Just wanting to get basic information up for all of you!
Mom was briefly inpatient from 13th-19th for her CMV. It became manageable because she responded to the antiviral medications AND her kidney functioning came back-it was dipping a bit because of her dehydration (now she's on a new balancing act between her being dehydrated and over hydrated/retaining too much fluid in her abdomen).
Other item to mention mom's cardiologist on Wednesday gave mom RAVE reviews!!! Her heart is still getting stronger, her blood pressure is bouncing back and her fluid retention is no where close to what is was back a few months ago!
One last note: We are LESS THAN A MONTH AWAY FROM DAY 100!!! Woot woot! Only a little more than 4 weeks to go! So grow little stem cells grow!
And on that note, I know every one's schedules are getting crazy busy-I can relate-but with my current work schedules (and only 6 days left of PTO that I can use through the end of December, and this is for mom as well as my own sick days). We are still in need of companions for mom. Most of the time this will just be you hanging out at the house with her, at most driving her to an appointment or accompanying her on a walk. But none-the-less according to her doctor's she needs SOMEONE with her. So if you haven't signed up but would like to help during the next 4 weeks PLEASE send me an email: wolkate@bethel.edu (we have everything from 4-8 hr shifts, including overnights, meals, cleaning, etc...so let me know what works and we are HAPPY to be flexible).
Thanks again to all of the INCREDIBLE ANGELS in our lives who have volunteered in one way or another over the last 7 months, we are heading toward the finish line and it's only thanks to you that we have ran this race as long as we have. So THANK YOU!!!
Well my darlings, I've got get back to work. Will share more exciting news in the next blog, just didn't want to leave you all in the dark!
Thursday, August 25, 2011
Wednesday, August 17, 2011
Meet My Mom: The Vampire (Just Kidding)
At least that was the joke when I went to visit mom on Monday! She had two bags of red cells being infused into her (almost like a flashback to transplant day). This, apparently, was after several hours of waiting for them to arrive... The staff had begun joking that they would have to open a blood bank downstairs in order to get the blood for mom (then the joke progressed to them needing to pay people for their blood). And when it finally arrived the staff joked they had to "jump" a guy on the street for it. I was in stitches when she told me their jokes, if you knew the staff you would know how funny this story would be coming from them!
But back to mom... So thanks to the recently reactivated CMV, (see previous blog) she's been inpatient since Saturday. So far everything seems to be going okay, though the nausea has increased a bit so her appetite is a bit off again. She's back on Bumex to prevent retention of fluids (especially with the risk this would pose to her now "healthy heart"). Unfortunately fluid retention is a side effective of the current antiviral, so we have to make sure she doesn't end up with another "litter of puppies" (the joke when she was getting liter upon liter of fluid off of her a few months ago is that she was giving birth to "puppies." Okay maybe we are too goofy, but ask her to tell you the story sometime and you will be laughing until your sides hurt!)
Again, back to the story... So mom's counts are low again due to the current regiment of antivirals so the risk of other infections, viruses, etc are high again. But this is not stopping her from her daily walks! She's a Walking Queen-bring it on you crazy "mall walkers" you ain't got nothin' on my momma! ;-) And on the bright side the walks help mom with her nausea, so we've been taking daily walks-she's even been permitted to go outside (with her mask on, of course). We even ended up walking about 3/4 mile on Monday, major points on her pedometer! Woot woot!
It's been a bittersweet week for mom and I. It has been wonderful catching up with all of the staff at the hospital! As always the staff is SUPER excited to see mom again-but it's a sad situation because she's back there because she's needing their professional care, instead of stopping by for a short visit. None-the-less they (and we) are loving our time together again! It's like a SNL episode but we get to experience it LIVE instead!
Well back to work at the office. I will try my best to keep you all updated. At this point mom may be outpatient this weekend or next week-we really have no way of knowing until the doctors tell us it's time for her to go home. Thanks again for the support everyone!
All my love,
Kate
But back to mom... So thanks to the recently reactivated CMV, (see previous blog) she's been inpatient since Saturday. So far everything seems to be going okay, though the nausea has increased a bit so her appetite is a bit off again. She's back on Bumex to prevent retention of fluids (especially with the risk this would pose to her now "healthy heart"). Unfortunately fluid retention is a side effective of the current antiviral, so we have to make sure she doesn't end up with another "litter of puppies" (the joke when she was getting liter upon liter of fluid off of her a few months ago is that she was giving birth to "puppies." Okay maybe we are too goofy, but ask her to tell you the story sometime and you will be laughing until your sides hurt!)
Again, back to the story... So mom's counts are low again due to the current regiment of antivirals so the risk of other infections, viruses, etc are high again. But this is not stopping her from her daily walks! She's a Walking Queen-bring it on you crazy "mall walkers" you ain't got nothin' on my momma! ;-) And on the bright side the walks help mom with her nausea, so we've been taking daily walks-she's even been permitted to go outside (with her mask on, of course). We even ended up walking about 3/4 mile on Monday, major points on her pedometer! Woot woot!
It's been a bittersweet week for mom and I. It has been wonderful catching up with all of the staff at the hospital! As always the staff is SUPER excited to see mom again-but it's a sad situation because she's back there because she's needing their professional care, instead of stopping by for a short visit. None-the-less they (and we) are loving our time together again! It's like a SNL episode but we get to experience it LIVE instead!
Well back to work at the office. I will try my best to keep you all updated. At this point mom may be outpatient this weekend or next week-we really have no way of knowing until the doctors tell us it's time for her to go home. Thanks again for the support everyone!
All my love,
Kate
Wednesday, August 10, 2011
Another Week, Another Adventure
Well mom's had another lovely week at home. Healing nicely and starting to take wonderful walks. Well, she's taking short ones but still the air outside seems to improve her mood, even with her mask on! She seems to be getting back to her "frisky" stage when she wants to be moving and busy and doing things herself more and more. So if you find her making you dinner when you visit her don't be surprised!
Her GVHD rash has now subsided thanks to some miraculous cream the doctor's perscribed, which not only got rid of the rash but also made her skin as soft as a baby's bottom! On the other hand she's having some minor issues with dizziness-standing up too quick and laying down can leave her feeling like her eyes are rolling around in her head. This is likely because of her medications in combination with some minor dehydration last week-which on that note Mom's off her dietary restrictions! LET HER EAT SALT!!! (All she wants! Because it will actually help her retain some fluid which she needs right now).
Her current battle (other than the major internal construction going on-bone marrow changes and such) is that her system thought it'd be a great idea to allow a virus within itself to come active when mom has no immune system. I mean, come on now, give the trooper a break here guys! Geez!
Her current virus is called Cytomegalovirus (or CMV):
http://www.health.state.ny.us/diseases/communicable/cytomegalovirus/fact_sheet.htm
To most of us this will appear like a common cold, mom apparently had it before I was born. Which was fine because she had an immune system and was able to get over it. But when you take away the jail cell containing this bad boy, it can do some major damage to a defenseless body like my moms.
So here's the plan: Mom's had this virus appear "positive" on her blood work since the 22nd of last month, they doctor is giving her through this Thursday (with her current antibiotics) to battle this on her own. IF it doesn't resolve itself, or at least respond to the antibiotics by that time, then she will have to go inpatient again for a week to get a different antibiotic which causes major havoc on her electrolytes, etc and so she will need to be closely monitored for that week. So prayers for a "negative"/clean bill of health for her on Thursday!!!
Other than that not too much going on with mom. A dozen or so wonderful volunteers have kept us going so far, with me needing to take sporadic days off to help fill in the gaps. As I explained to the volunteers, per her primary physician:
"The need for the caregiver is to monitor and assess symptoms, ensure proper disbursement of medications, provide transportation to daily appointments, and communicate with the medical team. The first 100 days post-BMT are critical and a 24-hour caregiver is required.” (7/11/11)
In all honesty this sounds a LOT more intense and skilled than it actually is! At this point mom just needs someone in the house with her, period. You do not need to monitor her, entertain her or even interact with her most of the time. She is very independent and is able to take care of herself. She self monitors, takes and plans for medications, and communicates with her medical team. You are there to help provide rides to and from clinic (as she is not allowed to drive because of her various medications). You are also there in case of an emergency, if something were to happen to her all the “contacts” are on the cover of the Caregiver Blue Binder on the dining room table.
Anyways, got to go get a few more things done in the office before I go spend the evening with mom. If any of you are available to spend a few hours with mom please let me know! We are a little short on volunteers (despite the 95 we currently have listed on our site, only about 10-15 are regular participants and I don't want them to burn out). So if you or anyone you know wants to spend a couple hours in an air conditioned townhome, with tons of food, free wifi and cable please send them my email address:
wolkate@bethel.edu
Thanks again everyone!
All my love,
Kate
Her GVHD rash has now subsided thanks to some miraculous cream the doctor's perscribed, which not only got rid of the rash but also made her skin as soft as a baby's bottom! On the other hand she's having some minor issues with dizziness-standing up too quick and laying down can leave her feeling like her eyes are rolling around in her head. This is likely because of her medications in combination with some minor dehydration last week-which on that note Mom's off her dietary restrictions! LET HER EAT SALT!!! (All she wants! Because it will actually help her retain some fluid which she needs right now).
Her current battle (other than the major internal construction going on-bone marrow changes and such) is that her system thought it'd be a great idea to allow a virus within itself to come active when mom has no immune system. I mean, come on now, give the trooper a break here guys! Geez!
Her current virus is called Cytomegalovirus (or CMV):
http://www.health.state.ny.us/diseases/communicable/cytomegalovirus/fact_sheet.htm
To most of us this will appear like a common cold, mom apparently had it before I was born. Which was fine because she had an immune system and was able to get over it. But when you take away the jail cell containing this bad boy, it can do some major damage to a defenseless body like my moms.
So here's the plan: Mom's had this virus appear "positive" on her blood work since the 22nd of last month, they doctor is giving her through this Thursday (with her current antibiotics) to battle this on her own. IF it doesn't resolve itself, or at least respond to the antibiotics by that time, then she will have to go inpatient again for a week to get a different antibiotic which causes major havoc on her electrolytes, etc and so she will need to be closely monitored for that week. So prayers for a "negative"/clean bill of health for her on Thursday!!!
Other than that not too much going on with mom. A dozen or so wonderful volunteers have kept us going so far, with me needing to take sporadic days off to help fill in the gaps. As I explained to the volunteers, per her primary physician:
"The need for the caregiver is to monitor and assess symptoms, ensure proper disbursement of medications, provide transportation to daily appointments, and communicate with the medical team. The first 100 days post-BMT are critical and a 24-hour caregiver is required.” (7/11/11)
In all honesty this sounds a LOT more intense and skilled than it actually is! At this point mom just needs someone in the house with her, period. You do not need to monitor her, entertain her or even interact with her most of the time. She is very independent and is able to take care of herself. She self monitors, takes and plans for medications, and communicates with her medical team. You are there to help provide rides to and from clinic (as she is not allowed to drive because of her various medications). You are also there in case of an emergency, if something were to happen to her all the “contacts” are on the cover of the Caregiver Blue Binder on the dining room table.
Anyways, got to go get a few more things done in the office before I go spend the evening with mom. If any of you are available to spend a few hours with mom please let me know! We are a little short on volunteers (despite the 95 we currently have listed on our site, only about 10-15 are regular participants and I don't want them to burn out). So if you or anyone you know wants to spend a couple hours in an air conditioned townhome, with tons of food, free wifi and cable please send them my email address:
wolkate@bethel.edu
Thanks again everyone!
All my love,
Kate
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