A Bump on the Journey

Dear Family and Friends,

Just a short note to let you know that Gary is back in the hospital at UIC.  He started vomiting shortly after taking his medication Thursday morning, and because of all of that, they had me bring him to the ER for bloodwork and to rehydrate him.  They decided to admit him so after finally being brought to a room around 11PM Thursday night, it was around 12:30AM when I got home.  I am hoping that this will be a short stay.  

Thank you for keeping us all in your prayers and continuing to walk this journey with us.

Love,

Nelly, Gary, and family

And my God will meet all your needs

According to the riches of his glory in Christ Jesus.

~~Philippians 4:19 NIV

Adjustments

Dear Family and friends,

It's been quite some time since I have written on here.  Mostly because Gary has been slowly but steadily, gaining strength.  Now, having said that, it hasn't been as if everything is all the way better, it is more that as we have, as we had before the Transplant, learned how to help Gary as well as how to notice and anticipate, for the most part, what and when Gary needs something.

Friday was clinic day.  We had gone in two weeks before for bloodwork, and this time we were here for both bloodwork and follow-up transplant clinic appointment.  We didn't expect any thing drastic, just basically a "you're doing great" appointment and "it'll just take time before you start feeling all the way better and have more energy."

As the Doctor went over Gary's bloodwork from the morning blood draw and compared it to all of his previous bloodwork, she commented that there was trace or small amounts of blood in his urine in all his past bloodwork.  She also told us that when he had had a kidney ultrasound in April while in the hospital, they had seen some kind of a spot on one of his own, nonworking kidneys. When they did the transplant, they left in the old kidneys and the old pancreas.  It was felt there was less chance of infection or other problems in keeping them then taking them out.  She decided that an MRI of his kidneys should be done to make sure that the"spot" wasn't causing the trace or small amounts of blood.  She also felt that because of his continual tiredness,  they should add more iron tests on the blood that had been drawn that morning.  They were able to schedule his MRI for Monday morning.

Gary asked whether he could do more things like mowing the lawn.  I was surprised when she told him that he could and that she didn't put any restrictions of at least wearing his hat, sun screen, face mask, and gloves.  I was going to ask about any of those restrictions, but by then the discussion was already on to something else and then it wasn't until we were driving home that I remembered that I hadn't asked.  I decided we would use common sense.  I have also realized, the more I thought about it over the weekend, that the nurses in the hospital were more insistent on wearing a hat, sun screen, face mask,or gloves   The doctors have seemed a bit more lax, not that they don't care, they also don't want people to live in bubble.  So, as we have been doing since the Transplant, we'll look at both sides, you might say, and "go down the middle of the road".  Guess who mowed part of the back lawn Saturday night, you've got it -- Gary, although it definitely wore him out.  I think it felt good to him to be able to finally be able to do something.  He mowed another part of the back yard on Tuesday afternoon and finished the back yard this afternoon (Wednesday).  Our back yard isn't huge, but for him, it took a long time and each time it wore him out.

Monday morning found us at another UIC location down town to have Gary's MRI.  Our appointment was at 8am but it was 11am before we were done there.  Then it was off to the clinic which is by UIC hospital to have an iron infusion.  The results of Gary's blood work on Friday showed that even though he takes 3 iron pills a day, his iron level is still very low and the Doctor feels that he needs to have iron infusions.  The nurse told us that the Doctor ordered 10 infusions -- 1 infusion a week.  He had his first iron infusion on Monday.  It took about 3 hours for the 1st infusion.  He will have his 2nd infusion on Friday morning because the infusion nurse will be out of town for 2 weeks so it was felt that he should have 2 this week.  So, it looks like we'll be spending a lot more time and days at UIC again.  We have not heard any results yet on the MRI and I'm not sure when we will hear for sure.

They also are eliminating (need to go from 3 to 2 to 1 a day over a 2 week period) one of his medications that was helping to stabilize his blood pressure i.e. help his sitting and standing blood pressures not to be so far apart.  It was also to help with the dizziness he experiences (he still does experience dizziness even though the numbers are somewhat better).

We still are taking his blood pressure (both sitting and standing) each morning as well as his pulse, temperature, and blood glucose.  It's still amazing to all of us how great his blood glucose numbers are and how stable they are after having been a Type 1 diabetic for 31 years with numbers all over the place now that he has a working pancreas.

Some things to pray for:
1) That there will nothing seriously wrong on his old kidney.
2)  That they are able to figure out what is causing the trace or small amount of blood in his urine tests.
3)  That the iron infusions will help to make him feel better and give him more energy but also to bring his iron levels to where they should be.
4)  Strength and energy for me especially since Stephanie and Andrew will soon be leaving for College so they won't be around to help me out.  Also, that I won't let the discouragement take hold.
5) Pray for adjustment to having Andrew and Stephanie leaving home for college, for them to have a good transition and great room mates, and for us to adjust to them being gone from home.

I apologize for taking so long to write, but I've been very tired and I'll admit, somewhat discouraged with this going on even though I know it is not nearly as serious as what some of our friends are going through.  Please continue to keep us in your thoughts and prayers.  We appreciate them very much and appreciate that you are "walking with us on this journey." 

Love,
Nelly and the rest of the family

Come to me, all you who are weary and burdened, and I will give you rest.

~ ~ Matthew 11:28 NIV

Getting better takes patience and time -- "You Have to Crawl Before You Can Walk"

Friday, July 19, was clinic day again.  This was the longest time since we had been at the clinic for an appointment with any of the transplant clinic doctors.  It had been 5 weeks since we had our last visit with the transplant clinic doctors.  Since that visit on June 14, we saw some of Gary's pre-transplant doctors again.  June 17, we saw his nephrologist -- Kidney doctor (see bottom of June 18 post section titled "You've lost a lot of weight"), went to UIC for blood work (talked about in post of June 28), went to Calvin College in Grand Rapids, Michigan for Andrew and Stephanie's orientation for college (see post on July 4), had blood work at UIC again as well as saw Gary's heart doctor at MacNeal Hospital, both of these on July 8 (below), went for the weekend July 12 - 14 to Bradley and Laura's to watch Andrew and Bradley do their 1st triathlon (below) and then it was blood work and transplant clinic day again -- those were just the "MAJOR" Gary things, besides those, there were my own doctor appointments that I've been catching up on in trying to keep myself "healthy" as well as whatever else Peter, Andrew, and Stephanie were doing.  So, even though we had a five week "break" from seeing the Transplant Clinic Doctors, life wasn't uneventful.

Monday, July 8, we had a busy day scheduled but I felt it would be very doable.  We needed to get blood work at UIC as well as see Gary's heart doctor at MacNeal hospital.  I assumed that we would be on our way home by 10:30am and have time to go home, eat lunch, have a quick rest all before we would need to turn around and go to MacNeal for Gary's appointment with his heart doctor at MacNeal.  UIC is on the outside of downtown Chicago and MacNeal is in Berwyn, east and south of us and south and a bit west of UIC.  I was wrong!!!  We got to UIC, parked, registered to have his blood work done, went up to the lab, and that's where things started going wrong.  They said they had no orders for blood-work so...... I tried calling the transplant nurse and when I got no answer, we decided to walk to the Clinic which is in the next building.  We explained with the receptionist what was going on and she said she would check with the transplant nurse and they would do the blood work there.  Well...... I checked at one point whether he should go ahead and take his 9am meds which by then were rather late already and was told no, wait until after the blood is drawn.  By 11am, still no blood draw but again told to wait with taking the medication (now we're 2 hours past time).  You don't want to be a pain because you realize they are busy, but..... this is your husband and you've been told that it is VERY IMPORTANT for him to take his anti-rejection medication at 9am and 9pm except on blood clinic days when you take it right after the blood work is drawn which usually is close to that time.  Finally, I think it was about 11:30am that he finally had his blood drawn and he was able to take his 9am medications.  I decided it was time to find out about his 12 noon medication since one shouldn't double the dose of medication, some of which is the same.  I "re-explained" what had all transpired that morning (didn't feel I needed to take the blame -- I'm good enough at making myself feel guilty without having someone else help me feel worse).  Needless to say.......... we didn't go home in between, and I felt the least prepared then I've been in a long time in taking Gary to his heart doctor appointment.

We stopped at a McDonalds on the way (one good way to up Gary's salt intake, I figured) to his heart doctor appointment and were there in plenty of time.  This nurse, like the kidney doctor's office, was surprised at Gary's weight loss (so much for the telephone calls I made to all his doctors about the transplant -- word didn't appear to get totally through).  The doctor was very happy with how Gary is doing and even suggested that one of the heart medications that he is on, can be dropped because of research that he has learned is not as helpful as originally thought.  Since Gary is a transplant patient, all changes to his medications need to be approved by the transplant doctors, so, Gary's doctor called the transplant nurse to let them know that he was fine if they wanted to drop that medication.  Since he got the answering machine, nothing was changed that day.

On Friday evening, July 12, we drove to Bradley and Laura's home so that Andrew could participate with Bradley in a triathlon in by there home.  It was good to be able to spend time together as a family, but it is amazing how just a drive of 2 hours and the heat, which we were already dealing with at home, can tire Gary out and somewhat set him back, so, Gary spent most of the time sleeping or just resting in their home, with the company of Bradley and Laura's dogs, Bear and Bud, who also enjoy sleeping and resting.  If we would go somewhere, we'd make sure he had whatever he needed, which usually included a glass of Crystal Light and a comfortable place to sleep.  Overall, it was nice for him to have a "change of scenery" and great for us all to get to spend time together.  As to how Bradley and Andrew did?  I really don't know for sure, but Bradley was proud that he still beat Andrew overall, even though Andrew was faster then him in the running part of the triathlon.


Thursday afternoon, I called the transplant nurse to make sure that Gary's blood work for his Friday appointment was ordered since when we had been there July 8, there was quite a mix up with his blood work.  Rather then go through that again, I decided to be "pro-active" and make sure it was ordered.  Our appointment was scheduled (not by our choice, we are just told what time our appointment is) for 1:20 PM, but, we need to be at the hospital for blood work at 9am, since it is best that the blood work is 12 hours after his last dose of his anti-rejection medication and before he takes his next dose so they can get an accurate level of the anti-rejection medication in his system.

When we got to the hospital, we registered as usual, and then went to the lab for his blood work.  This time when we reached the lab, they had our blood work orders -- Yeah! -- so things went smoothly.  Gary was quite happy, since the lab had his favorite kind of band-aids -- Taz band-aids!!!  For those of you who know Gary well, you know that he is a BIG TAZ fan!  So much so, that when Bradley was little, somehow (I don't recall when or why), Gary nicknamed him Taz.  Gary was quite excited one of the first times he went for blood work at UIC that they had Taz band-aids, but ever since then, he's only gotten a cotton ball with tape over it, much to his disappointment so, getting Taz band-aids made his day. 
 We took our usual rests and time to walk to the clinic, and proceeded to wait, hoping, that by some chance, we would be seen early.  We had to wait. We were not taken in early, and if anything, we were taken in late, but we knew that would probably be the case so had come prepared as best one can.

We finally saw the transplant doctor, and, since we were 3 month post-op, it was a "milestone" visit.  It was good for both of us to be able to talk to the doctor and get some of our questions answered. We found out from the clinic pharmacist that what we had done for Gary, upping his over-the-counter of packet medicine, when we were at Bradley and Laura's last weekend, was the correct thing to do, even though, when the doctor heard about it later, he first said we had done the wrong thing, but reversed his thought after hearing what the clinic pharmacist had to say.  He also told us that it is good that Gary isn't feeling great yet and doesn't have a lot of energy because if you.  He said that basically, if he felt really good too fast, he would do too much too soon and that could cause the new organs to reject.

We also asked about some of his other restrictions and were told that as he feels up to it, he can carry more then 10 lbs, but to take it slow.  Also, when he feels strong enough and not shaky or light-headed, he can drive.  We asked about him going out more in public and to movie theaters (since that had been one place that he had been told that he shouldn't go), and basically, we were told that the best thing to do is to use common sense and don't live your life in a "bubble".  The one thing he mentioned that we should stay away from is buffet restaurants, because at buffets, one doesn't know if everyone's hands are clean, and if anyone is sick and might sneeze or so on the food as they are serving themselves.  This is worse for Gary then for most other people, since his immune system is weakened.  He also reminded us that when eating, if something smells bad, don't eat it, because if it smells bad, it probably is bad.  The doctor asked Gary if his feet or hands were feeling prickly at all.  He told us that the loss of feeling (neuropathy), which can be common in diabetics, may reverse itself in time.  That is exciting and hopefully will happen in time.  He has some, but for 31 years of being a diabetic, it isn't as much as it could be.  He also told Gary that his tastes may change because some of his taste buds, whether he realized it or not, might have also been lost, and they too, may come back which may cause him to taste foods differently.

Another thing the transplant doctor talked to Gary about is that the weight drop he has experienced -- aprox 25-30 lbs -- will soon stop.  He asked about Gary's appetite.  After the transplant he had no appetite, but, it has improved considerably.  The way I understood the doctor, he explained that now that he doesn't need insulin anymore, his body doesn't need the food that it needed before, that is, because of the diabetes and the need for insulin, his body would go into a vicious cycle of needing insulin to keep his blood sugars down, but in the process, when his body had too much insulin and his blood sugars would become too low, his body would need more food to bring up the blood sugars which in turn would cause his body to think it required more food.  It leads to a vicious cycle.  Now, his body has to get used to not needing the extra food that his body required before the transplant.  So, although his appetite isn't totally back and at this point he can basically eat what he wants, he will need to watch himself, so that he doesn't become diabetic again.

I've decided I've gained a new respect for the clinic pharmacist and the clinic pharmacist for us.  The clinic pharmacist had seen us on Friday before the doctor, and went over Gary's medication list and was quite impressed with the list that Peter and I had put together, even commenting that it was better then theirs.  Later, the clinic pharmacist made a comment to the doctor that we keep very precise records, at that particular moment, the clinic pharmacist was referring to the list of Gary's vitals.  The clinic pharmacist was also happy with how we had handled Gary while we were gone, upping his over the counter medication. It made me happy, because sometimes, you wonder what they think of you or feel that they think you don't know anything, even though I know that shouldn't be my most important thought.  I told her that I felt much more comfortable on what we should do for Gary and when we needed to call in, etc., now, then when Gary first had the transplant -- I guess that all comes with time.

We need to go back for blood work in two weeks and blood work and see the Transplant Doctors again in four weeks.  Overall, I feel we had a great appointment.  I think everyone wants that "magic pill" that will make everything better at once, but, we need to continue to be patient for Gary to get stronger and feel better and to continue to avoid rejection -- "You have to crawl before you can walk." 

I know this was long again, and two posts in two days, but, a lot has been going on so there was a lot I wanted to put into words, therefore, the two long posts.  Thank you all for your continued thoughts and prayers.  They are very much appreciated.

Love,
Nelly and family

Rest in the Lord, and wait patiently for him. 

~~ Psalm 37:7a KJV

"Three Month Birthday" -- and the "New Normal"

Dear Family and Friends,

Today (July 12) is 3 months ago that Gary received his new Kidney and Pancreas.  When one thinks about it, it's really not a long time, but yet, in other ways, it seems so long ago.  We've kind of gotten into a "new" normal for us i.e. what is normal?

So often I find myself saying about our life and hear others say about their lives, "When will life be normal again?"  What is Normal?  For each of us, that is different.  I looked up the word "Normal" on the on-line Merriam-Webster dictionary and there were quite a few different meanings.  The meaning that I found to be most similar to what I think most of us are referring to when we ask "When will life be normal again?" is:  "conforming to a type, standard, or regular pattern." 

When I think about that definition, I guess our life is "normal" in that we seem to have "conformed to a regular pattern" in our life based on what Gary needs.  Now I don't mean that in a bad way, but for us, right now, keeping Gary healthy is very important.  Part of what that entails is making sure he takes his medication on time 4 times a day -- 9AM, 12PM, 5PM, and 9PM.  Certain medications have to be taken 12 hours apart, particularly his anti rejection medication.  Some of his medications he takes 4 times a day, some 3 times a day, some 2 times a day and some 1 time a day.  When we came home from the hospital, one of the things they sent us home with was a very large pill container with 4 slots for each day.  Right now (today), he takes 12 pills plus a packet of another medication at 9AM, 2 pills at noon, 1 pill plus a packet of medication at 5PM, and 12 pills at 9PM.  We all have our cell phones set with these times as alarms so that we make sure that he takes his medications on time, so, if we happen to all be in the room at the same time when these alarms go off, it's quite a chorus or, if you happen to be with us somewhere and our alarm goes off, don't be surprised when we say something like -- "it's pill time for Dad" and depending who's home with him or if we've left him home by himself, I might call home to make sure he takes his medicine or that someone helps get it for him especially when he's lightheaded or shakey since I don't think any of us want to "refill the pillbox and make sure the right pills are in the right slot.  :) 

Although the number amount is the same at 9AM and 9PM, the kinds of pills are not all the same so when I fill his pill containers, I have to make sure I have the correct pills and the correct amount of each pill (one of them he takes 4 of in the am and 3 in the pm) in each pill slot.  Thankfully, that is a challenge I can handle and don't mind handling.  I have taken care of making sure our pill containers (yes, I also have to take a lot of medication for my health issues) are filled each week for many years already because even before the transplant, we both were on a lot of medications. 

Years ago, I made a medication list on our computer that I try very hard to keep updated with RX #, Medication names, pill strength, alternate names (since sometimes they are referred to by a Brand name and sometimes by Generic),  dosage instructions, when last filled and how many refills left until what date.  Having it on the computer made it nice to be able to take it with to all of Gary's and my doctor appointments since most doctors want to know what medications you are on and this way it was easy for me to keep on top of it ourselves, but also was a good way to go over what medications we were on when we would go to the doctors. 

Since Gary's transplant, I've had to change things a bit to keep my list for Gary similar to the way that the transplant clinic's list looks that they send home on each of our visits.  Peter helped me to set up a new document, because as I mentioned in an earlier post, when Gary came out of the hospital, his medications were at several different pharmacies which caused me a lot of  angst.  On our new form we've also added what pharmacy the medication came from, how many pills I have left after I fill the pill containers, how many days does that equal to and how many pills of that particular kind does he take per day and then per week.  This helps me know when I need to reorder pills so that we have refills on time, since not all of his medications are common medications and may have to be ordered.

Another thing in our now new "normal" life is making sure that Gary drinks enough fluid each day.  Since both Gary and I have Sleep Apnea, and both of our machines require using distilled water, we tend to go through lots of distilled water bottles.  Anyhow, since we were having trouble keeping track of how many of the special cups we've been using for Gary to drink from that we had filled each day, Peter one day took one of these empty distilled water bottles, measured water into it by 1/2 liters, and used a black permanent marker and marked lines on the bottle for each 1/2 liter so that there are measurements for 3 1/2 liters on the bottle.  I try to make sure it is filled each night before I got to bed or if I don't get it done at night, first thing in the morning whomever gives him his first glass fills the bottle.  As we give him a glass of Crystal Light (or any other generic type of Crystal Light) we measure from that amount of water from the bottle and either use that water to make him a glass full or measure the amount out before we pour from a pitcher that we might have ready in the refrigerator.  This way, as the day goes on, we have an idea as to how much more he still needs to drink and how much we need to encourage him to drink more so that he can get his 3+ liters a day in.  As time has gone on, he has gotten better at being able to drink the amount that he needs to drink. 

When we go somewhere, we take a bagful of a variety of individual Crystal Light packets (or some generic kind) a long.  At the beginning, I would make up a bunch of water bottle types of measured drinks along in my rolling back pack so that I would have it measured out and be able to know how much he had drunk.  After having one of those bottles of "red" colored crystal light "spill" in my backpack and get all over things that of course I didn't want it to "hit" (isn't that always the way with red juice?), I decided I needed to find a new way to carry his drinks and keep them measured.  I started carrying bagful of individual packets as well as several water bottles (not always near a drinking fountain or water cooler), and as I make a new bottle, I keep the empty packet so that when we're home again, I can know how much needs to be measured out of the measured jug at home.  It has made keeping track of his fluid intake much easier.

The other thing is that each day we take his vitals -- temperature, blood sugar, and blood pressure and pulse rate both sitting and standing.  We do this first thing in the morning.  When he first came home, we did it 4 times a day and sometimes more often, but that has been coming down in numbers as time has gone on.  If Gary runs a temperature, that is one sign that something is wrong and he could possibly be starting to reject his new Kidney and Pancreas.  We are happy that since his last hospital stay in mid May, his temperature has been great.  We usually take his blood sugar first thing in the morning before he eats so that we can have his fasting blood sugar.  We have never seen his blood sugars so good and so consistent!!!  If they weren't, it could be another form of his Pancreas rejecting and diabetes coming back.  We take his blood pressures and pulse rate both sitting and standing because of the large difference between the two and because he is has problems with being dizzy and lightheaded.  We have a chart from the Transplant Clinic that we keep track of these vitals and can write any comments that we feel should be added for example how he is feeling.  Andrew has probably been my biggest helper with this especially if I have to be somewhere before Gary is up.

Do I (we)mind doing this?  No, but it is time consuming.  Sometimes I get frustrated feeling like I'm not doing anything but yet, there are a lot of things that I (and the rest of us) need to do to keep Gary healthy and it is worth it!  :)

I know there's more to say, but will write another time.  I had started this a week ago but am just finishing it today, and want to write a different post about our visit to the transplant clinic yesterday.

We did it!

HAPPY 4th of JULY

to all of our

family & friends

Dear family and friends,

We did it!  We went on our first overnight trip away from home since Gary's transplant.  It was exhausting, stressful, but fun, and I'm so glad we did it!

Monday and Tuesday was "Passport" -- Calvin's orientation for incoming freshman and parents.  There had been a choice of several times, and we had signed up for this one.  At the time of signing up, we weren't sure who would be able to come, but we figured better to sign up Gary, Peter, and myself as the parents coming a long since with 2 in-coming freshman, we were able to do that and then figure out closer to the time who would actually be able to go with Andrew and Stephanie.  We took advantage of being able to come up on Sunday night and stay in the dorms since we figured that way, if Gary needed to sleep or rest he would be able to do that and join us when he was up to it.  It also gave me a place to rest when I needed it.  Not knowing how things would be, especially in regards to how Gary would be doing, we did not make any plans to see my family that lives in the area.  Somehow, I have a feeling that with two kids going to college there next year, we'll also be making more trips out there and then we can hopefully spend time with family.  We did get a chance to see one of my brothers.  He called me while we were at PASSPORT to see if there was any chance we would be free to see him on Monday night.  Was so good to see him again and have a visit with him in our dorm room.

As time got closer, and Gary felt he wanted to try it, we decided that all of us would go.  I thought I had requested being on the first floor of the dorm, but, either I thought I had and actually didn't or something got messed up at Calvin, but we ended up on the 3rd floor at the top of the stairs.  Since there were no elevators, Gary and I did the stairs as little as possible and Peter did a lot of trips going up and down bringing all of our things as well as if Gary needed to go up and I was not going to stay up at that particular time, he would take Gary up and get him settled in and make sure he had everything he needed.  Have I mentioned it before in our blog?  I am so thankful for our children!!!

We left early Sunday afternoon so that we could be there when the dorms would open so that Andrew and Stephanie could participate in the activities that were planned for the students but also so we could hopefully get a restful night.  The twins had found out about a week or two ago who their roommates would be for the coming school year and each had made some contact with them.  We had found out that Stephanie's roommate would be at the same Passport but not Andrew's so at least one would more then likely meet their roommate.

Monday and Tuesday were full of activities for both students and parents -- some together, some separate, but lots to do.  Also, students had various appts such as placement tests and academic advising where they would be setting up their schedules, and some had several other appointments.  I had gone through all of our schedules on Sunday night so that I could at least have an idea of what were the things we each needed to be at knowing that I would try to make it to as much as possible but also wanting to see if there were any more important then others for Gary to try to go to.  He went to a couple of the main programs, but did spend a large part of the time in the room sleeping or just relaxing. I think it was nice for him to just have a new environment to be in.  We had taken along fans to help keep the rooms cool enough, and the weather cooperated -- not too hot and not too cold -- and with the help of the fans, we could keep the rooms at least somewhat comfortable.  The first day the sun was shining and a very beautiful day outside.  Tuesday we woke up to rain and it was a rainy dreary looking day.

There are a lot of trees on campus, especially between the dorms and the dining halls or on the way to the FAC (Fine Arts Center where the bigger group meetings were held), and for the most part they kept him shaded enough as we walked from building to building for meetings, meals, and sleeping, so we did not push the sunscreen too much although he did wear his hat and at times wore his face-mask.  He is supposed to wear sunscreen because one of his medications can cause sun burn when his skin is exposed to the sun, but he says that he gets irritated by the sunscreen.  We kept his pill schedule the same, but because we were in the EST instead of CST, we moved the times from 9am , 12 noon, 5 pm, and 9pm to 10am, 1pm, 6pm, and 10pm.  We figured that would be better for his body since it would only be for 2 days and that way his body would still fill like it was getting the pills at the same time.  I hadn't thought about it, Peter thought about it as we were driving to Michigan and I was glad he did.

Stephanie and Andrew both had several individual things they each had to go to as well as a lot of things that were just for the students themselves.  There was usually a parent meeting or activity during all of the student meetings and activities so always something going on.  I made it to most things but bowed out of a couple things myself to rest so I would be ready for other things.  I remember being busy and tired but still being able to do all the meetings and activities when I went to Passport with Peter and Bradley, but then, that was all before the accident in Nov 2007 that has really curtailed me. This time I was even more tired and by the time I would lay down at night, my body would let me know that I had overdone it, but, I'm so thankful that I could still come along.  I did tell Peter at one point that I was so thankful that he could take off from work to spend the time with us.  I would not have been able to be there by myself with Gary and the twins (they stayed in another part of the dorms with just students) and I'm not sure how I would have done on my own with the twins if I had left Gary and Peter at home -- we would have for sure had to spend Tuesday night in Michigan then too, since I was way, way too tired to drive home and I'm not sure how awake either Andrew or Stephanie would have been to drive home (maybe they would have been fine).  Also, we wouldn't have been able to leave Gary at home a lone for that long either.  I'm so thankful that Peter doesn't mind using vacation time to help out and do these things with us and for us. 

All in all, I'm glad it worked for the five of us to go, that the weather wasn't too hot as long as we had fans in our room, and although Gary couldn't participate in everything, he still got to be a part of it all, and by being in the dorms, he was able to be in our room resting between activities he went to when he was up to doing things. I was also happy we were able to keep him hydrated well enough.  We brought lots of individual crystal light packets for water bottles and the dining hall also served crystal light.  I know he was amazed at how tired he would get so quickly, but when you think of how little he has been able to do, these were "big steps" for him and even a change in environment can tire you out as well as the car ride.   I was also thankful that Stephanie (and the rest of us) got to meet her room mate for the school year and some of her family and even ate some or our meals together.  From what we can tell now, they appear to be a good match.

Yesterday I was very exhausted.  I had 2 doctor appointments for myself (I'm trying to catch up on my on doctoring issues right now) and was so tired from not having slept well mostly because of pain while we were at Calvin that I had a lot of trouble staying awake.  I decided it was time to go to bed early (for me) by 9PM but of course, once I laid down, I had trouble sleeping again but did eventually get to sleep.  I'm still tired today and have found myself dozing off, so haven't accomplished all I had hoped to today while the kids are gone.  They went to Great America for the afternoon and evening.  The Villa Park 4th of July parade was at noon today.  The parade route goes right by our house.  It's rather nice to be able to walk out our door and just sit by the street especially since we have a beautiful tree that gives wonderful shade in our parkway.  The thing is to remember to set out enough chairs before others start putting out their chairs and blankets to claim seats for the parade.  They changed the route I think in 2011.  I really like it that it goes by our house now, since I enjoy parades, and this way I don't have to walk far to watch and those that don't want to go can do what they want.  It was beautiful weather for the parade.  Gary wasn't up to sitting out front for it but he and the kids don't have as much interest in it as I do, so I went and watched it by myself.  When our kids were on the park district swim team, they would walk in the parade each year. 

I'm sorry if I've repeated myself at all through here.  I'm still very, very tired and keep dozing off -- might need to try to go to bed early again tonight.  This posting has gotten long enough again but then I guess I have a tendency towards that.  My 2nd oldest son reminded me of that Tuesday when he and his wife received the anniversary card I had mailed them for their 2nd Wedding Anniversary.   He told me that they had received a card that was said to be sent by me but was only one page long so it couldn't possibly be from me.  I told him, I had been trying to make sure it got to him on time for once, so, I had had to hurriedly write it so we could mail it on our way out of town to PASSPORT.

I Hope everyone had a wonderful 4th of July today.  I decided to add a couple of pictures I took today of Gary and I with our 4th of July shirts on.  Thank you, everyone, for continuing to walk with us on this journey.  We appreciate so much your thoughts and your prayers.

Love,
Nelly and family

Blessed is the nation whose God is the Lord, the people he chose for his inheritance.

~ ~ Psalm 33:12 NIV

 HAPPY 4th of JULY everyone!

Enjoy the Journey

4 helicopters - 3 dark and 1 white speck on this picture. We were @ Damen & Ogden

"Sea of Red" (it looked more red then shows here) and airplane with banner
 by Damen & Eisenhower (I-290) with United Center to right in the trees

 Here are a couple pictures of "Black Hawk Hoopla".  We were on the way from the hospital to home when it was around the time for the Black Hawks players to leave the United Center (which is also home to the Chicago Bulls) to head to the parade route.  I was actually surprised we didn't see more "red" although the pictures don't do justice to what we did see.  There were at least 4 helicopters and a plane with a banner in the area as we were driving through. Thankfully we didn't encounter the traffic we thought we would have.



Dear friends and family,

A few of you have asked how Gary is doing and I had been thinking I would write an update but hadn't yet, so decided to do so today. 

He has been having an "up and down" sort of couple weeks or maybe a "2 step forward, 1 step back" sort of couple weeks.  On our last clinic visit, they felt it was time to take him off of some of his medications that were helping his blood pressure come up since he had been having problems of lightheadedness from his blood pressure being too low especially when he would stand up as well as the dehydration he had been fighting causing the blood pressure to also be lower.  Since his hydration had improved considerably -- most days getting down his 3+ liters of water/crystal light type fluid, and his blood pressure seeming to improve between eating more salty food and the medication, it was time to start taking him off the extra medication and see if his body was ready to handle it without the added medication (one to raise his blood pressure, one to counter the side effects of this blood pressure raising medication).

As the days went by, his blood pressure started dropping and the dizziness and lightheadness started returning so by last Thursday, June 20, I called the transplant clinic nurse to see what we should be doing.  She asked about his fluid and salt intake and I told him what we had been doing.  She said to keep doing the fluids and try to up his salt intake and that and she would double check with the doctor although we probably wouldn't hear back that night.  On Friday I figured we'd hear something, but as the day went on, no phone call so, wouldn't you know it, around 9PM, I decided to head to the shower figuring we weren't going to hear anything.  Before I made it to the basement, the telephone rang.  The kids were all gone so I told Gary I would get it.  It was the transplant nurse basically reiterating what she had told me the evening before, and also said that if he didn't improve over the weekend, to call again. 

He wasn't up to going to church on Sunday because of lightheadedness and dizziness so we left him home to nap and strict instructions of not leaving the house or showering without us home.  He had started taking walks on his own as long as he had his cell phone along before the medication change, but as he became more lightheaded and dizzy, we told him that one of us needed to be with him again for his safety.  Thankfully as the week has gone on, he has slowly started feeling better and he now takes walks again at times with the kids or I and at times on his own with his cell phone, depending on how he is feeling.

Today (Friday, June 28) was not a clinic day for us, but it was time for scheduled blood work.  With the Chicago Black Hawks having won the Stanley Cup earlier this week, and hearing that a lot of the "hoopla" would be happening on Friday,  I started becoming rather nervous of what this would mean for us because the exit we would be taking to UIC was the same exit that goes to the United Center.  For those who know me well, I am not a "city" person although once in awhile I don't mind visiting the city, I am not a "big crowds" person, and "big city" driving is not my favorite thing although I've gotten much, much more comfortable with it over the years since both Gary and I have had or continue to have doctors in the city, so.....

I haven't been sleeping well this week again either -- too many things on my mind as well as being in pain myself, and then other times, not quite sure why I couldn't sleep.  Anyhow, I know I shouldn't worry, but, for me that is easier said then done.  I've mentioned my favorite devotional book before, "Starting Your Day Right" and "Ending Your Day Right" by Joyce Meyer, and how so often the devotions fit for me at that particular moment.  I know it may not be the "deepest" devotional, but right now, I can't always handle "deep" but I also feel the Lord understands my mind and all that is going on right now.  It happened again this week several times where the devotions were hitting me right where I was at, and one in particular was last night (therefore the title of this post). One of the things it said was  "So many Christians are headed somewhere, but not many of us are enjoying the trip.....Whatever your present station in life, whatever you are called to do, wherever you are called to go, enjoy the journey.  Don't waste one day of the precious life God has given you." 

Overall, I slept well last night, at least much better then I had all week.  I had our bag pretty well packed last night for our trip to UIC including Gary's medications (don't ever want to forget those again) and medication lists, as well as things to do while waiting.  I even woke up when my alarms went off and wasn't really nervous about the drive anymore figuring I'd just take the traffic and headaches that come with it as it came, and "enjoy the ride".

We made our usual stop to pick up breakfast for both of us and coffee (I have to have my coffee) for me from McDonalds and started on our way.  For those of you familiar with Chicago traffic and the area with the Hillside Strangler now moved to Westchester Strangler, we had decided that we should not get on the Eisenhower by Elmhurst, but instead take Roosevelt to Harlem and get on the Eisenhower there since we figured traffic might be heavier then usual. It appeared that there were others with the same idea, since Roosevelt was busier then usual.  When we got on the Eisenhower, surprisingly, traffic going towards the city was moving the same if not better then usual but the traffic going away from the city was completely stopped and we have no idea why.  I think most of the Black Hawk fans must have taken advantage of the $5 train special that we kept hearing about on the radio and traffic reports rather then drive to the city. We also kept hearing about all the people waiting to get into Grant Park where the rally was going to be later in the morning and that some people had been waiting already since last night with many more having arrived really early in the morning.  As we got closer towards our exit, it seemed at first as if there was going to be a line of traffic getting off, but instead, very few got off there which was nice for us, so our ride in wasn't nearly as bad as we thought it would be.

After doing what we needed to in getting the blood work done at UIC -- registration on the 2nd floor and blood work on the 4th floor and of course the various waiting that comes at each location, we headed back to our van to head home.  By then we had been there around 1 1/2 hours and it was close to the time that we had heard that the Black Hawk team would be leaving the United Center so I wondered if we would encounter much traffic, but again, it wasn't too bad although when we were crossing the Eisenhower, we could see there were a lot of people close to the United Center, but not nearly as much traffic as I thought there might be. (see pictures above)

Gary and I decided we like driving home on the Eisenhower at around 10:30am -- much less traffic then when we usually come home from our appointments when we usually hit the afternoon traffic.  I think the slowest I had to go the whole way home until we reached Rt. 83 was 62 MPH -- Amazing!

We received a call from the nurse at the transplant clinic this evening with results from his blood work as well as questions about Gary's vitals from this week.  I happened to be at the grocery store with Stephanie so Peter called me while Gary was talking to her.  In the end, they had her call me and Peter stayed on the other cell phone so that he could look at the vital sheet (I told him where it was) in case I needed some of that information.  I'm sure I looked rather comical with a cell phone against each ear, but it worked out well.  I could answer her questions from information Peter could give me and Peter could write down information and changes that needed to be made in his medication as well as when he needs to have an added blood work drawn because of the change in medication and waiting for the next appointment would be to long of a wait.

Next week we will be trying some "new" adventures with Gary, new, that is, since his transplant.  I'm a bit nervous, but I know like every time you try "firsts", apprehensions arise.  I know a lot involves  using common sense and mostly I need to keep praying for patience and peace of mind.

It's time to stop and get some sleep.  Thank you all for your continued thoughts and prayers.  We really appreciate them and thank you for "walking with us" on this journey.

Love,
Nelly

 

 Make a joyful shout to the Lord, all you lands!
Serve the Lord with gladness;
Come before His presence with singing.

  Psalm 100: 1&2 KJV

"When 4=5 and 1=2", "Protocol = Familiarity"

Dear Family and Friends,

Friday = Chicago Traffic, Blood-work, and Transplant Clinic day (after a two week break)

This was our 6th visit to the clinic even though it seems we've been going there for a longgggggggggggggg time. Overall, the visit went well, but there were also lots of "glitches" and "changes" that for me, who wants to make sure we are doing things correctly before we leave the clinic when we are still with the people we need to talk to rather then trying to make telephone contact, made the visit frustrating.  As usual, there was a lot of "hurry up and wait".  We're used to that and figure that comes "with the territory", you might say, so we come prepared to spend our day there, and also don't make plans for other things on clinic days.

As usual, we started our morning in the "Chicago Traffic" on the Eisenhower (or rather took the back roads and got on the Eisenhower at Harlem.  After parking, we registered at the registration office and then went up two floors to the lab for Gary's blood work.    As usual, we stopped at one of the benches before getting on the elevator to go to the clinic so that Gary could rest and take his pills and we could finish eating breakfast and also call home to make sure Andrew and Stephanie were up since it would be hard for them to reach us once  we are in clinic.

After continuing on to the Transplant clinic by going back down to the 2nd floor and then taking the enclosed bridge between buildings up to the 3rd floor of the Eye and Ear Building where the Transplant Clinic is (last week I mentioned people looking for lab for blood-work and sign saying Phlebotomy, I guess one could say somewhat the same thing with the Transplant Clinic being in the eye clinic and no signs that say Transplant Clinic).  You go through a maze of hallways of the Eye Clinic to the elevator and then down to the 1st floor and then through a few more hallways to the Transplant Clinic. As I walk by the desks of the Eye Clinic, I often wonder what they think of everyone walking through their offices, but then, I'm sure they are so used to it that it doesn't even phase them.

After checking in (and making sure I got our parking pass stamped and initialed so I could get the patient rate), we found seats and started our wait.  I thought to myself, it sure seems empty today -- maybe it will be a quick in and out.  Eventually we were called in for vitals but then sent back out to wait.  Eventually we were called in again and seen by the Nurse Practitioner in training and after her examination and going over meds and questions, we finally saw the Doctor (there was a lot of waiting in there too -- something to do with the new computer system and our name not being in there for our appointment, and I had been hearing "rumblings" about a lot of walk-ins, so, I'm guessing that there were others whose names weren't on the list either).  Gary's end result of his checkup is that he is doing well.  The doctor is happy with his walking (approx 1.1 miles) and fluid intake (approx 3.5 liters) and lack of dizziness.  His Blood Pressure is also starting to go back up, so he was taken off of 2 medications that were helping to bring it up.  If his blood pressure continues to do well, they will probably take him off of the other medication that is helping it.  She did say that eventually he may have to go back on his blood pressure medication he was on before transplant surgery or a different kind of medication to keep it at the correct levels and from going too high.  They had also done blood tests on his cholesterol that no on had told us should be fasting blood-work (they've always said he could eat breakfast but not take his pills before the blood work) so, once the Nurse Practitioner realized that the results were from non-fasting blood-work, she was quite happy with the results, in fact, very impressed.

"When 4=5 and 1=2"

Since they have started a new computer system, check out was different then usual, but still confusing at least to me -- just when you start getting used to one system, things change, but then, by now, we should be used to change.  Anyhow, when I was brought Gary's checkout papers with his next appointment and waiting for the new, updated medicine list, I looked over the packet of papers that they had given me -- (something new), and noticed that the doctor appointment that they gave Gary was in 5 weeks, not 4 weeks as we had understood from the Doctor, then I noticed that he was supposed to have blood-work on a different day then the appointment day.  I talked to the person making the appointment and she said that they were overbooked in 4 weeks so that was why 5.   Then I asked about the blood-work and she said that was what the Doctor had requested.  I asked if she could please double check with the doctor on both the appointment and the blood-work because we had understood from her that it needed to be 4 weeks and that blood-work only at the appointment time.  She came back and told me that the doctor was fine with the 5 weeks and that she said that Gary should have blood-work at 2 weeks and then again the day of the appointment, therefore the parts of the title "When 4=5, 1=2". 

 "Protocol = Familiarity"

While waiting for the questions to be answered, I was looking at the new medicine update sheet I was given.  I noticed that the milligram dosage for one of his medicines, an over the counter one, was different then he had been on before the transplant, and different then what had been placed originally on his sheet as to what he would change to at some point, so, when I questioned the clinic pharmacist about that since none of the doctors had ever told me any different, she said that she had changed it since that was protocol.  They would give the dosage he had always been given only if he had a heart attack, but even with his family's history, that was not a reason to give the higher dosage and protocol dictated the smaller dose.  I have left a call with the nurse and she was going to e-mail the doctor about it but said my question was a valid question, but she didn't want to call the doctor since she was hopefully sleeping and had been up all night because of transplant surgery.  I agreed that it could wait but that meanwhile we agreed that I would give the higher dosage as he had been on before and had been set to go on originally after the other medication after his transplant surgery, therefore the part of the title "Protocol = Familiarity".

Lest one thinks questioning is something I enjoy doing, you don't know me well.  I would much rather not question at all, but I've learned that I need to.  I tend to feel very intimidated by a lot of these people, and questioning even those whom I am comfortable around is hard for me for fear that they think I know more then they do.  Far from it!  My questioning comes from wanting to make sure we are following the directions correctly, and making sure things are safe and that we are doing the right thing for, in this case, my husband, so that we are doing everything we can to keep these gifts that he received of a new Pancreas and Kidney.  Also, I find it much easier to question while we are still at UIC rather then when we're home and then have to call and try to get answers. 

"You lost a lot of weight!"

Today, Monday, June 17, we had our first visit with one of Gary's pre-transplant doctors.  We were actually supposed to have gone to see his Heart Doctor last week, but somehow,  I (or should I say we) forgot the appointment even with having gotten a reminder call 2 days before and having it on our calendar -- I blame that to brain overload. 

Our appointment for Gary today was with his Nephrologist (Kidney Doctor).  It was the best appointment that we've ever had there, but then, how many people can go back to their doctor and in 2 months, have their weight drop almost 30 lbs and have the doctor not be concerned about such a quick weight loss without fear of there being another problem?  The doctor was very happy with how Gary is doing and especially happy with all of his Kidney Function numbers as well as his blood glucose numbers that just 2 months ago had not been very good.  I did have to chuckle when the student doctor we first saw commented that his A1C number was good, but really could be better.  It was 6.2 the last time it was checked at the transplant clinic.  I did remind him that the A1C number is an average of the last 3 months of blood sugars and that since the transplant was only 2 months ago, one of the 3 months was still when his pancreas wasn't working and the blood glucose numbers were still all over -- he realized he'd forgotten about that.  It will be interesting to see what it comes down to after 3 months post transplant, but for now, we are quite pleased with the 6.2 and how steady his blood glucose numbers have been.  The other great news is he doesn't need to go back to the Nephrologist (Kidney Doctor) for 6 to 8 months (before transplant it was anywhere from 2 to 4 months depending how his kidney numbers were.

Prayers of Thanks and Prayer Requests

1.  Thankful that Gary was able to go to Andrew and Stephanie's Graduation.  Peter brought Gary just before graduation just before the kids marched in and left right after they marched out.  Gary wore a mask per the doctor's orders, and they were able to sit in 2 chairs that those in charge of graduation from school had nicely set up for them against the back wall behind the pews.  It was so nice for him to be able to be part of their graduation and to see Andrew give his Salutatorian Speech as well as see both of them graduate with high honors.  He had been too sick yet to be at church on Mother's Day when Andrew and Stephanie made Public Profession of Faith, so we were so glad he was well enough to go to this.  He was also able to come to the small graduation party we had afterwards by our sister-in-law, niece, and great-nephew's home.

2.  Thankful that Gary has also been able to join us at church a couple of times -- there again he wears his mask, comes around the time church starts and has left right a way.  The biggest thing is that for now, the doctors want him to stay out of big groups and crowds, but a lot has to do with common sense and especially staying away from people who are sick since his immune system is compromised.

3.  Thankful that Gary is doing so well, and we've been able to keep him out of the hospital now for just over 5 weeks.  He also hasn't had to be hydrated at the doctor's office for the past two visits, and it looks like, for the most part, we are able to keep him hydrated here at home.  His appetite even seems to have come back.

4. Please continue to pray for continued healing for Gary and that he keeps progressing.

5.  Please continue to pray for strength and energy for Nelly.  I continue to struggle with pain, lack of energy and lack of restful sleep.

6.  Continued patience with doctors, nurses, insurance, pharmacists, and any others from the medical field that we need to deal with.  Prayers that I won't feel so intimidated, inferior, and frustrated when we have questions.  I want to make sure that we are doing the best we can for Gary.

7.  I still pray for the family who lost someone precious and gave us the wonderful gift of that person's Kidney and Pancreas so Gary could have a better life.  I am so thankful they chose to do that in their time of grief.

We are so thankful for the continued prayers of all of you, our friends, family, and our church family.  We feel so blessed by the Lord for each of you that has and continues to walk with us on "this journey".  I know this post was long, and my kids "gently" remind me that I write way too much, and I "gently" remind them that they can write the blog, but, none of them have taken me up on doing that for quite some time.  Oh well, I am who I am, so extra long posts it is, and sometimes it takes me a bit to process all the information after a doctors appointment or other things come in between, so therefore a few days to write my blog.  I chuckled a few weeks ago as I was going through a box of "memories" that had been flooded so needed to be gone through and pitched, I realized that my children really have no knowledge of letter writing, or "snail's mail" like I and a lot of you do, but there were a lot of letters in that box of "memories" and as I was showing my children one of the letters from my Mom, I told them that I come by writing a lot naturally since my Mom was also good at filling the whole page as well as any margins that were on the paper.  Before I threw these letters out, I took pictures of them so that I can go back and read through them again sometime.

Thank you once again for your continued thoughts, prayers, and other shows of kindness to us as we "walk the journey".

Love,
Nelly and family

Thanks be to God for his indescribable gift! 

 ~ ~2 Corinthians 9:15 NIV