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.
Monday, March 15, 2010
Monday Afternoon
Bob was not quite as energetic today as yesterday, and actually had to give up on a walk 2 separate times after feeling too weak and dizzy to stand. Luckily the third time was the charm, and with the assistance of the Physical Therapist he managed
1 1/2 laps of the 10th floor, including a stop in the solarium for a look out at the beautiful Golden Gate. The only change in his meds since yesterday is the resumption of Prograf....we are wondering if even the small dose he's on again is making the difference in his strength? Docs will continue to keep a close watch on him, and may not release him tomorrow after all. We will go along with their recommendation, whatever it may be!
1 1/2 laps of the 10th floor, including a stop in the solarium for a look out at the beautiful Golden Gate. The only change in his meds since yesterday is the resumption of Prograf....we are wondering if even the small dose he's on again is making the difference in his strength? Docs will continue to keep a close watch on him, and may not release him tomorrow after all. We will go along with their recommendation, whatever it may be!
Walking Man
Bob exceeded everyone's expectations on Sunday by completing 2 entire laps of the
10th floor - two separate times! That's a third of a mile, quite an achievement after being so weak. He still needs the walker for support and a couple of people as back-up, but moved at quite a brisk clip once he was up and stable. His appetite is also more normal, so we don't have to force him to eat now. His weight is the lowest it's been since he was in high school, which is not a bad thing overall. But he needs to add muscle mass back in, now that he's dropped all the extra fluids from his pre-transplant days and the surgery.
We will be extending our stay near the hospital until March 28 now.....with things still so uncertain, it makes sense to stick close to all the docs and keep life as simple as possible for now. We are so appreciative of our loyal friends and family who are keeping our house (and kitty) company!
10th floor - two separate times! That's a third of a mile, quite an achievement after being so weak. He still needs the walker for support and a couple of people as back-up, but moved at quite a brisk clip once he was up and stable. His appetite is also more normal, so we don't have to force him to eat now. His weight is the lowest it's been since he was in high school, which is not a bad thing overall. But he needs to add muscle mass back in, now that he's dropped all the extra fluids from his pre-transplant days and the surgery.
We will be extending our stay near the hospital until March 28 now.....with things still so uncertain, it makes sense to stick close to all the docs and keep life as simple as possible for now. We are so appreciative of our loyal friends and family who are keeping our house (and kitty) company!
Sunday, March 14, 2010
Sunny Sunday
Sunday in the hospital does not make for much of a productive day, but we will make the most of the time to get Robert J up and walking as much as possible. His Prednisone dose has been drastically reduced from 15 mg on Wednesday to just 5 on Saturday, the minimum amount considered safe for him. His Prograf has also stopped for the past 24 hours since he has a very high level in his system still. His docs feel that the drugs are the biggest issue right now in preventing his healing and causing the severe muscle loss, so are working on getting the doses as low as possible without risking rejection.
His smallest wound from the surgery (where the heart bypass machine was attached) suddenly opened last night and began leaking so Dr. H the transplant surgeon popped in this morning and I got to see him at work, installing a single suture to close up the spot. Very impressive in-room surgical procedure, complete with sterile gloves and tools and an enviable sewing technique!
His brother spent several hours with him yesterday, and they walked an entire lap of the 10th floor, which was a great achievement. We'll try for 2 today. We don't expect any other doc visits today, but Monday will be busy with Physical Therapy sessions and a consult from the Urology team (fingers crossed for this one). There was some discussion this morning about releasing him from the hospital to a rehab facility, but we prefer going home and working together on the PT there - I can't imagine a rehab hospital being sanitary enough for a recent transplant patient. Just hope marriage counseling won't be needed with me posing as a PT therapist, but we will have Leslie's assistance also, as she begins her family leave from work this week to help us out.
His smallest wound from the surgery (where the heart bypass machine was attached) suddenly opened last night and began leaking so Dr. H the transplant surgeon popped in this morning and I got to see him at work, installing a single suture to close up the spot. Very impressive in-room surgical procedure, complete with sterile gloves and tools and an enviable sewing technique!
His brother spent several hours with him yesterday, and they walked an entire lap of the 10th floor, which was a great achievement. We'll try for 2 today. We don't expect any other doc visits today, but Monday will be busy with Physical Therapy sessions and a consult from the Urology team (fingers crossed for this one). There was some discussion this morning about releasing him from the hospital to a rehab facility, but we prefer going home and working together on the PT there - I can't imagine a rehab hospital being sanitary enough for a recent transplant patient. Just hope marriage counseling won't be needed with me posing as a PT therapist, but we will have Leslie's assistance also, as she begins her family leave from work this week to help us out.
Saturday, March 13, 2010
A Positive Direction Again
I just spoke with Robert J, and he reported that he was sitting in his chair and had eaten his breakfast - back on the French Toast wagon. His unsettled digestive system seemed better Friday evening, and sounds like it's better still today. I have never known RJ to be disinterested in food in our nearly 39 years together, so this was a strange couple of days.
He was checked out not once but 3 different times by the Neurology team yesterday. They asked lots of questions and put him through several motor skill exercises. They feel that his shakiness is mostly due to the Prograf he's taking to suppress his immune system. His recent problems with walking and standing have to do with dramatic muscle loss, probably from the high initial doses of Prednisone, complicated by some diabetic neuropathy that has developed over time. His fuzzy mental state Wed. afternoon and Thursday may have been due to medications - he passed all the tests they tried on him ( better than I would have). The plan is to get him up and moving more, work with the transplant docs to decrease the Prednisone as much as possible, and keep his nutritional intake substantial.
He also has a new device working for him, after the kidney transplan team finaly decided to use a wound vac machine on his leaky wound. It's a fairly new technology, where a special foam sponge is placed in the wound, along with a tube that's attached to a small batter-powered machine. The wound is then covered with a plastic-like material to seal it, and the leaky fluids are continually "vacuumed" out through the tube into a container in the machine. It's painless and silent, and the sponge only needs to be replaced every 3 or 4 days by the home health nurse.
We took a couple of short laps around his end of the 10th floor last evening, along with a nursing assistant, his walker, the wound vac machine and of course the latest Mr. Foley. A little cumbersome but once he got moving he did well. We will plan for lots more walks until he is strong enough to walk out of the hospital, possibly in a couple of days. He's looking forward to a visit from his brother today. His cell phone does not work in this room on the back side of the hospital, but he does have a direct line to his room - just let me know if you want that number. He would be happy to chat with friends.
He was checked out not once but 3 different times by the Neurology team yesterday. They asked lots of questions and put him through several motor skill exercises. They feel that his shakiness is mostly due to the Prograf he's taking to suppress his immune system. His recent problems with walking and standing have to do with dramatic muscle loss, probably from the high initial doses of Prednisone, complicated by some diabetic neuropathy that has developed over time. His fuzzy mental state Wed. afternoon and Thursday may have been due to medications - he passed all the tests they tried on him ( better than I would have). The plan is to get him up and moving more, work with the transplant docs to decrease the Prednisone as much as possible, and keep his nutritional intake substantial.
He also has a new device working for him, after the kidney transplan team finaly decided to use a wound vac machine on his leaky wound. It's a fairly new technology, where a special foam sponge is placed in the wound, along with a tube that's attached to a small batter-powered machine. The wound is then covered with a plastic-like material to seal it, and the leaky fluids are continually "vacuumed" out through the tube into a container in the machine. It's painless and silent, and the sponge only needs to be replaced every 3 or 4 days by the home health nurse.
We took a couple of short laps around his end of the 10th floor last evening, along with a nursing assistant, his walker, the wound vac machine and of course the latest Mr. Foley. A little cumbersome but once he got moving he did well. We will plan for lots more walks until he is strong enough to walk out of the hospital, possibly in a couple of days. He's looking forward to a visit from his brother today. His cell phone does not work in this room on the back side of the hospital, but he does have a direct line to his room - just let me know if you want that number. He would be happy to chat with friends.
Friday, March 12, 2010
Friday morning....a better day
I arrived at the hospital early today so I could be around for all the morning doctor rounds. Since I plan to spend the entire day and then some, I've set up shop to work as much as possible while he naps....he's tired of photos of himself in hospital garb, so I've added a picture of my portable office as it appears this week, just to add some color to this dry blog!
RJ is definitely feeling a bit better today, more alert, and with his appetite closer to normal. So far all the tests are coming back negative for infection, although the blood culture test is still pending.
Because his short-term memory seems a little fuzzy, the docs ordered a CT scan of his head, but nothing unusual was found (I know - that's just asking for a load of sarcastic one-liners but you'll all have to wait and torment him later). This could still be med side-effects of some sort. We are waiting for a visit from the Neurology docs just to do a more thorough check.
The kidney transplant surgeons finally checked in today on his wound, and are doing yet another test on the fluid, but it still shows no outward signs of infection. They are considering installing/using a "wound vac" on the site, to speed up the drainage and help get the healing moving along faster. That sounds like a very good idea to the heart folks, and me too - way less dressing changes needed then!
I am looking forward to the visit from the Physical Therapy tech to see what the plan is so I can continue doing the right stuff with him when he gets out of the hospital.
On the very positive side of things, his fourth heart biopsy showed zero rejection, so that's 4 for 4 - awesome! We will get past these bumps and potholes in the road to recovery one way or another.
Thursday, March 11, 2010
A Puzzling Day...
Robert J did get one physical therapy session today, which had him even more fatigued than he was in the morning. He seems increasingly lethargic and sleepy, to both me and the docs who know him well. He's even disinterested in eating and drinking, so we know he's way out of whack. This evening more blood was drawn to test for a possible intestinal kind of infection, although all his vital signs continue to be stable. I have been pushing him to keep drinking liquids to avoid dehydration, to the point of really annoying him. I considered his reaction a success in itself, since it got him fired up for the first time! We are waiting this evening for a visit from one of the kidney transplant docs who said he'd come by after he was done in the OR, but of course this may not happen tonight. Will hope for more information, especially positive, as we learn more on Friday.
Wednesday, March 10, 2010
Wednesday's Spin
This morning Bob had his 4th weekly heart biopsy. While he was still in the cardiac catheterization lab, his heart transplant surgeon came by to check on him, and made the decision along with the rest of his team to admit Bob to the hospital again. We have been telling them about his increasing unsteadiness and muscle weakness this week, and they feel think that he is suffering from muscle loss due to the steroids he's been on to prevent organ rejection. He is in need of some intense physical therapy, and to have his meds adjusted. We have been trying to work the PT appointments by the home health nurse into our schedule for 2 weeks, and other appointments have continually interferred. So now he will get focused attention along with efforts to turn the muscle deterioration process around. We are both relieved to have this opportunity - it has gotten really difficult this week to get him to and from the car and to appointments, never mind just getting from bed to getting dressed and around the apartment safely.
We have been assured by all the transplant team members that this week's challenges are just bumps in the road, not major obstacles to recovery. Everyone is very committed to getting a favorite patient back in tip-top shape. He was told again what excellent new organs he has, and they want him to be making the most of them by being active as soon as possible. We are in full agreement with this goal!
During this hospital stay the kidney team will take yet another look at his leaky incision to see if something new can be done to speed the healing process. We are hoping the Urology consult can take place in the hospital instead of waiting for a clinic appointment. We will be pushing to accomplish as much as possible while he is "captive" on the 10th floor again, so that his second month of recovery starts to go in a more positive direction. We know from everyone, including other transplant recipients we've met, that the first 6 months are the hardest and then things should smooth out for a while after that. We also know from our TRIO friends that there are no guarantees at any point that life will be perfect, and we are keeping that in mind also....still grateful he has this second chance at life without the frequent heart attacks and time-consuming dialysis treatments.
We have been assured by all the transplant team members that this week's challenges are just bumps in the road, not major obstacles to recovery. Everyone is very committed to getting a favorite patient back in tip-top shape. He was told again what excellent new organs he has, and they want him to be making the most of them by being active as soon as possible. We are in full agreement with this goal!
During this hospital stay the kidney team will take yet another look at his leaky incision to see if something new can be done to speed the healing process. We are hoping the Urology consult can take place in the hospital instead of waiting for a clinic appointment. We will be pushing to accomplish as much as possible while he is "captive" on the 10th floor again, so that his second month of recovery starts to go in a more positive direction. We know from everyone, including other transplant recipients we've met, that the first 6 months are the hardest and then things should smooth out for a while after that. We also know from our TRIO friends that there are no guarantees at any point that life will be perfect, and we are keeping that in mind also....still grateful he has this second chance at life without the frequent heart attacks and time-consuming dialysis treatments.
Tuesday, March 9, 2010
A Groundhog Kinda Day
Bob is not in the mood to blog at all today, so I have the honor of sharing the news that once again, his catheter was removed, and once again, another one took its place an hour later. Very discouraging.....seems like the years of dialysis and then lengthy catheter time is resulting in a referral to yet another department at UCSF: Urology.
Not sure where an extra appointment will be squeezed into our schedule, but we'll make room for it.
His muscle weakness was even worse today, and he traded in his walker for a wheelchair to get into and out of the clinic - both times we went. After the un-fun kidney transplant department visit, we had to return for another ultrasound of the kidney incision area, as the leakage is continuing. The rest of his stitches were removed and the rest of the incision has healed nicely....just the part left open to drain is still draining, and draining, and draining. The coordinator called with the news that he's very anemic also, which may be contributing to the weakness and fatigue, so he will be starting on injections of Procrit in addition to the iron pills that were prescribed.
Tomorrow morning Bob is to report at 6:30 am for his 4th heart biopsy, extra early so that his heart transplant surgeon can take a look at that kidney incision personally and get his take on the situation. Of course we know that the arrival time is no guarantee of when the biopsy will actually take place ( not that we're bitter or grumpy).
Last bit of news is that Bob will get checked over by the Gastro-Intestinal team next week to figure out why he's having pain so often when eating and swallowing.
This is certainly a rockier road (post-transplant) than we anticipated, although we never expected everything to be easy. Something in the middle would be preferable......will try for a more positive spin tomorrow.
Not sure where an extra appointment will be squeezed into our schedule, but we'll make room for it.
His muscle weakness was even worse today, and he traded in his walker for a wheelchair to get into and out of the clinic - both times we went. After the un-fun kidney transplant department visit, we had to return for another ultrasound of the kidney incision area, as the leakage is continuing. The rest of his stitches were removed and the rest of the incision has healed nicely....just the part left open to drain is still draining, and draining, and draining. The coordinator called with the news that he's very anemic also, which may be contributing to the weakness and fatigue, so he will be starting on injections of Procrit in addition to the iron pills that were prescribed.
Tomorrow morning Bob is to report at 6:30 am for his 4th heart biopsy, extra early so that his heart transplant surgeon can take a look at that kidney incision personally and get his take on the situation. Of course we know that the arrival time is no guarantee of when the biopsy will actually take place ( not that we're bitter or grumpy).
Last bit of news is that Bob will get checked over by the Gastro-Intestinal team next week to figure out why he's having pain so often when eating and swallowing.
This is certainly a rockier road (post-transplant) than we anticipated, although we never expected everything to be easy. Something in the middle would be preferable......will try for a more positive spin tomorrow.
Monday, March 8, 2010
After the weekend....
Sunday was a very relaxing day for us - I even got to try out the beautiful pool at our temporary "resort" for the first time. We enjoyed a visit from Dan and Carol and generally took things easy. Leslie came by on her way to visit a friend, and insisted on taking my laundry home to wash for me. I feel so indulged!
Today got off to a good start other than having to wait in the freezing and windy lab waiting area for over 40 minutes this morning. But we survived and returned home, Bob to a nap and me to my laptop for a couple of hours. When he woke up he was still feeling lots of pain, continuing later into the day than usual. He rallied (sort of) when Leslie and Chris arrived with fresh bagels and clean laundry, but was just not up to par. When our visiting nurse arrived he took advantage of the exam and just stayed in bed the rest of the afternoon. We had a scare when his temp rose above his normal by a few degrees, and were advised that we had to head for the E.D if it hit 100 - meaning the chance of infection was in the danger zone. I'm very pleased to report that it has come back down after dinner (and a lots of water).
He is now focusing on finishing his book that has been nearly done for a week now. Friends have been bringing more and more books, so he's motivated to move on to the next one! Tomorrow we hope the kidney transplant folks will finally take away Mr Foley, then we'll get a visit from the Physical Therapy person in the afternoon....that was delayed a week due to last week's unexpected hospitalization. Tomorrow will mark 4 weeks since the transplant, and we really hope that Bob's recovery from all the side effects picks up speed and he feels better soon.
Today got off to a good start other than having to wait in the freezing and windy lab waiting area for over 40 minutes this morning. But we survived and returned home, Bob to a nap and me to my laptop for a couple of hours. When he woke up he was still feeling lots of pain, continuing later into the day than usual. He rallied (sort of) when Leslie and Chris arrived with fresh bagels and clean laundry, but was just not up to par. When our visiting nurse arrived he took advantage of the exam and just stayed in bed the rest of the afternoon. We had a scare when his temp rose above his normal by a few degrees, and were advised that we had to head for the E.D if it hit 100 - meaning the chance of infection was in the danger zone. I'm very pleased to report that it has come back down after dinner (and a lots of water).
He is now focusing on finishing his book that has been nearly done for a week now. Friends have been bringing more and more books, so he's motivated to move on to the next one! Tomorrow we hope the kidney transplant folks will finally take away Mr Foley, then we'll get a visit from the Physical Therapy person in the afternoon....that was delayed a week due to last week's unexpected hospitalization. Tomorrow will mark 4 weeks since the transplant, and we really hope that Bob's recovery from all the side effects picks up speed and he feels better soon.
Sunday, March 7, 2010
Busy Saturday
We had such a busy social schedule Saturday that there was never a spare moment to update the blog - and we think that's a good thing! Took a road trip out 580 early in the day, and enjoyed a visit with Pat and Gary as they helped out with some essential home projects. The evening was a lively one with a visit from our Chaw kids and inlaws. They made dinner for us, and the kids had lots to tell about their just-completed vacation in France and Spain. Bob was gifted with an amazing Dale Jr. jacket that Allen bought on a recent trip to Charlotte. Chris also brought him an official hat from the Barcelona futbol club, purchased at last week's game in Barcelona.
On the medical front, Bob still has a lot of pain from the surgery itself, and is still wobbly on his feet, making his trusty walker from a couple of years ago necessary at times. But his rejection factor is still ZERO after nearly a month, and the kidney is busily doing its job, so the big picture is good. Hopefully he will do the next update in his very unique and entertaining style....after today's NASCAR race of course!
Friday, March 5, 2010
Me and Mr. Foley
Yesterday's heart transplant clinic was the usual mess running 2 hours behind by our appointment time of 9:5 am. Some drugs were changed, some added, and some terminated. We were not due to appear at the kidney clinic until 2:30 so we went home for lunch and returned.
The visit was aimed at controlling the pesky leakage from the kidney incision and then to remove my trusty friend, Mr. Foley the catheter. I have had Foley along for the ride 24/7 since the transplant surgery and was most anxious for his (painful) removal. It went better than expected and my next task was to produce some measurable proof that everything was working correctly. Sad to say it was not forthcoming. I asked "what next?" and was told they "would put another one in." "You're kidding, right?" I said as waves of fear swept over me like a tsunami. She was not kidding however and Mr. Foley's smaller but equally lethal younger brother was trotted out. It again turned out better than expected, but the younger Mr. Foley will be my constant companion until next Tuesday.
This morning we did lab work and so far nothing horrible has happened. For the last few days I have been waking up with fearsome body aches in my neck, shoulders. back and arms. That is what has prompted the drug changes the few days. I hope it works, I am fairly miserable. I would be thrilled to avoid ED this weekend as well.
Bob/Irv
The visit was aimed at controlling the pesky leakage from the kidney incision and then to remove my trusty friend, Mr. Foley the catheter. I have had Foley along for the ride 24/7 since the transplant surgery and was most anxious for his (painful) removal. It went better than expected and my next task was to produce some measurable proof that everything was working correctly. Sad to say it was not forthcoming. I asked "what next?" and was told they "would put another one in." "You're kidding, right?" I said as waves of fear swept over me like a tsunami. She was not kidding however and Mr. Foley's smaller but equally lethal younger brother was trotted out. It again turned out better than expected, but the younger Mr. Foley will be my constant companion until next Tuesday.
This morning we did lab work and so far nothing horrible has happened. For the last few days I have been waking up with fearsome body aches in my neck, shoulders. back and arms. That is what has prompted the drug changes the few days. I hope it works, I am fairly miserable. I would be thrilled to avoid ED this weekend as well.
Bob/Irv
Wednesday, March 3, 2010
Home before bedtime
I was able to collect Irving from the 9th floor around 6 pm this evening and take him home, along with his faithful foley catheter. Docs decided to start him on a new med this evening in advance of the catheter removal tomorrow afternoon in the transplant clinic office.
He is very tired after waking up at 4 this morning. His heart biopsy was done by 9 am - a nice change from the 3 pm time slot he got last week. He spent the day in his room reading and napping. The prograf (anti-rejection drug) is causing him to become increasingly shaky, apparently more than is normal. So that will be looked at in Thursday's heart transplant clinic visit.....the drug is essential, but the shaking and dropping things is very frustrating to him.
We were delighted to discover this afternoon that his second leaky spot had magically dried up, so now we just have to deal with the kidney incision. I was taught today how to change the dressing so that it will stay fairly dry and heal well. Very glad that no surgery was needed to deal with this situation, and that his new organs are performing beautifully. Just need to get past the little surgical annoyances and deal with the drug side effects, which will happen eventually!
He is very tired after waking up at 4 this morning. His heart biopsy was done by 9 am - a nice change from the 3 pm time slot he got last week. He spent the day in his room reading and napping. The prograf (anti-rejection drug) is causing him to become increasingly shaky, apparently more than is normal. So that will be looked at in Thursday's heart transplant clinic visit.....the drug is essential, but the shaking and dropping things is very frustrating to him.
We were delighted to discover this afternoon that his second leaky spot had magically dried up, so now we just have to deal with the kidney incision. I was taught today how to change the dressing so that it will stay fairly dry and heal well. Very glad that no surgery was needed to deal with this situation, and that his new organs are performing beautifully. Just need to get past the little surgical annoyances and deal with the drug side effects, which will happen eventually!
Tuesday, March 2, 2010
Positive trend
So far this hospital stay has not been bad. Initial tests on his leaking fluid showed no signs of infection, and verify that it's still just excess fluid from the tissues and/or lymph glands. Because of that information, the scan was cancelled. Docs removed some of the stitches from the kidney incision to see if that will speed up the drainage and end it sooner rather than later. They will continue to note how often the dressing needs to be changed as a way of seeing if the flow decreases.
He took 2 walks around the 9th floor today, and just for fun after dinner, tolerated his cardiologist removing all the staples from his chest incision. Big sigh of relief when that was finished!
Tomorrow he is scheduled for his 3rd weekly heart biopsy - and I get to be lazy and just show up after it's done. After that we have no idea of what's in store for him.....hoping for the delayed catheter removal to take place and then maybe home. But I refuse to make any predictions any more! Will report actual events as they happen tomorrow.
He took 2 walks around the 9th floor today, and just for fun after dinner, tolerated his cardiologist removing all the staples from his chest incision. Big sigh of relief when that was finished!
Tomorrow he is scheduled for his 3rd weekly heart biopsy - and I get to be lazy and just show up after it's done. After that we have no idea of what's in store for him.....hoping for the delayed catheter removal to take place and then maybe home. But I refuse to make any predictions any more! Will report actual events as they happen tomorrow.
Monday change of plans
Our mellow Monday took a dramatic turn just as the Physical Therapist arrived. We got a call from the Kidney Transplant department ordering us to pack a bag and come to the admitting office asap to get Bob checked in to the hospital. After all our questions and complaints about the excess fluid leakage, they finally decided to get agressive on checking it out.....just when I'd decided that I'd back off after 10 days of griping about it.
We got to the hospital before 5, and he was up on the 9th floor ( kidney and liver focus) by 6 pm, demanding dinner and ice and his insulin shot immediately. Not sure that was the best way to meet the staff his first time on the new floor, but that's his current technique. Maybe the new meds are causing a bit of a personality change at the moment? He was acting alarming like his late father!
Anyway, after all the rush, we are now waiting to hear when the Mag 3 scan (whatever that is) will be done to check on the source of all this fluid that continues to be produced. Could be that a surgical intervention will be needed. They are also testing samples of the fluid, just as they did in the ED back on the 21st, to make sure there is no sign of infection.
The upside, besides getting this resolved, is that he is relaxed and pretty content in a room with the best possible view of the City, enjoying his Robert Ludlum novel and being taken care of much more efficiently than at home with me. And I of course am ok with a little break from caregiving, taking advantage of this hopefully brief situation to catch up on phone calls, insurance paperwork and other essential bits of life.
He has his cell phone available. I will update the blog when I know something, as usual. We will work on a new theme song for him once we are done with the Cripple Creek experience!
We got to the hospital before 5, and he was up on the 9th floor ( kidney and liver focus) by 6 pm, demanding dinner and ice and his insulin shot immediately. Not sure that was the best way to meet the staff his first time on the new floor, but that's his current technique. Maybe the new meds are causing a bit of a personality change at the moment? He was acting alarming like his late father!
Anyway, after all the rush, we are now waiting to hear when the Mag 3 scan (whatever that is) will be done to check on the source of all this fluid that continues to be produced. Could be that a surgical intervention will be needed. They are also testing samples of the fluid, just as they did in the ED back on the 21st, to make sure there is no sign of infection.
The upside, besides getting this resolved, is that he is relaxed and pretty content in a room with the best possible view of the City, enjoying his Robert Ludlum novel and being taken care of much more efficiently than at home with me. And I of course am ok with a little break from caregiving, taking advantage of this hopefully brief situation to catch up on phone calls, insurance paperwork and other essential bits of life.
He has his cell phone available. I will update the blog when I know something, as usual. We will work on a new theme song for him once we are done with the Cripple Creek experience!
Monday, March 1, 2010
Out and About
Our week seems to be off to a good start, after a very restless night. That caused us to get up earlier than usual, which made the process of dressing, "pilling" and getting to the hospital for the morning lab work very easy. After a costume change when we returned home (...up on cripple creek...)he was willing to take a walk down the block to the corner market and back - a first! He is now enthusiastically napping.
This afternoon we will have a visit from a physical therapist to get RJ (and me) organized on an exercise program. Word from our transplant coordinator is that there is no plan to intervene on the leak situation, so our day seems to be simple. Tomorrow is a biggie: we report to the kidney transplant clinic at 9:30 for removal of RJ's catheter. He is looking forward to it being gone; not so much the removal itself.
I have already settled in at my desk (aka dining table) to actually spend more than 15 consecutive minutes working on behalf of my very patient clients....summer vacations are rapidly approaching and there are lots of details to finish up for many people. I am looking forward to a very productive afternoon!
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