
My grandmother "Nanny" as a fashionable young lady in the mid 1920's
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Dear Doctors,
My name is Joel Gillespie. My mother. Mrs. Maurine Gillespie, was a patient of yours. As you know she passed away on
On behalf of myself and my three siblings, I want to express my gratitude for the care extended to my mom by all of her doctors and nurses during this terrible ordeal. We know that everyone tried very hard to get my mom through her ordeal, and that you are saddened by her death, as we are.
On our side, four adult children have lost a dear mother, and eleven grandchildren a dear grandmother. As we go through the process of grieving our mother’s loss, we find that that grieving process is somewhat hindered by the questions that accumulated along the way. It was often hard to have time to see and talk doctors, and have concerns and questions addressed. Some of these questions just sort of hang there without resolution, and this makes it harder to move on.
As we deal with our own grief and look to a future without our mother and our children’s grandmother, it would be most helpful for us to have as much understanding as possible about the course of events which led to her death. These questions may well point to our own medical ignorance. We simply don’t have adequate grasp of some of the anatomical issues and physiological processes and treatment realities involved. Some of our questions have to do with simply wishing to understand better how one thing led causally to another. Other questions have to do with why certain treatment decisions were made, and whether certain events could have been foreseen. Finally, some questions have to do with whether risks were adequately outlined prior to her surgery.
We would like to would request an audience with the various physicians who attended to our mother during her last weeks of life and have them answer for us as many of these questions as they could. This would be advantageous to our moving forward. We will be in touch regarding setting up such a meeting. Perhaps it would be good to meet with Dr. Orlandini, her primary cardiologist, Dr. Beard who preformed the ablation, and one member of the surgery team who worked with my mom, perhaps Dr. Sutton Jr. who met with my mom before the surgery.
In order that you might have opportunity to remember the details, and in order for such a meeting to be as fruitful as possible, I am going to try my best to articulate the questions as they stand as of this writing. I will try to write these out as straightforwardly as I can, and of course you must forgive any medical naivete which may reveal itself as I go along. I am writing rather clinically and ask you not to read tone or anything into the questions. There is no tone intended at any point.
Our first question has to do with the decision to take my mother off the medications prior to the ablation procedure. We understand that she needed to be symptomatic in order for this procedure to be successful. However, in going off the medications several days before the procedure, my mom was left in a very vulnerable state. He tachycardia intensified to the point that she was admitted to the hospital with a pulse in excess of 200 and a dangerously reduced blood pressure. Her lungs had significant fluid build up. The emergency room doctor noted that she was in failure. She likely had been in this state for some time. In our judgment she should have been more closely monitored during this period of time. Could such an extended period of time with such elevated heart rate so stressed her heart and heart valves that it contributed to her mitral valve failure?
In the ablation procedure the doctor identified two primary “bad” pathways. One of these was close to the “good” sinus node pathway. Our understanding is that in trying to knock out the bad pathway the good pathway was impacted, which ultimately led to the necessity of getting a pacemaker. In other words, he missed. Is it normal to try to take out a bad pathway so near to good pathway?
The process of getting her pacemaker to work properly was quite frustrating for my mom and for us. The pacemaker could not be made to stick. It kept coming unhooked from her heart tissue and then just dangling inside her heart, causing her heart to beat in all kinds of irregular ways. t would help us to understand better what sorts of things can contribute to such difficulty, and whether any of this could have been related to her subsequent mitral valve problem. In particular, could problems such as perhaps improperly coordinated contractions of her atriums and ventricles have contributed to her mitral valve failure?
At one point one of the nurses made comment about something “funky” having gone during the pacemaker procedure. We are curious as to what this might have been.
It seems probable now, after the fact, that the problem with getting the pacemaker leads to “stick” had to do with the friability of her heart muscle tissue, a friability caused undoubtedly by her long term use of prednisone for her late onset asthma. It was, in the end, this tissue friability that killed her, and which we believe should have been predicted. Perhaps the pacemaker problems in addition to the fact of her long term use of prednisone should have caused increased concern about her surgical risk after the mitral valve blew out.
One thing that has concerned us as well is the fact that there was knowledge of a “murmur” of some kind noted in the primary cardiologist’s records both in July and December. My mom had no history of heart murmur or of mitral valve problems. Should not this murmur have been checked out earlier through ultrasound? Could it have been early signs of valve trouble and could this have impacted the decision to proceed with the ablation? Did Dr. Beard know about this murmur?
After the catherization procedure revealed the blockages and confirmed the ultrasound’s finding regarding her mitral valve, it was explained by the surgeon that my mom indicated for valve replacement and bypass surgery. Risks were outlined to her as 8-10%, with the usual risks of stroke and heart attack (etc.) mentioned. Because of her history of asthma and prolonged use of prednisone the issues both of her lung capacity and problems with tissue healing were discussed, which also imposed risk as to her recovery, risks which were also rated at 8%. Her decision to have the surgery was difficult and calculated based on the information she received from the doctors prior to surgery.
After my mother managed to get through the bypass/valve replacement surgery and off the heart lung machine, the surgeon commented that when he got into her heart he found that its anatomy was very unusual, that the walls of the heart were thickened and that there were fatty deposits like little tumors in the heart, and that as a result it had been quite hard to get the tissue valve seated. Because of the time spent attempting to place the tissue valve, and then the additional time spent putting in the mechanical valve, she was then on the heart/lung machine much longer than was good, which had terrible consequences for her eventual recovery, particularly the four days spent on the respirator due to having to wait three days to close up her chest.
Prior to her open heart surgery, my mom had an ultrasound taken in the emergency room (which I refer to below as the “external” ultrasound). This ultrasound showed evidence of valve problems. The catherization procedure undergone the next day also showed evidence of such mitril valve problems in addition to coronary artery blockages. In addition, in the period of time after diagnosis of these problems and the actual surgery, she had on at least one occasion, perhaps two, taken the test whereby she swallowed the ultrasound camera which then enabled the doctors to see the back side of her heart. I refer to this as the internal ultrasound. She may have had another external ultrasound done as well.. Were not the external and internal ultrasounds intended to enable the surgeons to see her heart more clearly, and would not they have enabled them to understand her heart’s “unusual” anatomy. Could they enabled the doctors to make a different call regarding the decision to go with the tissue as opposed to the mechanical valve? Would they have enabled the doctors to mention the possibility of the valve not fitting right is as one of the surgical risks and challenges, which again could have impacted the decision to have the surgery?
During the surgery, when the surgeon came out to inform the family that my mother would most likely not make it through, he spoke of the reason as being primarily the friability of her tissue which caused problems in suturing. he acted as if it would have been a miracle for anyone in her condition, given her tissue friability, to have survived a surgery of this kind, even though he had said her surgery risk factor was 8 %.
Again, our question is whether this issue of friability could have been anticipated given her long history of the use of prednisone? And if so, in laying out risks of surgery should the surgeon have mentioned to my mom and to us the possible problem of tissue friability? It never came up prior to the surgery and in discussion of risks. This is the single biggest concern we have.
Although her life would have been more limited and less active had she not had the surgery, and though in time her coronary artery likely would have closed off and she would have died of a heart attack, my mom’s week in the hospital prior to surgery proved that she could live with the valve reflux if properly monitored and if given appropriate medications. Had the surgeon mentioned the risk of suturing given a likelihood of tissue friability due to use of prednisone the decision to proceed with the surgery could have likely have been very different.
The evening before my mom died the nurses had put her on the c-pap machine to help her breathe. According to what the nurses later told us they had to take my mom right off the c-pap because her blood pressure dropped quickly. We do not understand what the relationship is between her being on the c-pap and her blood pressure dropping. How does the c-pap cause one’s blood pressure to drop? Does being on the c-pap impact or stress the heart in some way?
When we last say my mom at
After my mom died the doctor explained to us that her heart had just stopped. But it had been explained to us already by the nurse that her blood pressure had dropped, setting off the alarms, but her heart continued to beat and that she had continued to breathe, and that attempts were made to reverse or correct her blood pressure drop, and that only subsequently did her heart actually stop.
It seems to us that some event caused her blood pressure to drop as it did. Either something caused her heart to stop beating effectively (a bypass graft coming undone, the valve misfunctioning, her coronary arteries getting blocked, etc.) or something caused her to lose blood internally, such as a hemorrhage.
As far as you can know what caused her heart to stop beating effectively, and is there an identifiable cause of that, such as being put on the c-pap machine?
(Added after Mary Johnson's wise comment...If my memory serves me correctly we decided within a very short time not to pursue any sort of lawsuit. Yes, mistakes were made, but my mother also made enough mistakes in her own self care for us to blame her demise on anyone else. I think I learned three things. First, doctors, particularly surgeons, tend to be overly optimistic about what they can pull off. That can lead to unwise care decisions. Second, once you're in the hospital it is almost impossible to have a good substantial talk with a doctor (this has been verified for me as a pastor a hundreds over as I have sat with anxious families). Third, after anything goes awry, doctors are so scared of lawsuits they do not want to talk. It would allow wonderful closure for a family if a doctor could say "I'm sorry, my hand slipped and I nicked the artery" or whatever. But they can't admit to anything because of malpractice suits breathing down their necks all the time. This helps nobody. I carry no grudge about the medical care, and cherish the memory of my mother. Nor do I really await any answers. I stumbled across this and thought, well, I wrote it, I may as well publish it somewhere . Maybe someone will benefit from it. I don't know, maybe not.)
As I alluded in an earlier post, Thursday I went out for a walk after dark. For most of the walk I listened to my iPod. I was in a 70's frame of mind, so I clicked on ""Layla and Other Assorted Love Songs" by Derek and Dominos. OK, so I have been listening to this record since it was put into general release in the early 70's. For well over thirty years that record has been with me - through thick and thin.
I've always wanted to rank the songs, and hey, what is blogging for?
The story of Eric Clapton's passion for his good friend George Harrison's wife Patti Boyd is legendary, and provides much of the grist for the songs on Layla, "Layla" being Clapton's make-believe name for Patti Boyd.
From all I have read over the years Clapton was totally and completely swept up by his (then) unrequited love for Ms. Boyd, and was suffering deeply and greatly. He was a sick dog. But it made for some great songs.
"Layla" is not a polished album. It was recorded more or less live-in-studio, without a whole lot of rehearsal. Thankfully Clapton met and pulled in Duanne Allman before the recordings really got going. Their dual guitars on Layla is the stuff of legend.
Clapton has never been a really great singer, but on Layla his voice is filled with almost a desperate pathos. A few of his vocal duets with Bobby Whitlock are superb, especially on "It's Too Late" and "Little Wing." There's footage on You Tube from a pre-Duanne version of Derek and the Dominos who appeared on the Johnny Cash Show singing "It's Too Late."
This is manly music, but manly in a manner which reveals the deepest passions of the heart and soul. Despite its rugged nature, and the genre, I find it almost symphonic in places.
Hopefully I'll fully annotate this list at some point, but for now here are my favorite tracks, from favorite to least.
And just a few notes....There have been many great versions of Hendrix's "Little Wing." This is the most unique version of all I think. It is magisterial, symphonic, and exquisitely fragile and beautiful all at once. I have no idea how they squeezed all those possibilities into that one song. The guitar solo (or duet) is as good it gets. Speaking of great guitar duets, "Have You Ever Loved a Woman" contains what is for me the greatest electric guitar duet ever. I must have listened to it a thousand times, and it still thrills me....."Bell Bottom Blues," yet another song of unrequited love, was my favorite song on the record for years. It was recorded sans Allman. Clapton spills his guts out in this song... "Do you want to see me crawl across the floor to you?" Check out the lyrics here. They'll make a grown man cry.
I've been jammin' and playing air guitar to "Key to the Highway" since forever. It's one of my favorite car songs - a great song for a long night drive, just played over and over. And I love the way Clapton sings in a lower register the first line, especially the word "key" - "I got the keeeeeeee to the highway....." It's cool.
Finally, just a word about "Layla" itself. I'll admit to having tired of the song at one point, as I think many did, though I do think Clapton's unplugged version gave new life to it. But the original song found it's way back into my heart somewhere along the way. Some of my rockin' friends don't like the long ending. I think it's my favorite part. I love good piano in a rock song, and when I was younger I picked out most of Layla. I somehow never seem to want the song to end.
Well, all for now. Here is my list:
1. Little Wing
2. Have You Ever Loved a Woman
3. Bell Bottom Blues
4. Layla
5. Key to the Highway
6. It’s Too Late
7. Nobody Knows You When You’re Down and Out
8. I Looked Away
9. Thorn Tree
10. Why Does Love Have to Be So Sad
11. I looked Away
12. Anyday
13. Keep on Growing