January 31, 2010
Mom's Notes from Mayo
There is so much information to share, and so many people who want it, I thought it would be best to use Mom’s own words to share with y’all everything I know about everything she knows – or doesn’t know, yet.
The unedited notes begin with her arrival in Minnesota after flying from Naples, FL to Rochester, via Detroit.
The "hotel" she refers to is similar to UM's MedInn. It is a part of the Mayo Clinic's set-up. New patients are not admitted to the hospital until testing is complete and a diagnosis is given.
1/31/2010 4:41 PM
It is definitely cold, but our hotel has underground walkways to our first appointment tomorrow morning, mon at 6:30 a.m. really, really, hoping you all get this. will talk to you tomorrow. thanks for all the love and support.
judy and walter
2/1/2010 9:48 PM
Of course for those of you who know it, you know Mayo is an amazing place. We were admitted at 6:30 am, saw our internist by 7:00, had three tests by 10:00, breakfast but because i was still fasting only yogurt, then two more tests by 1:30, then one more before we tried to get them to rearrange a few tests for the rest of the week. They did and now we will be done (we hope) by Feb 5 instead of the 15th.
As you know the pulmonologists in Naples said it wasn't my lungs, it was my heart. The new guy here looked up some old tests, compared them with the ones i had just a week ago when i was in the hospital before coming here and pronounced my lungs were at least 3/4 worse now, therefore we have a lung problem here not heart based. there may be some involvement with my polymyalgia, but the next few days specific tests will show if that is right. Meanwhile, we are exhausted but feeling confident they will find what they are looking for.
i will have the biopsy at the end of the week to rule out (or in) Sjogren's disease. this is the one i refused in naples because i didn't think they could do it safely enough. i am very glad i am here and it will be done here.
tomorrow is another day of 4 different tests than i have ever had. hopefully we WILL get in a nap before a nice dinner. some very lovely restaurants in downtown Rochester almost all reachable by underground walkways. Walter is getting some workout wheeling me all over.
thanks for all the good wishes. talk to you tomorrow.
love, Judy and Walter
2/2/2010 6:14 PM
today i got to take off the nighttime oxygen monitor, return it and put on a 24 hour blood pressure monitor. every ten minutes the thing goes off. except at night when it goes off every twenty minutes. it goes back at 7:30 tomorrow morning.
next was a 'liposuction" of blood and tissue from my stomach that has some enzymes in it that will show some rare heart thing. then i had an arterial gas test. asked for the best blood drawer, didn't get her at first. after 5 sticks someone got it. and then to top it off, a biopsy of the inside of my lip which believe it or not was the thing i was most apprehensive about and turned out to be a piece of cake. swollen and hurting but that will go away. looking for another rare disease. will know in 2 days.
they are nothing if not thorough. some more unusual things again tomorrow. a swallow evaluation.
going to bed now and hopefully will not get up until the bp machine comes off. thanks for the notes. talk to you tomorrow.
2/9/2010 8:11 PM
my second day of injecting myself with insulin. i do not have to go to the observation tomorrow. they think i've got it. my big appointment with the vascular doctor is tomorrow along with we hope an answer to what to do.
walter decided since we will be here another week that he would check in and have a complete physical. he is great, however, our endocrinologist back home had him on much too much medication a lot of it duplication. the doctors here took away no less than 5 medications he does not need. i had a feeling this was the case but then you trust your doctor. we are so pleased with the results. he has a few more tests to completely clear him and he (and probably me) will come here every summer for a physical and a checkup. the endo said we will communicate by fax for tests and telephone if he should change anything. it is a weird feeling to feel that a long distance has his finger on all the problems and the local one is a drug pusher.
we both have some diabetes classes to go to. mine is to learn how to adjust the insulin when the prednisone dosage is hopefully reduced. walter's is to manage his new insulin routine. no byetta and now insulin before every meal, keeping a better eye on the whole disease.
we are still amazed by the quality and care of the staff here. the depths to which they are able and willing to go to find an answer is stellar. we are glad we came.
tomorrow can't come soon enough for both of us.
thanks for sticking with us. we love you all
love, judy and walter
2/3/2010 9:02 PM
something called a swallow test to see if any food, liquid was getting into my lungs. answer no. this place is amazing. they order a test, they do it usually within an hour and the doctor has the results in another hour. just wow
consultation with the cardiac team. good news: there is NOTHING wrong with my heart. absolutely nothing. the problem is my lungs and it is major. i am able to use only 30% of my lung's capacity. not too good. the docs are very concerned, so tomorrow we start a course of different and unusual lung tests. which means of course that we will be here perhaps another week. but at least we will know. don't know the course of treatment until they tie in the lung problem with my rheumatism component. they seem to think they are related.
very glad we came. they all say "very unusual, very strange, very we will keep trying until we find out" for which we are very thankful.
another very early day tomorrow so to bed. thanks for all the notes and love.
and by the way through the tunnels again to another fabulous restaurant. this time we met people we have been running into all day at the testing sites.
what a place.
judy and walter
2/5/2010 11:04 PM
It is called a “shunt.” It sees oxygen coming and decides not to let it get into my blood. I am on full time oxygen which is like a bandaid for a broken leg. It does not give my body oxygen to use, only oxygen to help me breathe. As the head of my teams says, “This is extremely complicated.”
We know what it is but we do not know where it is. The two 2.5 hour tests today were positive for shunt activity. One showed there is one but it is not in my heart. One showed there is one but it is probably not near my lung. The liver test showed an abnormality and will be followed by an ultrasound on Monday. The other 12 doctors (who were not on the team before today) have set me up with a vascular/hematologist team for Monday. And we still don’t know what they are looking for and what they will want to look into.
We are feeling a little more positive now that we know at least what it causing the shortness of breath. There is no reason for this to have happened. No travels, no flu, no unusual exposures to anything, nothing I did.
And so, we wait. What have been given permission to do anything we want to this weekend. So we have chosen the Mall of American and we are going to have some fun. We will take the wheelchair and the oxygen to use if we need them. Sunday is sort of a rest day with some time in the hotel pool. Just can’t get overtired. Already know how to do that! Walked behind the wheelchair to our room tonight. It felt so good. Now we can go to another fabulous restaurant tonight.
Will be here at least another week. Updates on Monday, if we know anything. Here the feedback is instant so maybe we will know what direction we’re headed in.
Our thanks and love to all of you for your thoughts and support. It helps us tremendously to know that you are out there pulling for us. We love you all. Judy and Walter
Post script: When I spoke with Mom @ 6:00 pm tonight (2/6), they were at the mall still. She was ordering an oreo cookie milkshake made with yogurt, and had completed some serious retail therapy – to the tune of 8 sweaters at C.J. Banks. :-)
2/12/2010 6:41 PM
After a lot of searching for the cause of the embolisms in my lungs, they found out how they got there.
I have blood clots in my legs, evidentallly more than anyone thought and they are breaking off and going to my lungs and literally taking my oxygen and breath away.
The fix is to load me up with heparin AND coumadin. This will stop new clots from forming. Then we have to achieve a level of medication that will keep this from happening again. It will probably take another week for this to happen. This also means oxygen for at least 6 months until we return here for follow-up tests. We will not let anyone in Naples do it. The pulmonary group in Naples did not go tests for clots. Where the clots came from is anyones' guess but they were there to be found by someone who knew what to look for.
The next thing we are going to do while we are here is to start to reduce my prednisone until I am able to get off it completely and see if the polymyalgia returns. I can then get the blood sugar levels more normal and cross that off my list of meds I don't need or want.
Next week is a course on how to reduce the insulin as I reduce the prednisone, and most likely some more blood tests, etc.
My liver is a very small concern and seems to be "healing" on its own most likely with the coumadin and insulin.
We have decided to return here every summer (more if they want us) to check all these developments out and see if everything is still on track. The doctors are more than willing to order blood tests have them faxed and then CALL US, YES THAT SAYS CALL US, USUALLY THE SAME DAY to discuss the results and treatment.
We continue to be amazed at the quality of caring, and care by these people. Today at 9:30 am i had the ultrasound of my legs and at 11:00 I was in the doctors office with the answer as to why I couldn't breathe when I got here.
One of the nurses told me that they won't let anyone go home until they have solved the problem. After 12 days of testing, we believe it.
Thanks again to all of our wonderful family and friends for your calls, e-mails and prayers. you helped make some difficult days tolerable and uplifting.
I will write again when we know how long it will be for sure until we are able to come home.
All our love, Judy and Walter
2/15/2010 11:25 PM
Bottom line came today. Coumadin forever, oxygen for at least 6 months, no physical exertion lest we release a clot, a plan to decrease the prednisone to 0 very very slowly and a lung check-up back at Mayo in June. To tell you the truth we would come every month if they wanted me to.
It has been a long haul but now there is an explanation for the 30% utilization of my lungs. The blood clots in both legs traveled to my lungs which were already pretty full of clots on their own. Add the new ones and the oxygen which has been trying to get into my bloodstream had absolutely no place to go so pretty much no lung/breathing capacity. The oxygen 24/7 is an aid but not a fix.
The fix is heparin and coumadin in combination until we get an INR of 2-3. Mine since we found the problem and have been measuring is 1. They think it will take the better part of another week for this to happen.
Patience is a virtue they tell me. Walter and I were almost running out but then they came up with the solution and we are energized again.
Meanwhile we are on a plan to decrease my prednisone to 0 over a course of 12 weeks. i took a course to learn how to adjust my insulin to the decrease. A little tricky but not impossible to do.
I was looking forward to exercising as part of the diabetes weight loss program but not to be because of the risk of releasing a clot. I will be allowed however to spend 15 minutes a day in the pool doing mild water aerobics. Better than nothing.
We are making tentative arrangements (car, oxygen) to leave for home sometime in the next week or so. we will be driving. just easier than the hassle with the airlines over oxygen and the hassle of having the oxygen people meet the plane in Naples so we can get home safely.
As always we are so very grateful for all the good wishes, prayers and mishaberachs. It makes making the effort to make it one more day worth it when we hear from all you loves. can't wait to get back home and see everyone.
Other than loving the MN weather we will be eternally grateful we came. As we have said before the treatment , care, concern and tenaciousness at Mayo we don't think can be matched anywhere else. They told us no discharge until we have found and treated the problem and they meant it.
The only thing the doctors here are a little unhappy about is that they can't find a reason for the clots to have started in the first place. i should have some weird numbers on some tests i took and they are just not there. we are perfectly OK with that. and we told them we love them anyway. As we do all of you.
Good night and we'll let you know when we start for home.
love, Judy and Walter
2/19/2010 5:39 PM - Going Home
We were waiting for results between 2 and 3 for my coumadin level and this pm i had 2.5. Yahoo!!!!!!!!!!!!!!!!!!! so i am officially discharged. we hoped for good news so we got a car and started packing this am. so tomorrow saturday we start for home. we will take our sweet time and probably arrive on thursday. it has been an experience. a very very good one. i wasn't aware that you can just come here, with an apppointment of course and be checked out. well, goodbye for now and hello Naples.
thanks everyone for ;your love.