SURPRISE
So yesterday, a dana farber Wednesday started off as a typical dana farber Wednesday, a ton of traffic, a lot of attitudes, great people watching, and unfortunately a lot of appointments. The different part was that the hospital went live on EPIC, still after being at the hospital for over 6 hours I still have no idea what EPIC means, besides new computer systems and large groups of people wearing blue vests that said "EPIC" congregating throughout the hallways of the Brigham and Dana. As an outsider looking in there appeared to be a great deal of confusion and poor training. We were running late to the first appointment so we went to the lab at DF before heading over to the appointment at Brigham, however because of the time crunch the lab actually took us early. SURPRISE HAHA not the big surprise though, guess you got to keep reading:) We really didn't notice anything different at the lab except it was a lot less busy then normal and they had complimentary snacks. Once we arrived at Brigham, the effects of poor training was witnessed. The appointment took almost an hour to enter refills and update my info, a tech was called into the appointment to assist on the computer. We headed back over to DF, and again the biggest change that we noticed was that it was empty in the waiting room, and trust my word on this, that never happens. We got called in right away and once dr. came in she apologized a head of time for any delays caused by the new computer system. However unlike the other dr. she seemed to have had a better idea of how the system worked. It took a little longer then normal but its been worse. The way the floor is setup, is a check in and out desk, and then pretty much an open concept waiting room, however typically you sit at the right side of room to see doctor. Once that visit is over if you are getting any sort of treatment you have to check out and then check in again and then you proceed to the other side of the room. We were happy because that side also was empty. After a short wait we went to our treatment suite and waited a little longer.... And at the check in check out desk they stamped our cards for validation and ... SURPRISE PARKING WAS FREE, do to longer waits, however still not the BIG SURPRISE, guess you have got to keep reading.:)
When you are dealing with an illness, whether it is chronic or terminal, it would not be abnormal for you to have formed special relationships with your whole medical team, or even parts of your medical team. Sometimes you see them more then you see your family or friends, and I think being a patient at Dana Farber is a prime example. Javi and I are at DF, every other Wednesday and it has been like that for quite a while. You become familiar with the staff and staff becomes familiar with you, for example now at the lab instead of calling my name out like they do, they just come over to us. Sometimes when we get up to appointment floor the desk worker will see us coming off the elevator and have us checked in before we get to desk. At this point the triage nurses can decipher my feeling ok days and my feeling yucky days from first sight. Sometimes we can guess my vitals before checking them. This week I was not feeling great but I have been worse. Usually we can see my lab results before we even get into see dr. and based on those we can estimate how long we will be on the treatment side for. Also a major factor is how busy it is. So this week judging by the waiting rooms we figured it would be a fairly short day. One major thing we have learned from appointments is do not make estimate on times, you will always be wrong.
Patients seen at DF, usually have a complicated medical history, and every treatment plan is individualized, and because of this it is important to try to keep things as routine as possible. So they try to have patients seen by the same nurses as often as possible. I really am a hard shell to crack and usually hard to get a good trusting relationship with, and for some reason the nurses at Dana Farber, even the ones that are not in my care directly are always smiling at me and talk to me by my name. I have been in the hospital a lot and have had my share of good and bad nurses and most of the Dana Farber nurses I have crossed paths with are above standards, sometimes just a smile can brighten a not so bright day. When we first started going there we had an awesome nurse, however she stopped working on Wednesdays, so I was re assigned to another nurse who is as equally as awesome. She has been my nurse for a while now, and because of the frequency of our visits, we have a lot of conversations. We usually talk about my family, always showing off pics of my kiddos, and sharing stories of my family life. We also talk a lot about ways to increase my quality of life, I am always told by my doctors that I need to find hobbies that are stress relieving. I did gardening for a little bit and its fair to say I do not have a green thumb, but my garden turned out not so bad. Instead of gardening I have gone back inside and returned back to my childhood , coloring in the kiddos coloring books. However just found out yesterday that they make adult coloring books. Some of them say stress relievers and others said calming. Javi ordered them last night, interested to see what the pics looked like. Also last night I found out in one of my online support groups that I am not the only one who colors, I have never talked about coloring because I have some people that call me not the nicest words because I color. For a while now, since the snow has melted I have been trying to go outside for a minimum of a half hour a day, doctors orders. For along time now, I really have wanted a hammock, unfortunately all the trees in our yard have been cut down and getting a free standing hammock is expensive. So I really have wanted a nice outdoor swing that I could sit in and type or watch the kids, unfortunately they do come at a cost, and because we are going away at the end of the month, I had pushed the chair to a back burner. The first thing my nurse said to me was I have a surprise for you, I had seen her coming down the hall with her arms full, so I figured the surprise was that the blood bank had sent everything up, and we were going to start right away, but that was not the case at all. She said....
SURPRISE!!
"you are getting your swing," I think I was in shock, it took me a few seconds to process, and I started crying, cant tell you the last time I cried for happy tears. She said after I told her I couldn't afford the swing she had called around to various groups among DF, and they were able to dip into a fund, and I was to watch my mail for the Lowes gift cards I was going to receive. I don't think Javier had realized what was going on,so once we separated from my hug, he looked kind of confused as to what had happened and why I was crying. She told him, and I am pretty sure he is happy, because he knows I have been wanting this for a while, and they are not cheap. I don't care how much they are for I am just amazed at how much she cares that she would do this and just overall thankful for the generosity. I am sure that she has many other patients, and honestly I am surprised she remembered a small detail, like a chair. I'm sure there are plenty of other patients that could use that fund for something much more important, but I am truly thankful. This may not seem like a big deal for most people, but for me this was an obstacle, an increase of my quality of living. Cant wait to receive gift cards, so we can buy the perfect one. :) And hopefully my next post will be written while enjoying the outdoors.
OBSTACLE OF INCREASE IN QUALITY OF LIFE: IN PROGRESS!
When you are dealing with an illness, whether it is chronic or terminal, it would not be abnormal for you to have formed special relationships with your whole medical team, or even parts of your medical team. Sometimes you see them more then you see your family or friends, and I think being a patient at Dana Farber is a prime example. Javi and I are at DF, every other Wednesday and it has been like that for quite a while. You become familiar with the staff and staff becomes familiar with you, for example now at the lab instead of calling my name out like they do, they just come over to us. Sometimes when we get up to appointment floor the desk worker will see us coming off the elevator and have us checked in before we get to desk. At this point the triage nurses can decipher my feeling ok days and my feeling yucky days from first sight. Sometimes we can guess my vitals before checking them. This week I was not feeling great but I have been worse. Usually we can see my lab results before we even get into see dr. and based on those we can estimate how long we will be on the treatment side for. Also a major factor is how busy it is. So this week judging by the waiting rooms we figured it would be a fairly short day. One major thing we have learned from appointments is do not make estimate on times, you will always be wrong.
Patients seen at DF, usually have a complicated medical history, and every treatment plan is individualized, and because of this it is important to try to keep things as routine as possible. So they try to have patients seen by the same nurses as often as possible. I really am a hard shell to crack and usually hard to get a good trusting relationship with, and for some reason the nurses at Dana Farber, even the ones that are not in my care directly are always smiling at me and talk to me by my name. I have been in the hospital a lot and have had my share of good and bad nurses and most of the Dana Farber nurses I have crossed paths with are above standards, sometimes just a smile can brighten a not so bright day. When we first started going there we had an awesome nurse, however she stopped working on Wednesdays, so I was re assigned to another nurse who is as equally as awesome. She has been my nurse for a while now, and because of the frequency of our visits, we have a lot of conversations. We usually talk about my family, always showing off pics of my kiddos, and sharing stories of my family life. We also talk a lot about ways to increase my quality of life, I am always told by my doctors that I need to find hobbies that are stress relieving. I did gardening for a little bit and its fair to say I do not have a green thumb, but my garden turned out not so bad. Instead of gardening I have gone back inside and returned back to my childhood , coloring in the kiddos coloring books. However just found out yesterday that they make adult coloring books. Some of them say stress relievers and others said calming. Javi ordered them last night, interested to see what the pics looked like. Also last night I found out in one of my online support groups that I am not the only one who colors, I have never talked about coloring because I have some people that call me not the nicest words because I color. For a while now, since the snow has melted I have been trying to go outside for a minimum of a half hour a day, doctors orders. For along time now, I really have wanted a hammock, unfortunately all the trees in our yard have been cut down and getting a free standing hammock is expensive. So I really have wanted a nice outdoor swing that I could sit in and type or watch the kids, unfortunately they do come at a cost, and because we are going away at the end of the month, I had pushed the chair to a back burner. The first thing my nurse said to me was I have a surprise for you, I had seen her coming down the hall with her arms full, so I figured the surprise was that the blood bank had sent everything up, and we were going to start right away, but that was not the case at all. She said....
SURPRISE!!
"you are getting your swing," I think I was in shock, it took me a few seconds to process, and I started crying, cant tell you the last time I cried for happy tears. She said after I told her I couldn't afford the swing she had called around to various groups among DF, and they were able to dip into a fund, and I was to watch my mail for the Lowes gift cards I was going to receive. I don't think Javier had realized what was going on,so once we separated from my hug, he looked kind of confused as to what had happened and why I was crying. She told him, and I am pretty sure he is happy, because he knows I have been wanting this for a while, and they are not cheap. I don't care how much they are for I am just amazed at how much she cares that she would do this and just overall thankful for the generosity. I am sure that she has many other patients, and honestly I am surprised she remembered a small detail, like a chair. I'm sure there are plenty of other patients that could use that fund for something much more important, but I am truly thankful. This may not seem like a big deal for most people, but for me this was an obstacle, an increase of my quality of living. Cant wait to receive gift cards, so we can buy the perfect one. :) And hopefully my next post will be written while enjoying the outdoors.
OBSTACLE OF INCREASE IN QUALITY OF LIFE: IN PROGRESS!
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