Today was a 'Clinic Day' and we got good reports! They start steroids at a high level and then taper it down to a livable level and she is currently at the end of the taper. She is still on prednisone but a much lower level than when she started out. She was on blood pressure medicine to keep her pressure stabilized and as of today is going to half of it. All good news!
She is currently scheduled for her first heart biopsy with the new heart, it is scheduled for Monday. She will eventually have 5 more before she goes home. She is also scheduled to start her cardiac rehab next week so that should be good. We took a walk today (since the sun was out, a rarity in Rochester these days) much longer than before and she was talking during the whole walk. The walk was 8 Rochester blocks, not sure how long it really was though, still this is great news since a few days earlier she was only able to go about 4 blocks and stopped a few times. This is great news. Sometime next week we plan to walk to the Clinic for her appointments and see how that goes.
I think the weather forecast for the rest of the year is rain or snow every day. There have been 3 days where the sun has been out since we have been here. Today was nice but I am told it is raining out now, great.
That's all I got for now, thanks for checking in.
Friday, April 29, 2011
Wednesday, April 27, 2011
Day 17 - April 27th
We had a good day, long but good. We spent a good portion of the day at the clinic. Good reports all the way around! This afternoon was food education, like I need help with that! Oh wait it was food safety so I learned you should keep your hands out of my way..... Ok, it was cross contamination and food safety, a bit boring since we had to have the class pre-transplant and it was generic information for any transplant so we had more specific already but it is a required class so we went.
The nice thing about clinic days is we eat breakfast at the clinic since she always has fasting blood tests and then needs to take her meds which need to be with food. We usually have cookies that we eat after the blood tests and before the next appointment.
That was it, a good but long and a bit boring kind of day.
The nice thing about clinic days is we eat breakfast at the clinic since she always has fasting blood tests and then needs to take her meds which need to be with food. We usually have cookies that we eat after the blood tests and before the next appointment.
That was it, a good but long and a bit boring kind of day.
Tuesday, April 26, 2011
April 26th - Pictures
I got approval from the committee for these pictures to be posted.
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| 2 Days after surgery in ICU |
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| Takes a lot just to take a walk when in ICU |
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| Just going for a stroll, everyone brings some equipment with them. |
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| Margaret is checking in with the kids |
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| Our room |
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| More pictures of our room |
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| I think my pants drying on the chair adds a homey touch |
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| This is a great place for a TV between the door and the dresser, oh wait,can't have a TV in your room. |
Day 16 - April 26th
Things are still going pretty good. We had a 'clinic' visit yesterday and met with a pharmacist to talk about the new meds Margaret has to take, it was very informative.
Margaret did get 2 ocular migraines on Sunday, she did have them once before and the answer from the Wheaton Eye Clinic was to sit and wait them out. Apparently if you google it the description of what you see is pretty accurate. When she was telling the post-transplant coordinator about them it was easy for the coordinator to understand, she has had them also.
There are still some small pleural effusions (fluid around the lungs) that still exist, they are getting smaller so they are keeping her on the Lasix for now. Her blood work came back good. Everyone is pleased with her progress.
I don't know what the weather is where you are but we have been here 16 days and it has NOT rained 2 days so far. Everyone here is really getting sick and tired of the rain. I hope to post some pictures after this but need to get them through the approval committee first, we will see how that works out later today.
That's all for now.
Margaret did get 2 ocular migraines on Sunday, she did have them once before and the answer from the Wheaton Eye Clinic was to sit and wait them out. Apparently if you google it the description of what you see is pretty accurate. When she was telling the post-transplant coordinator about them it was easy for the coordinator to understand, she has had them also.
There are still some small pleural effusions (fluid around the lungs) that still exist, they are getting smaller so they are keeping her on the Lasix for now. Her blood work came back good. Everyone is pleased with her progress.
I don't know what the weather is where you are but we have been here 16 days and it has NOT rained 2 days so far. Everyone here is really getting sick and tired of the rain. I hope to post some pictures after this but need to get them through the approval committee first, we will see how that works out later today.
That's all for now.
Saturday, April 23, 2011
Day 13 - April 23rd
Pretty quite day today. Not much happened. I did forget to mention yesterday that her pleural effusions (water around the lungs) is going down so much that they halved the amount of Lasix (diuretic) she is taking.
For dinner a family from the Rochester area came in and catered dinner. It was very nice, they have never stayed at the Gift of Life or had anyone in their family stay here, it was just their family mission, very, very nice of them.
I hope you have a good Easter!
For dinner a family from the Rochester area came in and catered dinner. It was very nice, they have never stayed at the Gift of Life or had anyone in their family stay here, it was just their family mission, very, very nice of them.
I hope you have a good Easter!
Friday, April 22, 2011
Day 12 - April 22th
It was a good day if you skip my cooking. Margaret had appointments at the clinic today and everything is fine and all are pleased! Her magnesium was a little low so she was taking extra magnesium but now that is ok so that is one less pill to take. Her first heart biopsy will probably be next Friday as it stands now. It may change because 'everyone is different' ya know.
I was so good to her today I served her left over re-heated (BURNED) frozen pizza (lunch) and spaghetti (dinner), yum yum. We are a little limited by 1. Creativity, 2. Low sodium diet and shelf, fridge, freezer space. Plus there are limitations on what she can eat because of her drugs. I have to do some serious thinking about what to cook that may not kill her taste buds.
We got 'the call' 2 Sundays ago and today Margaret reminded of the Gospel reading that day.... the story of Lazarus. I found that amusing.
Thanks for stopping in!
I was so good to her today I served her left over re-heated (BURNED) frozen pizza (lunch) and spaghetti (dinner), yum yum. We are a little limited by 1. Creativity, 2. Low sodium diet and shelf, fridge, freezer space. Plus there are limitations on what she can eat because of her drugs. I have to do some serious thinking about what to cook that may not kill her taste buds.
We got 'the call' 2 Sundays ago and today Margaret reminded of the Gospel reading that day.... the story of Lazarus. I found that amusing.
Thanks for stopping in!
Thursday, April 21, 2011
Day 11 - April 21th
Pretty boring day today, not much happened. After we had breakfast, because she needs to take her meds on a full stomach, I took a nap and she rested. That was very good.
Margaret was jonesing (I'm so hip I'm hep, you have to be older to understand that one, it is the bees knees) for pizza so I made a Walmart run for frozen pizza. It seems that I am going there on a daily basis. The freezer space you get it pretty small and you get one shelf in the fridge. The fridge is an industrial size so it is a decent amount of space but the freezer space is limited. She said that the pizza was good but the stove/oven is electric and it has been 20+ years since I have cooked on an electric oven, the stove took 20 minutes to preheat. Other that that it was laundry, what an exciting day it has been...ZZzzzzzzzz.
Have our first appointments at the clinic tomorrow so we will see what comes of that, I am expecting it to be uneventful. Sorry nothing exciting happened but I really like boring these days.
Margaret was jonesing (I'm so hip I'm hep, you have to be older to understand that one, it is the bees knees) for pizza so I made a Walmart run for frozen pizza. It seems that I am going there on a daily basis. The freezer space you get it pretty small and you get one shelf in the fridge. The fridge is an industrial size so it is a decent amount of space but the freezer space is limited. She said that the pizza was good but the stove/oven is electric and it has been 20+ years since I have cooked on an electric oven, the stove took 20 minutes to preheat. Other that that it was laundry, what an exciting day it has been...ZZzzzzzzzz.
Have our first appointments at the clinic tomorrow so we will see what comes of that, I am expecting it to be uneventful. Sorry nothing exciting happened but I really like boring these days.
Water Polo Team Picture
When I went home last week on Friday I stayed for Matt's water polo game. This picture was taken before I got there and printed out and given to me. Needless to say I was very choked up by it and I brought it back later that day to give to Margaret. She was also very moved by it. (I have blanked out the last name) Thank you Rhonda and the water polo team for this!! It is being proudly display on our bulletin board in our room.
Wednesday, April 20, 2011
Day 10 - April 20th - Supplement
People have told me that you need to be a registered to leave a comment. I found the setting and turned it off so you can now leave an anonymous comment. There is still some verification that you have to type in a word they show, this limits the spam that will be posted.
Day 10 - April 20th
Ok, this has been a long but good day. She has been sprung! We are currently staying at the transplant house, officially The Gift of Life Transplant House. You basically have an apartment with a common kitchen(s) and dinning area. No TVs are allowed in the rooms so I am going through a little bit of withdrawal, how will I be able to keep track of The Deadliest Catch or Supernatural? There are a few TVs but we just have to have the energy to go and watch not to mention remember to watch since there aren't any DVRs here.
That is all superseded by the very nice people we have met who are all going through a transplant or have gone through one.
Margaret is doing good but tires pretty easily. It was all she could do this evening to figure out all her meds, they tell us that they will change so it isn't one pill per medicine since there is more flexibility if they are of a smaller milligram.
Just a rhetorical question, why does it take all day to be discharged from a hospital? They started with last minute education and all of that was done by lunch. Right after lunch they started to discharge her and we finally walked out at about 4:00. Talk about a process that can be improved!
After we got moved in I had to make a quick trip to Walmart then I had to hurry and get dinner ready because most of her meds need to be taken on a full stomach. The plan for dinner was going to be veggies and hamburgers. Best laid plans of mice and men.... The hamburger wasn't defrosted yet so it was either cereal or eggs, scrambled eggs it was. She said it was really good but then again her taste buds have been burned off from the hospital food so I am not sure she is a current authority of cuisine. After I did the dishes from dinner it was back to the hospital for me since they didn't get three of the meds done for our 4:00 checkout.... hmmmm, I guess it was a surprise for them, ok rant over.
The address here is:
Margaret McMullen Room 34
Gift of Life Transplant House
705 Second Street SW
Rochester, MN 55902
They are very picky about what comes into the house, nothing that is alive except the patients. Cards are just fine but that is about it. So far she has been a real trooper, putting up with a lot of crap, it is amazing to me. That and what medicine is able to do, just amazing.
Thanks for checking in!
That is all superseded by the very nice people we have met who are all going through a transplant or have gone through one.
Margaret is doing good but tires pretty easily. It was all she could do this evening to figure out all her meds, they tell us that they will change so it isn't one pill per medicine since there is more flexibility if they are of a smaller milligram.
Just a rhetorical question, why does it take all day to be discharged from a hospital? They started with last minute education and all of that was done by lunch. Right after lunch they started to discharge her and we finally walked out at about 4:00. Talk about a process that can be improved!
After we got moved in I had to make a quick trip to Walmart then I had to hurry and get dinner ready because most of her meds need to be taken on a full stomach. The plan for dinner was going to be veggies and hamburgers. Best laid plans of mice and men.... The hamburger wasn't defrosted yet so it was either cereal or eggs, scrambled eggs it was. She said it was really good but then again her taste buds have been burned off from the hospital food so I am not sure she is a current authority of cuisine. After I did the dishes from dinner it was back to the hospital for me since they didn't get three of the meds done for our 4:00 checkout.... hmmmm, I guess it was a surprise for them, ok rant over.
The address here is:
Margaret McMullen Room 34
Gift of Life Transplant House
705 Second Street SW
Rochester, MN 55902
They are very picky about what comes into the house, nothing that is alive except the patients. Cards are just fine but that is about it. So far she has been a real trooper, putting up with a lot of crap, it is amazing to me. That and what medicine is able to do, just amazing.
Thanks for checking in!
Tuesday, April 19, 2011
Day 9 - April 19th
Good news, spring has sprung and so will she be, tomorrow! Yippee! Actually spring is anything but sprung here, it snowed all day, but at least it was a wet snow (sarcasm intended). To my kids let me just say this about the weather, 'Sven...', they know what that means, inside joke. We are not sure when tomorrow she will be sprung but as of now they are still going with that. From here we move to the transplant house, more to follow on that.
She walked a total of 5 times today, a record for her, and they were walks of a decent length. SO much so that the nurse came in and told her to get some rest because she was over doing it. The final walk was to a map of the US where we got to put a pin showing where we live. Apparently that is one of the perks of getting a heart transplant, you get to put a pin in their map. Another perk that I found out about today was you get free messages so she got one today and is scheduled for one tomorrow if we are still around when they come by. Margaret said it felt real good.
Last night I officially moved to the transplant house, I unpacked our 'stuff' and then made a list of other stuff we needed so after lunch involved a trip to the Wallmart. Amazing how you can spend so much in one trip but I did have to buy a bunch of stuff. Food was a little issue because I will be doing the cooking and it all has to be low salt and fresh fruit and vegetables are mostly a no-no.
When I got back from the fun and exciting trip to Wallmart there was someone at the desk, it was Greta and her husband (Greta attends the Chicago Amyloidosis Support group meetings). It was great to see friendly faces that I knew. They were on their way out of town from a checkup and stopped to say a quick 'Hi' to Margaret at St. Marys. Margaret also liked seeing them and it was a nice surprise for her.
Tomorrow is planned to be mostly doing what we need to so she can be discharged, should be a full morning and then moved into the transplant house. I think she will like it there even though at the moment I am a little lost but people are very friendly and helpful which makes it a lot easier.
Well that is all I can think of for today, there was probably some other things but I can't remember them, I think I hit the high points. I would like to thank you for following along with us in the little adventure! And thank you for not sending these posts back with spelling and grammar corrections. Stay tuned for more to come.
She walked a total of 5 times today, a record for her, and they were walks of a decent length. SO much so that the nurse came in and told her to get some rest because she was over doing it. The final walk was to a map of the US where we got to put a pin showing where we live. Apparently that is one of the perks of getting a heart transplant, you get to put a pin in their map. Another perk that I found out about today was you get free messages so she got one today and is scheduled for one tomorrow if we are still around when they come by. Margaret said it felt real good.
Last night I officially moved to the transplant house, I unpacked our 'stuff' and then made a list of other stuff we needed so after lunch involved a trip to the Wallmart. Amazing how you can spend so much in one trip but I did have to buy a bunch of stuff. Food was a little issue because I will be doing the cooking and it all has to be low salt and fresh fruit and vegetables are mostly a no-no.
When I got back from the fun and exciting trip to Wallmart there was someone at the desk, it was Greta and her husband (Greta attends the Chicago Amyloidosis Support group meetings). It was great to see friendly faces that I knew. They were on their way out of town from a checkup and stopped to say a quick 'Hi' to Margaret at St. Marys. Margaret also liked seeing them and it was a nice surprise for her.
Tomorrow is planned to be mostly doing what we need to so she can be discharged, should be a full morning and then moved into the transplant house. I think she will like it there even though at the moment I am a little lost but people are very friendly and helpful which makes it a lot easier.
Well that is all I can think of for today, there was probably some other things but I can't remember them, I think I hit the high points. I would like to thank you for following along with us in the little adventure! And thank you for not sending these posts back with spelling and grammar corrections. Stay tuned for more to come.
Monday, April 18, 2011
Day 8 - April 18th
It was a long day today. She was able to take a shower which is a big deal. The villagers have stopped threatening trouble after they learned of her shower and she feels much better. It was tiring so she needed a nap afterwards.
There was lots of education today. We had pill education, what pill is the name of all the pills, when do you take them and what do they do. Also the dietitian stopped by for a class on food, my favorite subject. She talked about food safety as well as what foods are a Bozo-No-No for a while and how to make other foods safely. This is due to the fact that she has a weakened immune system so he body will not attack the new heart. The pleural effusions are better since they decided that they didn't need to 'tap' them, that made everyone happy.
She also walked around the nurse's station on three separate occasions, that is a big deal. Overall she is feeling good but just gets tired easily. This should get better as time goes by.
Some have asked about an address, at this time we don't know what it will be. When we find out in a couple of days I will post it here. I know the transplant house is VERY picky about what can come in, cards are good and that is about it. Other things get stopped at the door and are not allowed in since most everyone there is on immunosuppressants.
There is a weekly support group meeting for transplant patients which she could not attend since that would require her to be 'off monitor' and she just came of the cardiac IV drug yesterday. I went and it was interesting, there are a few characters in there and I don't just mean me. She should be able to go next week. I think that is about it for the day.
There was lots of education today. We had pill education, what pill is the name of all the pills, when do you take them and what do they do. Also the dietitian stopped by for a class on food, my favorite subject. She talked about food safety as well as what foods are a Bozo-No-No for a while and how to make other foods safely. This is due to the fact that she has a weakened immune system so he body will not attack the new heart. The pleural effusions are better since they decided that they didn't need to 'tap' them, that made everyone happy.
She also walked around the nurse's station on three separate occasions, that is a big deal. Overall she is feeling good but just gets tired easily. This should get better as time goes by.
Some have asked about an address, at this time we don't know what it will be. When we find out in a couple of days I will post it here. I know the transplant house is VERY picky about what can come in, cards are good and that is about it. Other things get stopped at the door and are not allowed in since most everyone there is on immunosuppressants.
There is a weekly support group meeting for transplant patients which she could not attend since that would require her to be 'off monitor' and she just came of the cardiac IV drug yesterday. I went and it was interesting, there are a few characters in there and I don't just mean me. She should be able to go next week. I think that is about it for the day.
Sunday, April 17, 2011
Day 7 - April 17th
Today was a big and eventful day, she moved out of ICU and into a cardiac ward! Yippee! They call it 'step down' but it is the 'normal' cardiac ward. The next move is being discharged but we are not yet sure when that will happen, sometime this week is what people have said.
She is off all IVs which was a requirement to get out of ICU and now is taking oral meds. It seems to me that she is taking fewer type of meds than she was before, just about 1/2 dozen of them. She does have to take pills multiple times a day and that is now the norm but it seems that there are fewer types of meds and some may someday be eliminated.
After the transplant she had an external defibrillator which had wires running through her stomach to her heart and those wires were taken out this morning. That was pretty painful since they had twisted around each other and it was tough to get them out.
She walked around the nurses station today while talking. That was on her second walk of the day. She only stopped twice and it was to look at pictures on the wall but I think the stops helped.
She still has pleural effusions (water around the lungs) which they are watching to see if they grow or shrink. They are hoping that the diuretics will take care of them but if not they will tap them again. For today it was a wait and see but tomorrow they will be able to tell from her daily chest x-ray and then figure what to do.
Tomorrow I am moving from the hotel to the transplant house, Gift of Life, to get things ready for her. One of the requirements to be able to move in is that you have taken a tour which we did a few years ago so I will be brought up to date on the rules there, some may have changed. The Gift of Life is not run by Mayo but if you are on a transplant list or have had a transplant you can stay there. It is extremely clean and you do your own cooking. They encourage people to talk to others and build a sense of community with each other. I have talked to people who have stayed there and the think it is a great place.
She seems more like herself today, I think getting off the strong pain meds has helped that a lot. She still gets tired and takes naps but I expected that.
When I think that one week ago right now we were waiting for the plane to take us for a heart transplant it is amazing how well she is doing now. I never would have expected her to be in the shape she is now, I was expecting far worse.
She is off all IVs which was a requirement to get out of ICU and now is taking oral meds. It seems to me that she is taking fewer type of meds than she was before, just about 1/2 dozen of them. She does have to take pills multiple times a day and that is now the norm but it seems that there are fewer types of meds and some may someday be eliminated.
After the transplant she had an external defibrillator which had wires running through her stomach to her heart and those wires were taken out this morning. That was pretty painful since they had twisted around each other and it was tough to get them out.
She walked around the nurses station today while talking. That was on her second walk of the day. She only stopped twice and it was to look at pictures on the wall but I think the stops helped.
She still has pleural effusions (water around the lungs) which they are watching to see if they grow or shrink. They are hoping that the diuretics will take care of them but if not they will tap them again. For today it was a wait and see but tomorrow they will be able to tell from her daily chest x-ray and then figure what to do.
Tomorrow I am moving from the hotel to the transplant house, Gift of Life, to get things ready for her. One of the requirements to be able to move in is that you have taken a tour which we did a few years ago so I will be brought up to date on the rules there, some may have changed. The Gift of Life is not run by Mayo but if you are on a transplant list or have had a transplant you can stay there. It is extremely clean and you do your own cooking. They encourage people to talk to others and build a sense of community with each other. I have talked to people who have stayed there and the think it is a great place.
She seems more like herself today, I think getting off the strong pain meds has helped that a lot. She still gets tired and takes naps but I expected that.
When I think that one week ago right now we were waiting for the plane to take us for a heart transplant it is amazing how well she is doing now. I never would have expected her to be in the shape she is now, I was expecting far worse.
Saturday, April 16, 2011
Day 6 - April 16th
Good news, she got all but one of her IVs out! The mess of tubes going into her neck has dramatically decreased and that pleases everyone. They are still in the process of weaning her off of the last cardiac IV drug which normally takes 2 days and is taking a little longer but nobody cares because 'everyone is different'.
She also has cut way down on her pain meds and changed from oxy(cotin, codine, whatever, who can keep them all straight, you know the good stuff) to something about 1/2 as strong and it is working just fine. She also does not need it as often as she did before. I think this is good as she seems more like herself, not 100% yet but getting there.
She still takes a lot of naps which is odd because I never knew anyone who could sleep in a hospital.
She walked around the nurses station 3 different times today. She still has to stop a few times but it is an improvement. She doesn't seem to like it when I say 'here she comes spinning out of the turn' when she rounds a corner though, I wonder why?
She met with a person from pharmacy today to talk about her meds and to start getting used to all the drugs she will need to take. I was not there but there will be a few more meetings since there are a bunch of drugs to get straight. They have a sheet with pictures of the pills, names of them and their purpose to help keep it all straight.
She was able to concentrate enough today to play one game of solitaire, after she finished she was exhausted. Another good sign is her appetite is back, possibly from the steroids, but she is eating meals which can only help.
A wonderful mom from Matt's water polo team took a picture of the team with a picture saying "Now we cheer for you". We were both very moved by the picture. I have asked for an electronic copy to post here and was told that it would be sent. the picture is currently hanging in a prominent place in her her room. Thank you again Rhonda!!Friday, April 15, 2011
Day 5 - April 15 (tax day)
Today was a busy day. Margaret woke up this morning with a temperature, they are not sure why as there are no other symptoms. They are doing a few cultures but that will take a couple of days to tell anything. It could be from an infection or just getting used to the meds, the cultures should tell us more. The temperature was on and off during the day so hopefully that means it is nothing serious.
She also had an echo, a Mayo echo that takes 45 minutes for a short one, she had one in the OR and it is normal to have another one a few days after transplant to make sure the heart is doing ok. She had a EF (ejection fraction) of 65% which is great!!!! They also discovered she had a pleural effusion (water around the lungs) and they tapped it and took out about 400 cc's of fluid but she could not tell the difference. She had pleural effusions before but the diuretic has dealt with them but this one seems a little bigger.
Good news, I think, they took the foley catheter out today but she is also still on Lasix (diuretic) so she will have to be up and down to the potty more (yes, I am almost 52 and I said potty).
She walked around the ICU nurses station twice, she only got around once yesterday.
More good news, they took the last chest tube out today so now all the chest tubes are out! She was watching TV for the first time since she has been there, good sign.
I forgot to mention previously that she was calm as a cucumber the night we got the call. She just got a little nervous when they were about to wheel her into the OR. I was amazed!
She also had an echo, a Mayo echo that takes 45 minutes for a short one, she had one in the OR and it is normal to have another one a few days after transplant to make sure the heart is doing ok. She had a EF (ejection fraction) of 65% which is great!!!! They also discovered she had a pleural effusion (water around the lungs) and they tapped it and took out about 400 cc's of fluid but she could not tell the difference. She had pleural effusions before but the diuretic has dealt with them but this one seems a little bigger.
Good news, I think, they took the foley catheter out today but she is also still on Lasix (diuretic) so she will have to be up and down to the potty more (yes, I am almost 52 and I said potty).
She walked around the ICU nurses station twice, she only got around once yesterday.
More good news, they took the last chest tube out today so now all the chest tubes are out! She was watching TV for the first time since she has been there, good sign.
I forgot to mention previously that she was calm as a cucumber the night we got the call. She just got a little nervous when they were about to wheel her into the OR. I was amazed!
Thursday, April 14, 2011
Day Four - April 14
This was a long day for Margaret. She was still having some bowel pain in the morning. This morning they got her up and WALKING! It was a short walk but took a lot out of her so a nap was in order. After lunch she was able to get some relief from the bowel issue and it has helped a lot. She still has some discomfort but it is much improved. All is still going well, they are still trying to wean her from her heart med (isoprotenal) that is used to keep her blood pressure at a normal level. It takes 48 hours or sometimes longer to stop it and let her body take control of that. Once they can stop that IV they can take a lot of the IV's that are in her neck catheter out. They will still keep the catheter in but most all of the lines will be taken off. I looks like there is some plumbing code that is being broken by all the branches going into that one catheter. I have a picture of it but at this time have no way to upload the pictures....yet.
At about 3:30 she was moved to another room in the ICU, she was in a really big room that was the size of two rooms but was moved to a normal size room. Apparently there was someone new who needed lots of room for machines to help them.
Overall she is doing very good which is great news. She had a little chest pain tonight when using the 'facilities' but they said that was normal since she had just spent a long time in bed. She was sitting in a chair for a longer period today than yesterday which is great. There is no longer a nurse or two in her room at all times which I take as a good sign.
The doctor stopped by this morning and thought everything was going good. When she is bumped out of ICU she will go to a cardiac floor for some period of time and then we will move to the Gift of Life Transplant House. The Gift of Life is a house that you can stay at if you have had a transplant of some kind. We have talked to many people from the support group that we participate in for Amyloidosis who have stayed there and they have great things to say about it. Among other things it is sanitized for your protection. More on this later when we move there.
I just left her since she is really tired and she is about to get a bath then off to sleep for her. I am guessing tomorrow may be another long day for her, more walking.
I would also like to thank my kids, they are a tremendous help whether they know it or not! They make things easier so thank you two!!!!
Thanks for checking in!
Jim
At about 3:30 she was moved to another room in the ICU, she was in a really big room that was the size of two rooms but was moved to a normal size room. Apparently there was someone new who needed lots of room for machines to help them.
Overall she is doing very good which is great news. She had a little chest pain tonight when using the 'facilities' but they said that was normal since she had just spent a long time in bed. She was sitting in a chair for a longer period today than yesterday which is great. There is no longer a nurse or two in her room at all times which I take as a good sign.
The doctor stopped by this morning and thought everything was going good. When she is bumped out of ICU she will go to a cardiac floor for some period of time and then we will move to the Gift of Life Transplant House. The Gift of Life is a house that you can stay at if you have had a transplant of some kind. We have talked to many people from the support group that we participate in for Amyloidosis who have stayed there and they have great things to say about it. Among other things it is sanitized for your protection. More on this later when we move there.
I just left her since she is really tired and she is about to get a bath then off to sleep for her. I am guessing tomorrow may be another long day for her, more walking.
I would also like to thank my kids, they are a tremendous help whether they know it or not! They make things easier so thank you two!!!!
Thanks for checking in!
Jim
Wednesday, April 13, 2011
Day 3 - April 13
Today she was up in the chair again eating normal hospital food if you call hospital food normal. Before lunch they removed 2 out of the 3 chest tubes which was cool to watch (yes I am weird) and is a big deal. The doctors are still very pleased that she keeps improving at the rate that she is.
Her bowel is starting to wake up and causing some pain but that will get better with time and things passing. She continues to have very little pain from the chest except when she is moved. She is self medicating and she only pushes 'the button' when they need to move her. It really has been great having the kids here. They keep me company and Margaret likes having them here also although they keep me up way to late at night but it is good.
They are talking about moving her out of ICU in a few days and maybe discharge early to mid next week.
Her bowel is starting to wake up and causing some pain but that will get better with time and things passing. She continues to have very little pain from the chest except when she is moved. She is self medicating and she only pushes 'the button' when they need to move her. It really has been great having the kids here. They keep me company and Margaret likes having them here also although they keep me up way to late at night but it is good.
They are talking about moving her out of ICU in a few days and maybe discharge early to mid next week.
Day 2, Tuesday April 12
Amazing! That is the word of the day. I went to Margaret's room this morning and she was sitting up in a chair having a liquid breakfast (not alcohol) . The doctors are VERY happy with her progress and how well she is doing. One doctor even called her the 'Transplant Queen' because she is doing so well.
For lunch a mere 26 hours after surgery she was having some solid food and dinner was a normal hospital dinner.
They are stopping some meds while starting others. They have started antifungal, antiviral and antibiotics which she will have to take the rest of her life.
The infectious disease doctors are very happy with the match with the antibodies she has match pretty darn well with the donors which makes things easier.
For lunch a mere 26 hours after surgery she was having some solid food and dinner was a normal hospital dinner.
They are stopping some meds while starting others. They have started antifungal, antiviral and antibiotics which she will have to take the rest of her life.
The infectious disease doctors are very happy with the match with the antibodies she has match pretty darn well with the donors which makes things easier.
And Then the Phone Rang.....
On April 10th at about 8:00 we got a call from the Mayo Clinic that they had a heart for Margaret. Both of the kids happened to be home so we packed our luggage and the kids drove us to Palwaukee (sp?) Airport for our chartered medical flight to Rochester Minn. They had already evaluated the heart from test results but until they physically see the new heart there is a chance that they would just send us home. Due to storms our 1 hour flight took 1 1/2 hours and was initially delayed due to bad weather going through the area. We landed at about 1:30 AM Monday and go to the hospital at about 2:00 where they immediately started preping Margaret for the surgery. At about 4:00 AM it was a go and I let the kids know so they could book the first commercial flight to Rochester in the morning. They got an 8:30 AM flight to Rochester landing at 9:45 getting to St. Mary's at about 10.
At about 9:30 Margaret was moved to ICU where they did some more test and checking before they would let anyone see her. The kids got to the hospital at about 10:00 and we all went to visit her together. She was still pretty much out of it with lots of tubes and wires coming out. The Doctor said the 'procedure went without a hitch and the new heart was in great shape and should last a long time'. He also mentioned he was surprised that her old heart was working so well given it's appearance and how bad it was.
They started waking her up a few times and she started to fight it and they put her back under. At about 2:00 they woke her up and at about 4:00 PM they took her breathing tube out and she was able to talk. Later that evening she was able to drink fluids, specifically cranberry juice which she was not allowed to have for years since it interfered with her blood thinners. She was also able to elevate the bed and sit up. Not bad given she had major surgery to replace her heart less than 18 hours before.
At about 9:30 Margaret was moved to ICU where they did some more test and checking before they would let anyone see her. The kids got to the hospital at about 10:00 and we all went to visit her together. She was still pretty much out of it with lots of tubes and wires coming out. The Doctor said the 'procedure went without a hitch and the new heart was in great shape and should last a long time'. He also mentioned he was surprised that her old heart was working so well given it's appearance and how bad it was.
They started waking her up a few times and she started to fight it and they put her back under. At about 2:00 they woke her up and at about 4:00 PM they took her breathing tube out and she was able to talk. Later that evening she was able to drink fluids, specifically cranberry juice which she was not allowed to have for years since it interfered with her blood thinners. She was also able to elevate the bed and sit up. Not bad given she had major surgery to replace her heart less than 18 hours before.
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