict when a bed will become available. There are so many factors about bed availability: is someone actually going to be discharged and do they have a ride home or are they waiting for a bed in a facility that is also on a backlog? Timing is everything because you also have to coordinate transportation and the distance facilities are from each other comes into play too.

    Right now, I am trying to move from the “Big” hospital in Myrtle Beach to MUSC in Charleston. The two facilities are about 2 1/2 hours away from each other and transportation needs to be an ambulance. I have been granted acceptance, but no beds are available in cardio-thoracic surgery, where I need go.

    I can totally see how this is going to go down. I am finally going to chill out and relax some from a crazy day today and enjoy breakfast in the morning and someone, well intentioned, will burst into my room to let me know transport is on their way and everything needs to be ready. So, I will frantically try to pack up my stuff with some help, and the WAIT because transport is NEVER on time, unless you are not prepared, then they are early!

    Usually by the one week mark in the hospital, my nerves are frayed at best. I am tired of being woken up, poked, prodded, and have a revolving door of doctors who don’t have the time to get to know you as a case, never mind a person. The last thing I want to do is be rushed or having to sit around and wait!I am not entirely sure which is worse!

    I took a meal/infusion break writing this and right on cue, my nerves have had it- total meltdown. I can’t stand when a nurse or medical assistant puts a blood pressure cuff on you, or worse, a thermometer in your mouth and then starts asking you important questions. I might have lost my stuff a little bit by saying, WAIT! I can only handle one thing at a time! It seemed to have the nurse take a step back and say, I see you are a little agitated. I said a little and most of it is not your fault, but give me a little grace, and a little room. We seem to be successfully moving on from that point.

    I am also receiving my IVIG infusion this evening. A new record for me to have two treatments in a row in the hospital (I receive it every two weeks). One treatment in the hospital makes me appreciate that I usually receive it at home, a second treatment in the hospital in a row, makes me miss my infusion nurse, Gail, something fierce. We have a routine down, where our needs are both met. The questions are limited to the newest adventures and not my lifelong medial history. Food is shared and family stories are told. We catch up like the friends we are.

    So, here is to the next phase of Hurry Up and Wait! My sincere hope is that tomorrow is the day I move down to Charleston and MUSC. Home of the Wizard and other great doctors who simply get me and my complicated medical needs. I don’t feel like Boo in Monster’s Inc when she touched Mike and Sully; there I am not the weird one. I like being treated as the “normal one.”

    I’ll be in close contact with you all, especially when a surgery date is set. In the meantime send my story far and wide, especially to prayer warriors- I need an army of prayers to get through this next phase!

  • I am Finally Getting Somewhere, But Is It Fast Enough and Brings Me More Confidence?

    So, I am slowly making progress in gaining strength , but my confidence is very much laking and I am terrified that I am going to fall. I am able to stand with the help of either PT or OT being right by my side and even then I hesitate to be able to stand or take a few steps. So, I have decided to enter and intensive inpatient rehab program. If I am accepted, I will start on Saturday after my IVIG infusion on Friday.

    I think this might be the best thing for me as, I need to gain some confidence to be able to stand and walk short distances. I am hoping it is for 5-10 days and then I can return to be Fiercely Independent Pam World.

    The jury is still out to see if I will be accepted. my track record isn’t the best in being accepted, but I am working with some incredible people that seem to want to make it happen.

    In the meantime, I am working hard to build my own confidence and hopefully some standing and even a little walking on my own. I’d love to be able to get scale reading, but that is big deal and not the easiest to get when you are barely standing on your own.

    I have a sneaky idea that I am going to be on the cusp of being able to things on my own when it comes time to enter rehab. I guess I’m just going to have to trust my gut about what is the best decision for my progress. I also have to remember that I have important doctor visits, especially down at MUSC. No matter what, I need to be able to stand and move in order to get in a car and use either my walker or Zeen to be able to get around.

  • IVIG, Home Health, and Trying to Control Timing!

    Today is my twice a month IVIG infusion. IVIG is used for many different reasons; I use it for my immune system (or lack there of). I have been doing IVIG for about three and a half years. Before this, I used to do my IGG via subq which didn’t involve using a central line or needing a nurse to monitor. Click here for a previous post that explains my Primary Immunodeficiency and treatment plan. All of this involves special planning and timing.

    Today again, I have a substitute nurse, actually I have two nurses because one is shadowing the other. It’s always interesting because nurses have their own ways of doing things. Nothing is wrong or right, just different. I also spent a good part of the morning working and practicing using my fistula.

    Timing is aways something on my mind. I want to keep moving forward, but it is essential that I remember that I do not control time, I have been waiting to use the fistula and get rid of my PICC line for over a full year. Today was another day of being reminded that I do not control time. The plan shifted some, but is still moving forward. I practiced sticking a fake arm and using good technique to secure and then remove the needle. I think I am still on track to have the PICC line pulled around Christmas, which is a BIG deal because it means I can finally break free from using Home Health services.

    Right now, because I have a PICC line and require nursing services from Home Health, I am limited in regard to other things. For example, since I use Home Heath, I am required to use them for PT/OT services, which tend to be not as robust as outpatient services. I also can’t order my urinary catheters through “normal” means because Home Health has to order them. This limits the type of catheters I can use and try. I am eager to stop using Home Health so that I can access other services.

    It’s easy to get frustrated with the timing of things. I want things to work out NOW! I am tired of waiting! Beyond getting rid of Home Heath, getting rid of the PICC line also means being able to shower without a cover on my arm and being able to swim if I want to. I have purchased stickers for my glucose monitor for various holidays that I’m not using because they would be hidden under my PICC sleeve. It might seems like I am whining right now but really I know timing is not in my control. Eventually the PICC line will come out and eventually I’ll meet these goals.