Saturday, October 17, 2009
Now to get everyone up to speed. We got Lynn home last Friday evening. From the time she got home, she steadily improved. I'd have to say that she was pretty much back to normal by Sunday. She was still taking the Lasik, so she was getting up during the night, but the length of time she spent sleeping got longer and longer as the week went on. We even managed to make it to church on Sunday, which lent an air of normalcy to our otherwise abnormal lives! Gary and Sharon dropped by during the day and helped out with getting the kids to school, some housework, and made some meals. I was also confident enough to take Mac to his first Cub Scout meeting on Monday night.
In general, she has been getting better and better. The persistent cough that she had that kept her up at night is now completely gone. Her endurance has also improved...before, she had to take the stairs to the second floor in two phases, resting at the landing. Well, not now. She makes it in one single trip. Her attitude is much better too - generally very positive, which is really important when it comes to overcoming cancer. We know for sure that she is going to lose her hair, so she decided to get it trimmed up now, before it all falls out. When Heidi trimmed it, it really looked good. She said that she might want to stay with that style when the whole cancer thing has run its course, and her hair comes back. This whole hair loss situation has been a lot less traumatic than last time - after all, we have already been down this road before!
Well, things were going swimmingly up until last night, that is, Friday night. It was then that Carlee developed a high fever, and could not gt back to sleep. I ran out and got some children's Tylenol, along with a thermometer (all ours were AWOL or non-working), and checked her out. It was at 102.9. However, the Tylenol managed to knock it down. Next morning, when the Tylenol ran out, the temperature started climbing again. Lynn arranged to line up an appointment at the pediatrician to see what the problem was. Susan and Amy dropped by, and Susan went with her to the doctor's.
I guess that 2009 still has some surprises in store for us, despite the fact that we thought we had seen it all. Turns out, Carlee has H1N1...yes, swine flu. And Lynn, with her severely depleted immune system, had been exposed to her continually since she got it.
On the plus side, Carlee does not seem to have a terrible case of the flu. She has the high temperature, and she has the sore throat, but the body aches, nausea, runny nose, sneezing and so on do not appear to be a problem. Also, I am here at home and can take care of her today and tomorrow, the days she is most likely to be the most ill. On the negative side, there is a really good chance that Lynn will develop a case of the flu. There is really nothing we can do about it. She had been in line to get one of the first vials of the vaccine, but if she has it already, there isn't much she can do about it. I just hope that it doesn't affect the next phase of the chemo. H1N1 runs in a 7 day cycle, and I cannot imagine that her doctors will allow her to start part 2 if she is still suffering from the flu.
If things turn out OK, the next phase of chemo will begin on Monday, October 26th. Her oncologist has set up a four day hospital stay for her for that phase. He also is working on handling the Ifex issue, and it looks like it will not be as severe next time.
Saturday, October 17, 2009
Sunday, October 11, 2009
Sunday, October 11th, 2009
Sunday Morning
Looks like another big gap - sorry all. It has been quite busy around here. The last time I wrote down something in the blog, Lynn was about half way through the chemo, and things were going well. As far as the impact on the heart is concerned, that is still the case. So far, the RICE combination has not done anything to her heart. All her vitals are good. Unfortunately, she had a side effect that was the result of the "I" in RICE. Basically, she suffered from a condition called "Neuro-toxicity". It sounds pretty bad, and it is while it lasts, but it does not cause permanent damage. Basically, as the "I" chemical breaks down (the chemotherapy chemical is called "Ifosmaide" or "Ifex"), it creates a toxic substance. If there is not enough protein in the body, specifically albumin, which binds to the chemical and allows the body to flush it out, it works its way into the nervous system. The toxic substance, chloral hydrate, incidentally, was used as a sedative years ago during surgery or as a pain blocker. The result is confusion, disorientation, and, in some cases dizziness. It has the effect of alcohol on the body. In Lynn's case, the effect was profound....I'd have to say that it was pretty much as if she had consumed about a fifth of tequila.
Yes, you can say that it hit her very hard. As the Ifex dosage continued, she got more and more confused. Eventually, she was able to tell the doctors what her name was, but that was just about it. They pointed to me, and asked her who I was, and she just gave a goofy smile. I guess it could have been worse - she could have spit at me. Sometimes, a patient's motor skills also get affected. Fortunately, that was not the case here. However, she was extremely confused and disoriented mentally. One problem associated with this was that her heart doctor, Dr. Jordan, prescribed Lasix late in the day. Lasix is a powerful fluid reduction chemical, and it makes her body flush out lots and lots of fluid...in the form of urine. That meant that she had to go to the bathroom just about every 15 minutes. And, since she really had no idea on where she was or where the bathroom was, it was quite a challenge getting her lined up properly. I got there around 2:30 PM on Wednesday, and my time from then until midnight was pretty much taken up with steering her towards the right door (she made a couple of bee-lines for the hall), making sure that she didn't bolt up and dash for the bathroom without taking her IV stand with her, or just basically giving her the proper navigational assistance needed to find the right part of the room. To her credit, she did great until right around 11PM. At that point, she made it to the bathroom, but mistook the trash can for the toilet. Not good, and here is why. As the chemotherapy chemicals work their way out of the body, they exit via, well, the urine. These chemicals are considered to be toxic substances for 48 hours after the last chemotherapy infusion...that means that the URINE is considered to be a toxic substance. Therefore, if there is a "spill", there are all kinds of strict rules in place governing how they will be cleaned up. As soon as Lynn had her difficulties, four nurses and nurse's aids descended on her room. They immediately donned haz mat style gowns, and got to work cleaning up the spill as if it was the worst nerve agent known to man. I decided, at that point, to go out and see what the night life was like near Riverside. No, actually, I stayed in the room, but retreated to the other side...no sense in getting in the way as the people who get PAID to handle this stuff went to work!
One other interesting observation - at one point, Lynn had just gone to the bathroom. However, when she was done, she made no move towards heading back to bed. She just stood in the middle of the bathroom. I said "Lynn, time to go back to bed!". She said, "I know." And, she, again, just stood there, staring at me. I waited a minute, and said, "Lynn, time to go back to sleep". She said "I KNOW!". And, yet again, stood there staring at me. Well, we went through this cycle a couple of times...she acknowledging that, indeed, it WAS time to go to bed, but that the motor activity required to make this happen was not, at that point, not an option. Finally, I grabbed her arm and said, "C'mon! Let's get to bed!" She shook herself loose and said "Get your hands off me! I KNOW!" I gather that something about the physical contact broke the spell. She gave me a look like I had just eaten the last chocolate chip cookie in the house, snarled once, and got back in bed
Around 12:00 AM, staff at the hospital told me that the worst was over, that, with the Lasix out of her system, she would probably sleep the rest of the night. I got her to go to the bathroom one last time, and then headed home. I went to work the next morning really early, then called the nurse's station. Turns out that things did NOT go as smoothly as I thought after I left...she had continued to sit up on the side of her bed, refusing to lay down. I scurried over that morning and stayed with her. She settled down some, and we managed to get her to rest. Susan, along with Gary and Sharon also came by and visited for a bit, which also helped out a lot. As the day went on, Lynn got better and better. Finally, around 4 PM, Dr. Blair told her that she could go home that night. It was a day later than we wanted, but we jumped on it. After we got done with all the details. we ended up being able to get her home by around 6:30 PM. She was still a little groggy and all, but was much better than 24 hours before.
Lynn slept OK that night, but was still restless...same story the next night. Even though she is home, she still has to deal with the periodic times she has to get up in the middle of the night to go to the bathroom. Of course, it is much better than the hospital...after all, I do not try to clean the floor at 3AM with a motorized, and very loud, floor sweeper, like they do at Riverside. However, she is still prone to getting up, at least till the Lasix is done. All in all, things are much better. Of course, we still have the prospect of having to deal with the next round of Ifex, which is scary. On the positive side, Dr. Blair has said that he will take steps to keep her albumin levels up before she gets the next hit of Ifex, and he might back off on the level of the Ifex a bit. However, we'll still want to keep it as high as possible - even though the Ifex is hard to deal with from a side effect basis, it really does a number on the nasty Lymphoma cells. The harder we can nail those guys, the better chance she has of recovering.
Looks like another big gap - sorry all. It has been quite busy around here. The last time I wrote down something in the blog, Lynn was about half way through the chemo, and things were going well. As far as the impact on the heart is concerned, that is still the case. So far, the RICE combination has not done anything to her heart. All her vitals are good. Unfortunately, she had a side effect that was the result of the "I" in RICE. Basically, she suffered from a condition called "Neuro-toxicity". It sounds pretty bad, and it is while it lasts, but it does not cause permanent damage. Basically, as the "I" chemical breaks down (the chemotherapy chemical is called "Ifosmaide" or "Ifex"), it creates a toxic substance. If there is not enough protein in the body, specifically albumin, which binds to the chemical and allows the body to flush it out, it works its way into the nervous system. The toxic substance, chloral hydrate, incidentally, was used as a sedative years ago during surgery or as a pain blocker. The result is confusion, disorientation, and, in some cases dizziness. It has the effect of alcohol on the body. In Lynn's case, the effect was profound....I'd have to say that it was pretty much as if she had consumed about a fifth of tequila.
Yes, you can say that it hit her very hard. As the Ifex dosage continued, she got more and more confused. Eventually, she was able to tell the doctors what her name was, but that was just about it. They pointed to me, and asked her who I was, and she just gave a goofy smile. I guess it could have been worse - she could have spit at me. Sometimes, a patient's motor skills also get affected. Fortunately, that was not the case here. However, she was extremely confused and disoriented mentally. One problem associated with this was that her heart doctor, Dr. Jordan, prescribed Lasix late in the day. Lasix is a powerful fluid reduction chemical, and it makes her body flush out lots and lots of fluid...in the form of urine. That meant that she had to go to the bathroom just about every 15 minutes. And, since she really had no idea on where she was or where the bathroom was, it was quite a challenge getting her lined up properly. I got there around 2:30 PM on Wednesday, and my time from then until midnight was pretty much taken up with steering her towards the right door (she made a couple of bee-lines for the hall), making sure that she didn't bolt up and dash for the bathroom without taking her IV stand with her, or just basically giving her the proper navigational assistance needed to find the right part of the room. To her credit, she did great until right around 11PM. At that point, she made it to the bathroom, but mistook the trash can for the toilet. Not good, and here is why. As the chemotherapy chemicals work their way out of the body, they exit via, well, the urine. These chemicals are considered to be toxic substances for 48 hours after the last chemotherapy infusion...that means that the URINE is considered to be a toxic substance. Therefore, if there is a "spill", there are all kinds of strict rules in place governing how they will be cleaned up. As soon as Lynn had her difficulties, four nurses and nurse's aids descended on her room. They immediately donned haz mat style gowns, and got to work cleaning up the spill as if it was the worst nerve agent known to man. I decided, at that point, to go out and see what the night life was like near Riverside. No, actually, I stayed in the room, but retreated to the other side...no sense in getting in the way as the people who get PAID to handle this stuff went to work!
One other interesting observation - at one point, Lynn had just gone to the bathroom. However, when she was done, she made no move towards heading back to bed. She just stood in the middle of the bathroom. I said "Lynn, time to go back to bed!". She said, "I know." And, she, again, just stood there, staring at me. I waited a minute, and said, "Lynn, time to go back to sleep". She said "I KNOW!". And, yet again, stood there staring at me. Well, we went through this cycle a couple of times...she acknowledging that, indeed, it WAS time to go to bed, but that the motor activity required to make this happen was not, at that point, not an option. Finally, I grabbed her arm and said, "C'mon! Let's get to bed!" She shook herself loose and said "Get your hands off me! I KNOW!" I gather that something about the physical contact broke the spell. She gave me a look like I had just eaten the last chocolate chip cookie in the house, snarled once, and got back in bed
Around 12:00 AM, staff at the hospital told me that the worst was over, that, with the Lasix out of her system, she would probably sleep the rest of the night. I got her to go to the bathroom one last time, and then headed home. I went to work the next morning really early, then called the nurse's station. Turns out that things did NOT go as smoothly as I thought after I left...she had continued to sit up on the side of her bed, refusing to lay down. I scurried over that morning and stayed with her. She settled down some, and we managed to get her to rest. Susan, along with Gary and Sharon also came by and visited for a bit, which also helped out a lot. As the day went on, Lynn got better and better. Finally, around 4 PM, Dr. Blair told her that she could go home that night. It was a day later than we wanted, but we jumped on it. After we got done with all the details. we ended up being able to get her home by around 6:30 PM. She was still a little groggy and all, but was much better than 24 hours before.
Lynn slept OK that night, but was still restless...same story the next night. Even though she is home, she still has to deal with the periodic times she has to get up in the middle of the night to go to the bathroom. Of course, it is much better than the hospital...after all, I do not try to clean the floor at 3AM with a motorized, and very loud, floor sweeper, like they do at Riverside. However, she is still prone to getting up, at least till the Lasix is done. All in all, things are much better. Of course, we still have the prospect of having to deal with the next round of Ifex, which is scary. On the positive side, Dr. Blair has said that he will take steps to keep her albumin levels up before she gets the next hit of Ifex, and he might back off on the level of the Ifex a bit. However, we'll still want to keep it as high as possible - even though the Ifex is hard to deal with from a side effect basis, it really does a number on the nasty Lymphoma cells. The harder we can nail those guys, the better chance she has of recovering.
Wednesday, October 7, 2009
October 7, 2009
Wednesday, October 7
Looks like I am procrastinating again! Sorry about the delay. Lots has been happening.
Lynn got admitted to the hospital on Monday. A room was available pretty early on, so she was there shortly after noon. Gary and Sharon took her in. She got settled in, and then the staff got started with prepping her for the first batch of chemotherapy. This one is for Ritoxin, I believe. From what I can tell, this was one that could have an effect on her heart more than the rest, so as soon as she got the drip started, the nurses monitored her vitals every 15 minutes. She was NOT on a heart monitor, however. The reason, I guess, was that the blood pressure was the biggest concern, and it could be easily checked by the staff.
Both of Lynn's doctors also came in. I got to meet her cardiac specialist, Dr. Jordan. He is a really nice guy, and has an excellent reputation. In two cases, Lynn heard from other people that he was the best in the area, so we are really glad to have him. He also has two things going for him. First, he is a Buckeyes fan...nuff said there. And, second, I am WAY cuter than he is...that means that Lynn won't get one of these dopey "Grey's Anatomy" or "Young and the Restless" things going, where she falls in love with her doctor, and jets off with him to Tortuga or the Bahamas or something.
Dr. Blair, her oncologist from the 8 years ago and who is now involved in the Lynn's sequel, also showed up. This was in spite of the fact that he had arranged for another person working his practice to come in earlier. It looks like he wanted to see how things were going for himself, which was really nice of him. He also told Lynn that she was not allowed to be sick during the first series of chemo that night...the Packers were playing the Vikings, and he did not want to be disturbed.
Getting the IV in was very difficult...the nurse could not get it right, and the tech that came in later had to try twice. To give you an idea on how screwed up her veins are, the technician said that it had been 8 months since she had to do that twice, and she puts in a LOT of IVs. Just to clarify things...that is due to the fact that her blood pressure is low, and due to the fact that earlier chemo damages veins in that way. It does NOT mean that she has been a habitual heroin user!
Well, that was around dinner time...when 7PM rolled around, they started the drip. It was going to take 4 hours...by the time 11PM rolled around, nothing noteworthy had happened - very good news indeed. That meant that her heart was handling at least the first round of the chemo like a champion.
Lynn did not get a great deal of sleep that night, though. For one thing, the staff still wanted to keep an eye on her vitals, so they were waking her up every hour or so. Then, they also wanted blood at 4:30AM (Guess they are like vampires...have to get the work done before the sun comes up!) And, she had an awful case of cold sweating all night long. That is a sign of the cancer, supposedly, but it was much more severe than usual for her, and we have got to think that the chemo had something to do with it.
Next day, things got rolling again with another couple of shots of chemo. Different ones, of course, but she got one early in the day, then another one around noon that was scheduled to last 22 hours. Again, nothing bad happened...also, exactly what we wanted to hear. It all went like clockwork. She had no side effects, other than fatigue, and that was because she could not get any sleep for all the interruptions.
Today, AGAIN, no major problems. Dr. Blair, her oncologist, has established a schedule for the chemo regimen, and she is right on target. Her heart does not appear to be having any difficulty handling the drugs, and we hope it stays that way. Two more IVs today...one went in around noon. That is a major one. She will have a 24 hour drip on that one. If that is the case, she will have had everything by early afternoon, and we can take her home.
All in all, and keeping in mind the overall situation, things are going about as good as possible. No bad side effects, no undue pain, good attitude...hope this is the way things stay. Things are definitely going ot get harder...we both remember that each round of chemo takes more and more out of you, and gets a person more and more tired. But, just seeing how well this one went, with no major side effects, is really cause for optimism. The stronger dose she can take without her heart being affected, the better it will do against the cancer cells, and the better chance she has of knocking the buggers out and getting cured.
Looks like I am procrastinating again! Sorry about the delay. Lots has been happening.
Lynn got admitted to the hospital on Monday. A room was available pretty early on, so she was there shortly after noon. Gary and Sharon took her in. She got settled in, and then the staff got started with prepping her for the first batch of chemotherapy. This one is for Ritoxin, I believe. From what I can tell, this was one that could have an effect on her heart more than the rest, so as soon as she got the drip started, the nurses monitored her vitals every 15 minutes. She was NOT on a heart monitor, however. The reason, I guess, was that the blood pressure was the biggest concern, and it could be easily checked by the staff.
Both of Lynn's doctors also came in. I got to meet her cardiac specialist, Dr. Jordan. He is a really nice guy, and has an excellent reputation. In two cases, Lynn heard from other people that he was the best in the area, so we are really glad to have him. He also has two things going for him. First, he is a Buckeyes fan...nuff said there. And, second, I am WAY cuter than he is...that means that Lynn won't get one of these dopey "Grey's Anatomy" or "Young and the Restless" things going, where she falls in love with her doctor, and jets off with him to Tortuga or the Bahamas or something.
Dr. Blair, her oncologist from the 8 years ago and who is now involved in the Lynn's sequel, also showed up. This was in spite of the fact that he had arranged for another person working his practice to come in earlier. It looks like he wanted to see how things were going for himself, which was really nice of him. He also told Lynn that she was not allowed to be sick during the first series of chemo that night...the Packers were playing the Vikings, and he did not want to be disturbed.
Getting the IV in was very difficult...the nurse could not get it right, and the tech that came in later had to try twice. To give you an idea on how screwed up her veins are, the technician said that it had been 8 months since she had to do that twice, and she puts in a LOT of IVs. Just to clarify things...that is due to the fact that her blood pressure is low, and due to the fact that earlier chemo damages veins in that way. It does NOT mean that she has been a habitual heroin user!
Well, that was around dinner time...when 7PM rolled around, they started the drip. It was going to take 4 hours...by the time 11PM rolled around, nothing noteworthy had happened - very good news indeed. That meant that her heart was handling at least the first round of the chemo like a champion.
Lynn did not get a great deal of sleep that night, though. For one thing, the staff still wanted to keep an eye on her vitals, so they were waking her up every hour or so. Then, they also wanted blood at 4:30AM (Guess they are like vampires...have to get the work done before the sun comes up!) And, she had an awful case of cold sweating all night long. That is a sign of the cancer, supposedly, but it was much more severe than usual for her, and we have got to think that the chemo had something to do with it.
Next day, things got rolling again with another couple of shots of chemo. Different ones, of course, but she got one early in the day, then another one around noon that was scheduled to last 22 hours. Again, nothing bad happened...also, exactly what we wanted to hear. It all went like clockwork. She had no side effects, other than fatigue, and that was because she could not get any sleep for all the interruptions.
Today, AGAIN, no major problems. Dr. Blair, her oncologist, has established a schedule for the chemo regimen, and she is right on target. Her heart does not appear to be having any difficulty handling the drugs, and we hope it stays that way. Two more IVs today...one went in around noon. That is a major one. She will have a 24 hour drip on that one. If that is the case, she will have had everything by early afternoon, and we can take her home.
All in all, and keeping in mind the overall situation, things are going about as good as possible. No bad side effects, no undue pain, good attitude...hope this is the way things stay. Things are definitely going ot get harder...we both remember that each round of chemo takes more and more out of you, and gets a person more and more tired. But, just seeing how well this one went, with no major side effects, is really cause for optimism. The stronger dose she can take without her heart being affected, the better it will do against the cancer cells, and the better chance she has of knocking the buggers out and getting cured.
Saturday, October 3, 2009
Saturday, October 3, 2009
October 3, 2009
As anyone can see by the date, I have, again, been missing log entries. Lots has happened in the last two weeks, most of it bad. Procrastination has always been a problem for me, and it is even worse when you have to write about things you'd rather not talk about.
Lynn got out of the hospital last week. The Lasik worked well, and they were able to get the swelling in her ankles under control, once it was administered intravenously. She got a new doctor (sorry, can't recall his name) for her heart condition, and she really likes him. He was very positive about trying to get the heart failure situation resolved, and had some ideas on how they could get her heart healing again. The main problem, he thought, was that she went off one of the meds too soon, and she need to go on it again. It had taken her blood pressure way down, and that was why she went off it.
One thing that was also done was a cat scan while she was there to check out the condition of the heart and to see what else might be going on. Unfortunately, they did not like what they saw...it looked like the lymphoma might be making a come back. At first, the idea was to take a biopsy of some of the lymph nodes, and see what came back. However, instead, they drained fluid that was building up around her lungs, about a pint, and then set up a pet scan for last Monday. The pet scan involves injecting radioactive dye into the blood stream, and then doing a cat scan. Cancer cells react differently and show up on the scan.
Since the pet scan was going to be done out-patient, Lynn got to go home early. And, the pet scan was done Monday, the 28th. Her oncologist set up a follow-up for the following Thursday, October 1st. Well, Dr. Blair had bad news for us. Her lymphoma is definitely back. Large B cell type II. It is similar to the one she had when she had cancer when she was carrying Mac, but not exactly the same. And, it is far more progressed than before. She was stage I when she had it when she was pregnant. This time, it is stage 4.
Last time she was treated with a chemotherapy mixture called "CHOP". This time, that is not an option. CHOP is too hard on the heart. This time, they will use one called "RICE" - it is easier on the heart and is still very effective. Unfortunately, there will still be a very delicate balancing act between what strength of mixture will kill the cancer, and what will adversely affect her heart. She must be int he hospital this time for at least the first batch of chemotherapy. She heads in sometime on Monday, and will be at least until Thursday. More later - Gary and Sharon are here along with Kelly.
As anyone can see by the date, I have, again, been missing log entries. Lots has happened in the last two weeks, most of it bad. Procrastination has always been a problem for me, and it is even worse when you have to write about things you'd rather not talk about.
Lynn got out of the hospital last week. The Lasik worked well, and they were able to get the swelling in her ankles under control, once it was administered intravenously. She got a new doctor (sorry, can't recall his name) for her heart condition, and she really likes him. He was very positive about trying to get the heart failure situation resolved, and had some ideas on how they could get her heart healing again. The main problem, he thought, was that she went off one of the meds too soon, and she need to go on it again. It had taken her blood pressure way down, and that was why she went off it.
One thing that was also done was a cat scan while she was there to check out the condition of the heart and to see what else might be going on. Unfortunately, they did not like what they saw...it looked like the lymphoma might be making a come back. At first, the idea was to take a biopsy of some of the lymph nodes, and see what came back. However, instead, they drained fluid that was building up around her lungs, about a pint, and then set up a pet scan for last Monday. The pet scan involves injecting radioactive dye into the blood stream, and then doing a cat scan. Cancer cells react differently and show up on the scan.
Since the pet scan was going to be done out-patient, Lynn got to go home early. And, the pet scan was done Monday, the 28th. Her oncologist set up a follow-up for the following Thursday, October 1st. Well, Dr. Blair had bad news for us. Her lymphoma is definitely back. Large B cell type II. It is similar to the one she had when she had cancer when she was carrying Mac, but not exactly the same. And, it is far more progressed than before. She was stage I when she had it when she was pregnant. This time, it is stage 4.
Last time she was treated with a chemotherapy mixture called "CHOP". This time, that is not an option. CHOP is too hard on the heart. This time, they will use one called "RICE" - it is easier on the heart and is still very effective. Unfortunately, there will still be a very delicate balancing act between what strength of mixture will kill the cancer, and what will adversely affect her heart. She must be int he hospital this time for at least the first batch of chemotherapy. She heads in sometime on Monday, and will be at least until Thursday. More later - Gary and Sharon are here along with Kelly.
Saturday, September 19, 2009
September 19, 2009
Lynn is back in the hospital...things have not been going well for her when it came to the fluid build-up. Her ankles continued to stay swollen, even after she took the Lasix, which is supposed to draw off fluids. She went ot see her family doctor, Dr. Conaway, and he decided that, due to this and some other symptoms, she needed to get admitted to Riverside. That was yesterday. She will be there for a few more days, as she has to wait until Monday to see a heart specialist. Fortunately, the increased dosage of the Lasix she has been getting has really helped out. The swelling in her ankles is all gone now. Of course, we still don't know why she has no stamina and doesn't appear to be getting better. In fact, she has actually gotten worse the last few weeks when it comes to stamina. It has become noticeable to her, and she is getting pretty tired of the situation, to say the least. The thing that makes this so frustrating is that no one can figure out what the problem is. It seems to defy description or analysis. What could be happening that will make her heart condition get worse? There doesn't seem to be any explanation for it, and all her doctors are equally baffled.
She is in room 5012 at Riverside. If anyone would like to visit, she really would enjoy the company. She will be there for another day or two, so feel free to drop by. Her cell phone number is 614-507-0653.
She is in room 5012 at Riverside. If anyone would like to visit, she really would enjoy the company. She will be there for another day or two, so feel free to drop by. Her cell phone number is 614-507-0653.
Tuesday, September 8, 2009
Cleveland Clinic and Other Events
September 8, 2009
Things continue to be interesting around here for Lynn. She continues to have difficulties catching her breath, and her stamina not only hasn't improved, it had seemed to be getting worse. Well, we found out why...her heart function, measured by the "EF" number, is now down to around 20. That means that her heart is about at 20% efficiency, roughly speaking. For most people, it's above 50. Here's how we found that out.
She had been undergoing a number of tests throughout her recovery. Unfortunately, she was not able to see her heart doctor very often, so they were kind of strung out over time. Well, she finally decided that what she needed was a good solid second opinion. Based on recovery rates of her fellow McConnell Heart Center rehab patients, she just was not getting any better. Of course, the Cleveland Clinic has an excellent reputation, so she lined up a consultation with one of their cardiac doctors. Her name is Dr. James. I took a day off and we headed up to the clinic on the 4th. The ride up was uneventful, and we had very little difficulty figuring out where to go. The campus was beautiful, and we enjoyed the place in spite of the reason why we were there.
We spent all day up there, and she got a number of tests. We met with Dr. James in the morning. She went over Lynn's medical records (all 10 lbs of them), and Lynn told her about her loss of appetite and about her high heart rate. At first, she felt that the problem might be in her lungs. So, she wanted Lynn to do a pulmonary test in addition to the other tests scheduled. She also wanted her to have another of the ultrasound tests, despite the fact that Lynn had had one not too long before. She wanted to do her own interpretation of it. We finally wrapped things up around 5PM.
We had quite a bit of company visiting over the week-end, and by the time everyone left, Lynn was pretty wiped out. We thought it was just because of all the people, but that turned out not to be the case. Today, Lynn got a call from Dr. James. It turns out that her heart function was down to 20...it had been at 30-35 in mid-August. Obviously, something is wrong, for her to have such a drop in efficiency over such a short period of time. She also told us that Lynn had developed some kind of infection somewhere in her system. This was undoubtedly picked up by some of the blood work that had been done up there. She recommended that Lynn set up an appointment with her family doctor right away, and cancel the stress test that had been scheduled for today. She also wanted to do two more testing procedures...one will be another angioplasty, this one less intrusive, which will check out part of her heart. Can't recall what the other one will be. However, we think that these can be done down here in Columbus. Then the results can be sent up to Cleveland. That way, we will not have to go up there and spend the better part of a day just getting the tests done. With the consultation, it would take two days to get through it.
One thing that is troubling about the 20 EF number is that it is at the threshold where cardiologists recommend that a pacemaker be installed. Lynn's heart rate is way too high, at 103 to 106 beats per minute, so it will not step up her rate. Rather, the way I understand it, it will activate if her heart stops beating. Yes, it is that serious. She went to see Dr. Conaway, her family physician, today, and he got her on more Lasik, to help out with the coughing. He also ran a couple of special blood tests, presumably to get some more information on whatever infection she has. Still hoping that things get better soon...the hardest part of this situation is the fact that we still don't really know why this is all happening, what exactly is wrong with her heart. Hopefully, we;ll at least get the answer to that soon, and then can proceed on some kind of strategy that will get her back up to where she was BEFORE her surgery.
Things continue to be interesting around here for Lynn. She continues to have difficulties catching her breath, and her stamina not only hasn't improved, it had seemed to be getting worse. Well, we found out why...her heart function, measured by the "EF" number, is now down to around 20. That means that her heart is about at 20% efficiency, roughly speaking. For most people, it's above 50. Here's how we found that out.
She had been undergoing a number of tests throughout her recovery. Unfortunately, she was not able to see her heart doctor very often, so they were kind of strung out over time. Well, she finally decided that what she needed was a good solid second opinion. Based on recovery rates of her fellow McConnell Heart Center rehab patients, she just was not getting any better. Of course, the Cleveland Clinic has an excellent reputation, so she lined up a consultation with one of their cardiac doctors. Her name is Dr. James. I took a day off and we headed up to the clinic on the 4th. The ride up was uneventful, and we had very little difficulty figuring out where to go. The campus was beautiful, and we enjoyed the place in spite of the reason why we were there.
We spent all day up there, and she got a number of tests. We met with Dr. James in the morning. She went over Lynn's medical records (all 10 lbs of them), and Lynn told her about her loss of appetite and about her high heart rate. At first, she felt that the problem might be in her lungs. So, she wanted Lynn to do a pulmonary test in addition to the other tests scheduled. She also wanted her to have another of the ultrasound tests, despite the fact that Lynn had had one not too long before. She wanted to do her own interpretation of it. We finally wrapped things up around 5PM.
We had quite a bit of company visiting over the week-end, and by the time everyone left, Lynn was pretty wiped out. We thought it was just because of all the people, but that turned out not to be the case. Today, Lynn got a call from Dr. James. It turns out that her heart function was down to 20...it had been at 30-35 in mid-August. Obviously, something is wrong, for her to have such a drop in efficiency over such a short period of time. She also told us that Lynn had developed some kind of infection somewhere in her system. This was undoubtedly picked up by some of the blood work that had been done up there. She recommended that Lynn set up an appointment with her family doctor right away, and cancel the stress test that had been scheduled for today. She also wanted to do two more testing procedures...one will be another angioplasty, this one less intrusive, which will check out part of her heart. Can't recall what the other one will be. However, we think that these can be done down here in Columbus. Then the results can be sent up to Cleveland. That way, we will not have to go up there and spend the better part of a day just getting the tests done. With the consultation, it would take two days to get through it.
One thing that is troubling about the 20 EF number is that it is at the threshold where cardiologists recommend that a pacemaker be installed. Lynn's heart rate is way too high, at 103 to 106 beats per minute, so it will not step up her rate. Rather, the way I understand it, it will activate if her heart stops beating. Yes, it is that serious. She went to see Dr. Conaway, her family physician, today, and he got her on more Lasik, to help out with the coughing. He also ran a couple of special blood tests, presumably to get some more information on whatever infection she has. Still hoping that things get better soon...the hardest part of this situation is the fact that we still don't really know why this is all happening, what exactly is wrong with her heart. Hopefully, we;ll at least get the answer to that soon, and then can proceed on some kind of strategy that will get her back up to where she was BEFORE her surgery.
Thursday, August 13, 2009
August 13, 2009
August 13, 2009
It's been a while since I last wrote in this blog...since Lynn looked like she was pretty much all fixed up, and since it looked at the time that she had pretty well recovered, it looked like the main reason I had been keeping the thing up and running had been done. Well, unfortunately, it just isn't the case. Lynn's arrhythmia has disappeared, for good we hope, but she's still not back to where she had been. The big issue is still the heart circulation. She has nowhere near the endurance she had previously, and has all kinds of trouble with coughing. This is due to the fact that fluids build up in her lungs, mainly because her heart cannot pump them out sufficiently. It also means that her body does not get enough blood flow, and the minute she exerts herself, she gets all out of breath and has to rest. Any kind of exertion is difficult for her. The biggest problem, though, is the coughing. It gets much worse when she lays down, and that means that when she tries to sleep, the coughing keeps her awake.
We've been going through her doctors lately...her regular doctor has been helpful, but getting in to see the specialists has been very difficult. For example, they tell her to come in for a monthly follow-up, and then cannot schedule her for 2 to 3 months. I think that this is really ironic...all the right wingers out there are slamming Obama's health care program because it will lead to rationing and will put limits to how much you can see a doctor, while Lynn is experiencing that very situation right now. Today, she got fresh Doppler done on her heart. On Monday, she will discuss the results of the test with a pulmonary specialist, one, incidentally, she should have seen weeks ago. Hopefully, they'll have some ideas on what can be done to get her felling better. The overall theme, of course, is that this is all due to the radiation she had years ago. Of course, this defies logic...if the radiation is causing all the fatigue, how come she never had that problem BEFORE the open heart procedure? How come all this started AFTER they did all the bypass plumbing work? It doesn't take a rocket scientist (or an engineer!) to know that something that was done in the operation is causing the pulmonary failure situation, not some damage from radiation applied to her back during the Reagan administration.
it
It's been a while since I last wrote in this blog...since Lynn looked like she was pretty much all fixed up, and since it looked at the time that she had pretty well recovered, it looked like the main reason I had been keeping the thing up and running had been done. Well, unfortunately, it just isn't the case. Lynn's arrhythmia has disappeared, for good we hope, but she's still not back to where she had been. The big issue is still the heart circulation. She has nowhere near the endurance she had previously, and has all kinds of trouble with coughing. This is due to the fact that fluids build up in her lungs, mainly because her heart cannot pump them out sufficiently. It also means that her body does not get enough blood flow, and the minute she exerts herself, she gets all out of breath and has to rest. Any kind of exertion is difficult for her. The biggest problem, though, is the coughing. It gets much worse when she lays down, and that means that when she tries to sleep, the coughing keeps her awake.
We've been going through her doctors lately...her regular doctor has been helpful, but getting in to see the specialists has been very difficult. For example, they tell her to come in for a monthly follow-up, and then cannot schedule her for 2 to 3 months. I think that this is really ironic...all the right wingers out there are slamming Obama's health care program because it will lead to rationing and will put limits to how much you can see a doctor, while Lynn is experiencing that very situation right now. Today, she got fresh Doppler done on her heart. On Monday, she will discuss the results of the test with a pulmonary specialist, one, incidentally, she should have seen weeks ago. Hopefully, they'll have some ideas on what can be done to get her felling better. The overall theme, of course, is that this is all due to the radiation she had years ago. Of course, this defies logic...if the radiation is causing all the fatigue, how come she never had that problem BEFORE the open heart procedure? How come all this started AFTER they did all the bypass plumbing work? It doesn't take a rocket scientist (or an engineer!) to know that something that was done in the operation is causing the pulmonary failure situation, not some damage from radiation applied to her back during the Reagan administration.
it
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