Happy Halloween

Hello Everyone,

Well i am going to try this again and see if my hands are a little more steady. Thank you for bearing with me. I am moving very slowly but i think making progress. Still have not heard from PT (insurance issues) but i,m hoping that will help my back. I am walking around the culdesac with the boys. Michael in the am and joey in the afternoon. I,m wobbley and sometimes need an arm but doin better every day. Appetite is ok. I'm not craving food yet. Not even a hot fudge sundae May Day. Speaking of cravings may day and Mussie when i hear your puppy stories i think you are both nuts to have pups again. they are so cute but soooo much trouble.. Although i do mis our simmie. Our neighbors have the best golden retriever in the world. The whole neighborhood loves her and feeds her. well at least Joe and the mailman. Sometimes i think if we had an electric fence maybe i would get another dog. and i like big dogs too. their were many days when the kids were teens that the dog was the only happy one to see me,so i guess i understand the need. Good luck to you both with the training thing. Mussie have a great time in Cal. Sounds like Kate misses you like crazy. Bethie, sounds like you had a good weekend. Are you feelinf better? Pattty , glad business is so good. Probobly will just keep gettting busier till xmas. I'm surprised you want to chop your hair. I guess a change would be nice but you have got such great hair and isn't it easier to just put it back for work? Short and curly would be cute too. Bob Caldarero, i was in shock!!!It must have been 30 yrs. since we've seen you. I'm glad to hear your doing well and playing in a church band. Boy did we all settle down! It was really good to hear from you. i know Eien was tickled too. We all still get together to play cards.(The Cota's Cambells, and Wileys. Its really something to see our kids grown and having kkids of their own. YIKES!!! we are getting old. Well anyway its good to hear from all of you. I did make progress this week. Instead of going down to HUP 3 times a week, this week we will only have to go down one time on Friday. My numbers today were stable, so let's hope that this is a new trend.

Hope this finds all of you and your families well. Thanks again for the blogs and the cards and well wishes and meals. You are the best!

Love Debbie

Baby Steps...

Hello dearest FODs,

I got myself a typist so you may actually be able to read and understand this blog. The night I typed the last post, I was too tired to check the spelling. When I read it later I didn't even understand what I was trying to say. Jessie is here to pamper me for the last three days so she is typing in nanoseconds.

I guess things are slowly improving. As usual, we spent three days (M-W-F) down at HUP. Monday and Wednesday we got out in about five hours each, not too bad. I just needed platelets on Monday. Thank you to the rides from Ron and Mary and Kris. Friday Jessie took me and it seemed like a really long day but it was a productive day. We got lots of labs done, received some platelets, saw Dr. Porter, got a flu shot and a shot of Procrit, and most importantly, went to interventional radiology and had the tube removed from my gall bladder. Thank God it didn't hurt at all.

Dr. Porter had lots to say, still trying to get me off these narcotics. These narcotics are making me weepy I've decided. I'm on a tenth of what I was taking but I'm still very sleepy. Unfortunately, as I've been weening off the pain meds, the back agony has returned. So we have to balance the meds. I've also started something to help digestion because I'm still battling the nausea and it is difficult to eat. I'm eating better than I was even a week ago. I manage to hold down dinner and and maybe a small breakfast so that is a great improvement from nothing at all. Can you believe that Dr. Porter wants me to start in-house physical therapy because I'm so weak and deconditioned? I have an exercise program I'm supposed to do and I'm supposed to walk around the cul-de-sac twice a day. Believe me it is harder than it sounds! I need Joe or one of the kids to walk with me. I think I am getting stronger since now I am able to eat a little bit.

I feel like such a baby. It must have been those last four weeks in the hospital that did me in. I keep telling you that I have little memory of the last week in the hospital and the first two weeks at home. I'm still flaky but can manage to throw dinner together. That's about all I do.

Hoping that all is well with you, your lives sound busy as usual. I love hearing what goes on on a daily basis in your homes. Betty from the beach, congratulations on being a grandmother - isn't it the best? Donna, Chuck, and Wyatt, it is so nice to hear from you and receive your cards. I think of you guys often too and I'm still praying for your situation. I hope you got some nice weekends on the beach - we always seem to miss the Fall. Beth, hope you had a good weekend down the shore with your girlfriends - girl weekends are always the best. Eileen, glad your life is slowing down with the kids. Football season sounded like fun. Good luck with the college decisions for Mere and congratulations for being on the homecoming court! Aunt Angie, I love you, I love you! To all else who continue to write and stay so loyal to me, I want you to know that when I'm having my crazy crying moments, I keep telling myself how blessed I am to have you all as friends and I just need to pick up the phone. So now it's getting to the point that if I'm sad I think of your support and I can talk myself into feeling better most of the time.

Hoping to manage just one visit to HUP this week. The visiting nurse is coming on Monday. If my labs are OK (50/50 chance), they are going to let me wait until Friday to come down. I also see an OB/GYN at HUP on Friday so we will visit the clinic before that visit. We shall see. Hope all is well with you. Enjoy the football and windy Fall weather. I'll write again when there is news to report. I love you guys more than you know.

Debbie

Slowly she goes !!!!

Hello my dear friends,
This will be short becuse mt hands shae like crazy and its dificult to type. But i could not let another minute go by without THANKING you froem thr depths of my soul for your loyalty in writing and sending cards. Joe didn't really explain very well but when i cams homei was really heavily sedated for the back pain. (docs think a aseverely bruised or torm ,muscle).I really missed people. Jessie was here takinh 24hr. cre of me and i hardly rememberit. My friend Edie came all the way up from Roanok for 4 days and 2 trips downtown. It was like having myown private angel. Then Edie went home and Fod Kris took me down on friday. Honestly the both tucked me into mybed when we got home. Some of iit is fussy beuse of the drugs. Almost completely off the pain pills except at nite when i get stiff.
Anyway, the real reason i am finally writing is to thank you for sticking with me thoseweeks i couldn'tevev listen to the posts. Joe and the kids read them to me but i was out. I am very SLOWLY coming back.I'm unbelievableweak. I need help to walk outside and need to take a wheelchair when we go to pennn cause its a long walk. Still nuaseated off and on and thats why penn is messing with meds cause i need to eat. Today at the clinic they threatened TPN at home. /thats thathigh potentcyinfusion you eed to stay nourished. I'm really trying .i guess i have to dig deeper.So eveveery day i thank all of you forpraying for me and thinking about me. The last couple of days i'v been crying half the day. i am trying to make myself stop but i can't. Ron and Mary took me to penn today and i cried when they walkeed in the door at 6:30 am. I gueuss i am finally tired of feeling sick and being so exhausted all the time. Hopefully evevy day will get evevn a tiny little better.We may have to move our tea party till vaentinnes day and the crusiue til the summer.Please know that i think of you all ansd hope the best for you. You are all precious to me. love deb

Weekly Update 10/22

Dear Fods,

Thank you for continuing to post against the old news. It has been another very busy week for Debbie and her support team. Debbie had a Monday, Wednesday and Friday run to the HUP this week again. Fod Edie covered Monday and Wednesday and saw the HUP at their best and Debbie at her worst. Monday was a full day's event while Wednesday was only a 7 hour event. Debbie was so sick on Wednesday that the Lab team took over the meds and made some very sound recommendations and changes that seem to have helped Debbie's nausea and appetite. Fod Kris handled the drive on Friday and again they made it in under 8 hours.

Regarding the drug fiasco, because of the graft failure, we questioned the need to take the anti-rejection drug tacrolimus, which is very hard on the kidneys -- but were told that it was necessary. Well, hours after the last post, HUP called and told us to STOP the tac because Debbie's levels were way too high. She was at 50 and normal is 10! So we stopped the tac and her tremors ended a few days later. This week they told us to stop taking the magnesium oxide because that is only necessary if you are taking the tacrolimus as it facilitates the absorption of the anti-rejection drug! So there was 10 days of taking something that was not needed. On Wednesday, while Debbie was heaving up a storm in the lab, they asked her why whe was taking Zofran? Because it is an anti-nausea Deb says -- they say yes it is, but only if you are on a chemo regime -- if you are not getting chemo, it will make you sick!@@!?? List price for that drug was $4,000! They gave her adavan pills instead and that seems to be working much better for her nausea. Yesterday, I went to fill the rest of the new prescriptions and one CVS did not carry the specialty drug and told us where to go to get it. That CVS looked at the new scripts and said that they would not even fill the order because there is a very serious drug interaction between the four new scripts! They have to speak with Porter himself before they will dispense it to make sure HUP knows what will happen if Debbie takes it with the other drugs!@@!! Finally, Debbie is wearing fentanyl patches for pain management. Three boxes were dispensed with 5 systems in each @ list price of $800. On Friday, HUP decides to reduce the dosage from 2 patches @ 75 mcg = 150 mcg to a 100 mcg dosage. Of course, we cannot use some combination of the 75 mcg patches of which we have 2 full boxes, or even 75 instead of 100 over 2 days instead of 100 over 3 days?? -- we need new boxes of 100 mcg patches! And you wonder about the cost of healthcare?

Debbie is weaning herself off of the pain narcotics, her back pain is improving and she is taking small slow walks around the block twice a day. Debbie usually takes one of these jaunts and is ready for her bed. She is still sleeping 14-18 hours a day, she is very weak and needs the O2 at the slightest exertion. Trying to convince Debbie to eat now reminds me of Jester trying to get Christian to eat. It takes longer to convince her that she needs to eat, then to make a selection of what is there to eat then it takes for her to eat the small portion of whatever she does finally select and agree to eat. We made pizzas for the game yesterday and she did eat a few slices and she was able to cheer for the Irish win.

Debbie is slowly improving and her growing impatience with her slow progress further suggests to me that she is getting better. She wants to do more, but just can't which, in my view, is the improvement. For the first 2 weeks she did not want to do anything at all because of the back pain. Last night, she wanted to know who took care of her during the first 10 days she was home -- which underscores my point.

Monday will be the her 21st day home and I think she will be much better in another 21 days as soon as we get all of these drugs sorted out and her appetite improves. Today's objective is to get a recumbant bike for her to ride in the family room because it will be too cold for her to go outside soon.

Thanks for all of your well wishes and your continuing posts. We all feel your love and support.

Debbie sends her love to all.

Weekly Update

Dear Fods,

Sorry for not posting sooner, but there is simply no time. We are at HUP now and have been here for about 4 hours. We are down for blood and platelets and they ran out of platelets today -- so the platelet ration is about 50% of what Debbie should have received. Hopefully, it will get us through the weekend. Her WBC is up to 10.4 but platelets are very low @ 4. HBG is 9.4 and they are running a unit of blood now.

We were here all day on Tuesday getting blood and platelets and met with Porter about the back pain. Didn't learn anything about the pain then and Debbie has had an MRI of her spin on Thursday and today in Harleysville. We brought the films with us and maybe we will learn something later today when we see Dr. Porter, who is now 1 hour late.

Debbie is still in major back pain but is learning how to move to minimize the pain. She is eating and drinking just a little and it is a constant battle to get her to do both. She remains heavily medicated and sleeps most of the day and all of the night. She is asleep now in the chair, which helps her to pass the HUP time. While some of these hours of sleep are probably still related to her sleep deprivation, I think a lot of them are drug related now.

Thanks to all for your help. We have good coverage next week and Jessie will keep everyone posted on visiting needs. Debbie does need constant surveillance, but really cannot "visit" like she would like to. She cannot prepare any food and is not allowed to eat anything that was prepared outside of the house. She is typically up for 4 hours between 10 and 3, takes a nap and then is ready for a little dinner, bath, bandage change, port flush and bed by 8. Hopefully, someone will get a handle on the pain and she will be able to cut back on the meds. I think then that she will start to feel better.

Thanks for all of your cards and blogs. The cards she can read -- she is too sleepy to look at the computer.

Debbie sends her love to all.

P.S. After our long wait, Dr. Porter came into the room and told us that the MRI didn't show anything abnormal. That is good in that there is no serious structural damage to the spine nor is there an absess. The bad news is that there is not going to be any quick fix. As Dr. Porter said it, "you have a bad back." Like we did not know that already! Since Debbie slept most of yesterday -- they are going to adjust her pain medication so that she is not so tired all the time. Debbie will go back down again on Monday for more platelets. Nurse Edie from Roanoke will go with her for the day trip.

Rough Times!!

Dear Fods,

Sorry for not posting, but to say that we have had our hands full here is an absolute understatement. Debbie awoke on Friday morning in excruciating pain in her back and abdomen. She literally could not move out of bed. We loaded her up with dilaudid and after about 1/2 hour, the three T's were able to get her up. We were scheduled to be at HUP for blood and platelets anyway and we headed off about 1 hour later than expected, i.e., 7:30 AM.

We arrived at HUP at about 9:00 and Debbie was in so much pain that she was shaking and wretching. All of her friends helped to get her immediately into a room and administered IV dilaudid and adavan for the nausea. In 15-20 minutes, she was resting comfortably and waiting for the blood products to be delivered and administered -- which we did for the next 6 hours.

Because of the pain, Debbie was scheduled for an exploratory procedure with interventional radiology as soon as the blood products were completed. As a precaution, I admitted her to HUP in case they needed to operate on the gall bladder. IR completed their procedure and there was no problems with the gall bladder, the drainage tube or any of the tissue surrounding the gall bladder. The pain is simply not diagnosed. Dr. Porter wanted to have Debbie stay at HUP and they would do a full abdomenal work up, but Debbie simply refused to say. She knew that nothing would happen over the weekend and she does not want to do any more HUP time. The IR nurse gave us some more IV dilaudid and we wheeled ourselves out of there for the long ride home.

Debbie slept well on Friday night after her exhausting day, although the pain is constant. She is laying on her back in bed with different combinations of 4-5 pillows to try to stay comfortable. She tried to moderate her dilaudid intake yesterday and was in pain for most of the day. Today she met the "Pain Nazi!" We will stay ahead of the pain today.

While lying in bed this morning Debbie yelped and then there was a huge gush of blood from another round of problems from her lower regions. She bled through everything in 20 seconds. Not the way to start your day. We reloaded on the pain medication, showered, dressed and had some pancakes for breakfast with her morning pills. She was able to stay awake for a few hours and has been sleeping for the past 4 hours. She is stirring now and we will try to go for a short walk out to the mailbox.

With the slightest exertion, Debbie needs to take O2 which we have in tanks upstairs and a compressor in the kitchen. Debbie will need constant attention at home until she starts to improve, or she will need to be readmitted to HUP. Jester will meet us at HUP on Tuesday afternoon for the Porter visit and will stay the week to take care of Deb, if she is still at home. If she is home the following week, we will need to send out for the calvary.

Debbie sends her love to all.

I LOVE MY BED

Hello everyone,

I'm sorry we haven't posted sooner but the last few days have been a whirlwind. We did not get discharged from HUP until 11pm Monday evening. While my dad and I remained calm, mom was quite upset about this, as the hold up was two bags of blood that were ordered at 9am that day. The blood took FOREVER and we kept nagging whoever we could find to get things moving. As the day wore on, mom began to feel sick and achy (they quit giving her meds as they anticipated a discharge sooner than it ended up happening) and mom began to worry about coming home. She feared she may be coming down with a fever, but things held steady and we were able to wheel mom outta there with our trusty tank of oxygen close by.

Tuesday we had visits from the praxair man to set up our own compressor tank for oxygen, and from UPS who delivered some extra nupogen (sp?). Our sweet visiting nurse Kathy came by to go over the discharge instructions and change mom's dressings (in addition to the Hickman, there is a dressing and tube that need daily flushing for mom's gall bladder). Mom was discharged on fifteen different prescription medications which need to be taken at different times throughout the day. She remains on the Fentinol patches (150mcg/hr), Valium, and Dilaudid (prn now) to control her unbelievable back pain.

Wednesday we had to return to HUP for labs. Luckily mom slept in the car as it was a long ride down (1.5 hours). Once we got up to the clinic, they did not have mom's chart or orders handy so mom was parked in the hallway in her wheelchair. Looking at mom, they knew she needed a bed to rest in while we were waiting. Mom did indeed need platelets, so we ended up staying in the clinic from about 1030-300 yesterday. Mom slept through most of the visit, and I bummed around the hospital a bit looking for snacks mom might like to try. We got some great news yesterday - I actually responded to the NP with a WHAT?!?!?!? Mom's WBC has rebounded to 3.5 and her ANC is around 3000. There is no sign of the donor in mom's marrow, however, so we believe this is entirely mom's immune system. She is considered to be in remission.

Mom is VERY tired - we attribute this partially to the narcotics she is on and also the gross sleep deprivation she's encountered over these last nine weeks. She gets discouraged with how weak she is, but she is getting a little stronger each day. Mom is awake about six hours total throughout the day, the rest of the time she is in bed sleeping. She is in a lot of pain from her back - and needs to have an MRI - so too much movement sets the spasms off again. It is a delicate balance between rest and movement as too much rest is not great either. The doctor suggested starting with one trip up and down the stairs a day and a walk out to the mailbox. We've been able to do a walk out to the end of the property and two or three trips on the stairs each day.

We've been forcing mom to eat whatever sounds good to her - which is not much. Typically even after she requests something once she sees it she becomes nauseous again. Mom is very restricted with what is allowed to eat in her post-allogenic transplant diet. No leftovers, no take-out, no raw fruits or veggies, and no bakery items. We're aiming for just 1000 calories a day and I think we're making that. Mom needed to loose a lot of water weight and she has lost about 10 pounds now since Monday. Her feet are still two sizes bigger than normal, but I have seen some signs of ankles this morning! I imagine as she continues to move around she will lose a great deal more and she may begin to feel more comfortable eating. She's just been so full for so long.

Mom really has not been up for talking yet. She and I can't seem to finish even a brief conversation as she does not have the energy. I know this will get better with time. Please do not panic if you have called and have gotten the machine. Everything is OK, but it is going to take some time for mom to recover from the entire ordeal she has been through. Know that she's gotten your messages and will call you when she feels she can. She is so appreciative for everything you have all done to help her get home. I know you all want to help mom when you can, and believe me when I say that we will take you up on your generous offers. Every one of you are special to mom, and I know she looks forward to being able to visit with each of you very soon. My family and I cannot thank you enough for all of your love and support, for sharing your special talents, and for your prayers, cards, blogs, and calls. You all make up the most wonderful caring network and we are just so very grateful for that.

We love you all!

Manic Monday

Well FODs - I was hesitant to post until we were out the door but I'm afraid by that time it will be too late in the day. WE ARE BRINGING MOM HOME TONIGHT! First we have to get her tanked up with blood and platelets (two units of each), and meet with every department that exists at HUP for discharge instructions. I've been sitting here typing notes with each new visitor because it is A LOT to keep straight. Dad is here and is picking up all of mom's prescriptions (we estimated 15 in all) so we can meet with the pharmacist and go over dosing instructions for each one. They just delivered a tank of oxygen for us to bring home with us. Mom is trying to rest in between interruptions, but today has been a constant stream of visitors, along with the doctors - other well wishers (nurses, CNAs, fellows, etc) who have heard the wonderful news.

Mom will be returning to HUP on Mondays, Wednesdays, and Fridays for blood counts and transfusions as needed. Home care nurses I believe will be coming out on Tuesdays and Thursdays. It will be busy but mom will be HOME. I will be up for the remainder of the week to help with the transition home and transport Mom back and forth to HUP.

We will keep you posted on our progress at home - we can't thank you all enough for your love, support, blogs, cards, calls, and everything else that you do to make us feel so cared for and special.

We love you!

Dare I say it???

When I arrived at HUP around 1700 mom was up in her chair yapping with the nurse and the CNA and I thought, well this is something I haven't seen in awhile...It was ten minutes before I noticed they had disconnected her IV! She is completely pole-free! Now of course, they have to use the pole for blood products, which mom received today - and if she does not hold up her end of the bargain (read: EAT!) they will have to reconnect the TPN. For now she's enjoying her freedom.

We are cruising the hallways a bit, which is much less cumbersome without the pole, and all the nurses are marveling at how great mom looks. The walks wear her out and seem to bring on more spasms, although in the long run, the movement will help.

Earlier today, pain control decided to UP mom's Fentinol patch from 100 mcg/hr to 150
mcg/hr. Mom did not even remember them moving the patch and adding a new one - Dad, Joe and Alison were visiting during that time. Like all of our visits these last few days, Mom is fuzzy on who's been visiting and never remembers us leaving. She will call us about an hour after leaving asking us if we were there and if we said goodbye.

Mom continues to fall asleep mid-sentence and wakes herself up while gabbing in her sleep. I think they are still trying to tweak her pain medication - I hope they get it right soon. They want to keep her comfortable despite these killer back spasms that come along with a deep breath, and twist or turn, or just from lying still.

Dad packed up a lot of mom's room today in preparation for pending discharge. The abdominal ultrasound is scheduled for tomorrow AM - but again, this is HUP time. The oxygen is still handy for when mom needs a lift, but she is using it sparingly now. They plan to send a tank home for our comfort but we may not need it. We just finished a couple of laps and mom's pulsox (sp?) was 97 without the o2!

If the planets align tonight, and we can all do a little voodo dance, we may be able to sneak mom outta here late tomorrow or definitely on Tuesday. Things need to run smoothly tomorrow and we know how that can go. We're prepared either way but keeping our fingers crossed that tonight could be mom's last night at HUP. We are all ready for her to come home! Her counts are even rallying for a grand exit - ANC is 1100 and WBC is 1.4! We will keep you posted on how things play out tomorrow.

Lots of love to you all.