FEATURE STORY....INSULIN DISASTER AVOIDED!
After running ridiculously high blood sugars yesterday Cheryl (bless her little pea-pickin' heart) allowed as how perhaps my insulin pens were possibly ineffective due to them being left various and sundry places for the last 3 weeks or so. Now don't get all excited we do keep our supply refrigerated but didja know insulin is good uncooled for 28 days after opening? "Tis true. I have of course been on the finest UCSF insulin for my entire latest stay so my personal stash has gone unused the whole time but with the imminent re-starting of my pump Cheryl has carried some around town for a while. The ones here at 2000 Post expired as well.
So began a late-evening hunt for effective medication; our main source CVS CarePlus on Castro was long-closed. Our nearest Walgreen's would not refill it since it was not their Rx and they couldn't even sell us any at Sucker Price since they did not have my type of insulin on hand. They would accept a verbal order from a Dr. so the very nice pharmacist called the on-call transplant doc for proper approval. He did not "feel comfortable" with this scenario so Cheryl phoned him up and made a beautifully eloquent pitch on my behalf that resulted in a much-appreciated approval. So it was back to Walgreen's with mere minutes to spare before the store closed. We were then able to enjoy a delicious dinner and try to chill out for the (short) evening.
WHAT WE DID (SO FAR) TODAY
This morning we had an appointment in San Leandro at Timberlake Medical Equipment to pick up my CPAP nighttime breathing apparatus. We were trained on usage and cleaning and then fitted for the mask. As you may recall this was a huge point in the hospital and my refusal to continue wearing the awful one they have over there has permanently endeared me (not!) to virtually every Respiratory Therapist at UCSF AND probably their moms as well. What else could I do at 2 am when the in-your-face RT demanded to know why I was not wearing one and I better put this suffocating monster on RIGHT NOW
We hustled out to beautiful Livermore to grab some good and correct insulin in anticipation of my visit with my own endocrinologist tomorrow morning in Concord. We also transferred from the Fit to the Odyssey to enable us to move out on Saturday. Both kids will be joining us for that and we thank Dan and Carol as well as My Brubbie for the offers of help and haulin' vehicles.
We are therefore comfortably home at 2000 Post ahead of the rain and hoping for no unexpected adventures tonight.
Bob/Irv
Wednesday, March 31, 2010
Monday, March 29, 2010
And....He's Outta There!
I'm delighted to announce that Leslie and I were able to take Robert J home today! The three of us enjoyed hamburgers for dinner in an actual restaurant - first meal out for him since early January! He delegated the blogging to me this evening, as he is a little fatigued from the unusual activities of getting dressed in clothes, getting in and out of the car, re-organizing his extensive pill inventory and being out in public for a short time. Everyone on the 10th floor at the hospital wished him well, and told him they don't want to see him again any time soon. We second that sentiment. We will be in and out of the clinic and lab the rest of the week, but also have some appointments outside of UCSF as we begin "re-entry" into our previous life. As my mother would likely have said at this point: "Wheeeee!"
Quick Update
We are being told that Dad will be going home (to the SF apt) today! He's been retaining fluid since his procedure Saturday to stop the leakage on his wound but the docs still think he'll be ok to leave. Dad will update later with more details...
Sunday, March 28, 2010
A Policy Statement
A MOMENT OF SERIOUS STUFF
Recently it was brought to my attention that several caregivers here at UCSF have learned the address of this blog and have become readers. Please allow me to point out that while all the events described in these posts are 100% true they are not intended by any means to embarrass, criticize, or berate the fine folks here at UCSF Medical Center. ALL of them have combined to give me the most incredible opportunity anyone could ever even imagine; getting a gift of life. Yes there have been the occasional rude ("MR. MOSS, why are you not wearing a breathing mask?"), slow (" I'll be right back I promise") arrogant, ineffective and unhappy moments (most associated with French toast or Mr. Foley) but these are few and far between and do provide opportunities for the wit and sarcasm for which I was (previously) well-known. OK so now I have that out there.
MORE NOOZ FROM THE MORE NOOZROOM
Yesterday despite no breakfast I happily went to the OR on schedule at noon. After 4 out of 5 deep breaths on the Magic Mask I was in serious la-la land. At some time (I am told about 4 hours) a huge ruckus involving my somewhat sketchy next-bed neighbor partially woke me about half-way to fully awake. Turned out this rather scruffy "gentleman" was neither aware nor particular interested in where he was or why he was here. Natural under these circumstances but expressed poorly and loudly, we were all finally spared the entertainment when his drugs finally took affect. My surgeon then appeared to explain the procedure and results; the heart wound was sealed and dry with a 50/50 chance of continued success in this configuration. There might be swelling or future leakage that would need to be dealt with by
other methods.
AND WHAT OF MR.FOLEY??
As pre-shadowed by my night nurse I was apprehensive about my potential encounter with Mr. Foley. Of course I expected he would be placed after sedation, and as I went to la-la land (see above) I was blissfully unaware of any sensation involving my dreaded arch-enemy. In post-op I was frankly scared to look but finally with Cheryl's gentle attentions it was determined that there was no evidence of Mr. Foley anywhere. Imagine my unbridled joy and relief. I was told by my docs this morning that it is highly unlikely that Mr.F. went unused and is way more likely he was placed and removed during my sleepy time by a kind and merciful surgeon. So no major leakage since then but for some strange reason I am experiencing large daily weight gains which are attributed to fluid again. At the current time there is no instant fix on this but for sure I will NOT be leaving today.
AS FOR NOW
I am cooling my jets writing this blog for you gentle readers while hopelessly waiting for the rain-delayed start of the NASCAR race at Martinsville, VA. Just moments ago NASCAR pulled the plug and postponed the event until tomorrow morning. Not to worry, I have plenty to do and I understand from Cheryl (who is making a trip to Livermore today) that Leslie is planning a visit sometime today. So it is all good.
All for now....speak at you later.
Bob/Irv
Recently it was brought to my attention that several caregivers here at UCSF have learned the address of this blog and have become readers. Please allow me to point out that while all the events described in these posts are 100% true they are not intended by any means to embarrass, criticize, or berate the fine folks here at UCSF Medical Center. ALL of them have combined to give me the most incredible opportunity anyone could ever even imagine; getting a gift of life. Yes there have been the occasional rude ("MR. MOSS, why are you not wearing a breathing mask?"), slow (" I'll be right back I promise") arrogant, ineffective and unhappy moments (most associated with French toast or Mr. Foley) but these are few and far between and do provide opportunities for the wit and sarcasm for which I was (previously) well-known. OK so now I have that out there.
MORE NOOZ FROM THE MORE NOOZROOM
Yesterday despite no breakfast I happily went to the OR on schedule at noon. After 4 out of 5 deep breaths on the Magic Mask I was in serious la-la land. At some time (I am told about 4 hours) a huge ruckus involving my somewhat sketchy next-bed neighbor partially woke me about half-way to fully awake. Turned out this rather scruffy "gentleman" was neither aware nor particular interested in where he was or why he was here. Natural under these circumstances but expressed poorly and loudly, we were all finally spared the entertainment when his drugs finally took affect. My surgeon then appeared to explain the procedure and results; the heart wound was sealed and dry with a 50/50 chance of continued success in this configuration. There might be swelling or future leakage that would need to be dealt with by
other methods.
AND WHAT OF MR.FOLEY??
As pre-shadowed by my night nurse I was apprehensive about my potential encounter with Mr. Foley. Of course I expected he would be placed after sedation, and as I went to la-la land (see above) I was blissfully unaware of any sensation involving my dreaded arch-enemy. In post-op I was frankly scared to look but finally with Cheryl's gentle attentions it was determined that there was no evidence of Mr. Foley anywhere. Imagine my unbridled joy and relief. I was told by my docs this morning that it is highly unlikely that Mr.F. went unused and is way more likely he was placed and removed during my sleepy time by a kind and merciful surgeon. So no major leakage since then but for some strange reason I am experiencing large daily weight gains which are attributed to fluid again. At the current time there is no instant fix on this but for sure I will NOT be leaving today.
AS FOR NOW
I am cooling my jets writing this blog for you gentle readers while hopelessly waiting for the rain-delayed start of the NASCAR race at Martinsville, VA. Just moments ago NASCAR pulled the plug and postponed the event until tomorrow morning. Not to worry, I have plenty to do and I understand from Cheryl (who is making a trip to Livermore today) that Leslie is planning a visit sometime today. So it is all good.
All for now....speak at you later.
Bob/Irv
Friday, March 26, 2010
Breaking Nooz
As of this moment I am "scheduled" with Dr. H for surgery tomorrow at noon. This is pending availability of a suitable OR. So it is no French toast for me tomorrow and a likely and bitter reunion with Mr. Foley. More to come.
Bob/Irv
Bob/Irv
Thursday, March 25, 2010
Random Ness-with Gratitude to Linsey Fluken
I hardly know where to start anymore. I went ape when my blog of Tuesday disappeared into UCSF Cyberspace. I have been unable to organize my thoughts since that evening and with all the admittedly bizarre events of the last couple of days I have still not returned to my full senses. Now this is not to be confused with my well-publicized hallunications of several weeks ago (more on these some other time) but I beg your indulgence as I put down thoughts under Linsey's terminology "Random Ness".
ENOUGH ALREADY WITH ALL THIS NPO ANGST
I am frankly sick to death of myself constantly ragging about NPO (for you curious types "Nadie Per Orem", Latin for "Nothing By Mouth") every time a procedure is even tentatively scheduled. You would think after 5 or 6 years of this I would grow up already and get some sort of life. Why can't I get over myself every time I have to go without food or drink for 8 or 10 or 20 hours? Because I am a real-life card-carrying MOSS fer cryin' out loud, that's why! I get antsy when I am hungry, the more hungry the more antsy and generally objectionable I become. The most serious exceptions to my status of Model Patient have been prompted by an extended period of brutal and unnatural NPO. I was NPO today for 2 procedures that never happened only escaping true misery thanks to a truly sympathetic attending physician who pulled the plug on one of them. Inability to locate the surgeon canceled the other (yes I know he has done several lung transplants this week already so he deserved to be MIA) so I dodged that bullet too. But oh by the way I am NPO at midnight tonight for the same procedure at some time or other tomorrow. So EXCUUUUUUSE ME while I look forward to yet another lonely morning without my French toast.
REASONS I MAY NO LONGER BE THE MODEL PATIENT
The obvious big reason is the one described above....but in addition:
The other day the Diabetes Educator (DE for our purposes) told me I was the best patient she has seen at handling an insulin pump. Since I have been off my beloved pump since Feb. 9 I was anxious to resume. She gave me some estimated new insulin ratios and said she would write orders to get me restarted. So I did. Upon returning from a procedure in Interventional Radiology I was greeted by a huddle of obviously frightened nurses. Appears my nurse went berserko over me hooking up my pump since she and her colleagues were just as unfamiliar with insulin pumps as 99% of all the nurses at all of the many hospitals I have visited over the years.
I pointed out my instructions from the DE as well as the fact that at virtually every visit to UCSF for many years I was allowed to manage my own program. I was now viewed with fear and loathing as a suddenly Mad Guy Who Used to Be So Nice. Don't forget I was going onto Hour 9 of NPO. Imagine my chagrin when the DE announced she had said "when you get home" which I either never heard ("a man hears what he wants to hear and disregards the rest"-Simon and Garfunkel, Bridge Over Troubled Water) or I was having another hallucination relapse. I gingerly removed my pump and went happily back to their regimen.
AND THE ULTIMATE WORST POSSIBLE NEWS I COULD GET
My nurse this evening casually informed me that for tomorrow's surgical procedure even though fairly minor would necessitate the return of my hated arch-enemy MR. FREAKIN' FOLEY!!! NO PLEASE! OK KEEP YOUR BLASTED FRENCH TOAST! ANYTHING BUT MR. FOLEY!
Stay tuned for more cliff-hanging, maybe tomorrow if I make it through a session with Mr. Foley!
Bob/Irv
ENOUGH ALREADY WITH ALL THIS NPO ANGST
I am frankly sick to death of myself constantly ragging about NPO (for you curious types "Nadie Per Orem", Latin for "Nothing By Mouth") every time a procedure is even tentatively scheduled. You would think after 5 or 6 years of this I would grow up already and get some sort of life. Why can't I get over myself every time I have to go without food or drink for 8 or 10 or 20 hours? Because I am a real-life card-carrying MOSS fer cryin' out loud, that's why! I get antsy when I am hungry, the more hungry the more antsy and generally objectionable I become. The most serious exceptions to my status of Model Patient have been prompted by an extended period of brutal and unnatural NPO. I was NPO today for 2 procedures that never happened only escaping true misery thanks to a truly sympathetic attending physician who pulled the plug on one of them. Inability to locate the surgeon canceled the other (yes I know he has done several lung transplants this week already so he deserved to be MIA) so I dodged that bullet too. But oh by the way I am NPO at midnight tonight for the same procedure at some time or other tomorrow. So EXCUUUUUUSE ME while I look forward to yet another lonely morning without my French toast.
REASONS I MAY NO LONGER BE THE MODEL PATIENT
The obvious big reason is the one described above....but in addition:
The other day the Diabetes Educator (DE for our purposes) told me I was the best patient she has seen at handling an insulin pump. Since I have been off my beloved pump since Feb. 9 I was anxious to resume. She gave me some estimated new insulin ratios and said she would write orders to get me restarted. So I did. Upon returning from a procedure in Interventional Radiology I was greeted by a huddle of obviously frightened nurses. Appears my nurse went berserko over me hooking up my pump since she and her colleagues were just as unfamiliar with insulin pumps as 99% of all the nurses at all of the many hospitals I have visited over the years.
I pointed out my instructions from the DE as well as the fact that at virtually every visit to UCSF for many years I was allowed to manage my own program. I was now viewed with fear and loathing as a suddenly Mad Guy Who Used to Be So Nice. Don't forget I was going onto Hour 9 of NPO. Imagine my chagrin when the DE announced she had said "when you get home" which I either never heard ("a man hears what he wants to hear and disregards the rest"-Simon and Garfunkel, Bridge Over Troubled Water) or I was having another hallucination relapse. I gingerly removed my pump and went happily back to their regimen.
AND THE ULTIMATE WORST POSSIBLE NEWS I COULD GET
My nurse this evening casually informed me that for tomorrow's surgical procedure even though fairly minor would necessitate the return of my hated arch-enemy MR. FREAKIN' FOLEY!!! NO PLEASE! OK KEEP YOUR BLASTED FRENCH TOAST! ANYTHING BUT MR. FOLEY!
Stay tuned for more cliff-hanging, maybe tomorrow if I make it through a session with Mr. Foley!
Bob/Irv
Wednesday, March 24, 2010
More bumps in the road
Hate to say it after all the positive trends lately, but the last 2 days have been less than ideal. The important stuff ( good heart and kidney) continues to be excellent, but one thing after another is keeping Robert J stuck in the hospital way longer than anyone wanted or expected. He continues to feel better every day, but has spent most of yesterday and again today "NPO" - without food or liquid, in anticipation of a couple of procedures. Yesterday it was for an ultrasound and fluid extraction dealing with his newest leaking wound, which didn't take place until late in the afternoon. Today the team started him off the same way in hopes that Dr. H would be available to operate on that wound and get it closed up so he can leave the hospital without risk of additional infection. Unfortunately the good doctor was unavailable all day, after performing yet another transplant last night. At 4 today RJ finally got permission to eat his first meal of the day, a stale lunch. He just now called to tell me that he will be NPO again after midnight tonight. Maybe they will try and get him into the OR again tomorrow. He is also scheduled back into the Interventional Radiology procedure room to get a PIC line installed so he can continue to get IV antibiotics outside of the hospital. The in-room procedure for that today was not successful, due to blockages in his chest area ( probably the darned leads from his former pacemaker that weren't able to be removed with the pacemaker unit a couple of weeks ago).
To add insult to injury, the laptop in his room is not getting along with UCSF's wifi connections, so after 45 minutes of composing another exciting post last night, he found that nothing got saved and his story disappeared. Today was even worse, so I got no work done while visiting him (which I count on doing at least part of the 6 to 8 hours I'm with him each day), and he was not able to play on Facebook or work on the blog. Just call us Mr. and Mrs. Cranky-Pants.....nothing terrible is happening, but these little obstacles seem to be going on and on and on. Cross your fingers that he will have internet access soon, as well as better news about getting out. It won't happen Thursday now, and the closer we get to the weekend, the slimmer the chances for getting released. Enough grumpies from me - happier days must be on the way!
To add insult to injury, the laptop in his room is not getting along with UCSF's wifi connections, so after 45 minutes of composing another exciting post last night, he found that nothing got saved and his story disappeared. Today was even worse, so I got no work done while visiting him (which I count on doing at least part of the 6 to 8 hours I'm with him each day), and he was not able to play on Facebook or work on the blog. Just call us Mr. and Mrs. Cranky-Pants.....nothing terrible is happening, but these little obstacles seem to be going on and on and on. Cross your fingers that he will have internet access soon, as well as better news about getting out. It won't happen Thursday now, and the closer we get to the weekend, the slimmer the chances for getting released. Enough grumpies from me - happier days must be on the way!
Tuesday, March 23, 2010
Can't top that last one......
I hardly dare to write anything today, after the rave reviews Robert J got with the last post. As several friends noted "Bob's back"! That sense of humor has been severely lacking in recent years, but we can all celebrate its return!
In the meantime, I still feel compelled to update the blog frequently. As everyone has probably already figured out, I provide the quantity, while Bob/Irv supplies the quality.
He continues to enjoy life sans Mr. Foley, and is grateful that the annoying bed alarm has been removed. His stability and strength are increasing daily....yesterday he graduated to walking with a cane instead of his walker, and today walked without any kind of support! I heard he looked quite stylish in his loafers and argyle socks showing below his hospital gown, and he felt much more steady in real shoes.(I was not here for the actual walk, otherwise you can be sure there would be a photo with this post).
A second infection has been found in his system, so he is getting 2 different antibiotics via IV. In spite of this, there is talk of releasing him on Thursday, equipped with a pic line (type of IV access) that can be used for more IV drugs at home. We have been asked to stick around SF for another week, to be close by in case we get loaded up with a bunch of extra clinic appointments. I think he's actually glad about this, since this first 6 weeks have not given us the "life in the City" experience we had imagined. Maybe next week. In the meantime we will continue to impose on friends and family to keep our real house occupied, with much gratitude.
In the meantime, I still feel compelled to update the blog frequently. As everyone has probably already figured out, I provide the quantity, while Bob/Irv supplies the quality.
He continues to enjoy life sans Mr. Foley, and is grateful that the annoying bed alarm has been removed. His stability and strength are increasing daily....yesterday he graduated to walking with a cane instead of his walker, and today walked without any kind of support! I heard he looked quite stylish in his loafers and argyle socks showing below his hospital gown, and he felt much more steady in real shoes.(I was not here for the actual walk, otherwise you can be sure there would be a photo with this post).
A second infection has been found in his system, so he is getting 2 different antibiotics via IV. In spite of this, there is talk of releasing him on Thursday, equipped with a pic line (type of IV access) that can be used for more IV drugs at home. We have been asked to stick around SF for another week, to be close by in case we get loaded up with a bunch of extra clinic appointments. I think he's actually glad about this, since this first 6 weeks have not given us the "life in the City" experience we had imagined. Maybe next week. In the meantime we will continue to impose on friends and family to keep our real house occupied, with much gratitude.
Sunday, March 21, 2010
Mr. Foley-A Farewell
Recently this blog has featured my continuing adventures with my arch-enemy Mr. Foley the ever- present catheter. He has been a constant and unwelcome guest since the day of my transplant, Feb 9. Efforts to relieve him of his duties have proven unsuccessful on three occasions. That is, up till now. In order for this to happen I had to prove I could function on my own to the satisfaction of the physicians. This did not happen so Mr. Foley (actually a carefully-created clone of the original) was returned to me. But a major breakthrough on Saturday allowed me sufficient time to achieve my goal. Oh Happy Day. I bid an unkind farewell to Mr. Foley.
I happily went to bed knowing that my new-found independence might be interrupted frequently during the night, and sure enough 1 hour after retiring I felt The Call. As I rolled off the bed all Hell broke loose when suddenly an alarm went off playing "Take Me Out to the Ballgame" (I am not making this up) at maximum Wrigley Field volume. As I stood thunderstruck with my bedside relief container at the ready all of the nurses scrambled to full battle mode and soon I had a bright light on over me with about six wide-eyed ladies staring at my private areas expectantly waiting for what, I did not know.
Seems due to some unauthorized movements without sufficient supervision I was placed on this bed alarm to monitor my clandestine activities. Doing without the services of Mr. Foley I had to take matters into my own hands, so to speak. And somewhere out there in Medical Equipment Land some genius at a marketing meeting said "hey, why don't we program this puppy to play "Take Me Out to the Ballgame" when it alarms? They are gonna freakin' LOVE it"! And for further entertainment this whole scenario was repeated every hour on the hour until breakfast arrived. Evidently my bladder was so thrilled with my new kidney that after 3 years of inactivity it was having some fun just imitating a SFFD Fire Engine or something.
So it was hard to top that one on Sunday. Had a visit with the Infectious Disease doc who looked at the blood cultures as indicating a very minor infection which may have been introduced during the initial surgery. Nothing to trip about. Transplant docs informed they would keep me until at least Wed when I am scheduled for a biopsy.
So that is it up to the moment.
Bob/Irv
I happily went to bed knowing that my new-found independence might be interrupted frequently during the night, and sure enough 1 hour after retiring I felt The Call. As I rolled off the bed all Hell broke loose when suddenly an alarm went off playing "Take Me Out to the Ballgame" (I am not making this up) at maximum Wrigley Field volume. As I stood thunderstruck with my bedside relief container at the ready all of the nurses scrambled to full battle mode and soon I had a bright light on over me with about six wide-eyed ladies staring at my private areas expectantly waiting for what, I did not know.
Seems due to some unauthorized movements without sufficient supervision I was placed on this bed alarm to monitor my clandestine activities. Doing without the services of Mr. Foley I had to take matters into my own hands, so to speak. And somewhere out there in Medical Equipment Land some genius at a marketing meeting said "hey, why don't we program this puppy to play "Take Me Out to the Ballgame" when it alarms? They are gonna freakin' LOVE it"! And for further entertainment this whole scenario was repeated every hour on the hour until breakfast arrived. Evidently my bladder was so thrilled with my new kidney that after 3 years of inactivity it was having some fun just imitating a SFFD Fire Engine or something.
So it was hard to top that one on Sunday. Had a visit with the Infectious Disease doc who looked at the blood cultures as indicating a very minor infection which may have been introduced during the initial surgery. Nothing to trip about. Transplant docs informed they would keep me until at least Wed when I am scheduled for a biopsy.
So that is it up to the moment.
Bob/Irv
Spring is Sprung
Saturday was a pretty terrific day for the Moss family, with a visit from Dan and Carol, both of our kids and wonderful progress for Robert J in walking, energy and overall condition. He wants to do the latest update so I'll leave that to him......I just have guilt if we skip a day of reporting in, for those (2 or 3?) of you hanging on every word! So, more details later from our hero.
Friday, March 19, 2010
Friday's Puzzle
Robert J continues to improve in alertness and continues walking for rehab. But today the cardiologists told us his latest blood cultures showed an infection ion his system. It will be another 48 hours before the actual species of the infection is identified, but they have already begun treatment with IV drug therapy. Although his spirits are considerably better than earlier in the week, he said today " I just can't seem to catch a break". No argument there. He will definitely remain in the hospital through the weekend, with no forecasts for next week's plan from the docs. The weather is so unusually beautiful for San Francisco this time of year, and he's stuck on the 10th floor with windows that don't open and a fan to cool things off - crazy!
Other updates: he still has the Foley catheter in, and the only news there is that it will be removed and replaced today. I still have not heard from the Urology Dept about a visit, and ask the transplant team every day what's going on with that. His trusty wound vacuum pump is working away on the leaky kidney incision, and the new leak is still dripping away through numerous gauze dressings. We are trying to get him a CPAP machine for his sleep apnea, something that's been on the list to do for several months now (but continually sidelined by repeated hospitalizations). They tried a generic hospital machine and mask on him last night, with very poor results. I've now been given a local company to contact that might be able to supply him with a custom-fitted mask, perhaps even delivered to the hospital. Worth a try.
He's got plenty to read, but would be happy to have visitors and/or phone calls. Please call or email me for his hospital room phone number, since he can't get cell reception here. Have a happy weekend everyone, and get out and enjoy that sunshine for us!
Other updates: he still has the Foley catheter in, and the only news there is that it will be removed and replaced today. I still have not heard from the Urology Dept about a visit, and ask the transplant team every day what's going on with that. His trusty wound vacuum pump is working away on the leaky kidney incision, and the new leak is still dripping away through numerous gauze dressings. We are trying to get him a CPAP machine for his sleep apnea, something that's been on the list to do for several months now (but continually sidelined by repeated hospitalizations). They tried a generic hospital machine and mask on him last night, with very poor results. I've now been given a local company to contact that might be able to supply him with a custom-fitted mask, perhaps even delivered to the hospital. Worth a try.
He's got plenty to read, but would be happy to have visitors and/or phone calls. Please call or email me for his hospital room phone number, since he can't get cell reception here. Have a happy weekend everyone, and get out and enjoy that sunshine for us!
Thursday, March 18, 2010
Progress!
Robert J is showing definite signs of improvement today! He enjoyed an early morning visit from Jeff and Sue, and has been busy with visiting doctors since then. One of his long-time prescription dosages from before the transplant was cut in half, so maybe that made a difference or he was improving anyway? Hard to say, but we're happy to see him more bright-eyed and alert. He took a lap around the floor this morning, and only stopped at one lap because he had an entourage of docs waiting at his door to see him.
On the annoying side of things is his return to Cripple Creek - as in springing a leak. The most recent leak is really going strong, and there is talk of applying another wound vac dressing on that one too. He's also needing to increase his fluid intake to counteract all the fluid leaving his body - there seems no danger of fluid retention at this point in his recovery!
Finally, we want to acknowledge all our friends and family who are also dealing with major health issues, some short term and some long term, and even the loss of dear family members. We do think of all of them often, even though the blog is "all about us".....we know we are not the only ones with challenges. So forgive us for being so self-absorbed, but we have not forgotten the rest of you and are hopeful for everyone to return to good health sooner or later.
On the annoying side of things is his return to Cripple Creek - as in springing a leak. The most recent leak is really going strong, and there is talk of applying another wound vac dressing on that one too. He's also needing to increase his fluid intake to counteract all the fluid leaving his body - there seems no danger of fluid retention at this point in his recovery!
Finally, we want to acknowledge all our friends and family who are also dealing with major health issues, some short term and some long term, and even the loss of dear family members. We do think of all of them often, even though the blog is "all about us".....we know we are not the only ones with challenges. So forgive us for being so self-absorbed, but we have not forgotten the rest of you and are hopeful for everyone to return to good health sooner or later.
Wednesday, March 17, 2010
Trying Some Different Things
We were visited this afternoon by the docs who are working tirelessly to find a solution to Dad's shakes and "flailly-ness." His Prograf has been scaled back significantly but hasn't alleviated the symptoms. They are keeping a close eye on his electrolytes and scanning his blood for possible infections. They've also begun some vitamins that he may be deficient in. The next step will be to start removing non-essential medications one by one to see if there is a change. There are so many variables that the docs just don't know what it might be. There are endless combinations of drug interactions that could be causing these unpleasant side effects, and of course everyone's body reacts differently to the recovery process and medications. Dad continues to be a favorite patient here on the 10th floor and everyone wants to see him get better and go home so he can start using his new organs!
Wednesday, waiting.....
I think I've restored my positive attitude today.....enjoyed a nice dinner with our Berkeley kids last night and gave my hubby some quality time without me hovering over him! He told me on the phone this morning that he's already been on a walk with the physical therapist, and even tried out the "practice" stairs. He did better going up than down, but that's still progress. We are waiting to hear what the transplant team thinks about sending him home, but both agree it may still be too soon for him to get around safely. He is looking forward to a visit from Leslie today as well as her wonderful mother-in-law. Phone calls are welcomed also.
Tuesday, March 16, 2010
Five Weeks After the Transplant
Bob / Irving / Robert J said today that he can't believe his transplant is already 5 weeks old. And neither of us imagined that he'd be back in the hospital (7th day today, this time) and barely able to get out of a chair and walk at this point. We are both frustrated, as are the doctors and transplant team, with this ongoing weakness that has taken over in the past 2 weeks. It's nothing life-threatening, but still unusual at this point, and we so look forward to some resolution. He was able to take a partial lap of the 10th floor today with the help of the Physical Therapist, but earlier in the day was not able to get more than a few steps with one of his cardiologists by his side - so they know first-hand what's going on, if not why. We know everyone will celebrate with us when we make it past this hurdle.
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