I am so sorry that Maria's journey through the SCT has not been as smooth and boring as we would have liked. I am glad you recognized that you need some support to help the two of you through this period. I hope they are able to control the GVH and keep her kidney's getting better
Such a shame what she is going through. I find it harder and harder to post as this stuff sucks soooo much. Seems I have little to say positive. We caregivers need to heed the advice of the other wise posts. If you need a thread, I have two left. We could both be hanging on by one.
Man, you girls are really bring put the the ringer. I don't really have any advice to add here because Nate never had skin GVH, let along stage 4, and never had kidney issues. But, I HAVE seen a young woman at clinic every time we go who I know has had the GVH. I remember back in April when Nate was sick as a dog, puking a dozen times a day, we were in clinic and we saw her for the first time. She was probably 21 or 22, about 5'6", and weight MAYBE 90 pounds. Her skin, and I mean ALL of her skin, was barely hanging on. She was covered in blisters and open wounds and was in a wheel chair. Nate said "wow, I feel bad for her." Now, fastforward 9 months, we just saw her at the beginning of January, and she was walking on her own, all the GVH had cleared (though she does have scarring) and she was doing really well. I guess what I am trying to say is that people do come back from all this bad stuff.
It basically just sucks, everything about having cancer, specifically leukemia, and everything about transplant. It's a bumpy road. The one thing that I have told myself and my husband through all of this is that this experience, our journey thought cancer and recovery, will be the worst thing that will ever happen to us. I have decided that it is the wost thing that will ever happen to us. That means that once it's all over, once we get back to a normal life, it'll be smooth sailing from there on out.
So I hope the same for you. One day this will all be a terrible, terrible memory.
I'm thinking of you both every day, and I hope Maria starts feeling better sooner than later.
oh dear girls this leukemia is evil, the devil , i despise it but as i
told kevin who was transplanted april and was very ill afterwards hang in there it will get better.... i continually told my son i love you i need you you can do this positive stay positive no matter what. we will always be brutally scarred by this experience...damn shame it changes us the caregiver forever. our loved ones get through it they have no choice. transplant is the best and only way for a cure, so damn his bs and keep on keeping on things will turn around...just takes time. prays sent to all....
I just wanted to let you know that you both are in my thoughts and prayers. My husband, David, was in the hospital over 170 days last year for treatments, transplant and multiple transplant complications for ALL. I know how scary, exhausting and heartbreaking it can be as the caregiver. There certainly were times that I wondered if things would ever improve for him and at what cost to his body. Fortunately, at 8 months post-transplant, he's finally starting to look and act like his old self again after a 14 month struggle. We're still in transplant clinic a few days a week due to recurring CMV bouts but we have more good days than bad and are hopeful for a good 2012.
He has had fluid retention issues throughout, too and still has about 15lbs of Ascites. For the most part, he's taken a combination of several different diuretics to battle it. It takes such a long time for the fluid to dissipate. I hope things start to improve for you ladies very soon.
Sounds like you really got a lot accomplished and good for you for asking for help from friends/family. I know when I was sick, I had friends who wanted to help but really didn't know exactly what would be helpful. So if you can give them clear roles to play to help ease your burden, that is a good plan. Many people do find being needed and being able to offer assistance uplifting, and it's important to allow them the opportunity to help you both.
It sounds like the dialysis really helped Maria, along with the paracentesis last week. Having that much fluid taken off has got to be a huge relief for her. If she needs more dialysis to help those kidneys recover, I don't necessarily see that as a terrible thing, especially considering the benefit she's realized from it to date.
As for the photopheresis, I've seen some other patients on these boards, particularly those with skin GVHD, realize some improvement from it. From what I understand, the treatment is not difficult physically, although it can be time-consuming. Another thing I've gathered is that it takes a while to work, so if they think it would help her, it might be better to start sooner than later. I certainly would not be frightened of it in any way. Here's a link to some more information about it: http://cutaneouslymphoma.stanford.edu/community/photopheresis.html
As a side note, you commented a few days ago that only Karen was posting on this thread, and it sounded like you were worried that you had run off some of us by venting. That absolutely is not the case. Please use these boards to get things off your chest and express yourself any way you need to. You are under tremendous stress and please think of us as your "pressure relief valve"! I had 3 tests this week (in college) in a challenging quarter and simply didn't have time to post, but I do check in with you every day and follow Maria's journey. We all do care about you both and post whenever we can or when we feel we have something to contribute.
Take care; I'm so glad you got patient advocacy involved.
Grrr...so they are giving her 40mg of IV Lasix 3x today and, for the first time in days, she's been awake and drinking and eating a bit and her stupid urine output sucks! I am so so so so so worried about the kidneys!!!! If I KNEW that 5 months even, of dialysis would make her kidneys recover, I would be FINE. I do NOT want to see her end up on a long term or permanent dialysis!
But I am soooo confused anymore on how Lasix is supposed to honestly work! I mean...they took out 2 liters of fluid with dialysis yesterday...if she isn't taking Albumin to pull the fluid back into the veins and the dialysis is just filtering the blood, where the hell is the 2 liters of fluid coming from??
And what does that mean as far as Lasix goes and her not responding well to it anymore? Where is the fluid they want to come out, supposed to come from? How does Lasix, when successful, produce more urine output?She's drank at least about 30 oz I think, but that combined with the Lasix isn't showing with her output. I am anxious and nervous to see her creatinine numbers tomorrow morning. And her sugar, thanks to the steroids, has sky rocketed to 410!! They had to give her insulin. She hasn't been over the normal limit in a long time till now. Isn't having high sugar also hard on the kidneys? I want to SCREAM! I feel like they aren't looking at the WHOLE picture. sigh...
btw, her catheter makes me anxious too because it isn't flowing right. We have to keep pushing down on the bed to get it to flow DOWN into the bag, and Maria said when we do that she can feel pressure in her bladder... I just keep wondering if there's any possibility that is effecting her output...I know..wishful thinking..
On another note...
We have had some AMAZING nurses here! We've gone through so many and I can honestly say that out of all of them, there are maybe 3 that we can't stand...and of course tonight, we got one of them back. The last 3 nights Maria's nurse was the charge nurse who is in our top 2 of favorites and she likes Maria A LOT sooo, since she is here and schedules often and is charging often, she decided that she wants to let Maria make a "core" nursing team! We are coming up with a list of nurses we have already had and loved and they are going to try hard to make them be her nurses so that Maria is always comfortable with who's caring for her and she said if there are nurses we don't want around her at all, to tell her that too and that they would make it so without letting any of the nurses know about it. There are only 3 that are on that list. Some of you might be shaking your head at this..I hope not though. I for one, am VERY grateful because when Maria has a nurse that she feels is to uncaring, it makes her super anxious and nervous and she starts refusing care, and then it makes it hard on me, because she doesn't want me gone until they change shifts and I won't leave her with someone she's afraid of. The 3 nurses on the list have bad attitudes. They don't listen, they are pushy in the WRONG way, and they are not gentle when they do her skin care and THAT is where I draw the line! These people are damn lucky I am not Dexter kind of psycho cause they sure have put the thought in my head of taking a cheese grater to their skin so they can learn some effing compassion to the pain she is in!
Ok...you said I could vent, and there you have it! LMAO Now if you aren't terrified to come back...thank you for your continued support!
BLADDER SCAN!!! I didn't think of it till' now! Tomorrow morning when the day nurse comes back (we like her) I am going to ask them to do a bladder scan! They did it before. If she isn't having much urine output, her bladder shouldn't have much in it either right? But if she has a lot of fluid in her bladder, then there might be something else at play right? Does this sound possible! Why oh why aren't you guys up late like me? LOL
The "core" nurses program is a great idea!!! Every patient should get the nurses they feel comfortable with. What a great nurse-manager! I've long-since come to the realization that the nurse-manager makes or breaks a unit.
Re: the fluid - it comes from the interstitial spaces. Excess fluid there is edema. When there's enough of it, it feels hard. The skin stretches to accommodate all that fluid (which given Maria's skin GVHD must be extra horrid.) I know my legs blew up like tree trunks, and pants that had been loose-fitting were tight. Lasix worked for me, but after my skin was wrinkled. I went through tubs of moisturizer! It's a bitch!
Sorry about Maria needing steroids, but I guess it can't be helped. Most people on high dose steroids need insulin in the short-term. It's so usual that when they give pts high dose steroids for all kinds of conditions, they have to be admitted for monitoring for that very reason. Obviously they are thinking that without steroids the GVHD would really get out of hand. It's a juggling act.
Glad you seem to have finally found some great people who will work with you.
Alas for me, I am awake!
The foley SHOULD be draining all the urine, but I recall you mentioned a while back that Maria was having some blood clots in her urine, so one could be partially blocking the catheter. I know it was changed recently, but still.... I'm no big expert on foleys. Sorry. The scan souds like a good idea, though. You can but ask.
All of these links are about Lasix...they all say that a side effect can be decreased urine output. They also say that its dangerous to use on patients with diabetes or renal insufficiency!
About the nurses, I TOTALLY undertsand. Nate was treated at Mass General in Boston, and they AUTOMATICALLY have a team of "primary nurses" and there are 3 of them who almost always had Nate, and I mean almost ALWAYS for every day and every shift, unless they all had the day off. Nate was also able to request to NOT have nurses, and there were 2 he did that with. One of them made him wait SIX hours, and he rang the call bell a DOZEN times, to get him his miralax (he was constipated lol).
Anyways, having a good nursing team is key. They are the people that Maria sees regularly, and more often than the doctors, and I think it's important to have a good, close relationship with them. Nate is even friends with 2 of his primaries on facebook now, and they come down to clinic every now and then from the inpatient floor when we are there to see us and the baby.
MGH even has a primary nurse for when we go to clinic, and she has had us every single clinic visit except maybe twice (out of the probably 50-60 we've had). It really makes a difference when they know you, know your issues, even know your personality and can develop a relationship.
I hope having a core team helps her as much as it helped Nate.
When he had the VOD and GVHD of the colon edema issues (approximately 45 lb weight gain in a few days) in the hospital, he took a combination of IV Lasix and also took Zaroxolyn. Once home, he took pill forms of each for several months. About a month ago, they switched him to a combination of Aldactone (Spirolactone) and Florinef because he was having low sodium issues. It has worked well but as I said in the post upthread, he still has some Ascites (super skinny with a small Santa tummy).
The key to getting the fluid off for David is his Albumin levels. The closer he would get to a normal range for his Albumin, the faster fluid would come off. To aid this, he drinks a lot of Ensure protein drinks and eats a high protein diet. Any conditions or meds that negatively affects his Albumin, i.e. such a Foscarnet for CMV, results in a quick weight (fluid) regain, too, of about 10-12 lbs in a week that goes away once he stops the meds. It's taken the 8 months since transplant for his Albumin to finally get into a regular normal range. We're going to see a Hepatologist here at Duke in a few weeks to get his thoughts on the subject. Hope this helps.
The core nurses is a good idea. At the Hutch we could select a primary and secondary nurse. It was a mutual agreement between the nurses and me. Whenever they were on shift, they were assigned to me. Also, if Maria doesn't like a nurse, refuse her! I had to do this in the ICU once. The nurse was very nice but her care made me nervous. They had her come in and apologize to me. I didn't feel the least bit guilty. My care is too important to me to mess with a nurse who makes me nervous
When I was on steroids my sugar got to 400 once. I had eaten 4 grapes - who would have thought. I wouldn't get freaked out over that though - the insulin does wonders. They had me take a long acting insulin at night (lantus) which helped keep the numbers in check. I took humolog or novolog during the day.
It's great that you're asking for some help. If anyone isn't sure how to help and asks, give them an assignment. Small things can be a great relief to you. My wife learned to take people up on their offers.
I'm keeping Maria in my prayers. I'm thinking of both of you even if I don't always reply.