baltimore update #3
I spoke with Colleen on the phone late this afternoon. She said she had more meetings than tests today, which sounded to me like a mini-version of our Pittsburgh experience. (Which is not a bad thing, not a bad thing at all.) She has yet another A+ medical team surrounding her, for which we are deeply grateful. She'll be at Johns Hopkins at least until Saturday. How is she? Still climbing Everest, with the help of experienced sherpas, in the face of unpredictable snowstorms and risk of avalanche.
Thursday, February 28, 2013
baltimore update #2
Leslie's notes from yesterday, abridged & edited by Mignon
Colleen asked Mathai about the "small window" that Pittsburgh concluded she has remaining within which to get new lungs. He said, "It's a window, not a time limit. But you are very sick. We don't want to mess around. We want to be aggressive, to get you tuned up, to get Pittsburgh to say Yes."
Leslie's notes from yesterday, abridged & edited by Mignon
Once again, when
you seek out the best medical care, you are amazed at the dedication of those whose paths you cross.
Early Wednesday morning, Colleen checked into the endoscopy unit to be prepped for her PEG or percutaneous endoscopic gastronomy. The prep nurse, whom we liked a lot, told Colleen she had to ask her some private questions. “Is there any chance you could be pregnant?” she whispered, which gave Colleen a welcome chuckle. Some of the young nurses explained this to us later, "Around here it's like working at a bar – we have to card everyone."
Early Wednesday morning, Colleen checked into the endoscopy unit to be prepped for her PEG or percutaneous endoscopic gastronomy. The prep nurse, whom we liked a lot, told Colleen she had to ask her some private questions. “Is there any chance you could be pregnant?” she whispered, which gave Colleen a welcome chuckle. Some of the young nurses explained this to us later, "Around here it's like working at a bar – we have to card everyone."
The
anesthesiologist came to Colleen's bedside next, described the upcoming surgery, and told Colleen that she and her assistant would be at Col's side during the entire procedure. She informed us that the sedation would be "light," which sounded scary.
Then HE came
in -- Dr. Patrick Okolo. (Comment from Mignon: Do I detect a swoon? He was a striking African-American man, correct?) Straightaway, he cracked jokes about New Jersey and about being Catholic. He
told Colleen how Dr. Mathai had called him late last night at an hour when the voice on the other end of the line should have been a woman's (although he allowed he's been married for 17 years). He and Col then had a long chat. He told her he was Catholic and added something about having to do a penance for Dr. Mathai. Spontaneously, Col administered a mock blessing. It was a light moment. Okala went on to tell us he'd been born in Dublin and then his father, also a physician, moved the family to London, where Okala grew up and went to Catholic boarding school. "An all boys school?" Colleen asked him. Of course, he said. Another light moment. He told us that his sister is a nun and that he would have become a priest himself but liked girls too much. Then, getting down to business, so to speak, he went on to say that he is quick and thorough as a surgeon and that he's done hundreds of these procedures before, if not a thousand. We got the strong impression he is the top Johns Hopkins doc for this operation.
He, too, addressed the level of awakeness that Colleen could expect during the surgery, probably more than she would like, he said. When Colleen's eyes began tearing up, he said, "Stop that, now. You don't want to make a brown-skinned man blush, do you?" He put his huge arms and coiled biceps around Col and touched his head to hers. "You most likely will remember nothing afterward. I run marathons," he said. "And I'll be seeing you running your marathon in New Jersey."
I swear, it was
as if God's hands themselves had entered the room.
At this point, I can only say that everyone is drawn to Col.
At this point, I can only say that everyone is drawn to Col.
. . .
While in recovery, Colleen was visited by the kidney specialist, Dr. Derek Fine, and also a Fellow in his department. They informed Colleen about the tests planned for getting a good sense of the condition of her kidneys, one of Pittsburgh's primary concerns before green-lighting her for a lung transplant. They told Colleen they might also want to do a kidney biopsy, which would give the most definitive results. This is the time when it's beneficial to overdo testing, Dr. Fine said. This is life-and-death. What this told us, quite clearly, is that the Johns Hopkins doctors involved in Colleen's case would like to prove, beyond the shadow of a doubt, that her kidneys--along with all the rest--are sufficiently strong enough to undergo lung transplant surgery. They want to declare with confidence to Pittsburgh that she's ready.
. . .
On our way back to Col's room in the "old" part of the hospital, Colleen relates to our two women escorts the story of Henrietta Lacks and the medical theft of her cells years ago at Johns Hopkins in the very same "old" section where Colleen is staying. Instinctively, our voices became hushed as we discussed this obscure crime that had remained hidden for decades. One of the women said she was going to download the book onto her Kindle tomorrow. She's off tomorrow and might just read
all day. This gal, kind of big-sized, has now become Col’s friend and defender. Don’t let anyone mess with Col or she’ll take
care of them, she said. It was something.
Dr. Mathai
stopped in close to four o'clock in the afternoon to say hello. He asked about Col's experience with the anesthesia during the morning surgery. He asked about her pain level on a scale of 1 to 10. She said 6. To me she looked an 8 for
sure. He stayed on for a while and talked about things medical and otherwise. He told Colleen that he and Dr. McDyer, at Pittsburgh, grew up together in Cherry Hill. Colleen was able to tell Dr. Mathai that she is scared. He said he would be more concerned if she wasn't scared. They talked some more about the realities of lung transplants--decidedly more complex than other organ transplants--and the expected and unexpected challenges involved, as well as the possible joy of breathing and living more fully again.
Colleen asked Mathai about the "small window" that Pittsburgh concluded she has remaining within which to get new lungs. He said, "It's a window, not a time limit. But you are very sick. We don't want to mess around. We want to be aggressive, to get you tuned up, to get Pittsburgh to say Yes."
Somehow we got to talking about his bow tie for a moment and then Colleen said to him, "Thanks for taking me on." He said, "I don’t
usually do this. But I will be here with you."
. . .
Colleen tells me she's proactively asking for pain medication, which is unlike her. She's addressing her level of pain because she wants to be able to get up and walk a few steps every hour. Now, there's our champion.
. . .
Colleen tells me she's proactively asking for pain medication, which is unlike her. She's addressing her level of pain because she wants to be able to get up and walk a few steps every hour. Now, there's our champion.
Wednesday, February 27, 2013
baltimore update 1
Colleen is staying in the hospital at Johns Hopkins tonight...and possibly for the next few nights too...my impression from our sister Leslie who stayed with Col until about 5:00 this afternoon and called on her drive back to Ocean City, and my impression directly from Colleen on the phone a bit later are these:
1. "NutriNellie" was successfully implanted this morning...Col was given a twilight amnesiac during the surgery so she has no memory of the procedure itself but, post-surgery, has been experiencing pain for which she's receiving pain medication... When I talked with her around 7:00 this evening, Colleen was feeling apprehensive, ie, just plain scared, about the first use of NN, scheduled for 8:00 tonight... Every cell in me wanted to be there with her...
2. Her medical caregivers there--her primary pulmonologist, Dr. Mathai, and a kidney specialist new to Colleen and whose name I don't yet know--seem to be rallying around her with energy and focus and wasting no time in doing all that needs to be done to help Colleen be unconditionally accepted as soon as possible onto Pittsburgh's lung transplant list...Kidney function tests began this afternoon and will continue tomorrow...the possibility of a kidney biopsy has been raised in order to determine whether or not the scleroderma has begun to affect the kidneys...pray not...
3. Dr. Mathai spent up-close-and-personal time with Colleen today and told her he would be "with her"...the whole way...Baltimore, Pittsburgh, and all points in between...
Leslie took copious medical notes, which she will turn over as soon as she finishes typing them up. Sean, our youngest brother, is standing by to drive down to Baltimore to pick up Colleen as soon as she's released...Friday? Saturday?...the kidney doctor mentioned he may want Colleen back down in Baltimore next week...
more to come
PS: As of now, NN is planned for nighttime only, with regular eating during the day
PSS: Per Leslie, the GI surgeon who implanted Col's NN was also extraordinarily kind and attentive.
Colleen is staying in the hospital at Johns Hopkins tonight...and possibly for the next few nights too...my impression from our sister Leslie who stayed with Col until about 5:00 this afternoon and called on her drive back to Ocean City, and my impression directly from Colleen on the phone a bit later are these:
1. "NutriNellie" was successfully implanted this morning...Col was given a twilight amnesiac during the surgery so she has no memory of the procedure itself but, post-surgery, has been experiencing pain for which she's receiving pain medication... When I talked with her around 7:00 this evening, Colleen was feeling apprehensive, ie, just plain scared, about the first use of NN, scheduled for 8:00 tonight... Every cell in me wanted to be there with her...
2. Her medical caregivers there--her primary pulmonologist, Dr. Mathai, and a kidney specialist new to Colleen and whose name I don't yet know--seem to be rallying around her with energy and focus and wasting no time in doing all that needs to be done to help Colleen be unconditionally accepted as soon as possible onto Pittsburgh's lung transplant list...Kidney function tests began this afternoon and will continue tomorrow...the possibility of a kidney biopsy has been raised in order to determine whether or not the scleroderma has begun to affect the kidneys...pray not...
3. Dr. Mathai spent up-close-and-personal time with Colleen today and told her he would be "with her"...the whole way...Baltimore, Pittsburgh, and all points in between...
Leslie took copious medical notes, which she will turn over as soon as she finishes typing them up. Sean, our youngest brother, is standing by to drive down to Baltimore to pick up Colleen as soon as she's released...Friday? Saturday?...the kidney doctor mentioned he may want Colleen back down in Baltimore next week...
more to come
PS: As of now, NN is planned for nighttime only, with regular eating during the day
PSS: Per Leslie, the GI surgeon who implanted Col's NN was also extraordinarily kind and attentive.
Tuesday, February 26, 2013
comment from santa monica to baltimore
NutriNellie. Brilliant! Then, once she completes her service, you get to say "Whoa, Nellie"!
Psst: Did you mean for your header to read "NutriNellie"?
PsstPsst: I refuse to eat my heart out in the knowledge that you and leslie have not two twin- but two QUEEN-SIZE beds, not spartan but PILLOW-SOFT mattresses, not a telephone booth for a bathroom but one you can TWIRL AROUND IN. And am I correct to assume you have 500-count cotton sheets as well, and ones that fit so your feet don't freeze sticking out? And are there also generous blankets and plush towels? Luxury soap thicker than the quarter-inch allotted to us at Family House? Sure. Sure. But am I eating my heart out as you two order room-service? No. Not at all. I've decided, rather, on all twenty of my fingers and toes!
Psstx3: I'll be up at 6 AM PST tomorrow and, be assured, I'll be thinking of you.
NutriNellie. Brilliant! Then, once she completes her service, you get to say "Whoa, Nellie"!
Psst: Did you mean for your header to read "NutriNellie"?
PsstPsst: I refuse to eat my heart out in the knowledge that you and leslie have not two twin- but two QUEEN-SIZE beds, not spartan but PILLOW-SOFT mattresses, not a telephone booth for a bathroom but one you can TWIRL AROUND IN. And am I correct to assume you have 500-count cotton sheets as well, and ones that fit so your feet don't freeze sticking out? And are there also generous blankets and plush towels? Luxury soap thicker than the quarter-inch allotted to us at Family House? Sure. Sure. But am I eating my heart out as you two order room-service? No. Not at all. I've decided, rather, on all twenty of my fingers and toes!
Psstx3: I'll be up at 6 AM PST tomorrow and, be assured, I'll be thinking of you.
Meeting NurtriNellie
On the way down, we decided that referring to the device that is to be inserted tomorrow as a "feeding tube" is just is too tacky. Thus, tomorrow hopefully by noon, NutriNellie will make her debut.
Here We Go
Monday, February 25, 2013
Sunday, February 24, 2013
Baltimore's Hotspot
I am a repeat customer at Johns Hopkins Medical Center. During the first week of December, I was
admitted for what turned out to be Right Heart Failure. Chelsea
and I had to wait in Admissions for the room assignment. No surprise, that we had to wait some more. I was feeling pretty relaxed. We had some good conversations
with the women in admittance. Finally,
they called for me. I asked, “Where am I
going?” “To the old section,” one of the
receptionists cheerfully announced.
PANIC struck. ANXIETY set
in. The story of The Immortal Life of
Henrietta Lacks vividly appeared right before my eyes. I could see the back door Henrietta was
forced to enter to get to the segregated section of this hospital. The ill-equipped operating room made me
shiver. The fact they withheld information
about her cancer filled me with doubt. She
had no idea what was going on or her need to follow-up after she returned to
her home.
Henrietta Lacks was a 31-year-old
black mother of five in Baltimore when she died of cervical cancer in 1951.
Without her knowledge, doctors treating her at Johns
Hopkins took tissue samples from her cervix for research. They spawned
the first viable, indeed miraculously productive, cell line—known as HeLa.
These cells have aided in medical discoveries from the polio vaccine to AIDS treatments.
What author Skloot so poignantly portrays is the devastating impact Henrietta's death
and the eventual importance of her cells had on her husband and children.
(from Publishers Weekly).
Chelsea couldn't believe my reaction. Once I got settled in my own room and Nurse Ratched didn’t
pop in, my nerves calmed down. I thought it best to stay away from these types of books for a
while. And, just in case, I was nice to
everyone who came in my room. Tomorrow, I hope to find out if I need to return to JH for another few days. If I do, I think
I’ll put a good book on the Kindle that takes me on a time travel, or a good crime scene on the Irish coast, or better yet a book on miracles..
Saturday, February 23, 2013
Posting A Comment
It has lifted my spirits learning that so many people are following the blog. It is some story, isn't it? Autoimmune diseases are clever. Symptoms can change. They can come and go, but the "dragon" remains elusive to researchers and doctors. That's not to say that great progress has not made to find the causes and the best treatments for various types of autoimmune disease, including mine. For me, the disease is old now and the treatments are more for the newly diagnosed. The internet wasn't in widespread use when I was first diagnosed. Scary, huh? The drugs are a drag, but they are delaying the progress of the disease as there is no cure (yet!) I also firmly believe that nutrition and our environment impacts the course of a disease. What I am saying is that ,,the right food, exercise, and clean environment affect us even if we are healthy. I was never perfect in these endeavors, enjoying my cookies and wine, but I remain a work-in-progress and have beaten the odds so far.
I was happy to have visitors today who took my mind off of the next step on this journey. We talked about the blog and what a great venue it is. It keeps everyone informed, and it's also an outlet for me to share with my friends, family, and others living with scleroderma. My sister, Mignon has been a great contributor and so many people have commented on how much they've enjoyed her writing. It has come up, however, that some people are having trouble making comments. If you have been successful, could you take a moment to post to "comments" how you do it. It might help others.
Here's what tips I have gotten.
- If you have an iPad or iPhone, it won't let you comment. One friend said he thought you might have to download Adobe.
- When you go to make a comment, choose Anonymous or your Gmail account. If you use your Gmail, make sure you are signed in.
Even Blogs are not without their glitches.
Friday, February 22, 2013
A Conditional YES
As we suspected, I have been deferred for a lung transplant. This essentially means that there are some conditions that need to be dealt with before the Selection Committee gives a firm "Yes." Those details will be made clear to me on Monday when Lisa, the coordinator, and my Doctor at Johns Hopkins call. Until then...
"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly."
"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly."
11:20 am santa monica
2:20 pm new jersey/pittsburgh
85% of the word is in. Colleen has been given a "deferred" status, which is what we were expecting and hoping for--a conditional "yes." It was not "no." Stay tuned for details. Know this, however: the Committee and Dr. McDyer, Colleen's primary Pittsburgh doctor and pulmonologist, believe Colleen has a "small window" within which to receive new lungs, i.e., she needs new lungs soon. Colleen has to get physically stronger and certain tests need to be done before her status changes from deferred to "yes."
`
2:20 pm new jersey/pittsburgh
85% of the word is in. Colleen has been given a "deferred" status, which is what we were expecting and hoping for--a conditional "yes." It was not "no." Stay tuned for details. Know this, however: the Committee and Dr. McDyer, Colleen's primary Pittsburgh doctor and pulmonologist, believe Colleen has a "small window" within which to receive new lungs, i.e., she needs new lungs soon. Colleen has to get physically stronger and certain tests need to be done before her status changes from deferred to "yes."
`
ocean avenue santa monica ca
Patience is a state of mind I feel grateful to possess during most of my waking hours. This morning, however, I am not only impatient, I am very impatient.
Colleen's lung transplant coordinator Lisa was to have called Colleen on Wednesday or Thursday with the decision of the Selection Committee, which met on Tuesday to consider Colleen, among others, for lung transplant. And Col, myself, our family and friends have practiced patience and remained calm, or relatively calm, over those two past days. But now it's Friday.
Ninety minutes ago, 11:30 am Pittsburgh/New Jersey time, I vigorously urged Colleen to call her UPMC coordinator, which she did. The Lung Transplant Center's phone receptionist told Colleen that Lisa was out today but that she would pass Colleen's message on to Lisa's colleagues, the two other coordinators Paul and Christgin, who were in a meeting just then. "Please have them call me back whether they have any information or not," Colleen requested.
So that was ninety-five minutes ago. I just now put in a call myself to the transplant center, as Colleen's primary caregiver, and spoke with that same phone receptionist, who told me the same thing she told Colleen, although indicating this time that Paul and Christgin were out of their meeting. "Please remind them to call," I requested.
Friday quitting time in Pittsburgh approaches as does the weekend.
And now I am feeling very, very impatient, impatience bordering on being royally pissed off. I have tools to deal with these out-sized emotions, but I'd really prefer not to have to use them.
This is kind of like a first date not showing up at the appointed time. Was he in a car accident? (Did Lisa have a family emergency?) Did he forget, or not want to make the difficult phone call to say he'd changed his mind? (Did she forget, carelessly let time slip away, or elect to put off delivering bad news?)
One good thing: Last week at Family House Colleen and I were given a heads-up by Judy and Ed, who told us that their call didn't come, as promised, on Wednesday or Thursday and that they had to call themselves on Friday. They learned then, three days after the Selection Committee met, that Ed had been given an unqualified "Yes" for transplant. Will we know the committee's decision on Colleen by the end of today too?
Three hours to go until 5:00 pm in Pittsburgh.
Yours truly,
Impatience
Patience is a state of mind I feel grateful to possess during most of my waking hours. This morning, however, I am not only impatient, I am very impatient.
Colleen's lung transplant coordinator Lisa was to have called Colleen on Wednesday or Thursday with the decision of the Selection Committee, which met on Tuesday to consider Colleen, among others, for lung transplant. And Col, myself, our family and friends have practiced patience and remained calm, or relatively calm, over those two past days. But now it's Friday.
Ninety minutes ago, 11:30 am Pittsburgh/New Jersey time, I vigorously urged Colleen to call her UPMC coordinator, which she did. The Lung Transplant Center's phone receptionist told Colleen that Lisa was out today but that she would pass Colleen's message on to Lisa's colleagues, the two other coordinators Paul and Christgin, who were in a meeting just then. "Please have them call me back whether they have any information or not," Colleen requested.
So that was ninety-five minutes ago. I just now put in a call myself to the transplant center, as Colleen's primary caregiver, and spoke with that same phone receptionist, who told me the same thing she told Colleen, although indicating this time that Paul and Christgin were out of their meeting. "Please remind them to call," I requested.
Friday quitting time in Pittsburgh approaches as does the weekend.
And now I am feeling very, very impatient, impatience bordering on being royally pissed off. I have tools to deal with these out-sized emotions, but I'd really prefer not to have to use them.
This is kind of like a first date not showing up at the appointed time. Was he in a car accident? (Did Lisa have a family emergency?) Did he forget, or not want to make the difficult phone call to say he'd changed his mind? (Did she forget, carelessly let time slip away, or elect to put off delivering bad news?)
One good thing: Last week at Family House Colleen and I were given a heads-up by Judy and Ed, who told us that their call didn't come, as promised, on Wednesday or Thursday and that they had to call themselves on Friday. They learned then, three days after the Selection Committee met, that Ed had been given an unqualified "Yes" for transplant. Will we know the committee's decision on Colleen by the end of today too?
Three hours to go until 5:00 pm in Pittsburgh.
Yours truly,
Impatience
Thursday, February 21, 2013
noon PST santa monica california
As you may have gleaned from my posts last week, our five days and six nights in Pittsburgh were like time in a bottle, or perhaps more accurately, time in a giant laboratory test tube, a multilevel glass cocoon of hospital corridors, medical machines, waiting rooms, beeps and pings, doctors in white coats, surgeons in green, the pulmonary department in charcoal gray, and the ubiquitous tall green oxygen tanks which, in retrospect, deserve special mention. On the very first day of Colleen's week-long evaluation, during the 3-hour Lung Transplant Orientation, I realized that we had landed in a place that had an utterly unique relationship to oxygen. Upon arriving at Presby that morning, Col had switched out her own portable oxygen tank for the larger, more powerful hospital tank. For the orientation, she and I were among the first to take seats around the large U-shaped conference table, which soon filled up with other lung transplant explorers and their caregivers. Green oxygen tanks and nose canulas dotted the room, of course; no surprise there. At the midway break, however, what did catch my attention was that, after the coordinator gave directions to the restrooms, she inquired,"Does anyone need their tank topped off?"
Hearing this and watching hands go up in response felt a bit like Colleen and I had landed at an outpost of Mars. This was the first taste, at least for me, of having entered into the nonordinary reality, the inner sanctum, of a prestigious hospital that houses a world-renowned, cutting edge, and uniquely courageous Lung Transplant Center. For a newbie lung transplant caregiver like me how could an environment replete with oxygen filling stations be anything but otherworldly?
Whether we were in Presby, Falk, or Montefiore Hospital, supplemental oxygen was within easy reach. To me, this reflected an institution-wide commitment to going to any lengths to make its lung-challenged patients and visitors comfortable and to alleviating the particular anxiety felt by those whose breathing is compromised. Throughout the week, whenever Colleen would arrive at an appointment, invariably she would be asked if she needed more oxygen, or even a newly filled tank. The person escorting Col to a test or a doctor would automatically sling Colleen's portable tank upon their own shoulder and carry it for her, as natural as a hotel doorman helping a guest with her bags.
By the way, oxygen-consciousness wasn't restricted to medical personnel. The shuttle driver, whose route was between Family House and the hospital, betrayed not a scintilla of impatience as Colleen moved one slow footfall at a time toward the van and then mindfully climbed the final two steps in order to board. On the one day we valet-parked at Presby, even the morning parking attendant made sure Col's green oxygen tank was set up for the day; at day's end, the late afternoon attendant made equally sure that she was oxygen-good before leaving.
For me, Pittsburgh's use of oxygen for fuel is rich with metaphorical implication. Breath. Spiritus. Spirit.
As you may have gleaned from my posts last week, our five days and six nights in Pittsburgh were like time in a bottle, or perhaps more accurately, time in a giant laboratory test tube, a multilevel glass cocoon of hospital corridors, medical machines, waiting rooms, beeps and pings, doctors in white coats, surgeons in green, the pulmonary department in charcoal gray, and the ubiquitous tall green oxygen tanks which, in retrospect, deserve special mention. On the very first day of Colleen's week-long evaluation, during the 3-hour Lung Transplant Orientation, I realized that we had landed in a place that had an utterly unique relationship to oxygen. Upon arriving at Presby that morning, Col had switched out her own portable oxygen tank for the larger, more powerful hospital tank. For the orientation, she and I were among the first to take seats around the large U-shaped conference table, which soon filled up with other lung transplant explorers and their caregivers. Green oxygen tanks and nose canulas dotted the room, of course; no surprise there. At the midway break, however, what did catch my attention was that, after the coordinator gave directions to the restrooms, she inquired,"Does anyone need their tank topped off?"
Hearing this and watching hands go up in response felt a bit like Colleen and I had landed at an outpost of Mars. This was the first taste, at least for me, of having entered into the nonordinary reality, the inner sanctum, of a prestigious hospital that houses a world-renowned, cutting edge, and uniquely courageous Lung Transplant Center. For a newbie lung transplant caregiver like me how could an environment replete with oxygen filling stations be anything but otherworldly?
Whether we were in Presby, Falk, or Montefiore Hospital, supplemental oxygen was within easy reach. To me, this reflected an institution-wide commitment to going to any lengths to make its lung-challenged patients and visitors comfortable and to alleviating the particular anxiety felt by those whose breathing is compromised. Throughout the week, whenever Colleen would arrive at an appointment, invariably she would be asked if she needed more oxygen, or even a newly filled tank. The person escorting Col to a test or a doctor would automatically sling Colleen's portable tank upon their own shoulder and carry it for her, as natural as a hotel doorman helping a guest with her bags.
By the way, oxygen-consciousness wasn't restricted to medical personnel. The shuttle driver, whose route was between Family House and the hospital, betrayed not a scintilla of impatience as Colleen moved one slow footfall at a time toward the van and then mindfully climbed the final two steps in order to board. On the one day we valet-parked at Presby, even the morning parking attendant made sure Col's green oxygen tank was set up for the day; at day's end, the late afternoon attendant made equally sure that she was oxygen-good before leaving.
For me, Pittsburgh's use of oxygen for fuel is rich with metaphorical implication. Breath. Spiritus. Spirit.
The Phone Call
Wednesday, February 20, 2013
The Hair-Do
Once upon a time, at the end of a busy day, I'd snuggle into bed and not stir till the break of morning. With long-term oxygen use, medications, and the thinking mind, those days are fewer. When I first woke last night, you'd think the weight of the lung transplant decision would be forefront in my mind. But, that wasn't it.
I was thinking about women and our attention to our hairstyles. I had seen a program sometime ago that highlighted the collective unconscious of women and their hair. Throughout history and around the world, the females have cut, colored, shaped, and adorned their hair. "How's my hair?" A question asked in many languages. During my last visit to my hair guru, I told her I needed a style that could withstand the rigors of the UPMC Evaluation. Lianne did not fail me. I looked at some of the pictures Mignon took. The results weren't too bad. The question now is, should I add more blonde highlights?
I was thinking about women and our attention to our hairstyles. I had seen a program sometime ago that highlighted the collective unconscious of women and their hair. Throughout history and around the world, the females have cut, colored, shaped, and adorned their hair. "How's my hair?" A question asked in many languages. During my last visit to my hair guru, I told her I needed a style that could withstand the rigors of the UPMC Evaluation. Lianne did not fail me. I looked at some of the pictures Mignon took. The results weren't too bad. The question now is, should I add more blonde highlights?
Reflections
Monday, February 18, 2013
Saturday, February 16, 2013
There's No Place Like Home
Dorothy's mantra. I think I said it more than she did over this past week. I hate to brag, but in my story the good witch is more beautiful, more patient and more loving. My sister, gave me strength and held me when I felt most fragile. She tolerated my frustrations with my limitations. Mignon took meticulous notes as the information just kept coming in from all directions. I just listened as carefully as I could. I didn't have the energy or brain power to do an entry on the blog but Mignon took up the gauntlet and kept everyone up to date. I'll never be able to express the deep gratitude I feel. Rather than calling her "the Good Witch," she should be known as "the Head Angel." Once I have a chance to regroup, I hope to share some of my experiences. For now, let me say this, if I ever had a doubt there were angels...NOT ANY MORE!
7:30 pm 10 village drive somers point nj 08244
We have recently, as of 15 minutes ago, touched down from points west, phantasmagoric, galactica. It feels like we just returned from the moon.
Colleen's sitting across from me with a solitary, terrestrial glass of red wine (with ice?!), while dining on a veggie burger and potato chips. Some local angel left two frosted doughnuts and a plate of homemade chocolate chip cookies on Col's dining table so I'm dining on those. As you can see, our meeting with the UPMC Nutritionist on Evaluation Day 4 turned our eating lives around. (Kidding, of course, we're just temporarily self-medicating.)
The Camry is unpacked, our bags in our respective bedrooms.
Before leaving Pittsburgh, after lots of goodbye hugs at Family House, we did take the time to see that special spot where the south-flowing Allegheny and Monongahela Rivers come together to create the mighty Ohio. We found our way to the top of Mt. Washington--formerly known as Coal Hill--and indulged in the spectacular view from there.
Tomorrow morning at 10, the immediate family is gathering here at Col's for a debriefing.
Bon nuit.
We have recently, as of 15 minutes ago, touched down from points west, phantasmagoric, galactica. It feels like we just returned from the moon.
Colleen's sitting across from me with a solitary, terrestrial glass of red wine (with ice?!), while dining on a veggie burger and potato chips. Some local angel left two frosted doughnuts and a plate of homemade chocolate chip cookies on Col's dining table so I'm dining on those. As you can see, our meeting with the UPMC Nutritionist on Evaluation Day 4 turned our eating lives around. (Kidding, of course, we're just temporarily self-medicating.)
The Camry is unpacked, our bags in our respective bedrooms.
Before leaving Pittsburgh, after lots of goodbye hugs at Family House, we did take the time to see that special spot where the south-flowing Allegheny and Monongahela Rivers come together to create the mighty Ohio. We found our way to the top of Mt. Washington--formerly known as Coal Hill--and indulged in the spectacular view from there.
Tomorrow morning at 10, the immediate family is gathering here at Col's for a debriefing.
Bon nuit.
Pittsburgh's Golden Triangle
Downtown Pittsburgh
the Allegheny River, on the left,
& the Monongahela on the right,
merge here to form the mighty Ohio River
Pittsburgh is the city of 14 bridges!
Friday, February 15, 2013
9:22 pm our last night room 603 University Place House pittsburgh
We're 75% packed, had dinner in the upstairs dining room, and said goodbye to new friends--Mary, Rhonda, Judy, Ed, Ann, and others whose names we never learned, or didn't learn enough to remember.
No setting alarm clocks tonight. We get up when we get up. Before leaving Pittsburgh, we want to see the confluence of the Allegheny, Monongahela, and Ohio Rivers, which is only two miles from where we're staying. Pittsburgers know this place of convergence as the Golden Triangle. Downtown Pittsburgh is located there, on that point of the Triangle kissed by all three rivers. So we're heading there first thing, before jumping on our connector to the Pennsylvania Turnpike.
Colleen just put down her book and said she can't wait to get home, having felt "caged" here without her far longer oxygen cords at home.
Soon.
We're 75% packed, had dinner in the upstairs dining room, and said goodbye to new friends--Mary, Rhonda, Judy, Ed, Ann, and others whose names we never learned, or didn't learn enough to remember.
No setting alarm clocks tonight. We get up when we get up. Before leaving Pittsburgh, we want to see the confluence of the Allegheny, Monongahela, and Ohio Rivers, which is only two miles from where we're staying. Pittsburgers know this place of convergence as the Golden Triangle. Downtown Pittsburgh is located there, on that point of the Triangle kissed by all three rivers. So we're heading there first thing, before jumping on our connector to the Pennsylvania Turnpike.
Colleen just put down her book and said she can't wait to get home, having felt "caged" here without her far longer oxygen cords at home.
Soon.
2:30 pm holding/recovery room Cardiac Cath unit
Nurse Tom just helped Colleen out of bed for the first time since the cath and he's walking her around, checking to make sure the incision has closed properly (an artery and a vein were exposed). Not wanting to use the bedpan, Colleen has been "holding it." Oh, they just got back. She used the bathroom. And Nurse Tom just gave her the go-ahead to leave.
I am so ready to go home, home as in Family House. I'll wheel Col down to the lobby, walk back to Family House to get the car, and then drive back to Presby to pick up the "patient."
Nurse Tom just helped Colleen out of bed for the first time since the cath and he's walking her around, checking to make sure the incision has closed properly (an artery and a vein were exposed). Not wanting to use the bedpan, Colleen has been "holding it." Oh, they just got back. She used the bathroom. And Nurse Tom just gave her the go-ahead to leave.
I am so ready to go home, home as in Family House. I'll wheel Col down to the lobby, walk back to Family House to get the car, and then drive back to Presby to pick up the "patient."
11:00 am Colleen's bedside Cardiac Cath Holding Room
Awake but eyes closed, Col is tucked under three hospital-warmed blankets. They want her lying prone for 2-1/2 more hours and then...and then...and then...we are done!
I'm sitting right next to her doing my thing, and hoping she will sleep.
The doctor who did the cath, Dr. Scolari, a woman physician, stopped by a few minutes ago with no unexpected or bad news whatsoever. Whew.
We leave for Jersey in the morning.
In the meantime, my intention is to start typing up my handwritten notes for the week.
Awake but eyes closed, Col is tucked under three hospital-warmed blankets. They want her lying prone for 2-1/2 more hours and then...and then...and then...we are done!
I'm sitting right next to her doing my thing, and hoping she will sleep.
The doctor who did the cath, Dr. Scolari, a woman physician, stopped by a few minutes ago with no unexpected or bad news whatsoever. Whew.
We leave for Jersey in the morning.
In the meantime, my intention is to start typing up my handwritten notes for the week.
9:30 am day 5 friday cardiac cath family waiting room
This trio of hospitals runs like a finely calibrated clock, or an enormous Santa's workshop where each and every elf knows her and his job and each and every visitor is treated as a five-star guest. At least this has been true for us, perhaps because of the intricate tapestry of the week-long lung transplant evaluation which, we've come to understand, is pretty much a constant here at UPMC.
The red light told me that Colleen was fully prepped for her cath. Simultaneously I received a personal call on the waiting room phone telling me I could walk down to the "Holding Room" to see her. (See how they go to any lengths?) And they will call me again on that same phone when the procedure is over so I can sit with Col for the hour or two or three that she is resting and recovering.
In the Holding Room, Colleen was lying in a hospital gown in one of those curtained hospital cubicles. She seemed at ease in the midst of speaking with one of the assisting doctors who was describing the procedure which will entail the use of two wires with which they will explore both Col's right and left heart. (She's had one heart cath before, but only of the right heart.) He told us, when I asked, that the wires are about the thickness of spaghetti. Colleen said, "Angel hair pasta?" "Not quite that thin," he said.
So Colleen is undergoing the cath as I type, or perhaps in the taking-out-the-tubes end phase of the procedure. I'm undergoing the torturous, chronic sound of television, flat screens mounted on the wall in all waiting rooms thus far. Not only is television ubiquitous, but right at this moment it's daytime TV-- inanely shrill game and talk shows which twist my insides to screaming. Would that I could partake of Col's twilight zone.
Purple!
The line for PUHCL-2013-499 on the monitor has just turned purple and reads "To Holding (post-op)." It's over! The next ring of the telephone might be Nurse Tom giving me the green light to come back to recovery. (Many others are sitting here waiting for their calls as well. We've been taking turns answering.)
This trio of hospitals runs like a finely calibrated clock, or an enormous Santa's workshop where each and every elf knows her and his job and each and every visitor is treated as a five-star guest. At least this has been true for us, perhaps because of the intricate tapestry of the week-long lung transplant evaluation which, we've come to understand, is pretty much a constant here at UPMC.
The red light told me that Colleen was fully prepped for her cath. Simultaneously I received a personal call on the waiting room phone telling me I could walk down to the "Holding Room" to see her. (See how they go to any lengths?) And they will call me again on that same phone when the procedure is over so I can sit with Col for the hour or two or three that she is resting and recovering.
In the Holding Room, Colleen was lying in a hospital gown in one of those curtained hospital cubicles. She seemed at ease in the midst of speaking with one of the assisting doctors who was describing the procedure which will entail the use of two wires with which they will explore both Col's right and left heart. (She's had one heart cath before, but only of the right heart.) He told us, when I asked, that the wires are about the thickness of spaghetti. Colleen said, "Angel hair pasta?" "Not quite that thin," he said.
So Colleen is undergoing the cath as I type, or perhaps in the taking-out-the-tubes end phase of the procedure. I'm undergoing the torturous, chronic sound of television, flat screens mounted on the wall in all waiting rooms thus far. Not only is television ubiquitous, but right at this moment it's daytime TV-- inanely shrill game and talk shows which twist my insides to screaming. Would that I could partake of Col's twilight zone.
Purple!
The line for PUHCL-2013-499 on the monitor has just turned purple and reads "To Holding (post-op)." It's over! The next ring of the telephone might be Nurse Tom giving me the green light to come back to recovery. (Many others are sitting here waiting for their calls as well. We've been taking turns answering.)
6:25 am Day 5 Cardiac Cath Lab waiting room 3rd floor Presby
Alarms work? Check. Arive at hospital on time? Check--we're fifteen minutes early, in fact. And that includes driving from Thackeray to Presby, dropping Colleen off in the Main Lobby where she gets her chair and oxygen for the day, driving the car back to Thackeray, my walking back to Presby (36 degrees outside; Mom's coat and my gloves keep me warm) and, finally, wheeling up here to the Heart Cath Lab. In other words, masterful focus. Mom, you would be proud of us. We've been the two blonde sprites dancing through the halls, up and down the elevators, and into waiting rooms, doctor's offices, labs, and Presby's 11th floor cafeteria, although we pretty much pack our own food for the day.
7 am Col was just wheeled to prep by a nerdy-cute, thirtyish, comic, possibly gay, intake guy. "Are you conjoined twins?" he asked us. "Is there anything we could do for you today, Mignon? A colonoscopy perhaps?"
He laid out how things will unfold. "You're going to be separated now for forty-five minutes," he said. "Oh, no!" I said back. He pointed me toward the Family Waiting Room and directed me to watch for Colleen's code number PUHCL-2013-499 to highlight red on the monitor, which is mounted on the wall to my left as I type. Next to Col's anonymous patient code it reads "In Holding (pre-op) in yellow. When it turns red, I'm supposed to walk down the hall to where they've taken her.
Col's demeanor this morning, in anticipation of the cath, is subdued but okay. As a precaution, the lab asks all heart cath patients to bring an overnight bag with them--just in case there's a complication. Our thinking is that, since her test is among the day's first, the likelihood of her having to spend the night is slim. As far as the overnight bag goes, Colleen, with remarkable simplicity, put but a tiny pair of panties and her toothbrushing stuff into the light tote she's had with her all week. Others arrived carrying separate, seemingly full, duffle-like bags.
Still yellow.
You have read my report of the presence of angels here. Today's first, upon arrival at Presby at not quite 6:00 am: Colleen is exiting the passenger side of the car where I'm already at the ready with the wheelchair. "I'll walk," she says to me. That means, using her portable oxygen tank, she'll walk not ride the 20 yards or so to the Main Lobby Reception Desk. Just then a frail, rough-living man with a cigarette hanging from his mouth appears behind us from out of nowhere and says softly, "Can I help you?" By then, I'm turning around to heft the chair back into the trunk. "Oh, no, turns out we're not going to use it," I say to him. "I would help you anyway," he says.
Red.
Alarms work? Check. Arive at hospital on time? Check--we're fifteen minutes early, in fact. And that includes driving from Thackeray to Presby, dropping Colleen off in the Main Lobby where she gets her chair and oxygen for the day, driving the car back to Thackeray, my walking back to Presby (36 degrees outside; Mom's coat and my gloves keep me warm) and, finally, wheeling up here to the Heart Cath Lab. In other words, masterful focus. Mom, you would be proud of us. We've been the two blonde sprites dancing through the halls, up and down the elevators, and into waiting rooms, doctor's offices, labs, and Presby's 11th floor cafeteria, although we pretty much pack our own food for the day.
7 am Col was just wheeled to prep by a nerdy-cute, thirtyish, comic, possibly gay, intake guy. "Are you conjoined twins?" he asked us. "Is there anything we could do for you today, Mignon? A colonoscopy perhaps?"
He laid out how things will unfold. "You're going to be separated now for forty-five minutes," he said. "Oh, no!" I said back. He pointed me toward the Family Waiting Room and directed me to watch for Colleen's code number PUHCL-2013-499 to highlight red on the monitor, which is mounted on the wall to my left as I type. Next to Col's anonymous patient code it reads "In Holding (pre-op) in yellow. When it turns red, I'm supposed to walk down the hall to where they've taken her.
Col's demeanor this morning, in anticipation of the cath, is subdued but okay. As a precaution, the lab asks all heart cath patients to bring an overnight bag with them--just in case there's a complication. Our thinking is that, since her test is among the day's first, the likelihood of her having to spend the night is slim. As far as the overnight bag goes, Colleen, with remarkable simplicity, put but a tiny pair of panties and her toothbrushing stuff into the light tote she's had with her all week. Others arrived carrying separate, seemingly full, duffle-like bags.
Still yellow.
You have read my report of the presence of angels here. Today's first, upon arrival at Presby at not quite 6:00 am: Colleen is exiting the passenger side of the car where I'm already at the ready with the wheelchair. "I'll walk," she says to me. That means, using her portable oxygen tank, she'll walk not ride the 20 yards or so to the Main Lobby Reception Desk. Just then a frail, rough-living man with a cigarette hanging from his mouth appears behind us from out of nowhere and says softly, "Can I help you?" By then, I'm turning around to heft the chair back into the trunk. "Oh, no, turns out we're not going to use it," I say to him. "I would help you anyway," he says.
Red.
Thursday, February 14, 2013
2030 hours room 603 university place family house 116 thackeray av pittsburgh
Tonight, Colleen and I have set not 2 but 3 (!) alarm clocks. This because both of our alarms failed to wake us up this morning (mine too soft, Colleen's too). We had planned to get up at 5:45 for a 7:30 first appointment. Both of us go crazy if we have to rush in the morning, so we felt we'd given ourselves a prudent amount of time to dress, eat breakfast, and pack up for Day 4 at the hospital. We both fell asleep easily last night--crashed is more like it. Pre-dawn, I stirred, calm in the knowledge the dual alarms had yet to go off. Nonetheless, I took a peak at my bedside clock. WHAT?!!? "Col!" I said. Her eyes pop open. "It's five of seven!" Her eyes pop open even wider. She looked about five years old.
We sprung into action--the tortoise and the hare. I, the hare, packed up pen and paper, water for both of us, elevatored up to the kitchen to grab our cold oj, and readied the wheelchair. Col, the tortoise, packed up pen and paper and medical records, filled her oxygen tank, and got in the chair tout suite. Of course, we were out of our pj's by then, a well-worn folded copy of the week's schedule in my jeans pocket, Colleen's copy in her tote. (Neither of us has lost this schedule; it's our bible here.) So: Wheelchair to the down elevator, wheel to Col's Camry in-house parking lot, stash wheelchair in trunk, 3-minute drive to Falk Hospital during which we dissect The Tortoise and The Hare fable and how unlike the competitive Tortoise and Hare we are. We valet park at Falk (the first time we've indulged in this luxury), switch out the red for the black hospital wheelchair and oxygen tank, wheel to Radiology on the first floor, and check in at 7:27! On time!
Just one more Pittsburgh miracle among hundreds since we've been here.
Colleen's heart cath, her last and most challenging test, is tomorrow morning with a check-in time of 6:15!
Thus, our setting 3 alarms. Wake-up time: 5:15! Col can't eat or drink past midnight, so breakfast won't be an issue in the morning. She just snuggled into her two soft blankies and closed her eyes. Here I go too.
PS on our Valet Park: We finished at the hospital at 5 pm today. When we handed the valet parking attendant a twenty-dollar bill to pay, he said "Oh, our cashier is shut down for the day. So no charge--just this one time (wink)." As he set out to get the car, I quietly said to him, "We've been here for 4 days and have run into angel and after angel." "Don't you know that God is everywhere?" he said with a big smile. "Angels keep turning up and helping us just when we need it," I continued. "That's what we're here for," he said still smiling. Colleen gave him a $10 tip. "God told us to give that to you," she said. One final smile. When he said, "That's what we're here for," to help, it was implicit, of course, that he meant that's what we're all here for.
PS: The University of Pittsburgh Medical Center (UPMC), the University of Pittsburgh Medical School, and the University of Pittsburgh cohabit the same hillside here in the Oakland section of Pittsburgh. The buildings kind of tumble into one another.
UPMC has three hospitals--Presbyterian Hospital (Presby), Falk Hospital, and Montefiore Hospital-- all cobbled together by tunnels and long hallways, and extremely confusing floor identifiers because of the steep hill upon which they sit. For instance, Falk G (ground floor) = Presby 3 (3rd floor) and so on. Because of the steep slope upon which the hospitals are built, the corridors Colleen and I have been traversing have uphills and downhills. All I can tell you is that wheelchair drivers like me have to be pretty darn strong, first to climb and second to assure slow, rather than runaway, descents.
Good-night
Tonight, Colleen and I have set not 2 but 3 (!) alarm clocks. This because both of our alarms failed to wake us up this morning (mine too soft, Colleen's too). We had planned to get up at 5:45 for a 7:30 first appointment. Both of us go crazy if we have to rush in the morning, so we felt we'd given ourselves a prudent amount of time to dress, eat breakfast, and pack up for Day 4 at the hospital. We both fell asleep easily last night--crashed is more like it. Pre-dawn, I stirred, calm in the knowledge the dual alarms had yet to go off. Nonetheless, I took a peak at my bedside clock. WHAT?!!? "Col!" I said. Her eyes pop open. "It's five of seven!" Her eyes pop open even wider. She looked about five years old.
We sprung into action--the tortoise and the hare. I, the hare, packed up pen and paper, water for both of us, elevatored up to the kitchen to grab our cold oj, and readied the wheelchair. Col, the tortoise, packed up pen and paper and medical records, filled her oxygen tank, and got in the chair tout suite. Of course, we were out of our pj's by then, a well-worn folded copy of the week's schedule in my jeans pocket, Colleen's copy in her tote. (Neither of us has lost this schedule; it's our bible here.) So: Wheelchair to the down elevator, wheel to Col's Camry in-house parking lot, stash wheelchair in trunk, 3-minute drive to Falk Hospital during which we dissect The Tortoise and The Hare fable and how unlike the competitive Tortoise and Hare we are. We valet park at Falk (the first time we've indulged in this luxury), switch out the red for the black hospital wheelchair and oxygen tank, wheel to Radiology on the first floor, and check in at 7:27! On time!
Just one more Pittsburgh miracle among hundreds since we've been here.
Colleen's heart cath, her last and most challenging test, is tomorrow morning with a check-in time of 6:15!
Thus, our setting 3 alarms. Wake-up time: 5:15! Col can't eat or drink past midnight, so breakfast won't be an issue in the morning. She just snuggled into her two soft blankies and closed her eyes. Here I go too.
PS on our Valet Park: We finished at the hospital at 5 pm today. When we handed the valet parking attendant a twenty-dollar bill to pay, he said "Oh, our cashier is shut down for the day. So no charge--just this one time (wink)." As he set out to get the car, I quietly said to him, "We've been here for 4 days and have run into angel and after angel." "Don't you know that God is everywhere?" he said with a big smile. "Angels keep turning up and helping us just when we need it," I continued. "That's what we're here for," he said still smiling. Colleen gave him a $10 tip. "God told us to give that to you," she said. One final smile. When he said, "That's what we're here for," to help, it was implicit, of course, that he meant that's what we're all here for.
PS: The University of Pittsburgh Medical Center (UPMC), the University of Pittsburgh Medical School, and the University of Pittsburgh cohabit the same hillside here in the Oakland section of Pittsburgh. The buildings kind of tumble into one another.
UPMC has three hospitals--Presbyterian Hospital (Presby), Falk Hospital, and Montefiore Hospital-- all cobbled together by tunnels and long hallways, and extremely confusing floor identifiers because of the steep hill upon which they sit. For instance, Falk G (ground floor) = Presby 3 (3rd floor) and so on. Because of the steep slope upon which the hospitals are built, the corridors Colleen and I have been traversing have uphills and downhills. All I can tell you is that wheelchair drivers like me have to be pretty darn strong, first to climb and second to assure slow, rather than runaway, descents.
Good-night
Wednesday, February 13, 2013
10:15 am Day 3 UPMC Presby radiology
Last night, Tuesday night, as Colleen was resting and reading on her twin bed, I put my head on the pillow and fell asleep for 11 1/2 hours...this might give you an indication of the level of intensity thus far (and Colleen and I both fell asleep in our day clothes, too tired to change into pajamas)...
This morning, Colleen's appointments didn't start until 9:45, so we were like two kids last night when we realized we could sleep in this morning...the previous two mornings we've used our two alarm clocks to get up at 6:00 and 6:30...Neither Col nor I slept much at all the first night (Sunday)...not because of particularly disturbing thoughts but because of the adrenaline of expectation, we concluded...Monday night we slept a little better...last night we got the best sleep so far...My wheelchair skills are also on an upward curve...I brought two heavy shoulder bags with me on Monday, for instance--with our water, food, evaluation materials, notebooks, etc--not realizing how unwieldy these large bags would be, I discovered, as one's shoulders slope downward when you lean forward to grasp the wheelchair's handlebars... Tuesday, down to one bag, which helped a lot...Note: if there's a next time, bring a backpack...
Colleen and I both think this place is astonishingly wonderful...each and every person we've met--at Family House, the shuttle bus driver, the hospital nurses and techs, the doctors we've met, including the surgeons--have been warm, kind, unhurried, and thoughtful, even anticipating needs we may not have known we had. A glitch arises or we get lost, which happens over and over in this giant medical legoland on a hill, and presto, a person suddenly appears and steers us in the right direction, even the chief hospital electrician who we came across on Day 1 when we lost our bearings on the labrynthine path from Presby to Falk Hospital. While escorting us partway, he talked about the particular responsibility he feels for ensuring an unbroken current of electricity to the hospital's life-and-death machines. He's just one of the "angels" who keep magically appearing just when we need them.
...
Several hours have passed with multiple interruptions so I had to stop typing. But Colleen is doing her last test of the day now, the second worst of the week, which involves a barium swallow. (The worst test comes Friday: a full heart catheterization.) I can tell you Col has not been looking forward to the barium swallow.
But she and I are both looking forward to finishing up at the hospital early today. On Monday even the hallways of Dr. McDyer's offices were dark after our appointment with him, and it was dark outside. Yesterday was jam-packed. We met with Dr. Shimagura, who will be Colleen's surgeon if she has the transplant. We both liked him a lot. We met the fellow (female doctor) who would be operating with him and liked her a lot too. (By the way, I think everyone we're meeting is also liking us, and these meetings have been noticeably unrushed and relaxed. We talk, they ask questions, we ask questions, bits of things we didn't know emerge. We walk in and, for the most part, whomever we're meeting with already knows Colleen's history and current condition.)
...
More hours have passed. Colleen said the barium swallow wasn't that bad (Whew!). When we left the hospital around 3:30, snow flurries were falling. Our routine has become this: When day is done at the hospital, I walk "home" and get the car--about 7 minutes away--and drive back to the Presby's Main Lobby to pick up Colleen. This plan is way faster than taking the shuttle.
In spite of the snow, we drove to Trader Joe's, three miles away, and got some "green" provisions, fruit, oj, and ingredients for smoothies. It was good to get "out," ie, to see something beyond the solid square blocks of hospital, in spite of the satisfaction of knowing these blocks well now.
It was snowing harder and growing darker on the way back to University Place (the name of our particular Family House). Colleen wanted to have a cup of tea together in the "drawing room" on the 8th Floor and I scored us some day-old but very good blueberry scones from the communal kitchen (also on the 8th Floor). We're regulars now and have already said goodbye to a few residents who were here when we arrived on Sunday.
It's going on 8:00 now. Colleen and I have both managed to put on pajamas. She's on her computer too. With some chagrin, we've set our alarms for 5:45 (!) in order for Colleen to make her first morning test at 7:30. We then have meetings scheduled with a Nutritionist, Social Services (Psychology), and Rheumatology. Major blood testing sometime in the afternoon, when we can fit it in.
By the way, Day 2 consisted of meetings with transplant surgeon Dr. Shigamura, mentioned earlier; financial people; Cardiology (Dr. David Ishizawar); Pulmonology (Dr. Amy Rivera); and Gastrointerology (Dr. Klaus Bielefeldt, a rail-thin, sprite-like individual with an appealing sense of humor and heavy German accent.)
On Day 1, Colleen met and was permanently assigned to one of the Lung Transplant Program's 3 coordinators, Lisa Carozzo, an RN who will be Col's main contact for the duration. She is the person who will call Colleen to tell her whether or not she has been accepted as a candidate for a lung transplant. If Colleen is put on the transplant list, Lisa will remain her primary contact for the duration, pre- and post-transplant.
NOTE: The Lung Transplant Selection Committee will meet NEXT TUESDAY. Dr. McDyer will present Colleen's case. Every aspect of her health--lungs, heart, kidneys, pulmonary artery, esophagus, body weight, and state of mind will be reviewed by the entire committee and a decision will be made.
NEXT WEDNESDAY OR THURSDAY, Lisa, Col's coordinator, will call her with the committee's decision.
Col will hear 1 of 3 messages from Lisa in that call:
1. You have been accepted as a candidate for lung transplant.
2. You are considered a likely candidate for lung transplant, but a final decision is deferred until the following tests are done, and/or until you've gain X amount of weight, and/or...
3. You are not a candidate for a lung transplant at UPMC.
Deferred acceptances, we heard today, are the most common decisions.
No one here thinks Colleen does not need a new pair of lungs. Dr. McDyer's opinion is that hers will/would be a "high risk" lung transplant. (High risk lung transplants are UPMC's speciality, thank heaven.) The question is whether any of the many variables of Col's condition would preclude a "safe" and successful high risk lung transplant.
My strong impression is that each physician we've met
--each of whom will either be part of the Selection Committe or give their studied opinion to the Committee--each of these doctors are dedicated, will leave no stone unturned in determining the viability of new lungs for Colleen, and will go to any lengths to make the right decision. Even before we arrived here, I had the impression that this is a place that goes to any lengths. Seeing everything here firsthand has only strengthened my confidence.
Signing off.
Last night, Tuesday night, as Colleen was resting and reading on her twin bed, I put my head on the pillow and fell asleep for 11 1/2 hours...this might give you an indication of the level of intensity thus far (and Colleen and I both fell asleep in our day clothes, too tired to change into pajamas)...
This morning, Colleen's appointments didn't start until 9:45, so we were like two kids last night when we realized we could sleep in this morning...the previous two mornings we've used our two alarm clocks to get up at 6:00 and 6:30...Neither Col nor I slept much at all the first night (Sunday)...not because of particularly disturbing thoughts but because of the adrenaline of expectation, we concluded...Monday night we slept a little better...last night we got the best sleep so far...My wheelchair skills are also on an upward curve...I brought two heavy shoulder bags with me on Monday, for instance--with our water, food, evaluation materials, notebooks, etc--not realizing how unwieldy these large bags would be, I discovered, as one's shoulders slope downward when you lean forward to grasp the wheelchair's handlebars... Tuesday, down to one bag, which helped a lot...Note: if there's a next time, bring a backpack...
Colleen and I both think this place is astonishingly wonderful...each and every person we've met--at Family House, the shuttle bus driver, the hospital nurses and techs, the doctors we've met, including the surgeons--have been warm, kind, unhurried, and thoughtful, even anticipating needs we may not have known we had. A glitch arises or we get lost, which happens over and over in this giant medical legoland on a hill, and presto, a person suddenly appears and steers us in the right direction, even the chief hospital electrician who we came across on Day 1 when we lost our bearings on the labrynthine path from Presby to Falk Hospital. While escorting us partway, he talked about the particular responsibility he feels for ensuring an unbroken current of electricity to the hospital's life-and-death machines. He's just one of the "angels" who keep magically appearing just when we need them.
...
Several hours have passed with multiple interruptions so I had to stop typing. But Colleen is doing her last test of the day now, the second worst of the week, which involves a barium swallow. (The worst test comes Friday: a full heart catheterization.) I can tell you Col has not been looking forward to the barium swallow.
But she and I are both looking forward to finishing up at the hospital early today. On Monday even the hallways of Dr. McDyer's offices were dark after our appointment with him, and it was dark outside. Yesterday was jam-packed. We met with Dr. Shimagura, who will be Colleen's surgeon if she has the transplant. We both liked him a lot. We met the fellow (female doctor) who would be operating with him and liked her a lot too. (By the way, I think everyone we're meeting is also liking us, and these meetings have been noticeably unrushed and relaxed. We talk, they ask questions, we ask questions, bits of things we didn't know emerge. We walk in and, for the most part, whomever we're meeting with already knows Colleen's history and current condition.)
...
More hours have passed. Colleen said the barium swallow wasn't that bad (Whew!). When we left the hospital around 3:30, snow flurries were falling. Our routine has become this: When day is done at the hospital, I walk "home" and get the car--about 7 minutes away--and drive back to the Presby's Main Lobby to pick up Colleen. This plan is way faster than taking the shuttle.
In spite of the snow, we drove to Trader Joe's, three miles away, and got some "green" provisions, fruit, oj, and ingredients for smoothies. It was good to get "out," ie, to see something beyond the solid square blocks of hospital, in spite of the satisfaction of knowing these blocks well now.
It was snowing harder and growing darker on the way back to University Place (the name of our particular Family House). Colleen wanted to have a cup of tea together in the "drawing room" on the 8th Floor and I scored us some day-old but very good blueberry scones from the communal kitchen (also on the 8th Floor). We're regulars now and have already said goodbye to a few residents who were here when we arrived on Sunday.
It's going on 8:00 now. Colleen and I have both managed to put on pajamas. She's on her computer too. With some chagrin, we've set our alarms for 5:45 (!) in order for Colleen to make her first morning test at 7:30. We then have meetings scheduled with a Nutritionist, Social Services (Psychology), and Rheumatology. Major blood testing sometime in the afternoon, when we can fit it in.
By the way, Day 2 consisted of meetings with transplant surgeon Dr. Shigamura, mentioned earlier; financial people; Cardiology (Dr. David Ishizawar); Pulmonology (Dr. Amy Rivera); and Gastrointerology (Dr. Klaus Bielefeldt, a rail-thin, sprite-like individual with an appealing sense of humor and heavy German accent.)
On Day 1, Colleen met and was permanently assigned to one of the Lung Transplant Program's 3 coordinators, Lisa Carozzo, an RN who will be Col's main contact for the duration. She is the person who will call Colleen to tell her whether or not she has been accepted as a candidate for a lung transplant. If Colleen is put on the transplant list, Lisa will remain her primary contact for the duration, pre- and post-transplant.
NOTE: The Lung Transplant Selection Committee will meet NEXT TUESDAY. Dr. McDyer will present Colleen's case. Every aspect of her health--lungs, heart, kidneys, pulmonary artery, esophagus, body weight, and state of mind will be reviewed by the entire committee and a decision will be made.
NEXT WEDNESDAY OR THURSDAY, Lisa, Col's coordinator, will call her with the committee's decision.
Col will hear 1 of 3 messages from Lisa in that call:
1. You have been accepted as a candidate for lung transplant.
2. You are considered a likely candidate for lung transplant, but a final decision is deferred until the following tests are done, and/or until you've gain X amount of weight, and/or...
3. You are not a candidate for a lung transplant at UPMC.
Deferred acceptances, we heard today, are the most common decisions.
No one here thinks Colleen does not need a new pair of lungs. Dr. McDyer's opinion is that hers will/would be a "high risk" lung transplant. (High risk lung transplants are UPMC's speciality, thank heaven.) The question is whether any of the many variables of Col's condition would preclude a "safe" and successful high risk lung transplant.
My strong impression is that each physician we've met
--each of whom will either be part of the Selection Committe or give their studied opinion to the Committee--each of these doctors are dedicated, will leave no stone unturned in determining the viability of new lungs for Colleen, and will go to any lengths to make the right decision. Even before we arrived here, I had the impression that this is a place that goes to any lengths. Seeing everything here firsthand has only strengthened my confidence.
Signing off.
2100 hours room 603 family house pittsburgh...
Presby Entrance
I just said to Colleen that I was only going to write a few words and I hope I can stick to that because, like Colleen, every cell in my body is imploring me to get prone...This morning at 8:15 we stepped onto the shuttle to Presby (UPMC Presbyterian Hospital's nickname) where we got Colleen set up with a black wheel chair (not as cool as Colleen's red one) and heavy-duty oxygen tank for the day...first order of business, an echocardiogram, which Colleen said was one of the easy ones...next a 3-hour lung transplant orientation (Colleen and I asked the most questions)...then a pulmonary function test, which also didn't hurt...and finally, at 5 pm, we met with John McDyer, MD...there's not exactly a lung transplant honcho here, but he comes closest and is the Johns Hopkins contact who agreed to see Colleen earlier than otherwise would have happened...
I just said to Colleen that I was only going to write a few words and I hope I can stick to that because, like Colleen, every cell in my body is imploring me to get prone...This morning at 8:15 we stepped onto the shuttle to Presby (UPMC Presbyterian Hospital's nickname) where we got Colleen set up with a black wheel chair (not as cool as Colleen's red one) and heavy-duty oxygen tank for the day...first order of business, an echocardiogram, which Colleen said was one of the easy ones...next a 3-hour lung transplant orientation (Colleen and I asked the most questions)...then a pulmonary function test, which also didn't hurt...and finally, at 5 pm, we met with John McDyer, MD...there's not exactly a lung transplant honcho here, but he comes closest and is the Johns Hopkins contact who agreed to see Colleen earlier than otherwise would have happened...
Monday, February 11, 2013
Sunday, February 10, 2013
dateline february 10 2013 family house room 603 pittsburgh pa 21:40 hours...
I lie in my single bed and Colleen is tucked into hers next to mine, contentedly watching Downton Abbey...for those of you who don't know me, I am Colleen's sister Mignon...she has authorized me to contribute to her blog, so here I am. Rest assured, however. Colleen is its principal and primary author. I am a companion voice, a scribe, if you will.
we're both exhausted...not from the six-hour drive on the old Pennsylvania Turnpike to get here from the Jersey shore...that was quite glorious with sun, farms, rolling valleys, dramatic mountain tunnels, and rest stops where I got to push Colleen in the wheelchair for the first time and with no forethought whatsoever found myself spinning her around and saying, I confess, "Whee"...so as not to embarrass Colleen I had to restrain myself from bursting at full-throttle wheelchair speed through the double glass doors of the food court...
Colleen wasn't altogether innocent, however. Once inside, where did she direct me to take us? Straight to the Auntie Annie counter where she ordered a soft pretzel and (listen to this, Kim) a Diet Coke! To be fair, the pretzel was salt free and whole grain, the Diet Coke a "small." So what was I to do? To the counter girl I said, "Make that two," then added, "But make mine a large Diet Coke."
who's influencing who here? the "nurse" is falling down on her job and joining the "patient" in devil-may-care disobedience to "good healthy choices."
I've got to say, though, that as we zoomed back onto the highway eating our just-out-of-the-oven whole-grain soft pretzels, we were pretty darn happy and shared back and forth to each other, "Um, these are really good; Yes, these are really good" Um...Um...Um...
so we just cruised on down the open road toward "Deer Hunter" country...few cars...some trucks...no obstacles...
the exhaustion hit after arriving at our destination and having to acclimate to the place where we'll be living for the week, accommodations affiliated with the University of Pittsburgh Medical Center but a minute away...so there was all the unpacking and so forth...finding our assigned food cubby and refrigerator in the communal kitchen...securing a parking space assignment on the premises...
we ate some lettuce and cookies for dinner, chatting with other residents and a bevy of genuinely cheerful volunteers, many of them fresh-faced pre-med students at the University of Pittsburgh...
our teeth now brushed, Downton Abbey almost over, we'll be turning out the light soon...
we like our room...
our two alarm clocks, for good measure, are set for 6:30 am...the shuttle to Colleen's first appointment leaves at 8:11 am...
as you know, tomorrow is the first day of Colleen's 5-day lung transplant evaluation...
signing off
I lie in my single bed and Colleen is tucked into hers next to mine, contentedly watching Downton Abbey...for those of you who don't know me, I am Colleen's sister Mignon...she has authorized me to contribute to her blog, so here I am. Rest assured, however. Colleen is its principal and primary author. I am a companion voice, a scribe, if you will.
we're both exhausted...not from the six-hour drive on the old Pennsylvania Turnpike to get here from the Jersey shore...that was quite glorious with sun, farms, rolling valleys, dramatic mountain tunnels, and rest stops where I got to push Colleen in the wheelchair for the first time and with no forethought whatsoever found myself spinning her around and saying, I confess, "Whee"...so as not to embarrass Colleen I had to restrain myself from bursting at full-throttle wheelchair speed through the double glass doors of the food court...
Colleen wasn't altogether innocent, however. Once inside, where did she direct me to take us? Straight to the Auntie Annie counter where she ordered a soft pretzel and (listen to this, Kim) a Diet Coke! To be fair, the pretzel was salt free and whole grain, the Diet Coke a "small." So what was I to do? To the counter girl I said, "Make that two," then added, "But make mine a large Diet Coke."
who's influencing who here? the "nurse" is falling down on her job and joining the "patient" in devil-may-care disobedience to "good healthy choices."
I've got to say, though, that as we zoomed back onto the highway eating our just-out-of-the-oven whole-grain soft pretzels, we were pretty darn happy and shared back and forth to each other, "Um, these are really good; Yes, these are really good" Um...Um...Um...
so we just cruised on down the open road toward "Deer Hunter" country...few cars...some trucks...no obstacles...
the exhaustion hit after arriving at our destination and having to acclimate to the place where we'll be living for the week, accommodations affiliated with the University of Pittsburgh Medical Center but a minute away...so there was all the unpacking and so forth...finding our assigned food cubby and refrigerator in the communal kitchen...securing a parking space assignment on the premises...
we ate some lettuce and cookies for dinner, chatting with other residents and a bevy of genuinely cheerful volunteers, many of them fresh-faced pre-med students at the University of Pittsburgh...
our teeth now brushed, Downton Abbey almost over, we'll be turning out the light soon...
we like our room...
our two alarm clocks, for good measure, are set for 6:30 am...the shuttle to Colleen's first appointment leaves at 8:11 am...
as you know, tomorrow is the first day of Colleen's 5-day lung transplant evaluation...
signing off
Saturday, February 9, 2013
Off To The Iron City
UPMC
To see the Wizards, here's one:
John McDyer, MD
Guess where he's from? Naturally, the Garden State.
These last have been hectic days, but the weather spared us and Mignon got here safely. Thanks, Nemo. I'm so happy she's here. I can let go a bit. The schedule of events at the University of Pittsburgh hospital finally arrived (in the nick of time) and the week is full. There was a lot of information and also papers to fill out, but all the details were checked and re-checked by my staff (Camille and Mignon). All of it's done, so the car ride should be full of good tunes, snacks we shouldn't be eating, and anything else that doesn't deal with medical stuff. We'll have plenty of days of that. Yet, I still feel a wee bit anxious about the trip. After all the planning, it's finally here. I've had so much support and well wishes from so many special people, my heart is full. Slowly, "In and Out, another part of the journey begins and I take all of your energy with me.
The line is lookin' good.
Thursday, February 7, 2013
The Ducks Break Ranks
Katherine, it turns out, had given me the wrong directions for the O2 form Leslie had just faxed at Staples. And Caitlin didn't mail the packet that needed to be here prior to leaving for Pittsburgh on Sunday. The agenda for next week's multiple appointments is not quite lined up. Leslie goes back to Staples with changes to re-fax and runs into fax problems. Katherine's sorry. Leslie runs to get her kids from school for haircuts. So much for R & R.
I am reminded of a lesson that continues to crop up in my life. We can make all the plans, expecting things to turn out according to our wishes. But as Robert Burns says to a mouse, "The best-laid schemes of mice and men oft go astray and leave us naught but grief and pain for promised joy." We have to accept that life often has a "mind of it own."
Update: Leslie was back at Staples at 8:50 this morning to re-fax. It doesn't work again. I call Katherine. AGAIN. She gives me another number. Why didn't she do that yesterday???? See what I mean!
Tuesday, February 5, 2013
Oh! That Attitude!
Yesterday, my sister took me to see my new local heart doc. We both agree that he is a good new choice, as is his nurse. As my Pulmonary Hypertension doc @ John Hopkins said, I've got to go into this evaluation process with that "can-do attitude." REALLY!!!!! Unlike me, but lately that attitude hasn't been easy to muster. However, can you imagine if the wizards said, "We're sorry, Ms. McCarthy, it wasn't your heart, lungs, esophagus, or cancer history, it was your ATTITUDE. No lungs for you." OMG! Then, the icing on the cake, I run into a "Pittsburgh Intuitive" and she pronounces that "If I had a better attitude, I would have ten more years of sunrises." OKAY! OKAY! Game time.
Time to pull out that favorite story, the ultimate success tale of optimism and hard work. Maybe I should bring a few copies to give away to the evaluation team.
Time to pull out that favorite story, the ultimate success tale of optimism and hard work. Maybe I should bring a few copies to give away to the evaluation team.
Saturday, February 2, 2013
Breathe Easy
After speaking to Karen, Caitlin, Kristin, and Katherine, I was grateful for Stephanie and Sandy. I've been three days on the case for a stationary liquid oxygen tank to be delivered to Family House in Pittsburgh. Finally, in the end, I told Katherine that I would just pay out-of-pocket. I needed the oxygen. I'd deal with insurances later. Then, she proceeds to tell me why I was having a problem. Why didn't she tell me in the beginning? Why didn't Medicare tell me when I spoke to them? UNBELIEVABLE! After telling one of my sisters the story, she went online and there it was. Lesson learned: machines are becoming smarter than some people. Next time, go online first. Well, it's done. My angst has passed.
Between this ordeal and being cooped up in the house all these days, I'm just about ready to jump out of my skin. I hope to get out today to refresh and rejuvenate.
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