Well it was a pretty boring day up until Margaret went to rehab. While she was rehabing ABC showed up doing a peice on 'intervals' (exercise related topic) and they were filming at the Mayo Cardiac Rehab exercise room. It is going to be on ABC with Diane Sawyer tomorrow (Thursday) at 5:30 (your time may differ). She may end up on the cutting room floor, we don't know what film they will use but she said she walked past a few times. She will have a grey Amyloidosis (disease) T-shirt on with a blue mask!
Who knew she was going to be a TV star from all this........ :)
Wednesday, June 29, 2011
Tuesday, June 28, 2011
Day 79 Saturday, June 28th
Margaret is doing well, currently our last appointment is this Friday but things can change and there may be more but for now we are keeping positive and thinking that we MAY(?) be going home Friday. She still has a biopsy this Thursday so we will have to wait and see how it all plays out.
We (the house) have had a pretty good run of people having what ever transplant they were here for and going home but lately the run seems to have stopped. Most are still doing well but there have been a few people who we have gotten to know and have not done well and have passed away. There are also a few others who have been hospitalized and the outlook is grim.
For those who are having SCT (stem cell transplant/bone marrow transplant) it is pretty normal to be hospitalized for a while, there always seems to be some issue that will put them in the hospital for a while, infection or low blood counts are the common issues and it seems almost everyone who has a SCT has been hopitalized for at least one of these. It is much less common for organ transplants to be hospitalized.
It is difficult to meet someone and get to know them, eat meals with them, sit an talk with them and then all of a sudden they are hospitalized for something very serious then you hear that they didn't make it. It kind of brings home the point that transplants are not cookie cutter and there is a very real serious risk that you may not make it. It really changes the mood of the house as you would expect. When things are going good for everyone you tend to put that out of your mind then things happened and it hits you like a Mac truck.
Sorry for this less than uplifting post but is has been reality here lately.
We (the house) have had a pretty good run of people having what ever transplant they were here for and going home but lately the run seems to have stopped. Most are still doing well but there have been a few people who we have gotten to know and have not done well and have passed away. There are also a few others who have been hospitalized and the outlook is grim.
For those who are having SCT (stem cell transplant/bone marrow transplant) it is pretty normal to be hospitalized for a while, there always seems to be some issue that will put them in the hospital for a while, infection or low blood counts are the common issues and it seems almost everyone who has a SCT has been hopitalized for at least one of these. It is much less common for organ transplants to be hospitalized.
It is difficult to meet someone and get to know them, eat meals with them, sit an talk with them and then all of a sudden they are hospitalized for something very serious then you hear that they didn't make it. It kind of brings home the point that transplants are not cookie cutter and there is a very real serious risk that you may not make it. It really changes the mood of the house as you would expect. When things are going good for everyone you tend to put that out of your mind then things happened and it hits you like a Mac truck.
Sorry for this less than uplifting post but is has been reality here lately.
Sunday, June 26, 2011
Day 77 Saturday, June 26th
We finally got everyone in the House who had a heart transplant together for a picture. They are shown in the order that they got their new hearts. The first three all happened on April 11th and the fourth person got his 10 days later on the 21st. The third person is a 7 year old boy. Now don't show this to their doctors as they should all have their masks on and we wouldn't want to get them in trouble.
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Today we went to see Solders Memorial Field in Rochester which is dedicated to the people in service from Olmsted County which is the county Rochester is in. Very amazing! They have a Wall like the Viet Nam Memorial but also have the history all carved into stone. I took a lot of pictures and it is very impressive and moving. I have included one of the pictures below so you can see a sample of the incredible work they did with the carvings.
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Today we went to see Solders Memorial Field in Rochester which is dedicated to the people in service from Olmsted County which is the county Rochester is in. Very amazing! They have a Wall like the Viet Nam Memorial but also have the history all carved into stone. I took a lot of pictures and it is very impressive and moving. I have included one of the pictures below so you can see a sample of the incredible work they did with the carvings.
Thanks for checking in!
PS It is not raining here today, everyone is amazed.
Friday, June 24, 2011
Day 75 Saturday, June 24th ** Warning Graphic (but cool) Pictures Below **
We were going to make a post last night but the internet was out at the house. Some exciting stuff happened on Thursday, we got to see Margaret's old heart! Yes Ray, I missed the picture of the bird but a got a few of this and a few are below. Don't worry it doesn't look that gross, Margaret says it look like something that went bad in the fridge and needs to be thrown out. It is in a few slices since the lab already had taken some tissue samples. Because of her amyloid the heart was pretty stiff and there were some parts that felt like bone or cartilage. It came in a bucket and it was stored in a big bag, there were large air bubbles which made it hard to take pictures and get the air bubbles out of the way. The post-transplant coordinator requested it and held it for us under her desk until we got to look at it, little creepy but she said she has gotten used to the smell since she does it a lot.
Yesterday we also had a Mayo executive chef show us how to cook. Big advantage was that we could eat what he was making. He made ground tuna sandwiches (patties), grilled fruit and bab ganoush. I tried it all and the tuna was better than I thought even though I don't like tuna.
We did find out that Margaret has osteopenia (barely) which is the precursor to osteoporosis, not enough bone loss to be osteoporosis. She had three choices, a weekly pill, a monthly pill or a once a year IV. She picked the IV which she got today, so she should be good for a year.
********** Warning Pictures of her old heart below ************
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Very cool! I have more pictures but have to cover up some of the personal info that was printed on the bag. Also when I get home I will clean up the pictures so they look better.
Yesterday we also had a Mayo executive chef show us how to cook. Big advantage was that we could eat what he was making. He made ground tuna sandwiches (patties), grilled fruit and bab ganoush. I tried it all and the tuna was better than I thought even though I don't like tuna.
We did find out that Margaret has osteopenia (barely) which is the precursor to osteoporosis, not enough bone loss to be osteoporosis. She had three choices, a weekly pill, a monthly pill or a once a year IV. She picked the IV which she got today, so she should be good for a year.
********** Warning Pictures of her old heart below ************
Wednesday, June 22, 2011
Day 73 Saturday, June 22th
This past weekend we had two visitors! What a delight to have both of our kids here, they were able to stay at a hotel just down the street (that had a TV in their room, yes I am getting over it a little). Being younger they could go back and stay up until the wee hours of the night, or probably morning. We on the other had are to old for any of that nonsense.
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Not that much new this week, it is not a biopsy week so that is good. Just cardiac rehab and normal appointments. They are slowing down a bit since it is getting closer to us being able to leave. We have our weekly meeting with transplant tomorrow so which should be uneventful. Oh yes and it rained here yesterday and today and they say it is going to rain here tomorrow. Nothing like the Chicago area got last night though. It could be worse, it could be raining... But I don't think the heavy stuff gonna come down for a while. (previous 2 statements are movie quotes, the second one anybody with a man card should know)
Adios, au revoir, auf wiedersehen, Goodnight!
Not that much new this week, it is not a biopsy week so that is good. Just cardiac rehab and normal appointments. They are slowing down a bit since it is getting closer to us being able to leave. We have our weekly meeting with transplant tomorrow so which should be uneventful. Oh yes and it rained here yesterday and today and they say it is going to rain here tomorrow. Nothing like the Chicago area got last night though. It could be worse, it could be raining... But I don't think the heavy stuff gonna come down for a while. (previous 2 statements are movie quotes, the second one anybody with a man card should know)
Adios, au revoir, auf wiedersehen, Goodnight!
Saturday, June 18, 2011
Day 69 Saturday, June 18th
Friday was a long day but not as long as Thursday and we got good news so that made it better. We had a meeting with transplant in the morning and everything was good. When they do a cardiac biopsy they take 5 pieces of tissue (five easy pieces, a movie right?). One of the pieces showed a very little amount of rejection, such a small amount of rejection they don't care. In fact there could have been 3 areas with this amount of rejection (1R is what they call the level of rejection) and they still wouldn't care. We found out there are two main categories of rejection, cellular and antibody rejection. She has the cellular type which is no big deal, if they were to do something about it, if it were a higher level they would just up her steroid for a few weeks and then bring it back down. The antibody type is more serious, it is when the body is bringing more troops to fight the heart and the body remembers that there is this foreign thing that has to be gotten rid of so it would mean raising her anitrejection meds permanently. She has the cellular type and not the antibody, yippee! She will have at least one more biopsy before we go and we will see if this one area of tissue they took was just a fluke, either way it is easy to deal with.
She also had an ultrasound of her neck where she had the blood clot because at biopsy time they thought it might have gone away and they wanted to officially check. If it has gone away (dissolved) they she may be able to stop giving herself shots everyday. We will find out next week so in the mean time she keeps shooting up.
In the afternoon we saw hematology (amyloid doc). Her numbers went down!! Apparently it is not that unusual after a transplant since her antirejection meds are lowering her white blood cells, one type of white blood cell is what is causing the amyloid so an across the board lowering of them will also reduce the bad ones also. He also is in no hurry to perform a stem cell transplant since her amyloid numbers were low and now even lower, he still thinks she will eventually have one but unless her numbers change it will not be this year. For you experts in the disease her FLC (free light chains) was 4.4 and her ratio Kappa/Lambda ratio is .05. Her M spike was 0.9. Her IgG went from 1500 to 1010!! We are pleased by all this.
There was one thing that transplant was going to look into, her donor heart had Epstein-Barr (mono). According to the CDC, In the United States, as many as 95% of adults between 35 and 40 years of age have been infected. Well I will be nice and say she is over 40 and she has never had it Even though two weeks before our wedding she was diagnosed with mono - fun time, great timing. Well apparently she never really had mono and is in the 5% who have never been exposed to it. There concern is she might get it from the heart which has had it. The virus is showing up in her blood work at a VERY low level but she doesn't have the disease yet. Transplant was going to talk to infectious disease and see what their recommendation will be, worse case is she gets mono and then we deal with it. She had been on anti-viral meds as normal procedure after a transplant, they may want to start her up on those again for a while which they think should get rid of the virus from her and the heart.
Oh by they was we asked about why people who have had a stem cell transplant smell like creamed corn they day they get their cells back, it is the material that the cells are packed in and that comes out of you smelling like creamed corn. You can always tell when someone in the transplant house got their cells, you can smell the corn!
All in all a good day!
TTFN!
PS. Don't know what TTFN means, ask Tigger!
She also had an ultrasound of her neck where she had the blood clot because at biopsy time they thought it might have gone away and they wanted to officially check. If it has gone away (dissolved) they she may be able to stop giving herself shots everyday. We will find out next week so in the mean time she keeps shooting up.
In the afternoon we saw hematology (amyloid doc). Her numbers went down!! Apparently it is not that unusual after a transplant since her antirejection meds are lowering her white blood cells, one type of white blood cell is what is causing the amyloid so an across the board lowering of them will also reduce the bad ones also. He also is in no hurry to perform a stem cell transplant since her amyloid numbers were low and now even lower, he still thinks she will eventually have one but unless her numbers change it will not be this year. For you experts in the disease her FLC (free light chains) was 4.4 and her ratio Kappa/Lambda ratio is .05. Her M spike was 0.9. Her IgG went from 1500 to 1010!! We are pleased by all this.
There was one thing that transplant was going to look into, her donor heart had Epstein-Barr (mono). According to the CDC, In the United States, as many as 95% of adults between 35 and 40 years of age have been infected. Well I will be nice and say she is over 40 and she has never had it Even though two weeks before our wedding she was diagnosed with mono - fun time, great timing. Well apparently she never really had mono and is in the 5% who have never been exposed to it. There concern is she might get it from the heart which has had it. The virus is showing up in her blood work at a VERY low level but she doesn't have the disease yet. Transplant was going to talk to infectious disease and see what their recommendation will be, worse case is she gets mono and then we deal with it. She had been on anti-viral meds as normal procedure after a transplant, they may want to start her up on those again for a while which they think should get rid of the virus from her and the heart.
Oh by they was we asked about why people who have had a stem cell transplant smell like creamed corn they day they get their cells back, it is the material that the cells are packed in and that comes out of you smelling like creamed corn. You can always tell when someone in the transplant house got their cells, you can smell the corn!
All in all a good day!
TTFN!
PS. Don't know what TTFN means, ask Tigger!
Thursday, June 16, 2011
Day 67 Thursday, June 16th
Hello again. Monday thru Wednesday were mostly cardiac rehab, errands with a nap and an echocardigram thrown in. On Wednesday, we met Edward Pompeion, who started The Gift of life Transplant House. We also met his mother, Helen, who gave him a kidney decades ago. She wrote a short book about it.
Thursday, they beat me up. Blood work (10 vials, my record is 18), chest xray and then to the Cardiac cath Lab. There I had biopsies, a right heart catherization, IVUS (vascular ultrasound) and an angiogram. This is standard to see if my new heart has coronary disease. We were at the hospital from 7AM till 4PM. It was longer than planned cuz my foot/lower leg went numb in recovery. We had to wait for the numbing agent from the procedures to dissipate. Apparently, this is not uncommon. Tonight, I am pretty sore and tired. Off to bed.
Jim just told me that he also did a blog entry. Oops!
Hello again. Monday thru Wednesday were mostly cardiac rehab, errands with a nap and an echocardigram thrown in. On Wednesday, we met Edward Pompeion, who started The Gift of life Transplant House. We also met his mother, Helen, who gave him a kidney decades ago. She wrote a short book about it.
Thursday, they beat me up. Blood work (10 vials, my record is 18), chest xray and then to the Cardiac cath Lab. There I had biopsies, a right heart catherization, IVUS (vascular ultrasound) and an angiogram. This is standard to see if my new heart has coronary disease. We were at the hospital from 7AM till 4PM. It was longer than planned cuz my foot/lower leg went numb in recovery. We had to wait for the numbing agent from the procedures to dissipate. Apparently, this is not uncommon. Tonight, I am pretty sore and tired. Off to bed.
Jim just told me that he also did a blog entry. Oops!
Day 67 - June 16th
It was a long day today, it is Thursday so it must be a biopsy day. (To be fair they are now every other Thursday) Today was a special one, not only was it a 'normal' biopsy but it was also and anigiogram (2D view) and an IVUS (Intravascular ultrasound, 3D view). Besides checking for rejection they wanted to make sure that there was not a buildup of plaque in the coronary artery. Oh boy, doesn't that sound like a lot of fun! Well one of the fun parts is that because of these different tests some went through a vein (low pressure) and some went through an artery (higher pressure) and it takes more time for the artery to clot up and feel safe that you won't end up with a 'pumper'. So the upshot of all this info is that where it normally takes about 3 hours for a biopsy this one took about 7 hours and thankfully the these tests, blood work and an X-Ray was all there was today but that took the whole day.
Tomorrow we have appointments with transplant to get the results of all the testing today and also an appointment with hematology to see where we currently stand and where we go from here as far as the amyloidosis is concerned. It promises to be an informative day.
As a side note, since I got here it has rained almost everyday! Today it didn't rain but it did late last night, maybe early this AM. A guy could get a complex from this bad weather that seems to be following me, something about a rain cloud over my head. Maybe I should visit Texas, I hear they need rain down there.
That's all for now.........
Tomorrow we have appointments with transplant to get the results of all the testing today and also an appointment with hematology to see where we currently stand and where we go from here as far as the amyloidosis is concerned. It promises to be an informative day.
As a side note, since I got here it has rained almost everyday! Today it didn't rain but it did late last night, maybe early this AM. A guy could get a complex from this bad weather that seems to be following me, something about a rain cloud over my head. Maybe I should visit Texas, I hear they need rain down there.
That's all for now.........
Saturday, June 11, 2011
Day 62 June 11th
Thursday was a busy Mayo day. 4 tests by 10AM; then in the afternoon, a test that took 2 hours with a 1 hour prep. It was the first day of 'Thursdays on 1st' (craft fair, food booths, farmer's market and bands all in one). Kerry walked around that in the afternoon (she bought me a wooden ornament that was heart shaped with 2011 written on it. I will treasure that.) I joined her after the test and we went to Victoria's to eat (yum).
Friday we were back at the clinic early again. Test results from Thursday were good. Three meds got changed. Kerry & I went to 4:30 Mass at St. Mary's Hospital Chapel. Churches are usually germy but since the chapel is huge and there were only 20 people (it was Friday), I was able to stay clear of others. I haven't been to church since the Lazarus gospel on April 10th.
Today, Saturday is 2 months since my heart transplant!!! I will have even more tests as they want a new baseline for everything at 2 months. Kerry went home today. She was a great help and very easygoing.
Jim is back. I missed him like crazy. What an amazing man he is. We will have an easy day tomorrow and back to the clinic Monday at 7:30. Have a good weekend.
Thursday was a busy Mayo day. 4 tests by 10AM; then in the afternoon, a test that took 2 hours with a 1 hour prep. It was the first day of 'Thursdays on 1st' (craft fair, food booths, farmer's market and bands all in one). Kerry walked around that in the afternoon (she bought me a wooden ornament that was heart shaped with 2011 written on it. I will treasure that.) I joined her after the test and we went to Victoria's to eat (yum).
Friday we were back at the clinic early again. Test results from Thursday were good. Three meds got changed. Kerry & I went to 4:30 Mass at St. Mary's Hospital Chapel. Churches are usually germy but since the chapel is huge and there were only 20 people (it was Friday), I was able to stay clear of others. I haven't been to church since the Lazarus gospel on April 10th.
Today, Saturday is 2 months since my heart transplant!!! I will have even more tests as they want a new baseline for everything at 2 months. Kerry went home today. She was a great help and very easygoing.
Jim is back. I missed him like crazy. What an amazing man he is. We will have an easy day tomorrow and back to the clinic Monday at 7:30. Have a good weekend.
Wednesday, June 8, 2011
Day 59 June 8th
Hi gang. The week has been slow appointment-wise. Kerry and I are having a nice visit. By Saturday, we should have all world problems solved. Monday was labs, exercise and meds refills.
Tuesday was 101 degrees, but at least the humidity was really high. Dinner was steak, loaded mash potatoes and corn (yes, Rich we ate corn).
Today, Wednesday was hot but not humid. We walked to my exercise class. And in the afternoon, we walked to St.. Mary's Hospital to show Kerry the chapel. She liked it as much as I had. I am gaining strength and looking forward to coming home in July. I have been here quite awhile. I am seeing people I know arriving at the transplant house that are returning for their monthly visits. So glad that all four of us 'fresh hearts' are at the same place (there are 2 transplant house locations) because we will all go home about the same time.
Stay cool.
Hi gang. The week has been slow appointment-wise. Kerry and I are having a nice visit. By Saturday, we should have all world problems solved. Monday was labs, exercise and meds refills.
Tuesday was 101 degrees, but at least the humidity was really high. Dinner was steak, loaded mash potatoes and corn (yes, Rich we ate corn).
Today, Wednesday was hot but not humid. We walked to my exercise class. And in the afternoon, we walked to St.. Mary's Hospital to show Kerry the chapel. She liked it as much as I had. I am gaining strength and looking forward to coming home in July. I have been here quite awhile. I am seeing people I know arriving at the transplant house that are returning for their monthly visits. So glad that all four of us 'fresh hearts' are at the same place (there are 2 transplant house locations) because we will all go home about the same time.
Stay cool.
Sunday, June 5, 2011
Day 56 June 5th
Good morning. Friday, there was a wedding at the transplant house. Rumor has it that the bride's mother is staying here after lung transplant (the trickiest transplant of all) and they didn't want her to miss the wedding. Isn't that neat? I caught a glimpse of the groomsmen, but not the bride or bridesmaids. We couldn't wait, I had to make sure Amy saw the HiVee grocery store.
Saturday, Amy and I went to dinner at Dooley's (best hamburgers ever) to celebrate her 21st birthday (which is tomorrow). Going out to eat in Rochester is a bit different. No one reacts when you are wearing a mask (I have to for 6 months), ask for seating away from other people, take out wipes and clean the table and request a ton of substitutions or changes from the menu.
Amy and I had a great 12 days. She brought games which we played while having root beer floats, just like we did on summer nights when the kids were younger. She is an amazing young woman and we had a special time together.
Today, my friend Kerry comes to help. We have been friends since we were in our early 20's (clearly over a decade). Be well.
Good morning. Friday, there was a wedding at the transplant house. Rumor has it that the bride's mother is staying here after lung transplant (the trickiest transplant of all) and they didn't want her to miss the wedding. Isn't that neat? I caught a glimpse of the groomsmen, but not the bride or bridesmaids. We couldn't wait, I had to make sure Amy saw the HiVee grocery store.
Saturday, Amy and I went to dinner at Dooley's (best hamburgers ever) to celebrate her 21st birthday (which is tomorrow). Going out to eat in Rochester is a bit different. No one reacts when you are wearing a mask (I have to for 6 months), ask for seating away from other people, take out wipes and clean the table and request a ton of substitutions or changes from the menu.
Amy and I had a great 12 days. She brought games which we played while having root beer floats, just like we did on summer nights when the kids were younger. She is an amazing young woman and we had a special time together.
Today, my friend Kerry comes to help. We have been friends since we were in our early 20's (clearly over a decade). Be well.
Thursday, June 2, 2011
Day 53 June 2nd
Good evening. Today was a busy day. Amy and I were out the door by 6:30 (much to Amy's chagrin) to the hospital and then the afternoon at the clinic. All went well. I had a biopsy (#4 of 6) and it showed 'no rejection'. We are pleased. All blood work was good also. Just found out Mayo's annual transplant picnic is July 9th. I sure hope to miss it due to being in Illinois, but they will make no promises.
Been a bit too exciting at the transplant house this week as ambulances came 3 times to take people to the ER. Not sure how they are doing. Makes you remember to appreciate when things are going well. Seems like a good time to thank you all for the prayers and the help you have been so generous with. We are overwhelmed. I ask that you remember the donor family in your prayers, as I am sure their loss was as enormous as their gift. Time for evening meds. Bye.
Good evening. Today was a busy day. Amy and I were out the door by 6:30 (much to Amy's chagrin) to the hospital and then the afternoon at the clinic. All went well. I had a biopsy (#4 of 6) and it showed 'no rejection'. We are pleased. All blood work was good also. Just found out Mayo's annual transplant picnic is July 9th. I sure hope to miss it due to being in Illinois, but they will make no promises.
Been a bit too exciting at the transplant house this week as ambulances came 3 times to take people to the ER. Not sure how they are doing. Makes you remember to appreciate when things are going well. Seems like a good time to thank you all for the prayers and the help you have been so generous with. We are overwhelmed. I ask that you remember the donor family in your prayers, as I am sure their loss was as enormous as their gift. Time for evening meds. Bye.
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