Day 51 May 31st
Monday was a holiday and I felt pretty good, so Amy and I went to Mall of America (1 1/4 hours away).  I sat on benches a lot of the time, but we had a nice day.  Amy especially enjoyed MN's no sales tax on clothing, etc.  Had to nap when we returned but I was happy Amy got to see MOA.

Today, Tuesday, was just medication refills and cardiac rehab.  They had given me some exercise sheets to improve balance.  I am more balanced than 3 weeks ago, but still not so good.  Amy is quite the task master and I am now doing the exercises regularly.

She also has me working on going up the stairs.  I have been going down whole flights of stairs for a few weeks, but we just started up.  I do a flight up a few times a day.  Still makes me a little short of breath but that is improving along with my leg strength.  It is amazing how a major (and I mean really major) surgery and 5 years of growing increasing idle can mess a body up.

Looks like a quiet week here except for Thursday.  They always fill up my Thursdays.  Hope your week goes well.

Day 48 May 28th
I would like to say that sleep is good.  Last night I had the best sleep yet since being sedated.  For the last several weeks I have gotten up 4 times a night.  The docs are very pleased with the efficiency of my kidneys, but that was ridiculous.  Also, it often took more than an hour to get back to sleep.  But last night I only got up twice (I am in my 50's so I cannot expect better than that).  And I got back to sleep each time!!  Once I slept for 3.5 hours straight.  I was perky enough today for Amy and I to visit Wal-mart.  I was exhausted when we returned but that is OK.  We had great weather today; 70's, low humidity, sunny.  Looks like rain any minute now.  Clinic is closed for the long weekend, so the next few days will be quiet.  The transplant house is a bit empty.  The caregivers prefer a calm kitchen.  That's all for today.

Day 47 May 27th
Hello all.  Thursday was a busy clinic day; labs, chest x-ray, nurse co-ordinator visit, doc visit and echo (heart ultrasound).  A full day.  Today, Friday, I had exercise at the clinic and a chest CT at St. Mary's Hospital to answer a few questions from the echo results.  The scan results were good.  No heart blood clot, nothing to worry about, which is nice.  The scan department was running very late so I had to scurry to exercise.  Amy roams around downtown Rochester during my exercise class (luckily her sense of direction is way better than mine).  No appointments for the next 3 days and no needles till Thursday (except for the ones with blood thinner that I shoot in my belly each morning).  My veins are bad at best (narrow, and they move and collapse) but they are really beat up now, so getting blood drawn and IV's inserted makes me a bit sad. 
Hope you are all well.  Have a nice Memorial day Weekend.

Day 45 May 25th
Hello.  It has been a quiet couple of days.  Just chores and cardiac rehab (exercise).  They are actually making me sweat now!  That is a new development.  Jim went home :(  and Amy has arrived :).  Tonight we had a house dinner.  A local Lutheran church cooked for us.  The part that I could eat was a meaty, cheesey lasagna.  Yum.  It's been years since I could eat that (my salt restiction is not as strict as when I had congestive heart failure).  Amy was happy not to have to cook.  I have a full day of appointments tomorrow, so Amy will get the full Mayo Clinic experience.  Good night.

Day 42- May 22nd

Hi there, it's Margaret writing the blog now.  I feel pretty darn good, thanks for asking.  Friday I had a chest CT to check out that pokey feeling at the top of my incision.  Saturday, Jim returned and Rich went home.  Had a great week with my little brother.  It had been over  40 years since we shared a room together, but all went well.  Also on Saturday, one of my transplant docs called with the results of the scan (of course by then the pokey feeling was gone).  Looks like no infection at the top of the incision, but they found two other minor things that they will follow up with additional scans.  Sunday, we actually took a short trip to Kohl's (Jim's clothes were getting tacky).  No eating after seven, due to AM blood work to check the level of one of my anti-rejection meds.  The level changes frequently and then they change my dose.  Working toward getting everything in balance for when I am home.  Amy joins me in a few days.  Matt's water polo team ended up in the top eight at State. 

Day 39 - May 19th

Margaret had her third biopsy today, the results, 0 rejection!  She has 3 more to go but they are now every other week.  They increased one of her anti-rejection meds, it is based on a blood level and they need it to be stable.

She has found a spot at the top of her chest incision that she describes as poking.  They are going to scan it to see what it is.  If it is a collection of fluid they will tap it, the doctor described it as 'squishy'..

They scanned her neck for the biopsy today to take a look at the blood clot.  It is still there but it is real small.  It probably always has been real small since they think the clot developed on the catheter and ‘stuck’ when they pulled the catheter out.  It is possible that the blood thinner has made it get smaller but probably not significantly in this amount of time.  After 3 months it will be part of the vein wall and be safe but it will probably be scanned again at that time just to be safe.

In what seems to be our never ending battle of getting off her off magnesium pills they once again changed it back to the original dose.  They had reduced it to half but now we are back where we started at.  This is not a big deal, all things considered, but it does have some side effects, let's just say intestine issues – don’t ask.

Day 38 - May 18th

The day Margaret had her transplant she was number two of three for heart transplants that day.  The person who was transplanted first we have met and is also staying in the transplant house and the third person was a seven year old boy.  She has met the boy and he is doing fine.  That makes the docs three for three on that day.

Tomorrow she has her third biopsy in the morning and then doc appointments in the afternoon.  So far the first two have had no rejection, yippee!

She and her brother have been walking to and from the clinic every day.  Once they took the shuttle so the rest has been all hoofing it.  After cardiac rehab she and her brother went out to dinner for Rich's birthday, he is 30 (yes Rich I know I subtracted a few years for you and you are welcome).  After dinner at Chester's they walked back to the house so that is a fair amount of walking in one day.  By the way Happy Birthday Rich and thanks for all your help!

That's all I got for now, thanks for checking in.

Day 36 - May 16th

This is actually a few days because things have been hopping around here.  Saturday an neighbor from the old hood stopped by. Jan was in the Twin Cities on vacation and driving back and stopped by.  There was actually a group of girls, women, chicks, females (I give up on being PC) who stopped by and we had a very nice visit.  Shortly after they left Rich (Margaret's brother) arrived to take over caregiver duties for a week so I was able to go home (where I am now) and go back to work.  I hope he doesn't get fed up and leave, it is nice to see the kids and get back to work.  It is really very nice that he volunteered for this duty.  Matt's water polo team won Sectionals this weekend and has made it to the State Playoffs (top 8 teams in the state) and I will be able to see the first game!  Very exciting, thank you Rich!!

Sunday Margaret and Rich walked to the clinic for no good reason except to get out and walk some, later she spent time on the treadmill in the 'House'.  Don't tell anyone but there is a TV in the exercise room that most people don't know about so when 3 or 4 TVs are watching Dancing with American Idol or something stuff like that you can sneak into the exercise room and watch something good (sorry to the Dancing with the Stars and American Idol fans out there.  Actually, not to sorry).

Her pleural effusions are gone!  Yippee!!  But they still want her on the Lasix (diuretic).  But taking it every other day makes it easier.  They also reduced the amount of magnesium supplement she was taking to half.  In case you didn't know magnesium can have an less than desirable effect on the digestive system, I will leave it at that.

That's all we got for now.

Day 33 - May 13th

I was going to make a post last night but the blog server had everything 'read only' so they could fix some problem.  Thursday Margaret had her second biopsy and the results were NO REJECTION!  Yippee! This is good news, Happy Days!!

Her pleural effusions (fluid around the lungs) was much better, almost gone.  Because of this they have reduced her Lasix (diuretic) to only once every other day now which means maybe she can get a good night sleep.

Rehab is still going well, she has it three days a week and so far so good.  She's walking better every day. When the weather is good we wake to and from the clinic.  We walked around Wallmart today without any problems.

We had some extra time the before her biopsy on Thursday so we went and walked through the chapel at St. Marys.  Wow, very amazing place.  I really can not do it justice with words but if you are ever here it would be worth taking 15 - 30 minutes to see it, especially since it was built in 1932.  It would also be good if you knew latin since most of the writing on the walls/ceiling is in Latin.

The 'House' had an ice cream social on Wednesday, the sisters and the Mennonite helpers were on hand to pass out ice cream sundaes and root beer floats.  The weather was nice and everyone sat out on the porch.  It was a nice event that let us all talk with one another.  You can do this at meals if you are the patient but the caregivers are busy cooking or cleaning up so there is not much time to just talk.

A sister told us today that there are 22 people moving in on Sunday, I know a good number of people went home yesterday and today and it was pretty quite at dinner tonight, not the normal chaos in the kitchen, more like organized chaos.  Sunday should be interesting!

Day 30 - May 10th

One third of the way done!! It was finally a nice day today, 80ish degrees and sunny.  We walked to and back from the clinic today.  Going there was downhill and we had done it before but she was walking a little faster than before.  Going back it was warmer, much higher humidity and uphill so there was one stop, pretty darn good if you ask me. 

The appointments about the 'skin issues' turned out to be what we thought, nothing.  But transplant wanted us to see their dermatologist so we played along.  She went longer exercising today than yesterday which is really good.  Going back to the cardiac rehab and back to the 'house' we took the shuttle because it was very warm and very humid, I thought I was in Texas in July, ok maybe not that bad.

Tomorrow, as of now, we have nothing in the morning expect working around breakfast and her meds.  Soon I think we will be dropping another med or two, well at least one.  Margaret would really like to dump the blood thinner shots but that is not in the cards for a few months but at least it is only once a day for most days except the day prior and the day of her biopsy which is Thursdays.

Tomorrow is also supposed to be warm and humid then it is supposed to cool down to then by the weekend it should be in the 60s and rain, of course rain, it is Rochester.  Monday morning we walked to the clinic and it was nice weather by the time they had drawn her blood it was dark, real dark and then the rain came.  One of the people who worked in the the clinic actually said 'Good we could use the rain for our lawns and gardens'.  I was shocked, they were about to start building an arc up here and they wanted MORE rain, REALLY... REALLY?

Thanks for stopping in!

Day 29 - May 9th

If there is not a post on a given day just reread this line:

'It was a boring day of appointments, cardiac rehab, cooking, cleaning, laundry and shopping.'

That should about do it 'cause if there isn't a post that is about what happens during the day.  Boring....

Now about today, we met with a blood clot doc (I am sure he thinks he has a more impressive title) who said that her blood clot in her neck is nothing to worry about but she will just have to be on blood thinners for 3 months and all cardiac biopsies will need to go through the leg.  The tricky part is if she went on the blood thinners she was on before it would become effective (therapeutic level) when she would need to stop them because of her heart biopsies so they are just going to stick with a daily shot she gives herself.  They are to be given sub-q which I found out means in fat, I could take them anywhere but she has to pick certain spots.

She started cardiac re-hab today and will be doing that Monday - Wednesday for an hour each day.  So far she says it is not bad but she started at a better place than some who have transplants.

If the weather is good we are now walking to the clinic, it is not really far, about 6 blocks and downhill so not a real strain and she is able to talk all during the walk.

If it is a day at Mayo it must mean that your schedule must be changing, we have had days where we have had to print the schedule 3 times and at the end of the day it was changed again.  We originally had Tuesday AM open but tomorrow it now has a dermatologist from transplant appointment.  There are some patches on her skin which have been there a while and a Mayo dermatologist has said is nothing but they want there transplant dermatologist to take a look.  Yes, transplant has there own dermatologist, the anti-rejection drugs can have an effect on your skin, skin cancer is the thing they watch for.  Fortunately is is an easily treatable kind that usually shows up if one shows up at all.

We were also able to attend the solid organ transplant support group meeting that is at the hospital on Monday afternoons.  I had been to one before but this was her first, she said she likes it and we will go back again when our schedule permits.

That is all I have for now, as Tigger says TTFN (Ta ta for now)

Day 27 - May 7th

Ok, ok, I have been slacking off, I admit it.  It has been a few days since I posted something.... get over it, I know I have.

Well here it goes, bottom line is things are still going good.  A few days ago at the end of dinner about a dozen Mennonites walked into the dinning room and  serenaded us, it REALLY sounded good.  Apparently they sing at both transplant houses and the Hope Lodge (similar to the transplant house but for cancer patients).  During the day some of them work here in the transplant house with housekeeping of the public areas and they are all very nice.

Friday was a big day, the weather was not bad so we walked to the clinic for her appointments!  We were a little concerned to try it to early because if you start out and can't make it you are stuck.  It is only about 6 blocks and she did a great job.  We left to have plenty of time since she gets her blood work drawn at 7:30 - 7:45 because of her meds.  She has to get the blood drawn right before she takes her anti-rejection meds to see what her levels are at the end of the dose.  So far they had been steady and haven't fluctuated hardly at all.

Margaret started cardiac rehab on Friday.  It was the first meeting and it was mostly an orientation meeting but she did do a 6 minute walk.  They see how far you can walk in 6 minutes.  She has done that before when she was waiting for the heart.  They say that it is a surprisingly reliable test even though I would think you could easily mess with the results.  She will being doing rehab Mon, Tues and Wed with her cardiac biopsy on Thursday.  Friday will be a physically off day to recover from the biopsy.  Obviously (to me) there are other appointments throughout the week, blood tests, chest x-rays, meeting with transplant docs, etc, etc, etc.

We are meeting some very nice people at the transplant house and most are doing well, a few have had some minor hiccups that have landed them in the hospital but that is not unusual.  Other than not having a TV in your room and having to camp out to get a TV so you can watch a particular show it has been a good experience.  The sisters who run the house are very nice and helpful.

That's all I can remember....

FYI U Bob, I did check, they only transplant, the do not do installs.

Day 24 - May 4th

There wasn't a lot new today, just appointments and checkups.  All is going well.  Instead I will show you the dinning room and kitchen.  I knew you were just dying to see it...

Our dinning room above and below, there are two different dining rooms. You are assigned by room number.

This is the amount of room you have in the freezer, what will fit in the green box.  Answer is not much.

You get one of the vertical cabinets for pantry storage.

Nice kitchen if you didn't have to share it with so many people.  At meal time there could be 10 - 15 people in this little area.  The refrigerators are on the right (silver) you get one shelf and behind each door is two shelves.

The silver thing in against the back wall is a sanitizer, all plates, glasses and silverware has to go through it.  You are the dishwasher.

Prep area

With the limited storage space there are trips to Walmart and the grocery store numerous times in one week.

Day 23 - May 3rd

Well we had a few new appointments today to find out what was going on in Margaret's neck.  After some testing it turns out to be as they suspected, a blood clot.  We get to see a thrombosis doc and see what they say, she may go back on blood thinners but we will have to see (more changes to the schedule).  Right now the only issue is they have to go through her thigh to do her biopsies for her heart to check for rejection. 

She had a large blood clot in her heart a few years ago and that is why she originally went on blood thinners, it is common with amyloid hearts.  I think they were going to make it standard protocol for people with amyloid that is attacking the heart.  None of the doctors are real worried about the clot though, the blood thinners, if that is the way we go are to dissolve the clot or to dissolve it faster.

It was a breakthrough day though today, because of the timing of all the tests we did not have time to get back to the transplant house for lunch so we were forced to eat around the clinic, we thought the best choice because the food is served very hot would be Victorias!!!!  I really like the food there so it was a good choice.  Yum yum!!

There must be something weird in the weather, it was sunny this afternoon, no one was sure what the big yellow thing in the sky was.  Eventually we determined it was the sun, what a rarity!

Thanks again for checking in.

Day 22 - May 2nd

Well it has been three weeks we have been in beautiful Rochester, did I mentioned it has been raining/snowing everyday but three since we have been here.  I am not really complaining since things are going so well.  Today was a LONG day though, started at 6:30 AM and ended at 4:30 PM when we finally got back to the transplant house and had breakfast.

She had her first heart biopsy today.  They normally fish the catheter through the jugular down into the heart and grab 4 pieces of it to take a look at the actual tissue.  Because of all of the previous catheters she has had there was some kind of blood clot that formed on her jugular vein and they had to go in through the femoral vein, this is not a problem it just takes longer.  They semi-knock her out for this procedure, something called twilight, you aren't asleep and you are aware of what is going on but just don't care.  She came through this procedure just fine.  When they got her up to walk an hour or so after the procedure we had walked about 15 feet and her foot was turning red, blood was running down her leg and on to her foot  from the insertion point.  Not a big problem since it was a vein (lower pressure than an artery) and they hustled her back to bed, put pressure on the 'hole' and then put a 'sandbag' (their word not mine) on it for pressure, an hour later she walked again and no problems!  The end result was there there was no sign of rejection from any of the tissue that was removed!!  This was actually the expected result since she has been on so much anti-rejection meds but it was a possibility.

The blood clot seems to be of interest to the docs and we have a few tests that have been added to tomorrows schedule to see what is going on with it.  No one seems to have their undies all bunched up about it but there is an interest as to what type of clot it is and they just want to find out and then decide what to do about it.

Her blood work is still fine and they are actually taking her off of a blood pressure medicine.

It is amazing how you can have a day that is, for the most part, open one minute and then 4 hours later have the day filled up with appointments.  We get a new schedule printed every morning and today we went through 3 printings and we know we currently do not have the most current.  Fortunately they have the date and TIME that they were printed otherwise it would be impossible to keep them straight.

She starts cardiac rehab some day this week but I am not sure what day right now, I know that it is not tomorrow though.

I heard this quote today from the guy currently sitting next to me:

"The trouble with quotes over the Internet is you never know if they are genuine."
   Abraham Lincoln

I really liked that one.......

Day 21 - May 1st

We had a wonderful weekend!  The kids made the drive and came to visit us, it was VERY nice to see them both, it was a huge treat for both of us.  I really think Matt grew, he just seems taller and I don't think that my memory is that bad yet and no I am not interested in a poll on that.  Matt was going  to swim in the pool at the hotel but it was not very big, it would pretty much be flip turn, flip turn, flip turn, not much room for any strokes. Amy always cheers things up and helped me cook Saturday so she can get the feel of how things work here and that was very helpful.  They stayed at a hotel just down the road and we were able to give them a tour of the transplant house, everything except the private rooms which are the patients rooms.

Saturday Margaret was able to walk about 1 mile without stopping for a break, soon we will be walking to the clinic for our appointments assuming the rain ever stops.  Actually it didn't rain today, it snowed.  I mean come on, it is May for crying out loud.

She is not the only heart transplant patient in the transplant house anymore, there are two more so now she says she is not special.  I would disagree with that statement.

Tomorrow we have a pretty full days with appointments.  They start out with her first cardiac biopsy with her new heart.  We were told not to freak out if there is signs of a little rejection.  If it does show a little they will probably not do anything until they get 2 of them in a row.  There is a very small chance of rejection greater than a little this early since she was so highly drugged on anti-rejection meds.  That can be more of an issue down the road but that just means more drugs.

That's all for now......