A long awaited phone call, still need to return it.

[Jessica Olivia Frysz]

Well this mroning at 10:50am, I received a phone call from my transplant coordinator. My cellphone was turned off from the night before, so that I could get some decent sleep. She tells me that she has no further information for me, until she gets some more paperwork from one of my other doctors. UGH this is taking such a long time to get some answers around here, I'm trying to find a donor;two of my professors also want to help me out in the perspective, but unfortunately I have to wait until the Fall in order for that to happen. So, I've had to take matters into my own hands. I've posted my profile on 2 websites; kidney connection of WNY and the other being matching donors. So far, no luck, but I know something will eventually happen.

I begin my senior year at Medaille College in September and I'm getting very excited! I've received my associate's degree in science/veterinary technology and will be finishing my bachelor's degree in the same major this coming year. I will soon be taking the state exam, but haven't decided on when I want to take it.

All in all I'm doing fairly well, other than the low blood pressures I had while receiving my dialysis treatment last night. And, I KNEW VERY well that I had low blood pressures, because I began feeling crampy, light headed and most of all, I started yawning excessively and feeling VERY warm. One of my techs came over to check on me and I asked him to check my BP, and he took it, told me that it was 90/51, I was like WHOA, no wonder and he gave me a "time out" lowered my blood flow and then walked away. One of the other techs then came over and gave me saline and well... that didn't do much better, it came back up, but not by much. Then, one of the other nurses came over and asked me if I was ok, I said no not really. She then began asking me how I knew my blood pressures were so low, she asked whether or not I was feeling restless or something.

I just told her the symptoms I began having and then she was like "oh." What really honestly makes me mad, is that these people work in a dialysis unit and they have no clue when a patient has low blood pressure until they look at the machine's screen. They don't listen very well to us as patients, they just assume that because there is a number on the machine, that it's good. And, another thing is I'm not on BP meds, so my pressure naturally is low, they often think I'm on meds for my BP. So, my dad was saying I should've said that because I've been doing this for so long, that that's because I know when my BP is low, I just wish people would listen to me very carefully.

[Jessica Olivia Frysz]

Cheryl-

I do have a social worker, I also have a nurse practitioner at my facility. The social worker on the other hand is oblivious to what is happening around her, she seems too concerned with the fact that my dialysis access is being covered with a blanket so I don't get cold, but she doesn't seem to understand that I've been doing this for a very long time and am aware of what the nurses need to know, yes they want me to keep it uncovered in order to know that I'm still connected to the machine; however, if I'm not covered I get cold and then I get cramps.

Adult facilities are not like peds units by all means. Peds units, the staff is more vigilant of what is occurring rather than, "oh let's just let the patient make the decision." It's not my job as a patient to do a job a dialysis nurse/tech is to be doing, they rely too much on me to make decisions, and we're not the only ones, that have felt the pain, it's happening everywhere.

At my former unit, my social worker was just like yours, if something came to her attention she would get right on it. Yes, many staff members in adult facilities are lazy, they try to find short cuts, which they can't be doing in my midst, since I know what they are trying to pull.

I've had to stand up for myself several times since I've began going to an adult center, INCLUDING getting them to give me epogen, even though it's an expensive drug. They wanted to start me from scratch, even though we gave them every piece of information we had, they took the epogen away and well... my hemoglobin dropped down to 8. Problem with that is, I would've been at a point where I needed a transfusion, my mom and I refused it, because I'm being worked up for a transplant. If I were to get a transfusion that would put my antibodies out of wack and I wouldn't be able to receive an organ. They honestly don't understand what damage they would be doing, they think they are doing more good than harm. I honestly don't take naps often while I'm on, because I don't iknow what they will do if I do.

[Cheryl Biermann]

I'll ask the nurses where the studies are on oxygen and forward the information on to you. You could print them out, and pass them out to everyone-don't they offer a social worker for you? Here in MO. they do, my friend is a social worker in adult facilities, and this is the kind of thing she does as well as her other duties. She advocates for the patients when something like this comes to her attention. As an employee, she has greater access to the decision makers and is often able to get quicker results than the patients themselves.

Our nurses are being rewarded for having such great scores on their state reviews and so when this happens, they get to travel to other hospitals and observe their procedures and participate in conferences. I don't know why adult hospitals/medical facilities are so LAZY it infuriates me! Anyway, they come back with new ideas, and are willing to try things, if studies back it up, that seem be an improvement over what they currently do.

I know your frustration-my husband was in the hospital for an injury; and silly things, you'd think were common sense were overlooked. For instance, he had an infection in the wound, so they marked his leg where the infection was, to track it, but it never occurred to them that the redness might migrate to the back of the leg when he lay in bed for two days-my mother-in-law saw it first, then I saw it and was able to show the doctor. He only looked at the original site. On operation day, the nurse gave him breakfast, which normally he would question, but having a fever and feeling not so sharp, he didn't think of it and surgery had to be delayed. That wasn't all, but I'm just trying to let you know, I feel your pain!

[Jessica Olivia Frysz]

Cheryl,
Unfortunately in the adult units they don't provide us with oxygen when our blood pressures run low and I am one of the patients that keeps their lights off while being dialyzed. I'm often asked to advocate for myself, to keep an eye on my blood pressures, but sometimes it isn't enough if the staff won't really listen to you. But, I've made my staff listen They to me, because of certain stunts they've pulled on me.

I take snacks with me, but I refuse to drink something while I'm on, because that's how I've always been. They don't use a crit line to show the oxygen saturdation in my unit, I don't even think they offer it at all in adult units, I think ever since I left my peds unit, they've come out with this sort of study.

Basically, I don't have anyone in that unit to stand up for me, except for me and my parents. But, I'm grateful they ask me what I want them to do when it comes to the point of my pressures getting too low, I tell them exactly what to do : lower the blood flow rate, put me into about a 10 minute minimum and then a bolus of saline, usually does the trick and I'm feeling fine after that.

I should consider bringing sierra mist with me and some crackers or something salty to help with that during treatment, I remember doing that at my former unit, they would give me something to help, usually graham crackers though.

[Cheryl Biermann]

Jess,
It might be a very good idea for you to sit down and write all of these things down for your dialysis nurses; I've heard horror stories from patients in adult facilities, and yes I think that many times they are just trained to react to the numbers, especially now that so much is automated.

Nathan has the same reaction at times, however, here are two new findings I just heard about...in addition to slowing the UF or turning it off for a while and watching the crit line and BP, or giving a bolis, it has been helpful for some patients to lower the lights while being dialized. Also, Nathan and a few others in his unit are now receiving oxygen during their treatments. Nathan's oxygen dips a lot during dialysis so when I came back from a Colorado vacation the head nurse had asked me for my observations. I told her they dialize every patient with oxygen because of the altitude, but had been reading studies indicating it might be beneficial for everyone.

You could call it Jess's care page or something like that.

Nathan feels like that when his systolic reaches 106-so they keep a close eye on him and if he has additional drops offer white soda and crackers to help him regain some strength.

Good luck your senior year! We just sent two more off to college, (Making three in college now), and for the first time in 20 years had some milk go sour before we drank it! We usually run out. I guess we haven't yet adjusted for two teen-age boys not being around. Wonder how they're feeling, I KNOW they aren't getting as much milk on campus!

We too just had a transplant discussion, the nephrologist gave us a reading assignment, (studies he had found re: Soliris & transplant), promised to speak to our transplant team and get their opinions and begin paperwork for insurance. But, we've all seen Nathan have such trouble with procedures & surgeries that other kidney patients fly right through that we're all a little nervous. It's hard to change the status quo when he's been relatively healthy, (except seizures, parathyroid issues and the chorea). So I can relate to what your mom is feeling more than what you feel! I can tell you're raring to go-which is great because that's what you need to be! Thanks for keeping us aware of the twists and turns on your journey.