27th October - tuesday
I'm so sorry guys - it's been a hectic few days since we got the word that Jen could be discharged.
Yesterday, they let her out of the hospital.
She got home late in the afternoon after meeting with the "team" and the transition nurse and the pharmacist.
Meg and I wanted to prepare the house for her arrival making it as germ-free as possible.
so, without much notice, the entire process was set in place and there was a lot for everyone to do. Now, she will have the chance to recoup at home.
she will have to go to the clinic frequently at first and then her visits will taper off as she progresses.
she's mostly tired but her counts are progressing wonderfully and her bilirubin is going down slowly.
thanks for your patience.
we'll talk to you soon. Hopefully, Jen will drop you a line.
Tuesday, October 27, 2009
Thursday, October 22, 2009
Day +16
The results are in - her endoscope and colonoscopy shows she has GVHD in both the upper and slower GI system. Since the 'team' already started the protocol for GVHD, she's ahead of the game and will stay on her steroids at the current strength for the next couple of days. Then, if signs are good, they will start weaning steroids very slowly.
It is my pleasure, honor and privilege to let you know that Jen has TURNED THE CORNER!!! Her bilirubin fell 11 points, the transplant cells are right on track, multiplying as we speak!
With this disease and procedure, 24 hrs makes all the difference in the world. I'm sure you are wondering how things can turn around and be so positive in just a short time. Many times patients take a turn for the worse and it looks doubtful they will make it. The next week, they are discharged. This week, we watched Jen go to the bottom and now they are talking about her getting out of the hospital. It's a mystery to me but who cares how and why it happens like this, only that it happens. Jen will have to prove herself worthy of discharge - tonight they shut off her pain pump. She must begin eating food (she's been IV fed for several days). She must be able to get around on her own, including using the bathroom. Jen has her goals back - getting out of here on Monday. Yes, that's right, by Monday.
We know that most patients get re-admitted at some time because of fever, infection, etc. after discharge (actually I think all patients do) but Jen doesn't care if she's only home for a couple of days to regroup, she'll settle for that. Of course, her goal is to never set foot in UW again. All the IVs she's still on will become pills she'll take at home. Now it's our turn to take care of her. Scary thought but they'll teach us what we need to know.
We are so thankful to God and all his angels at the hospital and on this blog for getting us through this experience. We know we have a way to go but if you let us lean on you a little longer, we'll do fine. We'll keep blogging with daily updates - hopefully Jen will take over as blogger. It would be great for you to hear her point of view on all this.
Thank you friends, family, doctors, nurses for being there for us. Thank you Jen for fighting the good fight!
jo/mom/granny
The results are in - her endoscope and colonoscopy shows she has GVHD in both the upper and slower GI system. Since the 'team' already started the protocol for GVHD, she's ahead of the game and will stay on her steroids at the current strength for the next couple of days. Then, if signs are good, they will start weaning steroids very slowly.
It is my pleasure, honor and privilege to let you know that Jen has TURNED THE CORNER!!! Her bilirubin fell 11 points, the transplant cells are right on track, multiplying as we speak!
With this disease and procedure, 24 hrs makes all the difference in the world. I'm sure you are wondering how things can turn around and be so positive in just a short time. Many times patients take a turn for the worse and it looks doubtful they will make it. The next week, they are discharged. This week, we watched Jen go to the bottom and now they are talking about her getting out of the hospital. It's a mystery to me but who cares how and why it happens like this, only that it happens. Jen will have to prove herself worthy of discharge - tonight they shut off her pain pump. She must begin eating food (she's been IV fed for several days). She must be able to get around on her own, including using the bathroom. Jen has her goals back - getting out of here on Monday. Yes, that's right, by Monday.
We know that most patients get re-admitted at some time because of fever, infection, etc. after discharge (actually I think all patients do) but Jen doesn't care if she's only home for a couple of days to regroup, she'll settle for that. Of course, her goal is to never set foot in UW again. All the IVs she's still on will become pills she'll take at home. Now it's our turn to take care of her. Scary thought but they'll teach us what we need to know.
We are so thankful to God and all his angels at the hospital and on this blog for getting us through this experience. We know we have a way to go but if you let us lean on you a little longer, we'll do fine. We'll keep blogging with daily updates - hopefully Jen will take over as blogger. It would be great for you to hear her point of view on all this.
Thank you friends, family, doctors, nurses for being there for us. Thank you Jen for fighting the good fight!
jo/mom/granny
Wednesday, October 21, 2009
day +15
i posted during the night for day +14 but can't seem to find it. Of course, I don't remember what I said. Well, it's now Wednesday AM and Jen is sleeping, receiving a bag of platelets. Today, they are going to do an endoscopy to look at what's going on. It should be able to confirm whether her problems are from GVHD or not. They will take a biopsy if need be. We'll have the results tomorrow, we're told.
It's not an easy time for Jen. All her counts are really going in the right direction. Even this AM, her bilirubin was down 8 points - great news! But, Jen is finding it harder to fight since she never gets a break from the pain, restlessness and anxiety she's going through. How many times can you tell her tomorrow will be better when it never seems to be: one more time, every day! All the side effects she's having are really hard to cope with. She's hardly out of bed, can't get comfortable and is receiving a multitude of drugs, antibiotics, supplements, glucose, anti this and that and pain meds - she can't sleep for more than 1 hr at a time. But she goes on, even though sometimes she doesn't want to.
Will let you know when we know.
Keep the prayers coming.
jo/mom/granny
It's not an easy time for Jen. All her counts are really going in the right direction. Even this AM, her bilirubin was down 8 points - great news! But, Jen is finding it harder to fight since she never gets a break from the pain, restlessness and anxiety she's going through. How many times can you tell her tomorrow will be better when it never seems to be: one more time, every day! All the side effects she's having are really hard to cope with. She's hardly out of bed, can't get comfortable and is receiving a multitude of drugs, antibiotics, supplements, glucose, anti this and that and pain meds - she can't sleep for more than 1 hr at a time. But she goes on, even though sometimes she doesn't want to.
Will let you know when we know.
Keep the prayers coming.
jo/mom/granny
Monday, October 19, 2009
Day +13
Things are still questionable whether it's GVHD but her bilirubin count stayed the same, not going up or down, a good sign. It's 24 hrs since steroids began. Her blood sugar has risen and she had to receive insulin (common with steroid use), lungs and kidneys are still clear and she's being watched very carefully. Jen, except for bathroom breaks, hasn't been out of bed. She complains of trouble walking and pain throughout her body. She was retaining fluids quite a bit but that seems to be under control now. Her jaundice looks a little better but really is still in full swing. Her rash is gone. She's getting a lot of pain meds which help but do not relieve all the pain. Still a waiting game. But, her wbc's and neutrophils are still forming so that is terrific news. Sorry there's not more to report but at this point, we are all taking one day at a time and hoping tomorrow will be better for her and her test results.
jo/mom/granny
Things are still questionable whether it's GVHD but her bilirubin count stayed the same, not going up or down, a good sign. It's 24 hrs since steroids began. Her blood sugar has risen and she had to receive insulin (common with steroid use), lungs and kidneys are still clear and she's being watched very carefully. Jen, except for bathroom breaks, hasn't been out of bed. She complains of trouble walking and pain throughout her body. She was retaining fluids quite a bit but that seems to be under control now. Her jaundice looks a little better but really is still in full swing. Her rash is gone. She's getting a lot of pain meds which help but do not relieve all the pain. Still a waiting game. But, her wbc's and neutrophils are still forming so that is terrific news. Sorry there's not more to report but at this point, we are all taking one day at a time and hoping tomorrow will be better for her and her test results.
jo/mom/granny
Sunday, October 18, 2009
Day +12 - ok - when Jen's bilirubin began to go up (now at 29) the doctors thought it was too early for her to get graft vs host disease. So, when the liver problems increased, they diagnosed the VOD. Now, since new symptoms are occurring which are not associated with VOD but are associated with GVHD (graft vs host disease), they are considering the latter as her diagnosis. So, GVHD is expected to occur, VOD sometimes occurs; GVHD is treatable with steroids (which they have started); VOD apparently is not treatable. So, we are told we should be rooting for GVHD instead of VOD - are you following all this - we know this is not easy for them, there are so many complications and each patient is different; we know it's a balancing act and caution must be taken not to disturb the engraftment. All we know is we want the right treatment for the right diagnosis and we want Jen to feel much better than she does right now. So, we're turning our attention to the treatment and results of this new protocol they've issued and we'll try to keep you up-to-date. This is a wonderful institution with wonderful doctors and staff. I am glad we are here for her treatment. We just want this to turn out RIGHT.
I'll be nicer tomorrow.
jo/mom/granny
I'll be nicer tomorrow.
jo/mom/granny
day + 11
day 11
Well, we got more good news - neutrophils have shown up! But, of course, it seems lately, we get nothing for nothing as another complication has arisen. Jen has veno-occlusive disease of her liver - a fancy name for her capillaries and blood vessels not working well and not doing their job in her liver. The result is a very severe case of jaundice. Now, we are told that the liver is very resilient and can withstand this type of problem but the problem arises if it spills over to other organs which are not as resilient - like the kidneys or lungs. So far, so good but the next couple of days will be crucial. They don't want to be too aggressive with her treatment as they want the stem cells to continue doing their job so they are doubling one of her medications, giving her something to get rid of the fluid her body is retaining and wait and see. Right now, her lungs are clear and her kidneys are functioning normally. They will monitor these carefully. This has been the hardest time for Jen so far; expected by all reports but nonetheless no easier for her or us. So, we are not out of the woods yet but almost there so keep the prayers and good wishes coming and we hope to have really good news for you the next time we post.
jo/mom/granny
Well, we got more good news - neutrophils have shown up! But, of course, it seems lately, we get nothing for nothing as another complication has arisen. Jen has veno-occlusive disease of her liver - a fancy name for her capillaries and blood vessels not working well and not doing their job in her liver. The result is a very severe case of jaundice. Now, we are told that the liver is very resilient and can withstand this type of problem but the problem arises if it spills over to other organs which are not as resilient - like the kidneys or lungs. So far, so good but the next couple of days will be crucial. They don't want to be too aggressive with her treatment as they want the stem cells to continue doing their job so they are doubling one of her medications, giving her something to get rid of the fluid her body is retaining and wait and see. Right now, her lungs are clear and her kidneys are functioning normally. They will monitor these carefully. This has been the hardest time for Jen so far; expected by all reports but nonetheless no easier for her or us. So, we are not out of the woods yet but almost there so keep the prayers and good wishes coming and we hope to have really good news for you the next time we post.
jo/mom/granny
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