Jamie, I can relate to you, girl. I was diagnosed with CML in 2005, but this is not about me. Last year my son was in the hospital for 88 days, 30 days in ICU on full life support, then to a long term acute hospital, then off to rehab. He had legionnaire disease, and then the med's shut his kidneys down, I things went down hill, feeding tube, ventilator, etch. Also he was diabetic, etc. 38 years old.
Here is what I did. I kept my cool, that is most of the time, not easy. If I felt like I was going to cry or blow a fuse, I went to the rest room, took deep breaths, and calmed myself. Sometimes you got to step away. It is also hard to think straight if you are not taking caring of yourself, you have to rest, eat, meditate, pray, deep breath!
But I had a plan. My son was in a leading research hospital and they, doctors, come in groves. Lots of students, meds in training. Well everymorning I would go to the hospital at 8:30am. The nurses worked in 12 hours shift. Remember in ICU the nurse is in charge, so the first thing I did was go over the assessment of my son. I got pretty good at what was going on after awhile. (medical staff often changed or rotated) Then once I was brought up to speed of how his night went and what changes had occured and how he was that morning, so I knew how to approach him. Like if he had a bad night, they didn't want him bothered. If it was a good time, I would let my son know I was there and if things were going badly, I would say son I love you, I'm praying & I will be sitting right here in the corner of the room, and will be checking on you but rest for awhile. So I would go set up my little corner in the room. With some vitamin Zero to drink. Took my blood pressure med's and a mild sedative. As each team of doctors or medical staff came in, they would give me an update and we would tic for tat, or whatever. Then I would write in my journal with names, to later transfer on www.caringbridge.org. So I set in the corner, with my laptop and notebook. I would look at the board, they are suppose to write down the name of the lead doctors on each team and the nurse, etc. So I would record all names, time, dates. Now it made them, medical staff, a little nervous at me writing notes and asking them to spell things and explain terms. I think at first they just thought I was cute writing my little notes that I probably didn't understand. I explained to them the medical staff that I had a blog on www.caringbridge.org, so I was making daily journals. Now when I had time, I would google or search, for medical terms that I did not understand and learn to pronounce them. It was kind of funny, because the medical staff realized yep I was getting a real education and was learning the terms and pronouncing the words correctly. Now with all the coming and going of so many groups of medical staff, and the changing of groups, like on the week end. If a medical staff or doctor didn't know something, they would ask me, or I would correct them, or fill them in. As time went on sometimes, a nurse or doctor would come sit beside me, and say what are your writing? I would say your name, and every staff member who is taking caring of my son and his treatment, test, labs and stats. It was not an easy journal as things could change in the blink of an eye. But as time went on I learn medical terms and pronunciations and could reflect on my journal. One day the social worker came in and said Pam there is no way you can remember all that. I said Joy, why don't you just sit with me a spell, and some of the doctors will be coming in. So after going thru about 3 heards of medical groups and making my notes. I said well Joy there you have it you have heard it all, Now I have my journal to refer to with names, dates, times. Well I think it worried them just a bit and kept them on there toes!!
Now when he moved to the long term acute hospital, the care was terrible. I did not hesitate to make a few phone calls to the chief CEO!! It still was a battle but it kept them on their toes. Sometimes though you really have to access the situation, as I have heard of this back firing on people. So a lot of intuition and prayer, here. Always try to get your ducks all lined up in a row before you fire you animations. Yea I have tried that sweet talk to and then when that didn't work I upped the tone, until again, I would call the CEO. Kind of hard sometimes as you get used to certain staff members, then you have to start over with a new set.
Praying for God to give you rest, peace, wisdom and guidance. Put the cigarettes down!!
Well, Seamus is a very caring nurse and Maria LOVES him. He's off for a week which sucks, but I am very thankful he was here yesterday to help me through this. I still HATE the idea of dialysis but if it really will HELP her, than I am down for ANYTHING they have to do. It doesn't matter for lack of a better expression, what she has to go through as long as she SURVIVES it all. You know what I mean? I'm just terrified with everything because everything has an effect and sometimes the effect does more harm then what the initial medicine or procedure was supposed to help. I'm not trying to micromanage. I am managing. Someone has to. She has too many hands in the pot and I know for a fact that even though they report to each other, they aren't always all understanding or on the same page or fully informed. Someone has to make sure that one fully knows what the other is doing otherwise mistakes can be made. Lack of communication has been and can be fatal. She is going to get her CVC hopefully, tomorrow morning at 7am so tonight I am going to sleep at the hotel because it's so early she will be sound asleep and then they will sedate her anyway and the whole process of them taking her, prepping, the procedure, waking, and bringing her back will take nearly 3 hours. I can sleep till about 9 and then get ready and come see how she is after. Also I talked to her and her sister and asked them both if they'd mine that on Saturday when they all are here, I could go spend the day at the hotel and rest and they don't mind at all. It puts me at ease to be gone all day knowing that SOMEONE will be here with her. I appreciate all of your thoughts and advice.
I am sorry your son had to go through that...I often wonder if this truly is my max...if things were to become worse than they are...could I handle it. I think NO, but I didn't think I could handle what I have been given either. Granted I havent handled any of this well in my opinion. I keep telling myself to be grateful, because I KNOW that there are many who are fighting a much harder and or longer battle than Maria and I. I think this thought is my biggest saving grace right now. It's hard though. I told the patient advocate yesterday that i had no porblem facing 20 Drs in her room alone AND the guy who practically owns this hospital. I am not intimidated by ANYONE. I actually giggle to myself when the morning nurses rush in prepping Maria and giving their pep talk because "the Drs are coming". They act like the Drs are Jesus or something. I watch the nurses and fellows stand with their hands folded in front of them as the Dr speaks and I can't help but think it's all a joke. I am pretty sure the Dr poops and has to dress himself everyday...he's just a man who spent a lot of time in school to know stuff and know how this stuff works with or against that stuff...
Don't get me wrong...I appreciate Drs and respect them...when they are genuine and when you know they went through med school for the right reasons. And there are a few of those men right here in this hospital. Marias actual transplant Dr is one of them...but until she walks out of this place healthier than when she came in, I will not sing to their praises. They are human, they make mistakes, they loose sight, some get lazy, and some stop caring altogether if they ever cared at all, and because of these reasons, I will always try my hardest to be on my toes too. I have one patient and they have a hundred and I know that, but than they need to know that too and respect that I am the one with her all the time and the best report they can get on any changes or any anything with her, is from me.
I told the advocate that I blog. That is why I try to come on here a lot too...it's more so so that I have things documented, not nearly as detailed as you...but I can look back and know what happen and when. I have thought about being more detailed...names, dates, times, everything...the thought exhausts me but at the same time I can see where it would make me feel a lot better and keep others on their toes an best behavior.
Patient advocacy here does seem to get the team straight though. So does writing emails....apparently they get forwarded to someone who means something because attitudes start changing for a minute shortly after.
I have not stopped smoking yet, but I have it in my mind. I will quit again and I know I will. I just really need to see action and improvement. Please feel free to share your story here if you'd like. I have no problem with anyone doing that. Sometimes I get something out if actually! Thanks for stopping in.
Her creatinine today is 3.82. They are hoping over the next couple of days that it will plateau or better yet drop down, if not, the floor Dr. said he might suggest they do a biopsy of the kidney. That kind of threw me off...not sure what all a biopsy can tell...but if the renal team doesn't agree it won't happen. He said he'd rather not but well we'll see. Her hemoglobin has been hanging in the 8's. Her platelets have been in the 30's and 40's...they want her to stay above 30. And her whites in the high 3 or 4's. Today 3.9. Her billirubin has been fluctuating from normal to slightly elevated but it hasn't been bad at all. She is still producing urine which is a good thing, especially since the poor thing hasn't been able to drink much. They keep putting her on NPO and then off and then on and it's frustrating. I think I already wrote that they are doing a CT of chest and abdomen today or tomorrow. And they will try to put her CVC in tomorrow morning at 7 am. I am really hoping they can. The CVC scares me because of the bacteria but the IV's just don't last on her, they hurt, and her veins are shot to hell. I am pretty sure they said she had/has sepsis...but they haven't said it outright. Her spleen is slightly enlarged but apparently not a major concern of theirs right now. She is sleeping a lot...and they seem to be trying to let her and so am I. She hadn't slept in a week in a half really but the last couple of days she is sleeping pretty hard and I think she really needs it. When she is awake...she seems to be doing ok considering. And that's all I have for now...its going to be a long road and we are here for awhile.
Lack of sleep wouldn't have been helping Maria any. I know I was going CRAZY in the hospital, because they gave me so much fluid that I had to go to the bathroom every 1 1/2 hours. I even considered asking for a foley! Once they stopped the fluids and gave me a sleeping pill, I had instant relief from really feeling horrible. Even the post-chemo nadir wasn't as bad as the lack of sleep!
Of COURSE someone has to manage/coordinate/watch out for all the potential conflicts. I applaud you for knowing you are able to stand up to the MDs. It helps keep them on their toes! It's always good when the patient or his/her advocate/caregiver can stand up to the "system". I have a really sympathetic, caring physician who is well-aware of my healthcare background and he STILL did something that pissed me off. (He ordered the nurse to put in an IV line to give me fluids the day before they were going to insert the PICC for chemo without mentioning it to me first - in which case I would have asked him how much he'd like me to drink... But he won't do anything like that again!)
The labs sound pretty good. It's also good that Maria is still able to produce urine. The whole idea of temporary dialysis is to allow the kidneys to "rest and recouperate" from whatever "insult" they have sustained (be it from trauma or from drugs or a metabolic issue).
I hope you don't mind, but I've copied some of the stuff you wrote about the staff all a-fluster because "the doctor is coming" to send to my MD. We've been having discussions about communication with patients/caregivers and MD/patient relations. (I know he doesn't have any issues with the nursing staff: they all adore him.) I've talked to him about you/Maria before (no names, of course - just that you are at MDA) and some of the issues you've brought up here. (We have to talk about something while waiting for my lab results to show up in the computer. I think I'm his "fun" 10-15 minutes of his day - at least at the moment.)
Re; the kowtowing residents: when I was a PT student I had to do what were termed "clinical affiliations" (sometimes also termed "clerkships". In one place the PTs and OTs attended the weekly orthopedic service rounds. Usually, we sat in a room, and the senior residents presented cases and showed the relevant x-rays, but once we actually went from room to room. The department chief was present, and I swear that if those residents could have done so, they'd have licked the floor clean before his feet. They certainly did everything BUT lick the floor! The "great man" certainly had the "God" syndrome. Since then I've worked with all kinds of MDs: those who exude the "I'm the great expert, (read "God on earth"), and you are here to learn and listen" and those who take a more collegial approach and actually ask the NPs and fellows their opinion and clearly listen to the patient and/or caregiver.
It's a good thing that they are putting in the CVC. It'll save lots of problems with IV lines. I HATE those! It's also helpful if they are having trouble finding good peripheral access. Yes, there is risk of infection, but there is risk of that with peripheral lines as well.
Go get some sleep tonight. Saturday - if you can swing it - maybe try a spa: facial, massage, mani-pedi, sauna - whatever before you hit the sack: it'll help you relax.
Well, this roller coaster sucks.
So this morning the floor Dr. comes in and said they are going to put her on steroids to see if it will reduce the inflammation of Maria's kidneys...of course the issue with steroids is that they cause weight gain and muscle weakness. He said they would try this in hopes to avoid dialysis. Ok...then they finally take her down to do her CVC and I try to leave so I can take a shower and such and as soon as I pull out of the parking garage Maria calls me and tells me the Dr wants to talk to me. It was the Kidney Dr.
She gets on the phone and tells me that after looking at everything they think the best thing would be to go forward with dialysis now and she wanted to place the catheter for that now, while Maria was already going to be sedated for the CVC. She told me that the steroids had either a 50/50 or 40/60 chance of being successful for solving the kidney issue and that if they waited to see if it worked and then it didn't, the damage would get that much worse and it would be that much harder to fix later...she said she believes Maria won't require too many treatments for long and that her kidneys will fully recover if they do this. So, I am in shock because I didn't expect this, I feel so sad for Maria being told this and I can't be in that area for her, and I have no idea what the right move is. I told them to go ahead as long as they could get the catheter in the groin. She was not to have anything coming out of her neck for any reason...Maria COULD NOT handle that PERIOD!!!
So what they ended up doing was putting the dialysis catheter in the collar bone region where the CVC was supposed to be and then give her a regular PICC in her arm for IVs. I guess they couldn't get it in her groin with all of her swelling and that's fine. I almost don't care where they were gonna put what as long as it wasn't in her neck!
So she had her first dialysis treatment and her blood pressure got really high...like 193/111! So they gave her a one time blood pressure medicine and it has come down but that's worrisome to me. Her heart rate has been better ranging from 75-85. And she still requires 3-4 liters of oxygen at this time. After every breathing treatment she gets...about an hour or two later, she feels stuffy nosed and messes to clean it out and pulls out a clot of blood but the nurse said its normal.
She will have dialysis again tomorrow at 5:30 am they say and that kinda sucks because between 6-8 am AND pm the ICU is closed to all visitors and this is too new for me to feel comfortable leaving her... so I am not happy about it. (patients here have to do dialysis in the ICU and then are brought back to their regular floor and room.)
And when she was brought back tonight the nurse and her told me that at some point one of the Drs decided that they want Maria to have paracentesis done tomorrow. They will stick a needle in her abdomen and drain fluid out of it. This makes me nervous and I need to ask a lot of questions before she signs off on it but I remember someone here mentioning something about it before. I it will give her ANY relief and the complications and risks are low enough...then I am all for it, BUT I want to know and will ask....WHY DIDNT THEY THINK TO DO THIS BEFORE!?!?!?!?!? WHY did they wait SO long to take action? And I mean from the day she was discharged, why did EVERYTHING that was going even slightly wrong be let go so much that we are where we are?
I am just so sad, mad, angry, frustrated, everything about this. I feel nothing but guilt which everyone says I shouldn't feel...I am the one who PUSHED and demanded she have the transplant...and now look at what she has to go through...
I NEED her. I need her to get better and to beat everything thrown at her and to regain the best health she can have! I need to live again and believe in good again.
Sorry you got socked with all this at one time. First of all I think it's good that they started the dialysis. It'll give her kidneys a chance to "rest and recover". The BP thing can happen because of the dialysate (the chemicals they use), but they are used to reactions like that and can adjust the "formula" and procedure. I've been around long enough to remember the days when people who needed permanent dialysis in order to live had to be "vetted", because there weren't enough centers/machines for everyone, so a person who was the supporter of a young family, for example, got priority over an older, single person. These days there are so many people on dialysis and they have so much more experience in dealing with many more patients.
I've never had paracentesis, but I have had thoracentesis - twice, (for a huge pleural effusion). They give lidocaine to numb you, and the needle/catheter they insert is very fine. I know I felt instant relief from the diminished amount of fluid that was pressing on my lungs. I've had loads of patients who have had paracentesis, and they mostly say they feel relief afterwards. I obviously can't answer the question about why they didn't think of doing it before. Obviously, though, there may not have been a large collection of fluid in free space in Maria's abdomen before. Just being very edematous isn't the same thing. The other thing is that when Mariawaa discharged before her counts were much lower - so any risk of infection would have been higher then, and they may not have thought there was much they could have aspirated then.
Re: the "stuffy nose" and blood clot thing after the nebulizer treatment: has Maria ever had a history of sinus problems in the past? That's where the clots could be coming from. Just a thought...I'm sorry that Maria still needs 3-4 L/min of O2. Is she getting it through a nasal cannula or is she using a face mask? Sometimes the nasal cannula can irritate the nose (especially if it ever winds up being put in "upside down"). Is Maria a mouth breather? That's another issue: mouth breathers don't get the full benefit of the O2 via NC. (I currently have a patient who happens to be a priest who has that problem.) Have you mentioned this to the nurses?
You can't blame yourself in hindsight over begging Maria to have the transplant. What would have been her prospects without one? Of course no one can know for sure, but it certainly was a risk either way. My husband has taken the position that the decision about what to do is mine and mine alone and that he'll support me either way when the time comes that I have to make the decision. (Actually, he's passionately against chemotherapy and wasn't happy when I did that.) Whatever happens, you shouldn't blame yourself. I'm sure you both spoke at length with the transplant MD and knew all about the potential risks and benefits beforehand. I don't think you would have pushed Maria to have the transplant if the MDs hadn't thought she was a good candidate or if they had thought the risks outweighed the potential benefit. None of this is your fault: it's the fault of this nasty disease. We all "know better" with hindsight: if I had known back in June what I know now, I'd probably have pushed for another round of chemo when all I really wanted was to "get out of jail". You wanted Maria to have the best chance at survival: that's all, and you are doing everything in your power to help her. Don't feel guilty about having her interests at heart. Don't blame yourself for anything that's happened or will happen. Self-flagillation is not the answer. Go get some sleep - and the hot bath.
Cancer and blood cancers in particular are vicious often deadly diseases. The treatments currently available are extreme medicine. A SCT is an arduous journey but when it is the treatment of choice it is the best option for a cure and a chance at life. I am certain that when Maria signed off on this treatment plan you were told that it was a tough road with possible pot holes along the way. Maria is hanging in there. She can and will get past this bump in the road and you both will do what ever it takes to get to the other side of this.I hope her family's visit gives your the opportunity to get some rest away from the hospital.
Don't be a Monday morning quarterback. We make decisions based on the information at hand. It doesn't do anyone any good to second guess. You need to look at the situation at hand and work with the cards in your hand. Don't punish yourself for decisions you and Maria have made.
I also think it's good that they started the dialysis. I was on dialysis when I had e.coli in 2008. Things were pretty grim at the time and they didn't hold much hope for me but the dialysis worked. It's too bad about the ICU visiting hours. Perhaps you could talk to someone - although it may also be a time when you can get some time for yourself. My local hospital recently dropped all visiting hours including the ICU. Now it's handled on a personal level. As long as the patient is able to have visitors, it's allowed anytime.
It is a roller coaster and it sure does suck. Remember just little baby steps. That is what the nurses and doctors kept telling me remember little baby steps, no giant steps. Some good days, some bad. Things can change from moment to moment. Regarding the dialyses my son was on a continuous dialysis for 30 days, that is 24/7, then for 2 or 3 week he had dialysis 3 times a week. He has not had to have anymore since last Aug 2011. His blood pressure went up and down with the dialysis. Actually the kidney doctor said it was bad for the kidneys when the blood pressure was low as the kidneys don’t get enough oxygen and blood flow.
It was easier when he was in the ICU all the time so I could be there with him on the dialysis. It was a bit scary for him when he was transferred to a long term acute hospital and they took him to a different room for the dialyses with her dialyses patients. But that only lasted a couple of weeks, and his kidneys were working on his own.
Transplant is scaring. Sometimes I keep thinking I missed the boat because I had a sister 11 yrs older and a brother 2 years younger as perfect matches. but I was diagnosed at age 57 and the doctor were pressuring me to stay on the Gleevec, as the odds for my age for a transplant were risker then the Gleevec. But it so ever lurks in the back of my brain, I missed the chance for a cure. But then again things could have went badly. One never knows, we don’t have a crystal ball.
I have forgotten how old Maria is and what her diagnoses was?
Sending prayer your way. PamSouth
Ok...so Thursday her creatnine was 4.02 and after 2 dialysis treatments it is down to 2.72 today! She is producing good amounts of urine even though they took her off of Albumin and Lasix! These are all good signs they said. She gets tomorrow off. No nothing tomorrow and then Monday they will re evaluate based on her numbers after having had a day off. The paracenticis went well. They took 4 liters!!! (with the 2 dialysis and the tap they said that they took a total of 9 or 10 liters off her in two days!!) She felt MUCH better after and not so tender in the stomach. It amazed me! The slightest touch to her stomach would make her yelp out in pain but not after dialysis and that tap yesterday! Made me SO happy. Her heart rate has gotten so much better ranging from 70-85 still. (was up in the 110's.) Her blood pressure only gets high during dialysis. After it's done it goes down over the day and gets to a good normal by night at 122/80. Her oxygen is still questionable...they haven't tried to turn it down and I wish they would just see as she is still at 4 liters and stating at 97% with that. Now she has a yeast infection in her mouth. I don't even know how that happens..but it's pretty bad I guess. They just started her on Nystatin where she swishes and swallows. Her complaint is throat burn mostly with that. Her overall mood is improved and her movement as well. She continues to remain negative for all infections/diseases so that's good. Her urine is finally getting better as far as not having such high amounts of blood in it. Infact they want to start trying to get her off the catheter this week after she works a little more with physical therapy but they have to retrain her bladder they said so it will take a few days to a week before it comes out I think. I am nervous for her on that but excited because it finally feels like we are improving and on our way to a real recovery. GOD WILLING nothing else comes up EVER. LOL.
So all good things. Her counts all took a pretty big hit though because the did a steroid pulse with her where she had two days of HIGH dose IV steroids and then thats it...so her counts have dropped. Whites today are 2.7, hemo is 8 and platelets 25. My stomach always turns when I see low numbers but I KNOW its the meds and such its just hard to see that.
Marias sister, brother-in-law, niece and two nephews as well as her dad and her dad's wife (we do not call her step anything! Long Oprah worthy story LOL) all came Friday night and spent like 2 hours visiting and opening all the presents. They surprised her by not telling her that her almost 3yr old nephew can now walk! (They have been doing testing and are thinking he is autistic) and that made Maria so very happy! Then today her dad and his wife came at noon and stayed till about 5 and at 5 her sister and niece came until midnight. I came back at 10pm. I'll be honest, I didn't get much rest but I tried so hard....I could not fall asleep and it made me so mad. I started dozing at like 9pm of course...stupid body! But I did relax and lay around and play with my furbabies all day and that was nice.
So, won't know much more till Monday but it's looking better than I expected and I am just hoping it stays that way..
And I know I shouldn't feel guilty for pushing her to transplant. I know the Drs. wouldn't let her go through such an extreme thing if they didn't think she should as well. Its just that she really is my whole world. I don't have kids..she's it...and she is such a rare kind of person that the world needs more of not less! Some might call it unhealthy, but when I am away from her I feel like my heart is out of my chest..I call it soul mate and pure love....
anyway...I am just strung out... I just made myself think that I have to be "on top of it all". Sometimes I feel like I can't blink because I am scared I will miss something and it could send everything downhill... maybe parents can understand that thought process better but...she HAS to live and live long...she is too needed here and not just by me...you have heard me say this all before and I am too tired to repeat it again...but thank you for dealing with my many ups and downs....I feel genuinely sorry for people who have mental illnesses and have lived this way for years and years...oh my gosh...I have been this way for a little over a year and I have never been so exhausted in my life! I don't think I can explain the extreme exhaustion I feel..and I know I did it to myself!