Sunday, June 17, 2007
Autoimmune Cirrhosis?
Dr. Barnes brought up with me the topic of autoimmune cirrhosis with respect to possible genetic instances--since I don't have the usual symptoms, but I have very little info on my ancestors' health problems--as in the case with Dad's and my generation. most people died before the health issues we have had a chance to show themselves. Barnes obviously is an expert on PBC, but he didn't pinpoint that with me. He's waiting to find out more from tests, and apparently doesn't see a rapid change coming or he wouldn't have scheduled my next MRI and consultation with him until the middle of September. If things change though I get in touch with him. I've noticed on some sites that techology is superceding bipsy--a needle poked into the abdomen--and more reliable--like the blood tests, MRI, etc. He did say however that I'm not near liver failure at the moment. I'm seeing D. Hoynes tomorrow and we'll talk about this--I've been lax about getting the regular things done--an order for a mamogram is on my bulletin board for last December, and I didn't go back to the opthamologist for more tests like I was supposed to.
Thursday, June 14, 2007
Which is Better? The World-Class Hospital Near You--or Your Modest Local Hospital?
Something to think about when contemplating surgery or any other hospital procedure is whether a so-called "world-class" hospital is really better than your local hometown facility or the general medical center in a nearby city--like Akron for us. We live only 45 minutes from Cleveland Clinic, world famous for its state of the art medical treatment. World leaders and millionaires as well as ordinary people from all corners of the globe fly to Cleveland for treatment. It's also the go-to place for many locals and when Paul needed treatment for lung disease followed by lung cancer, the Clinic was first choice. The surgeon was top of the line and the operation a success--and yet the after care failed to impress us. Doubled with another patient in a small room after a day in the ICU, Paul was constantly exposed to people coming and going--professional and housekeeping staff attending both patients, plus friends and relatives visiting both. Who knows how many germs were walking right into the room as well.
A couple weeks later I had to rush Paul back to the Clinic where he was treated for pneumonia and kept there for several days. Hardly had we got him home than breathing difficulties, a temp of 102, and general weakness, recurred necessitating a trip in the Granger rescue unit to Medina Hospital where they eventually decided that what he had was C-Difficile, an infection contracted in hospitals! A disease specialist called in from Southwest General Hospital in South Cleveland identified the C-Diff--an infection that is virulent and often very hard to quell. Now, after a couple of weeks, Paul appears to be winning the battle and his strength is returning.
Cleveland Clinic didn't identify C-Diff. The Medina doctors did. Perhaps, because they were so focused on his lung, the Clinic did not look elsewhere to solve the problem. And Paul says the food at Medina Hospital is much better than the dreck they serve in Cleveland. Thank you Medina General Hospital!
A couple weeks later I had to rush Paul back to the Clinic where he was treated for pneumonia and kept there for several days. Hardly had we got him home than breathing difficulties, a temp of 102, and general weakness, recurred necessitating a trip in the Granger rescue unit to Medina Hospital where they eventually decided that what he had was C-Difficile, an infection contracted in hospitals! A disease specialist called in from Southwest General Hospital in South Cleveland identified the C-Diff--an infection that is virulent and often very hard to quell. Now, after a couple of weeks, Paul appears to be winning the battle and his strength is returning.
Cleveland Clinic didn't identify C-Diff. The Medina doctors did. Perhaps, because they were so focused on his lung, the Clinic did not look elsewhere to solve the problem. And Paul says the food at Medina Hospital is much better than the dreck they serve in Cleveland. Thank you Medina General Hospital!
Cirrhosis of the Liver Confirmed
Nearly a month gone since my last post. Time for an update. We are still alive. It's been two months since Paul had the cancer removed from his lung on April 15. Today it's hard to find any evidence that surgery took place--the incision is completely healed and has disappeared. But we were really such innocents when we tripped off to the Cleveland Clinic for that procedure. We anticipated that after about eight weeks of recovery, he would resume his normal life. We didn't take into account other factors but they did appear in the form of pneumonia, return trip to the Clinic, and then an ER rush to Medina Hospital for what we thought was another bout of pneumonia, only to learn (through the intelligent resources of a Southwest Hospital disease specialist) that what Paul had was C-Difficile--an aptly named infection because it's difficult to oppose--an infection contracted mostly in hospitals and passed most often by hand contact. C-Diff has a way of draining the patient's strength, stamina, and imune system and can only be combatted by one or two powerful anti-biotics. As of now though, Paul's made a lot of progress especially the last few days.
Medicare has provided him with visiting nurses and a physical therapist and they come twice a week. They report to his doctor on his progress and help him remain optimistic. Three days ago the tide seemed to be turning when he helped Philip build a railing from the house to the garage--one of those jobs he had put off for years--but really needs it now. Paul stood and supervised while Phlip did the carpentry work. We're all pleased with the result.
In the meantime, a visit to the Clinic last Friday confirmed that I do have some form of liver cirrhosis. The first sign of something wrong was from a blood test done earlier by fam physician who found elevated liver enzymes in the blood sample.Then a local specialist diagnosed from observations that it's liver cirrhosis. Also, a Clinic gastroenterologist, after doing an endoscopy, suggests in a letter to fam physicial that it's cirrhosis. Following that, Dr. David Barnes, Clinic liver and hepatitis specialist. sent a series of blood tests to the lab and read the MRI screening that seems to confirm the diagnosis. But the cause is still a mystery and more tests will be done. I'm not an alcoholic and I don't have hepatitis, and I'm not in pain. Autoimmune? Feel the same as I always have done.
The confirmation of cirrhosis stunned me to the point that I wasn't too swift in asking questions, but as soon as I hit the highway questions came up in my mind thick and fast. I was able to reach Dr. Barnes over the next couple of days and he was able to set my mind at rest to a large extent. Here are the things we discussed:
Liver cirrhosis doesn't equate with liver failure. I could die of something else before liver failure caught up with me.
He will continue to work and follow it.
Pain isn't typical.
Will arrange for a vaccination against hep A and B.
A biopsy can be given--it's the gold standard for diagnosis but he prefers not to unless necessary.
A cirrhotic lung's tissue is scarred. the tissue separates into nodules--spheres--looks like marbles in a bag.
Liver transplant at my age is not an option, although I got the feeling that he doesn't rule it out. I have a feeling though that the liver has to have failed before they do that?
Medicare has provided him with visiting nurses and a physical therapist and they come twice a week. They report to his doctor on his progress and help him remain optimistic. Three days ago the tide seemed to be turning when he helped Philip build a railing from the house to the garage--one of those jobs he had put off for years--but really needs it now. Paul stood and supervised while Phlip did the carpentry work. We're all pleased with the result.
In the meantime, a visit to the Clinic last Friday confirmed that I do have some form of liver cirrhosis. The first sign of something wrong was from a blood test done earlier by fam physician who found elevated liver enzymes in the blood sample.Then a local specialist diagnosed from observations that it's liver cirrhosis. Also, a Clinic gastroenterologist, after doing an endoscopy, suggests in a letter to fam physicial that it's cirrhosis. Following that, Dr. David Barnes, Clinic liver and hepatitis specialist. sent a series of blood tests to the lab and read the MRI screening that seems to confirm the diagnosis. But the cause is still a mystery and more tests will be done. I'm not an alcoholic and I don't have hepatitis, and I'm not in pain. Autoimmune? Feel the same as I always have done.
The confirmation of cirrhosis stunned me to the point that I wasn't too swift in asking questions, but as soon as I hit the highway questions came up in my mind thick and fast. I was able to reach Dr. Barnes over the next couple of days and he was able to set my mind at rest to a large extent. Here are the things we discussed:
Liver cirrhosis doesn't equate with liver failure. I could die of something else before liver failure caught up with me.
He will continue to work and follow it.
Pain isn't typical.
Will arrange for a vaccination against hep A and B.
A biopsy can be given--it's the gold standard for diagnosis but he prefers not to unless necessary.
A cirrhotic lung's tissue is scarred. the tissue separates into nodules--spheres--looks like marbles in a bag.
Liver transplant at my age is not an option, although I got the feeling that he doesn't rule it out. I have a feeling though that the liver has to have failed before they do that?
Tuesday, May 22, 2007
"I've Already Decided to Admit You to the Clinic"
I'm sitting on a bench in warm spring sunshine outside the Crile Building and while waiting for the valet-parking guy to bring my car so I can drive home after visiting Paul in the H Building, I think about the worries I've had for him since he came here last Sunday (the 20th) when his situation seemed life-threatening. There's a little green park across the way with a paved walk bordered with little flowering trees and it's the only pretty thing in sight. To look at it is to be consoled. All the rest as far as I can see is huge construction jobs with cranes poking the skyline as the Cleveland Clinic continues to expand in all directions.
We're learning about illness as we're going along because until recently nothing really serious has happened to us until Paul learned he had a cancer growing in his dilapidated lung. Hospitals haven't been high on our list of visits. The lung disease until now hasn't stopped him from enjoying life's pursuits and ironically just before the operation he was particularly vigorous. The op put paid to that, as was expected, but unexpected were the complications that have since arisen.
Last Friday (18th) Paul developed congestion, sniffles and a mild temperature. When Cheryl, the physical therapist visited in the afternoon she noticed that the vigor he had on Wednesday had gone away and he couldn't manage her very easy exercises, and when in the evening he felt even worse, I decided to get him to the Medina Hospital E.R. where after the usual triage wait--about an hour--they put him to bed, gave him oxygen, and set about putting him through every test and procedure possible, including a multitude of blood works, x-rays, Cat scan, eko cardiogram, etc. But after all that the dr. in charge decided not to admit him, because she could only establish that he had some fluid near the incision area--but not pneumonia. Seemed strange to me that she wasn't ready to anticipate its development.
Saturday the 19th at home was miserable as Paul felt no better, and in the middle of the night he fell on the floor as he got out of bed to go to the bathroom. So early Sunday morning I sped him up to Cleveland and the Clinic's ER. There they immediately put him to bed and a doctor examined him right away. Again he went to X-ray, but the doctor said to us, "I don't really care care what the X-ray reveals. I've already decided to admit you. Obviously you are ill and need our help." Dr. Wilson seemed very young (as most of them do these days in our old eyes) but she spoke with a confidence that speaks volumes about the Cleveland Clinic.
So by early Sunday afternoon Paul was installed in a room in the H Building and hooked up immediately to IVs feeding antibiotics straight into his veins and I returned home with big feelings of relief that he was in the best hands possible. Never again will I take him into Medina ER. Medina is excellent for non life-threatening events, and the staff are kind and competent, but for Paul, with the very first suspicious signs, he'll be on his way back to Cleveland. Live and learn. Or, perhaps, Learn and Live!
Now it's Tuesday evening and what a difference two days have made. He has come a long way, even from yesterday when he needed two people to help him walk a few steps to being able to walk on his own for a few yards. He's become interested in his fellow patients (two in a room) and the unusual cases they represent and enjoys every meal that's put in front of him.
His lead doctor told him that late on the night he was admitted a team of doctors gathered to discuss approaches to his case (sort of like the doctors in "House M.D." I gather.) The lead is Ves Dimov, M.D. and a quick look at his bio on the Clinic's website tells that he's from Sofia, Bulgaria and one of his interests is perioperative medicine--a specialty concerned with what can happen "around" an operation. He also calls himself a "hospitalist" and I must look that up because it's a new word to me. Not only do patients come from around the globe, but the medical staff does as well.
To be continued.......
We're learning about illness as we're going along because until recently nothing really serious has happened to us until Paul learned he had a cancer growing in his dilapidated lung. Hospitals haven't been high on our list of visits. The lung disease until now hasn't stopped him from enjoying life's pursuits and ironically just before the operation he was particularly vigorous. The op put paid to that, as was expected, but unexpected were the complications that have since arisen.
Last Friday (18th) Paul developed congestion, sniffles and a mild temperature. When Cheryl, the physical therapist visited in the afternoon she noticed that the vigor he had on Wednesday had gone away and he couldn't manage her very easy exercises, and when in the evening he felt even worse, I decided to get him to the Medina Hospital E.R. where after the usual triage wait--about an hour--they put him to bed, gave him oxygen, and set about putting him through every test and procedure possible, including a multitude of blood works, x-rays, Cat scan, eko cardiogram, etc. But after all that the dr. in charge decided not to admit him, because she could only establish that he had some fluid near the incision area--but not pneumonia. Seemed strange to me that she wasn't ready to anticipate its development.
Saturday the 19th at home was miserable as Paul felt no better, and in the middle of the night he fell on the floor as he got out of bed to go to the bathroom. So early Sunday morning I sped him up to Cleveland and the Clinic's ER. There they immediately put him to bed and a doctor examined him right away. Again he went to X-ray, but the doctor said to us, "I don't really care care what the X-ray reveals. I've already decided to admit you. Obviously you are ill and need our help." Dr. Wilson seemed very young (as most of them do these days in our old eyes) but she spoke with a confidence that speaks volumes about the Cleveland Clinic.
So by early Sunday afternoon Paul was installed in a room in the H Building and hooked up immediately to IVs feeding antibiotics straight into his veins and I returned home with big feelings of relief that he was in the best hands possible. Never again will I take him into Medina ER. Medina is excellent for non life-threatening events, and the staff are kind and competent, but for Paul, with the very first suspicious signs, he'll be on his way back to Cleveland. Live and learn. Or, perhaps, Learn and Live!
Now it's Tuesday evening and what a difference two days have made. He has come a long way, even from yesterday when he needed two people to help him walk a few steps to being able to walk on his own for a few yards. He's become interested in his fellow patients (two in a room) and the unusual cases they represent and enjoys every meal that's put in front of him.
His lead doctor told him that late on the night he was admitted a team of doctors gathered to discuss approaches to his case (sort of like the doctors in "House M.D." I gather.) The lead is Ves Dimov, M.D. and a quick look at his bio on the Clinic's website tells that he's from Sofia, Bulgaria and one of his interests is perioperative medicine--a specialty concerned with what can happen "around" an operation. He also calls himself a "hospitalist" and I must look that up because it's a new word to me. Not only do patients come from around the globe, but the medical staff does as well.
To be continued.......
Wednesday, April 25, 2007
Good Recovery for Paul After Lung Cancer Surgery
Paul is showing a very good recovery today after undergoing four hours' surgery at the Cleveland Clinic yesterday. This morning his color was good and he chatted with Philip, Kim, and me quite readily. He asked me to print off crossword puzzles and bring them along next. This afternoon they removed him from the ICU to a room up on the ninth floor in the thoracic step-down constant nursing unit . There they will re-introduce him to getting back on his feet.
He had in effect two procedures. The first surveyed the lymph nodes in his right lung. Fortunately, they were fine. The second op opened his chest, spread apart the ribs, and removed the cancerous growth at the periphery of the left lung. In doing so, they took only ten percent-of the lung--a good outcome. Phil and Wendy spent most of the day with me yesterday and P and Kim visited this morning. We're very happy with the way things are going right now.
Because the Cleveland Clinic campus is so large I did a lot of walking yesterday and today--and don't feel any the worse for it, either! Last evening when I walked in front of the lobby of the Inter-Continental Hotel, I saw a group of people surrounding an elderly middle-eastern couple who were climbing into a large, black European-looking car. They looked very regal. (A lot of gold glistened about them). One chap in a long, black raincoat stepped menacingly toward me--a bodyguard I guess.
I fell into bed gratefully last night in the Guest House. License plates on cars in the lot came from nearly every state in the union, and while waiting around yesterday I talked with people from San Francisco, Idaho, Kentucky and places in between. I thought, well, Cleveland is a gloomy town much of the time, and the weather is nothing to write home about, but we have the Clinic right here--and that's worth a thousand blessings.
The TV in my room brought in Abu Dubai, Saudi Arabia, Kuwait--and a Syrian movie was playing on another channel.
A cousin, whose wife is recovering from a cancer removal under excellent British National Health care, expressed the following sentiments in an email today:-
"We have found that talking about the illness somehow lessens its bogeyman severity. Forgive me for doing so when you have your own concerns. "
(Thank you David. I agree and I think we share some of the same verbal genes).
Now I'm back home this evening caring for the cats. They don't seem to have missed me at all.
Love, and forgive me for running on, but it's good for my sanity and system.
Stephanie
Thursday, April 5, 2007
My Endoscopic Ultrasonography(EUS) Set for Next Monday
Sunday, February 25, 2007 around midnight, before falling asleep a very sudden feeling of nausea presented itself. That salty taste the precedes vomitting. Got to the bathroom in time for a rush of vomiting and diarrheal. Sat on the toilet with my face in a plastic bowl. Returned to bed, but repeat attacks followed. Finally only bile was left to come up. I became severely dehydrated. Paul called the Granger rescue unit to take me to Medina Hospital ER. I was there until about 11 a.m. the following day. Later I found they did an ultra sound and other tests, but because of the medication they gave me I slept through until mid-morning.
About a month earlier I had a similar attack, although not quite as severe, and went to the ER for that. Followed up with family physician, Dr. Hoynes, who suspected a flu bug going the rounds. The second attack gave him second thoughts and he recommended I see a local gastroenterologist, Dr. Bashour, in Medina.
Saw Dr. Bashour on March 6. Upon examination he said he suspected a blockage somewhere in the biliary tract--perhaps by an errant gallstone. (My gall bladder was removed in 1975). He also suggested possible hepatitis or even liver cirrhosis, based on my having had a blood transfusion in 1983 at the time of my hysterectomy. He wanted me to have a ERCP at Medina Hospital and set it up for March 12. I told him I had developed a sore throat and the feelings of a cold, but he paid no attention to that. He sent me to Medina Hospital for blood tests, but did not order xrays or scans. The blood tests revealed no hepatitis, but the scans revealed an enlarged liver duct.
The next day a full blown cold appeared and developed into a lung infection and near pneumonia by the end of the week. I canceled the ERCOP! I then had a chest xray done and that showed the lung infection. During the two weeks for the infection to go away I did some thinking and decided not to return to the Medina gastroenterologist and contacted the Cleveland Clinic where I got an apointment for June 4.An assistant there told me to have Dr. Hoynes order Cat scans and an ultra sound, and I had them done at Medina hospital. Dr. Hoynes said he would try to get me in sooner, but not hearing from him in two weeks I called the Clinic endoscopy department on April 3.
A very helpful assistant, Rachel, said they were booked weeks ahead. I told her how difficult it could be for me caring for Paul properly after his lung surgery--probably two weeks hence--if my gastro problem had not been dealt with. The following morning she called and said she had managed to get me a slot with Dr. Vaccaro on Monday the 9th. She said I had sounded so stressed she just had to help me out.
On the 9th in the morning I will have a consultation with Dr. Gregory Zaccaro gastroenterologist, followed by an endoscopic ultrasonography(EUS). Hopefully we will get some answers to why I had the two attacks and what's going on with my liver and esophagus.
The following day, Tuesday April 10, Paul has an all-day visit to the Clinic, seeing an oncologist, having heart stress tests, etc., and consulting with Dr. Sudish Murthy in the afternoon. Hope I'm able to go along with him.
About a month earlier I had a similar attack, although not quite as severe, and went to the ER for that. Followed up with family physician, Dr. Hoynes, who suspected a flu bug going the rounds. The second attack gave him second thoughts and he recommended I see a local gastroenterologist, Dr. Bashour, in Medina.
Saw Dr. Bashour on March 6. Upon examination he said he suspected a blockage somewhere in the biliary tract--perhaps by an errant gallstone. (My gall bladder was removed in 1975). He also suggested possible hepatitis or even liver cirrhosis, based on my having had a blood transfusion in 1983 at the time of my hysterectomy. He wanted me to have a ERCP at Medina Hospital and set it up for March 12. I told him I had developed a sore throat and the feelings of a cold, but he paid no attention to that. He sent me to Medina Hospital for blood tests, but did not order xrays or scans. The blood tests revealed no hepatitis, but the scans revealed an enlarged liver duct.
The next day a full blown cold appeared and developed into a lung infection and near pneumonia by the end of the week. I canceled the ERCOP! I then had a chest xray done and that showed the lung infection. During the two weeks for the infection to go away I did some thinking and decided not to return to the Medina gastroenterologist and contacted the Cleveland Clinic where I got an apointment for June 4.An assistant there told me to have Dr. Hoynes order Cat scans and an ultra sound, and I had them done at Medina hospital. Dr. Hoynes said he would try to get me in sooner, but not hearing from him in two weeks I called the Clinic endoscopy department on April 3.
A very helpful assistant, Rachel, said they were booked weeks ahead. I told her how difficult it could be for me caring for Paul properly after his lung surgery--probably two weeks hence--if my gastro problem had not been dealt with. The following morning she called and said she had managed to get me a slot with Dr. Vaccaro on Monday the 9th. She said I had sounded so stressed she just had to help me out.
On the 9th in the morning I will have a consultation with Dr. Gregory Zaccaro gastroenterologist, followed by an endoscopic ultrasonography(EUS). Hopefully we will get some answers to why I had the two attacks and what's going on with my liver and esophagus.
The following day, Tuesday April 10, Paul has an all-day visit to the Clinic, seeing an oncologist, having heart stress tests, etc., and consulting with Dr. Sudish Murthy in the afternoon. Hope I'm able to go along with him.
Tuesday, April 3, 2007
Paul's Visit to the Cleveland Clinic--April 2, 2007
Yesterday, April 2,we kept a full day's worth of appointments at the Clinic.
As it looks now, Paul will probably undergo lung surgery within the next two or three weeks at the Clinic's hospital.
Yesterday's tests included a molecular imaging procedure in the nuclear medicine department at the Main Hospital followed by a CAT scan of his brain in the radiology department . The afternoon was taken up first with three pulmonary function tests in the Crile building including a walking function that showed a need for oxygen, which the technician who walked with him supplied.
In the latter part of the afternoon we visited first Dr. Sudish C. Murthy, thoracic surgeon, and later Dr. Gildea, pulmonary disease specialist--he has been seeing Paul since 2004. Both have extensive biographies online at the Clinic website and are regarded as tops in their fields. They were liberal with their time, friendly, compassionate, and welcomed our questions and concerns. They were the exact opposite of the stereotypical arrogant specialist one finds in literature, movies and sometimes in real life!
Both had reviewed Paul's case file and earlier scan results (done in Medina), as well as the results from the morning's tests. Murthy's first concern was finding the exact spot on the left where Paul's cancerous growth is located. (The Medina scans weren't that good, and he has ordered another scan taken at the clinic next Tuesday). The options for Paul appear either surgery or radiation, or both.
As Murthy put it, in surgery we can't give up much lung tissue for an operation, and if the growth is in the middle of the lung it will present a difficulty because not only must the growth itself be removed, there must be enough lung tissue surrounding it to ensure that the cancer is removed properly. The result could be that the whole lung might have to be removed. If the growth is near the edge of the lung, it can be removed together with surrounding tissue, but even this would take some of the lung away. Any amount of lung tissue removed is serious for a patient suffering from interstitial lung disease
Radiation can burn away the growth, but collateral damage to the lung is a possibility.
Murthy wants Paul to have another CAT done at the clinic next Tuesday--to zoom in on the growth's position--and also a heart stress test on a treadmill to gauge the ability of the heart to handle the surgery. He pointed out that whichever therapy is chosen, we mustn't do the wrong things for the right reasons. We must expect Paul to have a reasonable chance to get through the therapy and have an expectation for an effective recovery with half a lung if that's what the picture turns out to be.
Our final visit for the day to Dr. Gildea yielded a difference in opinion. He is absolutely against radiation. for Paul's diseased lung. As he put it, "it could set off a firestorm in Paul's diseased lung." But he will conference with Murthy and they will bring other specialists into the debate and will come up with their best possible option.
For surgery, Paul will be in the hospital for about a week and recuperation time will take about eight weeks.
The Clinic resembles a small city. It has its own Intercontinental Hotel (God knows how much it costs to stay there--affordable anyway or the Saudi princes who come over for their regular checkups). We took used their own bus service--the greenline, blueline and whiteline run regularly between buildings. There are also indoor skywalks between buildings and for our last appointment I pushed Paul in a wheelchair from one building to another. Parking spaces for handicapped tags are close to the building and cost just $5 for the whole day. A Bon Pan cafe in the Crile building (where the pulmonary department is located) offers delicious food all day long.
Our next step is to keep the appointments for next Tuesday (April 10) for cat scan and heart stress tests. After they've been reviewed, the doctors should be able to come up with their next step.
As it looks now, Paul will probably undergo lung surgery within the next two or three weeks at the Clinic's hospital.
Yesterday's tests included a molecular imaging procedure in the nuclear medicine department at the Main Hospital followed by a CAT scan of his brain in the radiology department . The afternoon was taken up first with three pulmonary function tests in the Crile building including a walking function that showed a need for oxygen, which the technician who walked with him supplied.
In the latter part of the afternoon we visited first Dr. Sudish C. Murthy, thoracic surgeon, and later Dr. Gildea, pulmonary disease specialist--he has been seeing Paul since 2004. Both have extensive biographies online at the Clinic website and are regarded as tops in their fields. They were liberal with their time, friendly, compassionate, and welcomed our questions and concerns. They were the exact opposite of the stereotypical arrogant specialist one finds in literature, movies and sometimes in real life!
Both had reviewed Paul's case file and earlier scan results (done in Medina), as well as the results from the morning's tests. Murthy's first concern was finding the exact spot on the left where Paul's cancerous growth is located. (The Medina scans weren't that good, and he has ordered another scan taken at the clinic next Tuesday). The options for Paul appear either surgery or radiation, or both.
As Murthy put it, in surgery we can't give up much lung tissue for an operation, and if the growth is in the middle of the lung it will present a difficulty because not only must the growth itself be removed, there must be enough lung tissue surrounding it to ensure that the cancer is removed properly. The result could be that the whole lung might have to be removed. If the growth is near the edge of the lung, it can be removed together with surrounding tissue, but even this would take some of the lung away. Any amount of lung tissue removed is serious for a patient suffering from interstitial lung disease
Radiation can burn away the growth, but collateral damage to the lung is a possibility.
Murthy wants Paul to have another CAT done at the clinic next Tuesday--to zoom in on the growth's position--and also a heart stress test on a treadmill to gauge the ability of the heart to handle the surgery. He pointed out that whichever therapy is chosen, we mustn't do the wrong things for the right reasons. We must expect Paul to have a reasonable chance to get through the therapy and have an expectation for an effective recovery with half a lung if that's what the picture turns out to be.
Our final visit for the day to Dr. Gildea yielded a difference in opinion. He is absolutely against radiation. for Paul's diseased lung. As he put it, "it could set off a firestorm in Paul's diseased lung." But he will conference with Murthy and they will bring other specialists into the debate and will come up with their best possible option.
For surgery, Paul will be in the hospital for about a week and recuperation time will take about eight weeks.
The Clinic resembles a small city. It has its own Intercontinental Hotel (God knows how much it costs to stay there--affordable anyway or the Saudi princes who come over for their regular checkups). We took used their own bus service--the greenline, blueline and whiteline run regularly between buildings. There are also indoor skywalks between buildings and for our last appointment I pushed Paul in a wheelchair from one building to another. Parking spaces for handicapped tags are close to the building and cost just $5 for the whole day. A Bon Pan cafe in the Crile building (where the pulmonary department is located) offers delicious food all day long.
Our next step is to keep the appointments for next Tuesday (April 10) for cat scan and heart stress tests. After they've been reviewed, the doctors should be able to come up with their next step.
Friday, March 23, 2007
CAT Scan and Ultrasound Results
5 p.m. Before my doctor's office closed shop for the weekend, they called me with the results of my CAT scans and Ultrasound done two days ago at Medina Hospital. Some good news and possibly something less than good.
1. No sign of a straying gallstone lodged somewhere in the area of the biliary tract and pancreas.
2. No nodule or other mass in the lung. (Guess the earlier x-ray picked up something left over from the almost-pneumonia.)
3. No problem with kidneys.
4. "Enlarged duct on my liver. Biliary ductal." No mention of cyrrhosis of the liver, so that's good I hope. All of these results help confirm my suspicions that Dr. B. was hasty in his supposition that my problem was cirrhosis, possibly hepatitis, and a roving gallstone blocking the tubes. No x-ray or scans were ordered. Now I feel that his sexist remark actually saved me from going ahead with the invasive procedures he scheduled for a few days later Instead I decided to go for a second opinion at the Cleveland Clinic.
My doctor's office staff member who called me with the scan results was unable to elucidate further on enlarged liver duct condition, but I'll check with my him on Monday. Not being versed in these particulars, I did some exploring online. I had no idea what a duct on my liver looks like, how many ducts there are, how large or small, or what is their function. Trouble with many patients is they're lazy and leave the doctors to fill them in. I avoided science in college as much as I could. But I think I got a definition of sorts: the biliary ductal is the tube through which bile is moved from liver to the small kidneys. The pancreas is involved too.
So far I've looked for definitions of enlarged duct or ductal, but what I've found is mention of blocked ducts. So, does an enlarged duct do blocking? Or, is a blocked duct an enlarged one? I browsed Johns Hopkins website and Wikipedia (it posted a number of other links). Unfortunately (for me) they are mostly concerned with cancer. Frequent mentions of abdominal pain and jaundice. But I don't have these. No pain and I'm not yellow. One article gives some clarity. . I haven't taken it all in yet, will read it over tomorrow. and probably post part of it.
Adult Stem Cells and Cancer
The following from Daily Kos today is so clearly stated I'm putting it into this blog for my own reference point.
When Good Cells Go Bad
by DarkSyde
Fri Mar 23, 2007 at 04:21:01 AM PDT
Scattered throughout the body’s tissues are hordes of exquisite cellular machines called Adult Stem Cells (ACS). Each of these marvelous little cells is endowed with the power to perform astonishing works of biological magic.
When your skin is broken, adult skin stem cells at the affected site swing into action. They divide, and morph along the way. Some become sheets of cells, the precursor of new layers of skin. Others form sinuous filaments that wind through and in between the sheets, soon to conduct nutrients and oxygen; these will serve as capillaries. A similar process repairs other organs and tissues, liver, stomach, bone, etc. The process is regulated by untold thousands of biochemical handshakes between each microscopic player, as they grow from individual ASC to tissue containing many different kinds of cells. It’s an amazing phenomenon, and one made all the more fascinating as it happens without any conscious thought or direction. But sometimes, it can take a sinister turn ...
If, in the journey from ASC to new tissues, a few key genes are garbled, the cell may never stop dividing. Worse still, the body’s defenses are fooled by the errant cell’s outward appearance and chemical signature. Nearby quickening cells still dutifully build blood vessels and supporting tissue to nourish the growing collection. The owner will be unaware of the tiny malfunction, until they notice a lump, or until it affects the proper operation of an organ. At which point they consult a doctor, learn the chilling diagnosis, and the battle againt cancer begins.
For some time, researchers have suspected that Adult Stem Calls might play a role on the early development of the disease. More recently, there is some evidence that not only can the malignancy be triggered by an ACS, the cancer itself can arise from a mutated stem cell, a cancer stem cell, which produces only cancerous tissue. Needless to say, even if most of the tumor is removed or shrunk, just one cancer stem cell can give rise to a new tumor. And if those cancerous stem cells drift away from the original tumor, the new cancer appears in whatever tissue the malignant cells settle:
Three years ago, Weissman discovered that mutations and rearrangements of the genomes of stem cells that give rise to all the cells of the blood can lead to some forms of leukemia. Weissman proposed that these changes could underlie the development of cancers in many tissues.
Over one-million Americans will be diagnosed with some form of cancer every year. In some cases, the struggle they will endure, the courage they will summon, is simply unimaginable. If you’ve witnessed or experienced the devastating emotional and physical roller-coaster that makes up a cancer patient’s life, you understand all too well. If not, I hope you never do.
Cancer is second only to cardiovascular disease as the leading cause of death in the US. And yet, the outlook for survivors like Elizabeth Edwards has never been brighter. New treatments are being developed and refined, and insight into the role of adult stem cells, viral infections, and other possible causes holds great promise for future generations. The disease is slowly, ever so slowly, becoming less a death sentence and more a chronic illness which can be managed, especially when caught early. Here’s to hoping that one day, in the near future, with enough funding, research, government leadership, and perhaps most importantly, affordable access to quality healthcare, all the victims of this disease can look forward to a long, healthy, and full life.
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Wednesday, March 21, 2007
Ultra Sound and CAT scans were performed today
Today I spent the morning at the radiology lab of Medina Hospital. First, at 8 a.m., I was given an ultra sound--the technician spread some jelly on my tummy and then went to work pushing buttons on a futuristic-looking machine while I followed instructions to hold my breath at times. My job was to lie still. The procedure took about 30 minutes. They reminded me I'd had an ultra sound my the second visit to the ER. It must have been simplified because I was sedated and didn't know a thing.
Next I moved on to the CAT Scan department where I was given a huge plastic container of liquid (half a gallon?) with the order to drink it down. The more I took the worse it tasted, a metallic taste overcoming the lemonade flavor that's supposed to make it palatable. Finally I told the tech I felt nauseated--one of the conditions that brought me to emergency in the first place.
Two CAT scans were necessary for the upper and lower torso. I'm familiar with such machines from watching House and seeing Hugh Laurie and assistants looking on. It's a huge donut. Instructions came in a recorded male voice, perhaps a robot, but his grammar had not been perfected. First he said, 'breathe in." Then he said, "breathe normal." He was not programmed to know that the adverb normally should modify the verb breathe. Adverbs modify verbs; adjectives modify nouns.
All was done by 10:30. I called Paul on my cell and he came to the hospital within 15 minutes. We had some soup and rolls in the cafeteria (I hadn't eaten anything since 6 p.m. the day before), followed by a little shopping.
Next I moved on to the CAT Scan department where I was given a huge plastic container of liquid (half a gallon?) with the order to drink it down. The more I took the worse it tasted, a metallic taste overcoming the lemonade flavor that's supposed to make it palatable. Finally I told the tech I felt nauseated--one of the conditions that brought me to emergency in the first place.
Two CAT scans were necessary for the upper and lower torso. I'm familiar with such machines from watching House and seeing Hugh Laurie and assistants looking on. It's a huge donut. Instructions came in a recorded male voice, perhaps a robot, but his grammar had not been perfected. First he said, 'breathe in." Then he said, "breathe normal." He was not programmed to know that the adverb normally should modify the verb breathe. Adverbs modify verbs; adjectives modify nouns.
All was done by 10:30. I called Paul on my cell and he came to the hospital within 15 minutes. We had some soup and rolls in the cafeteria (I hadn't eaten anything since 6 p.m. the day before), followed by a little shopping.
Tuesday, March 20, 2007
CAT Scans Tomorrow
Have to be up early tomorrow. Three procedures await at Medina Hospital beginning at 7:30.. Two CAT scans of my upper and lower torso and an ultra sound will look at my lungs and everything else. Should be done by 12:30.
Goodbye Local Specialist: Hello Cleveland Clinic
March 15, 2007
I've dismissed that awful doctor, canceled his appointment to do an endoscopy and am now a patient of the Cleveland Clinic. They already had me on file even including my teaching career (if you can call it that!). They must have a rule that a person accompanying a spouse to their facilities is a prime possibility for also becoming a patient in the future. Good old American hustling! First I talked to a practitioner who took down facts about my case and she was warm and sympathetic. I included the little anecdote concerning my Medina specialist and his unprofessional behavior and told her that at first I couldn't really believe what I'd heard. She said firmly, "Oh yes, he said it!" Went on to say that no doctors at the Clinic would ever say such a thing. If they did, they were outta there.
She told me to ask my family doctor to order up two CAT scans and an ultrasound at Medina Hospital, and that's what I'll be doing on Tuesday. My fam m.d.said today he'd call the clinic and try to get me earlier dates. He was shocked to hear of Dr. Bashour's outrageous remark. From now on he should refer only men to that man.
Paul's local lung man has confirmed a cancerous nodule in his lung. Very gruff about it and didn't tell him that surgery can do marvels these days. Paul came home looking very grave. "I have cancer," he said as he came through the door. Since then he's talked to his doctor at the Cleveland Clinic who was positive. "We'll snip that thing out and you should be fine," he said. Tests are scheduled for April 2 at the Clinic.
I'm now clear of the lung infection that plagued me for the last 12 days. It really laid me low. Awful congestion in lungs and nose.
I've dismissed that awful doctor, canceled his appointment to do an endoscopy and am now a patient of the Cleveland Clinic. They already had me on file even including my teaching career (if you can call it that!). They must have a rule that a person accompanying a spouse to their facilities is a prime possibility for also becoming a patient in the future. Good old American hustling! First I talked to a practitioner who took down facts about my case and she was warm and sympathetic. I included the little anecdote concerning my Medina specialist and his unprofessional behavior and told her that at first I couldn't really believe what I'd heard. She said firmly, "Oh yes, he said it!" Went on to say that no doctors at the Clinic would ever say such a thing. If they did, they were outta there.
She told me to ask my family doctor to order up two CAT scans and an ultrasound at Medina Hospital, and that's what I'll be doing on Tuesday. My fam m.d.said today he'd call the clinic and try to get me earlier dates. He was shocked to hear of Dr. Bashour's outrageous remark. From now on he should refer only men to that man.
Paul's local lung man has confirmed a cancerous nodule in his lung. Very gruff about it and didn't tell him that surgery can do marvels these days. Paul came home looking very grave. "I have cancer," he said as he came through the door. Since then he's talked to his doctor at the Cleveland Clinic who was positive. "We'll snip that thing out and you should be fine," he said. Tests are scheduled for April 2 at the Clinic.
I'm now clear of the lung infection that plagued me for the last 12 days. It really laid me low. Awful congestion in lungs and nose.
A "Funny" thing happened at the doctor's office
Thursday, March 15, 2007
A "Funny" thing happened at the doctor's office
March 15, 2007
I'm seeing Dr. Hoynes tomorrow after a week of antibiotics. Seem to be getting better though.
Paul had a fruitful talk with his Cleveland Clinic specialist a couple days ago. He was upbeat and told dad they will cut the growth out and the prospects were good. Dad felt so relieved, and became his old self again, because the Medina specialist gruffly told him he had cancer and sent him on his way without any positive words. He did suggest though checking back with the Clinic. Paul came into the living room looking grave and told me, "It's cancer." Downer! Immediately the lights came on blinking "Second Opinion" and he was so relieved after talking to Dr. Gildea and getting his take on the problem. They are scheduling him for a battery of tests in Cleveland next week.
Like Philip says, you've gotta be proactive. As for me, I too am getting a second opinion from Cleveland. The gastroenterologist in Medina left me with some very bad vibes. He seemed opportunistic--too eager to stick those probes down my throat, didn't listen to me when I said I was developing a cold and might not be ready for the hospital probes, and didn't order an x-ray. His finding seemed so extreme that even my family doctor raised his eyebrows when I told him. And his suggestion that if everything didn't go quite right, he'd "call in the gurus in the North," was weird. But not only that, he made an outrageous remark when he was examining me. He commented on my bra!! Said it was pretty. paulwas in the room but the doctor spoke softly and dad didn't hear it. I wondered if I may have misheard, but I couldn't substitute anything else, and that's what he said. When I was giving the expert who took down my info at the Clinic I told her about not quite believing what I heard. She said, "Oh yes he did!" Then said, no doctor here at the clinic would say such a thing--he'd be outta there in a hurry. She said to ask the fam doctor to order a CAT scan and ultra sound. Good thing I'll be seeing him tomorrow.
I'll be having tests too at the clinic and also seeing two sub-specialists (that's the beauty of the clinic--they micro-specialize)--one in gastroenterology and the other in the liver field.
And oh, Betty Hutton died at 86. Doubt if many boomers know of her, but her performance as Annie Oakley in the movie Annie Get Your Gun lit up the screen. She once was the most popular screen star of the year, and Time magazine had a cover story on her. Apart from fleeting fame she had a sad life, but was rescued and actually went to college late in life (had dropped out in fifth grade to go to work) and became a drama teacher. She was beautiful, sang and danced well, and was funny. Robert Osborne ran an interview he did with her a few years ago. Brought tears to one's eyes.
A "Funny" thing happened at the doctor's office
March 15, 2007
I'm seeing Dr. Hoynes tomorrow after a week of antibiotics. Seem to be getting better though.
Paul had a fruitful talk with his Cleveland Clinic specialist a couple days ago. He was upbeat and told dad they will cut the growth out and the prospects were good. Dad felt so relieved, and became his old self again, because the Medina specialist gruffly told him he had cancer and sent him on his way without any positive words. He did suggest though checking back with the Clinic. Paul came into the living room looking grave and told me, "It's cancer." Downer! Immediately the lights came on blinking "Second Opinion" and he was so relieved after talking to Dr. Gildea and getting his take on the problem. They are scheduling him for a battery of tests in Cleveland next week.
Like Philip says, you've gotta be proactive. As for me, I too am getting a second opinion from Cleveland. The gastroenterologist in Medina left me with some very bad vibes. He seemed opportunistic--too eager to stick those probes down my throat, didn't listen to me when I said I was developing a cold and might not be ready for the hospital probes, and didn't order an x-ray. His finding seemed so extreme that even my family doctor raised his eyebrows when I told him. And his suggestion that if everything didn't go quite right, he'd "call in the gurus in the North," was weird. But not only that, he made an outrageous remark when he was examining me. He commented on my bra!! Said it was pretty. paulwas in the room but the doctor spoke softly and dad didn't hear it. I wondered if I may have misheard, but I couldn't substitute anything else, and that's what he said. When I was giving the expert who took down my info at the Clinic I told her about not quite believing what I heard. She said, "Oh yes he did!" Then said, no doctor here at the clinic would say such a thing--he'd be outta there in a hurry. She said to ask the fam doctor to order a CAT scan and ultra sound. Good thing I'll be seeing him tomorrow.
I'll be having tests too at the clinic and also seeing two sub-specialists (that's the beauty of the clinic--they micro-specialize)--one in gastroenterology and the other in the liver field.
And oh, Betty Hutton died at 86. Doubt if many boomers know of her, but her performance as Annie Oakley in the movie Annie Get Your Gun lit up the screen. She once was the most popular screen star of the year, and Time magazine had a cover story on her. Apart from fleeting fame she had a sad life, but was rescued and actually went to college late in life (had dropped out in fifth grade to go to work) and became a drama teacher. She was beautiful, sang and danced well, and was funny. Robert Osborne ran an interview he did with her a few years ago. Brought tears to one's eyes.
Blood Test Results
Phone calls this morning from primary physician's office and specialist's office that blood tests show no Hepatitis A, B, or C is present. Liver enzymes are mildly high. Continuing with one a day Avelox until Friday--mucus ssstill present in lungs..
Cleveland Clinic: Second Opinion
On March 7 the sore throat was developing into a cold but by Friday, March 9 I returned to my primary care physician PCP who sent me to the hospital for a chest x-ray and gave me a course of antibiotics to take for seven days. (Avelox). I waited at the x-ray center after the pictures were taken and results faxed to my doctor. He called me on the x-ray office phone and said the diagnosis was a lung infection that would become pneumonia if not treated--and I could not possibly have the surgery scheduled for the 12th. The date has since been changed to Thursday, March 22nd.
Now it's March 15, ten days from when my sore throat developed. The Avelox seemed to be very slow working and during that time I felt very little relief from nasal and chest congestion. Yesterday pcp gave me another prescription and today (whether it's just my body recovering or the new prescription) I'm feeling an improvement.
Called Cleve Clinic Gastroenterology today 1-216-444-6521 to request a second opinion on Dr. Bahsour's opinion and spoke to a woman named Lynn at the Call Center. .I told her Dr. B suspected a gall stone and liver cirrhosis based on evidence, and he gave me an appointment for the 12th for EROC and an endoscopy. Later postponed because of lung infection). She asked if he ordered x-rays and other tests, and told her he ordered blood tests but not an x-ray. Swelling, yellow skin and eyes, etc). She requessted that Dr. Hoynes order an untra sound, cat scan of the bile duct--he will clearly know what's required. After they have received the records, they will make an appointment to see a sub-specialist as quickly as possible. She advised me to hand carry the records to their department.
She made an appointment to see Dr. David Barnes on June 7 at 9:45 a.m. He's a liver specialist. I'm also on the wait list. Will send me a reminder of the appointment. I'm already in their computer with SS number and even my professional bio!
Now it's March 15, ten days from when my sore throat developed. The Avelox seemed to be very slow working and during that time I felt very little relief from nasal and chest congestion. Yesterday pcp gave me another prescription and today (whether it's just my body recovering or the new prescription) I'm feeling an improvement.
Called Cleve Clinic Gastroenterology today 1-216-444-6521 to request a second opinion on Dr. Bahsour's opinion and spoke to a woman named Lynn at the Call Center. .I told her Dr. B suspected a gall stone and liver cirrhosis based on evidence, and he gave me an appointment for the 12th for EROC and an endoscopy. Later postponed because of lung infection). She asked if he ordered x-rays and other tests, and told her he ordered blood tests but not an x-ray. Swelling, yellow skin and eyes, etc). She requessted that Dr. Hoynes order an untra sound, cat scan of the bile duct--he will clearly know what's required. After they have received the records, they will make an appointment to see a sub-specialist as quickly as possible. She advised me to hand carry the records to their department.
She made an appointment to see Dr. David Barnes on June 7 at 9:45 a.m. He's a liver specialist. I'm also on the wait list. Will send me a reminder of the appointment. I'm already in their computer with SS number and even my professional bio!
Saturday, March 17, 2007
A Diary of Maladies
Sunday, March 11, 2007
Senior Citizen, having enjoyed good health all her life, finds luck changing at age 75. Memory is good but perhaps can be boosted by keeping a diary of maladies that have shown up lately. So here goes.
First, frequent insomnia now after formerly being someone who could go off to sleep at the drop of a hat. It's 3:24 a.m.this morning (first day of the change to daylight savings time,) and here I am wide awake. Instead of tossing around in bed with my thoughts refusing to settle, I'm up and on the computer. Usually when I return to bed I get 3-4 good hours of sleep.
Second, since late December I've been twice carted off to the ER around midnight after suffering severe intestinal attacks. Just after Christmas a slight nausea turned into violent vomiting followed by uncontrollable shivering. My primary care physician (PCP) decided I was I was suffering from a virus. A second attack came on Sunday, March 1 when after midnight another series of even more violent vomiting and this timediarrhea as well I was emptied out and left dehydrated and empty. Another trip to the ER resulted in numerous tests including an MRI. The relaxants piped into my veins put me into a deep sleep and I didn't become aware until the next day at 11 a.m. This emergency prevented my spouse from keeping an appointment for lung biopsy surgery in the self-same hospital Two days later, my PCP said he suspected something other than a virus and referred me to a local gastroenterologist (GE). He gave me an appointment for March 6.
On March 6 I woke up with a sore throat, but the GE examined me, asked numerous questions about my medical history and general health. His working hypothesis is that a straying gallstone has lodged itself at a junction preventing the juices flowing properly. This amazed me because my gall balder had been removed in 1974. Other evidence presenting itself at that interview suggested to the specialist that I also may have a liver problem, and he mentioned cirrhosis of the liver.
The upshot was to set a date for exploratory surgery--Monday, March 12.
On March 7 the sore throat was developing into a cold but by Friday, March 9 returned to my PCP who sent me to the hospital for a chest x-ray and gave me a course of antibiotics to take for seven days. (Avelox). I waited at the x-ray center after the pictures were taken and results faxed to my doctor. He called me on the x-ray office phone and said the diagnosis was a lung infection that would become pneumonia if not treated--and I could not possibly have the surgery scheduled for the 12th. The date has since been changed to Thursday, March 22nd.
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