Settling in.

Hi all, A quick note to say that Bob is fine. The transfer went well. He thought it was long at a little over an hour and said "they took the long way ". I refrained from telling him that there is no short or quick way!! The staff so far has been very friendly and kind. There are a few nurses who remember Bob from when he was the md. there, and surprisingly did not seem to hold it against him!! No, no, just kidding! One of them did joke though that sometimes he could be grumpy!! No!!! Really?? Ha. Anyway, he seemed even stronger already today and almost got his legs back up into the bed by himself. He stood with a walker so I could fix the bed(some things never change!!) and do pm care, so I'm encouraged. PT will be in tomorrow I'm told which surprised me. I thought it would have to wait until Monday. So overall Im feeling hopeful and relieved....big sighhhhh! So all those prayers are making their way Heavenward! Thank you. All our love, Bob and Mo

Good-bye HUP! Hello St. Mary's Manor

Quick post so nobody goes to Philly....Bob is on his way to St.Mary's in Lansdale, and now I am too. More later! Mo

Written on FB 11/28/12 11pm

Sorry I haven't written....was so tired yesterday and super busy today. Bob is doing a little better. He was quite dopey over the weekend and really groggy Monday. But he had ativan a couple times and I think it was too much, combined with his compromised lungs...his CO2 was up to 72! I almost had an MI myself when i heard that. Anyway, he was quite alert today and really happy to have Matt with him. Matt did a great job yesterday, so I could get a break and tonight he's doing some PC repairs or at least the diagnosing so far. Back to Bob. It's now believed that he has a fungal infection, most likely in his lungs. Luckily he has been on anti-fungals since he was started on steroids. There's also a small hemothorax in the rt. lung...maybe a result of last months bronch? A chest tube was thought to be in order and Bob flatly refused....been there, done that, not doing it again!! The edema has continued to improve and lasix is now daily. Cardiology has been reconsulted to re-evaluate and an echo was done today which hasn't changed. So we may be getting to a "good as we're going to get " point and will be talking about moving on somewhere closer to home for rehab. I hope so cuz this trek is fraying my nerves, what few i have left! Today I had another 80 minute ride just to go the 10 miles on the NE Ext.!!! Aaarrgghhh! Anywho, that's all for now. Matt will be here til Friday evening, so we'll be goibg down tomorrow. Good night all. Xo, Mo Above is an update I wrote on fb last night that I copied and pasted. Matt and I are here. Bob remains alert. Just had yogurt and juice. And he is off oxygen alltogether right now and maintaining a sat of 96-97%. Hallelujah!! His lungs must be improving. Also noticed that his neck veins are quite flat today...that's a good thing! So still improving. Waiting on the social worker to talk about transfer. Oh! And if anyone is out there from the days of Debs' blogging, you might remember the pastoral care minister Kava S., one of the most wonderful human beings on the planet...well I ran into her yesterday and it really gave me a lift just to talk with her and talk at her....a lot!! Haha! Anyway, she set Bob up with a spiritual minister and is looking into getting someone to do Reikki to help him relax w/o ativan. Okay, I better get back to the room. Don't want to miss anyone. All our love, Bob and Mo

11/26/12 Monday, Monday, can't trust that day!

Hey everybody, Well, the pleural fluid is a big negative...no infection, no malignancy, no nothing ....which is good.So I hoped we could talk about rehab, but another CT of the chest has been ordered. Now we wait for that to be compared to the last and go from there. This has all been sanctioned by Dr.Luger, who(m)? I just talked to. Clinically, Bob's improved ...fluid still dec reasing and his oxygen sat is holding at 96% on 2lpm. I just don't know about the darn chest. It has me a little freaked, but as Bob said 2 weeks ago "how are you going to treat another cancer? I won't tolerate surgery, chemo or radiation, so why do tests." He is agreeable to the CT today however, so we're holding again until its done. Now I have a request...anybody out there in bloggerworld or FBland available to visit tomorrow, preferably around lunch or dinner time, to help Bob with his meals. Not that he's eating much but he's too shaky and sleepy to help himself. He generally has a bottle of ensure, soup and dessert, which is usually pudding. So it wouldn't have to be a long visit. I haven't had a full day at home in over a week, and need to pay bills, clean, etc. So call me or fb message me. I hope to be getting my new phone by fed-ex today.Actually, it just dawned on me That Matt is coming up from Tenn.tonight and hr will be with Bob tomorrow...my pea brain!!! I can't retain info right now! So Bob's really looking forward to that! That about wraps it up here. Just waiting for transport to come for Bob's 1pm.CT scan...it's 1:30 right now! All our thanks, Bob and Mo

Sunday 11/25/12

Well, now I can't connect to Hups wi-fi, so Im on the family room pc here...deja vu all over again, as Yogi Berra would say. Bob's pretty much the same...maybe a little sleepier, and hasnt had any ativan, and fingers, toes and knees are mottled despite his sat being 99% on 4lpm. Thats worrisome to this old nurse, but it may just be cuz he's cold. His edema is soooooo much less. His skin is the most pliable Ive felt in weeks. He actually has wrinkles in it. So, he's napping and the recliner next to his bed is looking good. I'll stay til after supper, then home. Back bright and early cuz I don't want to miss Dr. Luger. If there's nothing in the pleural fluid that requires treatment here, then I really want to get him home or to an ECF if we think he can improve some more. So that's it. Thanks everybody who writes and those who read and pray and are sending us your good thoughts and prayers. We feel your love and it lifts us up and carries me along when I'm weary. And take my word for it...I am weary today. Deep breath and back to my guy. All our love Bob and Mo

HUP DAY 14, NOV. 24 2012

Dear friends and family, We are still waiting for the results of testing done on Bobs pleural fluid. They should be back on Mon. In the meantime he is up and down.Right now he's sleeping a lot (mostly, I think cuz he got ativan yesterday). But his weight is 149#, he was in a negative fluid balance of 2 liters yesterday and his sat was 97% after the exertion of using the commode.That being said I'm going to ask for stepped up prayers and good vibes sent our way, since Bobs attending hem-onc told me today that he believes Bob's chance of a full recovery "is low, though he's a fighter and we are going to give hin every chance ". And that is what Bob and I discussed this am.He still is going to fight, but if anything untoward happens he will not be resuscitated. Okay, gotta go help my man with supper. All our love, Bob and Mo

Sleepover at HUP!

Finally got some freakin' lasix IV after jumping up and down. Bob's sats are only 93-94% on 6lpm and he needs the help of 2 people to stand. Tuesday he was walking with a walker and his sat on 2lpm was 98-100%. Tried telling this to the hem-onc resident who is still worried about cr.So then they did a cxr which i said isnt going to be helpful cuz this is rt.sided heart failure. They(first resident called for reinforcements) said he might have pneumonia! Sweet Jesus! Bob finally said give me the lasix. They finally ordered it to shut us up I think. Anyway, I'm spending the night til an actual cardiologist sees him tomorrow. Oh! Btw the cxr showed no change!

Happy Thanksgiving!

Was hoping to write that Bob And I were enjoying a nice Thanksgiving together here at hup ....unfortunately I cant do that. He is more sob today and desats down to 90% w/ exertion. Legs are bigger and tighter as are arms, with the rt.being much larger,and his neck and head veins look like pipes. I knew this was going to happen when he left the cardiac service. He hasnt been weighed or had accurate I & O's done either!!!! And then the nurse says his lasix was decreased to once a day!!! Hello!!!!!! Get the dr.in here please....she(resident) doesnt think he looks any different than yesterday. Here in Rhoads we are all worried about respiratory infections...viral, fungal, tb and he's been swabbed and cultured up the whazoo and been put on contact isolation!!! What BS. Need I say I'm sitting here sans mask and gloves! He doesnt have coxsacchie or rsv or tb. He has constrictive pericarditis which took over a week to get under control and they let him slide backwards to that point in 2 days. Do i sound pissed?? Also his knees and toes are cold and purple....they've been looking for a doppler for an hour. Anyway I was told that Bobs creatinine is 1.4 today so thats why lasix decreased. I told her that Dr.Hirshfield Bobs cardiologist told us on Sunday that they would let cr.go as high as 1.6 since Bob was more confortable with less fluid and they'd keep him on dry side. Then she says it could also be d/t bactrim which ID said could be stopped. So stop it and give him the damn lasix!! Mother of God! I may sleep here tonight! Tomorrow Interventional radiology is supposed to se Bob so they can decide if they can get samples of pleural fluid from effusions which are apparently worse. Also had new nodules on latest ct scan but no on wants to bronch him. Off to flog a nurse or dr....jk!!! Not really! Off to make sure he's getting more lasix and the damn doppler check of his purple toes! With loving thanks for all of you, Bob and Mo

New Room

Hi, Quick note to say Bob is now in Rhoads room 6012. New phone 215-615-8151. Back on Dr. Lugers service. More later....my ride home took 2 1/2 hours!!!! Was anyone else stuck on Ne ext.,blue route or Schuylkill???? I wanted to SCREAMMMM!!!! OK Feel better. Later, Mo P.S. Don't miss todays first post....still want input. Ty

Input please!!!

Hi all, Right now I'm sitting with Bob and we're in a holding pattern. (So what else is new here at hup).As usual it's a different story today. Now I'm told that Bob's latest Chest CT shows new nodules and a bronch is in order. Cardiology feels that Bob will tolerate this procedure from their standpoint, and that it would be helpful to know if we're dealing with infection, gvhd, or a tumor. Pulmonary is worried about the constrictive pericarditis rearing its ugly head during the procedure and making Bob crump.(that's my term not theirs). Bob says are we going to find anything that we can treat?? And Aldo says he's doing nothing w/o Dr.Lugers'input! Smart man I married!! So there is a call into her, but we know what a busy woman she is,so I'll hope we hear by tomorrow. In the meantime the social worker was in with a list of ECFs(extended care facilities), as Bob is weak as a kitten and definitely will needs rehab. So that's where I need help. In order from closest to us to farthest geographically, we have...Brittany Pointe, Peter Becker, Meadowood, St.Mary's Manor, Rockhill Mennonite, Dock Meadows. Please write with any info that might help us make an informed decision. We're most interested in tge PT /Rehab depts. Also if you can highly recommend a place I don't have listed thats good too. Well just got lots of info from our poker pal, Shirley. Will close now. Looking forward to hearing from you all. Bob sends his thanks for the calls and blogs and prayers. We love you all, Bob and Mo

Dear friends and family, First Bob has a new room. He's in 1075A and new phone is 215-615-4543. Calls and visitors welcome as this looks like we're in for the long haul. Pulmonary will be weighing in tomorrow as to whether or not they think Bob's lungs are up to him having the pericardiectomy and stripping which, apparently he needs as evidenced by the high pressures found during the cath. This is a big surgery and they would have to break Bob's sternum a la open heart surgery. Bob, I think is tending towards sticking with medical treatment, no matter what pulmonary says. And I agree. He has been through 9 years of misery and kept such a brave face and mind and heart, but this would be asking too much. So tomorrow Bob will talk with Dr. Hirshfeld who is a calm and gentle man who has won my respect in our few, brief meetings. I think they will continue with the aggressive diuretics and steroids etc. My hope is that if the constrictive pericarditis was a result of the gvhd, then the steroids will knock the gvh down and that too will decrease the edema. Always hoping, hoping, hoping. Thank you Santa and Sam for visiting today and an early thanks to Bill for going in tomorrow. I will work tomorrow and be there (hup) Tuesday.I think I will be eating HUP turkey with Bob on Thursday! Yum!! Thank you Fred and Terry for writing. Who else is out there?? Why not write a comment so I can pass it on to Bob. I sai d to someone yesterday that this is the first time in 9 years that I've heard Bob sound defeated and honestly, it scares the hell out of me. So please keep the prayers coming. I know hearing from you all helps me keep going so I can do the same for Bob. All our love and thanks, Bob and Mo

Day 6 11/16/12

Happy Friday all, Well, it seems Bob is a riddle wrapped in a puzzle etc.etc. The cardio.is still not convinced all Bobs fluid retention is from the constrictive pericarditis.And there's concern about his continued difficulty breathing, so he's finally bought a pulmonary consult and had a CT of his chest today. They want to compare it to his last one from August soI had to drive over to our local hospital to pickup a cd and report of the study and will take it down tomorrow. I'm still having a little trouble believing this couldnt be sent electronically.!!! I had just gotten home from Penn and the grocery store when they called! So off I went. I want to thank our great friends,Y and L who took were going down today to visit Bob so I hitched a ride.Thanks you guys for the goodies For Bob too. Also thanks to Santa who came bearing gifts of Kind fruit and nut bars and a yogurt parfait for Bob. We all shared some laughs and it's always great to have company. Now onto Bob. He got a respite from the diuretics today b/c his bp was down and his creatinine was up....only to 1.2,but it was 0.8 And he only got the lasix once yesterday bc of going for the cath, and his weight was up 4 #'s today. His sugar is up from the steroids as is his appetite, and he's getting covered with insulin. He's comfortable at rest but still very DOE.HE finally has an air mattress on his bed and he had a good nap after we left. His room phone is 215-615- 4551 if any close friends or family want to call. He's also up for company if anyones up for Penn. Just give one of us a call to verify he's not scheduled for some test or other. So thats all for now. Thank you for all your support. Please continue with those prayers and love to all. All our thanks and prayers, Bob and Mo

HUP Day 5

Hi folks, Sorry I haven't written on the blog, but our pc keeps crashing so I'm on my kindle. Anyway, Bob underwent the cardiac cath today and did fine. He was really sleepy after getting versed and fentanyl, but I managed to keep him awake long enough to eat soup, yogurt and pudding, and take all his meds. His ribs were sore from positioning and his butt from the table. He had to lay flat for 6 hours after the cath, so I'm glad he was sleepy otherwise he would have been miserable. And the results are pretty much as expected...the pressures measured in the heart are all high, reflective of constrictive pericarditis. No surgical intervention is planned. The aggressive diuretics and steroids will continue. And they'll evaluate daily. And now off to bed. This wss a much longer day than anticipated, a's the cath was scheduled for 9a and actually started at 2p, probly cuz i was there by 845am. So good night all. Thank you again for your prayers and support. All our love, Bob and Mo

Hi all, Well, the cath has been postponed until at least Wed. It was decided that aggressive diuretics were needed to get rid of more fluid. In addifion to lasix, Bob's also getting diamox,bc he had a metabolic alkalosis.The hem-onc fellow was also in and told Bob steroids will be started too (60mg. Prednisone daily).His breathing is better at rest but he still gets winded. really easily.I just spoke to him a little while ago and he's reading and dozing.So thats about all. I'm going to work tomorrow a.and my s-i-l Santa will be visiting our guy. A big thank you to Bill and Anne for coming down today, treating me to lunch and Bob to a yogurt parfait and cookie. We are so darn blessed!!! So good night a d God bless all of you. Love, Bob and Mo P.S.If you co.ment anonymously please sign your name, so I can tell Bob who's writing. Thank you!

11/12/12 HUP, Day2

Good morning all,

Okay, so Bob is safely ensconced in room 1083 in the Founder's Pavilion. The trip took an hour as there was a lot of traffic d/t the Eagles game....why people are still going to the games is beyond me, but that's a whole other blog! He sounded strong when I spoke with him and actually said he was "great" and his room was "great". That may be for my benefit though, cuz he knows how I fret when I'm not there.

They gave him more lasix on arrival and the cardiac cath was scheduled for this am. They wouldn't get any more specific than that, but we all know about HUP time. At any rate I'm going to leave as soon as I've gotten myself together and most of the morning rush is over. Hopefully by this evening when I write again, we'll have lots more answers. Have a good Monday everyone. I'll be back. Bob wanted me to send his love and thanks for all the prayers and support you've been sending us.

Love,
Bob and Mo

Sunday 11/11/12

This was my update from yesterday 11/10/12

Well folks, I'm sitting in Bob's ICU room at Abington Lansdale and we finally know why he's had so much edema (from his toes to his waist) for the past month. He has constrictive pericarditis caused by his GVHD. In English the sac around the heart has become thickened and tight and will not allow the heart to contract and pump properly so the fluid backs up into the body. Bob had his usual checkup...

at HUP this week and his heme-onc. Dr. Luger knew right away what it most likely was. A cardiac MRI yesterday confirmed it, but before the treatment (mega steroids) could be started, Bob became sob and lightheaded andI called nine one one (the flippin numbers on my kindle won't work!!!!!) this am. So, he's getting stabilized here with oxygen and diuretics, and will be transferred to Hup for a cardiac cath on Monday. If the pericarditis is as severe as they believe it to be, Bob will have a pericardectomy/pericardial stripping on Tuesday. I am now praying that this can be done somehow with a scope and he won't need his "chest cracked open ".....a phrase that, even after thirty-three years as a nurse, still makes me shiver! So of course asking for all your prayers again too. After all we've been thru this so very hard to take. And this man o' mine is some warrior, but I think the nearly two hours laying flat for the MRI just caught up with him. Well that's enuf for now. He's sleeping and I will be leaving soon. Last night was a long night and of course this has been a long day. Thank you in advance for storming the heavens with this one.

 

Will try and update daily from here.

All our love,

Bob and Mo
 

The adventure continues

I've been writing on Facebook about Bobs' latest setback. I'm going to copy and paste to get everyone up to speed, then will try and write every day once he's at HUP.

First entry was from Oct. 19th
Requesting prayers for my Bob. He's in the hospital with pneumonia. Thanking God that he has normal bone marrow and functioning immune system.
Oct. 21st

Bob is coming along, but it's slow going. Still quite sob with exertion. He had another cxr yesterday, but we didn't hear the results yet. The other worrisome thing is that he has pitting edema from feet to thighs...so far echo is normal and venous doppler is neg. for clots. He had lasix twice and thats helped some, but its still bad. At any rate he's FINALLY where he needs to be...physician heal ...

thyself...if you get my drift. I'm hoping for pulmonary rehab and PT also so we can get him fine tuned. He hopes to be D/C'd tomorrow. Thank you again for all the prayers, good vibes and well-wishes you've all sent.As I've said so many times before we'd be nowhere w/o our friends and family. Thank you too to Sam and Santa for the visit yesterday..sorry I missed you. Did you bring the yummy Lindt chocolates? And also to our friends Lee and Yvonne, who when Bob said he had a hankering for root beer, went out and got him a 12 pack. And last but not least, thanks to Meg for visiting with M and M, who brought "Bobby" 2 freshly picked apples and lots of cheer! Love and thanks to all!

Later that day,

 

Well, I jinxed Bob. Not only won't he be dc'd tomorrow, but he's scheduled for a bronch. The cxr wasn't improved, sputum is negative, and the thought is that this is aspiration pneumonia. Bobs had frequent coughing spells with a lot of sinus drainage that he has always attributed to gvhd. Now he's remembering choking on a pill a few weeks ago. At any rate it will all be investigated tomorrow. Le...

gs are still looking terrible too. All the lasix did was drop his bp. But he's in good spirits, God love him and sends his thanks and his best to all of you. Thank you to my 2 blonde friends for the visit and the soft pretzels...darn I'm ticked that I missed you. And to brother Bill and sis Anne, I'm Thrilled I did see you! So good night and have a great Monday!

 

Oct 22nd.

Nothing to report...bronch was cancelled as schedule was too full!! Of course they couldn't decide that until 2p when he's already missed 2 meals....grrrrrr! Sorry for the long medical posts. I'm used to blogging and writing like that in the blog. Supposed to be done by 10:30a
Tomorrow .....we'll see. Thanks to all for the good thoughts, posts and prayers. It means so much to us. Love from me and himself :)

 

Oct 23rd

 

Nothing to report...bronch was cancelled as schedule was too full!! Of course they couldn't decide that until 2p when he's already missed 2 meals....grrrrrr! Sorry for the long medical posts. I'm used to blogging and writing like that in the blog. Supposed to be done by 10:30a
Tomorrow .....we'll see. Thanks to all for the good thoughts, posts and prayers. It means so much to us. Love from me and himself :)

Oct.24th

 

Unfortunately the news is not great today. At about 230p Bob became tachycardic with heartrate of 160 and bp in 80s. Ekg was probly atrial but too regular to tell...and yes he did interpret his own ekg before the tech left, right down to the rbbb and flattened q wave. Yep, he's still got it!! Anyway they whisked him down to telem. But he broke before they could treat it. He's now on digoxin. Since...

his systolic bp never tops 100 and his lungs are crappy he cant get beta blockers. And the cxr was worse today which surprised me b/c of all the mucus they got out during the bronch. So now our favorite ID doctor is on the case and she started Bob on flagyl! And I'll beg forgiveness for the medical details, but I know there are inquiring medical minds out there who want them. Oh and he's scheduled for the swallowing study tomorrow. So room phone is now 215-361-4758. Bob's resting now after eating a bowl of potato -leek soup I made this am, and I'm going to go home now and get some myself. Please keep those prayers and good vibes coming. Hopefully tomorrow will be a better day.

Oct. 25th

Your prayers are being heard....Bob is coming home tomorrow. Too exhausted to write more. Just got home and have to be back at work at 630am. Thank you again. YOU all are amazing! Love and prayers from us both.

Oct28th

Sorry I haven't updated in a few days. Bob came home Friday afternoon, thanks to our dear and good friends, the Aranos, as Bob insisted I go to work. I've started a new job at Hillmont GI and the staff there could not be more understanding and supportive. But I digress. Bob is okay but just okay. He's on O2 and is quite SOB with exertion, and his legs are still quite red and edematous...it's not c...

ellulitis though. Having said all that, he feels good and he thinks he's doing swell. I guess as a nurse, I'd like him to be "all better", with all problems solved and breathing easily. Of course I'd really like it if he'd never had this damn disesase, but I can't turn back time. Anyway, we are fine and hope we don't lose power and the O2 compressor cuz I think the big tank will only last about 6 hours. Has everyone battened your hatches? Take care. Stay safe and dry the next few days. Sending a big thank you hug to all for your prayers and support.