Thursday, August 28, 2008

Day 38

After discussing my injection  problem with the Dr., it was decided that I  should inject more so that I remain at the desired level of medication.  I feel better about it.  I would hate for any islets to be jeopardized.

I showed my ringworm to a friend who had seen it before, and she thought that it is indeed ringworm.  I picked up some lotion  at the pharmacy that will hopefully take care of it quickly.  Its not too  uncomfortable, just kind of gross to think about.

I have been feeling good.  I still get a little more tired than I feel I should.  I am hoping that gaining weight will help with this.  Also, the islets seem to be working harder every day.  So I am still fighting with low blood sugars.  I am finding that any exercise at all really lowers my blood sugar.  I have been turning off my pump whenever I go for a walk, but I still usually end up low.  I am going to have to try turning it off for awhile even before I start my walk. I  don't think the islets should take me low, so it is probably due to  the insulin in my pump.  This is what I would call a good problem.

I used 8 units of insulin yesterday.

Monday, August 25, 2008

Day 33

Today when I was injecting my Raptiva, one of the  immunosuppressants, some came back out after the injection. I was concerned, because I was afraid if I did not get an adequate amount, I might be able to reject the islet cells.  I called my coordinator, and we decided that I probably got  more than I thought, but she would discuss it with the Dr on monday.  Later, I thought to take the syringe and expel some and see how much I thought came out.  I decided that it was probably only about one or two tenths of a cc.  I was supposed to inject 5 total.

Later in the evening, I noticed a strange red mark on my shoulder.  Upon closer inspection, I thought it looked like ringworm.  I googled ringworm pictures, and sure enough, that is what it looks like.

I am now at 10 units of insulin/day.  I am still wearing my pump, and seem to  constantly be turning it down or off.

Thursday, August 21, 2008

Day 30

Yesterday, we drove the rest of the way back home.

Today, I am busy getting my youngest ready to leave for college.  I  had a walk in the  morning and shopping in the afternoon.  I  was tired by the end of the day.  

I am still at 11 units of insulin/day.

Day 28

Today was my 28 day checkup at the clinic.  Each week I have blood drawn and one of the things being tested is the C-peptide, which measures islet cell activity.  Before the transplant, mine was zero, meaning that I had essentially no functional islets.  

Last week, my fasting C-peptide was 0.51 and my stimulated (after eating) C-peptide was 4.32.

Today, my fasting C-peptide was 1.11 and my stimulate C-peptide was 2.14.  

I am not sure why the stimulated one went downward,  I need to  learn more about this.  But, the increase in the fasting is good.

My cholesterol is higher than before the transplant which is due to  the drugs.  I will have to watch my fat intake a bit closer than before.  I did not really worry about it before.  I thought watching carbs and total calories created enough limitations.  So, I do have some room to  cut back with cholesterol.  

I  haven't seen my other lab results from this visit.  So  I assume that  my wbc count and immunosuppressant levels are within range.  

I am developing two  mouth lesions on the inside of my cheeks, but so far they are not too bad.

After the visit, we drove back to Madison where  we spent the night with my dad  and his wife.

Tuesday, August 19, 2008

Day 27 back to Minneapolis

Yesterday, we had a nice day again doing fair-related activities.  We usually stay most of the day at some friends house that is right on the parade route.  We watch the parade, eat well, play games, and visit.  It is  always one of my favorite days of the year.  I saw several people that I  haven't seen all summer and enjoyed sharing my experience with them.  Most were incredulous and very excited and happy for me.  We have a few friends who have a   diabetic child, who  are watching me with keen interest.  It  was a fun day, but I did get quite tired by the end.

Today we drove back to Minneapolis.  I was again a nice sunny day and we stopped a few times to walk and sightsee, which helped to break up the trip.  We stayed with our friends again.  I am still at 11 units of insulin/day.  I had a few blood sugars above 120 today.  I can tell that I spent most of the day in the car with not enough exercise.

I think I might be getting some mouth lesions, which are side effects of the immunosuppressants.

Day 25 back to work

I went back to work yesterday.  It was nice to  get back to that part of my life.  Luckily summer is a slower time in a clinical lab, so I didn't fee too pushed.  My coworkers were very supportive and I had several offers for help if I needed, but fortunately, I  was able to keep up.  After work, I came home and just rested, and then Gary and I went down to our the fair that was being put on by our town.  I always enjoy seeing the floral displays.  

Today I did  get a little tired at work, but not horrible. It just shows me that I am not all the way recovered yet.  After work, we went back to the fair, Gary to run in the 5-mile race, and me to cheer him on and to visit with some friends.  Gary was third in his age group.

I am at 11 units of insulin/day now.  My blood sugars are almost  all perfectly normal even though I  am making a conscious effort to  eat more.

Thursday, August 14, 2008

Day 23

Yesterday, we drove from Madison back home.  It still seemed like a long trip.  It  was good to be home again.  

I was a little tired today.  It is hard to decide how much to push to try to gain strength, and how much to rest and recover.  I am trying to eat as much as I  did before the transplant, and am about there.  I haven't had the stomach pain for almost a week now, and am gaining some confidence.  I am at 14 units of  insulin/day. Up a little since I am eating more, but still seems to be on the downswing.  My blood sugar readings continue to be mostly normal.  I am beginning to go on short  walks.

Day 21

Yesterday, we drove from home to Minneapolis.  It was a pleasant trip, sunny, and we stopped and had a nice walk along a river.  We stayed with our friends for the night.

Today is my day 21 check up.  It was simple, consisting only of the basic vital signs and blood work.  Everything seemed fine, except that I had lost more weight from my stomach problems.  I  have to resolve to  try to eat more. 

We stopped in Madison,WI  for the night.  My Dad and his wife  are staying there  for the month.  We had  a nice dinner and evening with them, and it was a nice break in the drive.

Saturday, August 9, 2008

Day 19

I have finally caught up to present day and will  begin to  share  the site with a few people.  It still needs some tweaking, like a new picture, but that can wait.  I would appreciate any input.

Today was good.  No pain at all.  I  am trying to eat more because I felt so weak yesterday and I think that this is the best  way to get my energy level back.  It backfired a little  bit.  I tried some Mac and cheese and it sent my blood sugar up to 206.  This was very disappointing.  I  just underestimated the carbs in the macaroni.  So I  gave myself some insulin and went for a bike ride.  This brought me down to 47.  Its been a long time since I have ridden this roller coaster, and I don't miss it.  

We are busy getting ready for our drive back to Minneapolis in the morning.

Day 18

It is nice to be back home.  I am eating easily digestible  foods, like soup broth and fluids.  I attempt to water my flowers, and find that I am still pretty weak.  I spend most of the  day resting and get some work  done on this project.  Cassie is  in Florida with some friends, and Becky is busy with work.  It is a quiet day.  I make a few phone calls and some friends stop by.  Gary and I run some errands in the late afternoon.  My blood sugars are still fantastic.  I am down to 12 units  of insulin/day.  This may be a bit lower  due to not eating much.

Still no pain.

Day 17 back home

I wake up with still no pain, but no resolution.  Without going into details, suffice it to say that I had a royal flushing out and hopefully that will do the trick.  In the mean time we learn that the original  X-ray had a report of no blockage found on it, so we are very confused.   I did have enjoyable hospital visits from both daughters and got some flowers from work.

After a long wait, I am released from the hospital. I am feeling better, but weak from not having much to eat.  We go back home, and I just hope that the  pain does not come back.

Day 16

This was not a good day.  I am sleepy and nauseated from the pain medication, but I can't bear the pain without it. I am on a glucose IV, so I have to stay on top of my blood sugars so  they don't go too  high.  In the afternoon, I run a fever and am put on an antibiotic.  I am put on a clear liquid diet about suppertime, but it is mostly extremely high sugar content, so  I  don't eat most of it.  

Finally, in the late afternoon, I feel that the pain might be gone, so  I  say no to my next dose.  Sure  enough it  is gone.  Now I can at least stay awake and have a more active roll in my recovery.  I  went to bed feeling  better, but still no answers as to what  had  caused the pain.

My blood  sugars are still holding steady.

Day 15 to the ER

I finally left Chicago on the 8:30am flight to Cleveland.  I do manage to sleep for a  few minutes on the plane.  I get through the airport, find my car and drive back home.  I am still in alot of pain.  I take a shower and Gary and I go back the the ER.  This time we go in.  

Of course, no one in the ER has ever heard of an islet cell transplant, but they all  find it fascinating.  The Dr orders an X-ray and some lab tests and we wait for the results.  The ER Dr. says that  there  is some blockage of my intestine and that she is going to admit me.  This is when I realize  my mistake.  I came to  the ER of the closest hospital, and the one that  I actually worked at for many years, but not the one that my own doctor goes to.  It is too late to go somewhere else, so I am admitted and pain medication  is administered.  It takes 2 medications, but finally my pain is better.  

The strategy to heal  me is to have me not eat anything and hope that  the blockage breaks up and passes through. So I go to my room to get settled in just wait.  Gary makes some more phone calls.  I continue  to check my blood sugars.  They are still  doing well.

The night is uneventful.  I am just happy to be finally out of  pain. 

Day 14 Airports

I get to the clinic at 7am fasting and have my blood drawn.  I eat cereal and all of my eggs.  I am feeling fine, and excited to see the transplant team.  I have a 2 hour wait after I eat before my blood will be drawn again.

Dr. Harmon comes in and we discuss my stomach pain and I assure him that it is over and I feel fine.  We have a pleasant conversation and then he examines me and has to leave for  a surgery.  We are both really pleased with my progress so far.

Val comes in  to see me and we discuss my pain and decide that it was probably just gas, possibly from some brussel sprouts that I had the night before my pain began.  Everything seems fine, so I leave the clinic and take a shuttle back to the airport.

Due to bad weather in Chicago, my flight was delayed, but I managed to leave Minneapolis in time to be able to catch my next flight to Cleveland.

The Chicago airport was a mess.  There were many, many cancelled flights and people all over trying to get on other  flights.  My flight still seemed ok.  I got a slice of pizza to eat and waited for my flight.  I  got  on the plane and noticed that the rain had started.  Then the pilot announced that we were under a tornado  watch and would have to wait.  Then the crews shifts expired and my flight was cancelled.  The short story is that I  ended up spending the entire night in  the Chicago  airport.  The worst part was that my stomach pain came back about the time I got off  of the cancelled flight.  It was the same pain, and I could find no way to relieve it.  I tried the gas-X pills, I tried drinking water, and I tried to walk it off.  But nothing helped.  Like the other night, I  found it slightly more comfortable if I was sitting straight up, but in an airport there  is  no couch to position myself to try to sleep.  It was awful.  I  got no sleep at all.  I think I will have bad feelings about Chicago forever.

Day 13 fly to MN

I wake up feeling much better and assume that it is over.  I have breakfast and drive to the Cleveland airport.  I am flying to Minneapolis for  my Day 14 visit the next morning.  The flight went well and I was feeling fine.  When I got to my hotel, I dropped off my suitcase and took an enjoyable walk along the Mississippi River.  I ate supper at a restaurant that specializes in noodles, and went back to the hotel.  

I made a few phone calls and settled in for the evening.  I was still feeling fine.

My glucose levels are still very stable.  I had  one low (50) in the airport, probably because I  had a long walk between gates right before lunchtime.  I was a little surprised that I couldn't feel it more than I  did.  I guess it takes awhile before the low blood sugar sensations return.  I turn down my basal rate again.  I am now at 17 units of insulin/day.

Day 12 stomach pain

Today starts out well.  Gary and I sit on the porch and lament that we should be leaving on yet another vacation to florida with some friends.  Last week, we decided it would probably be too much for me and cancelled our trip.  We had bought flight insurance when we purchased the tickets in case I got "the call" before we left.  So canceling the flights was easy,just disappointing.  We were really looking forward to it, and it was our 2nd vacation to miss.

Gary headed out to do some work, and I stayed home to rest.  At about 10:00, I decided to water my flowers.  I got about halfway done and suddenly my stomach started to really hurt.  I put down the hose and went inside and put my knees to my chest.  It  didn't get any better and after a few hours, I was getting worried.  I called Val and left a message with her.  After a few more minutes, I was getting really worried that something might be really wrong.  It felt like gas, but it just wouldn't go away, and the pain was really intense.  I was worried that something might be wrong with my liver or some kind of  complication of the surgery.  So, I called Dr Harmon, the surgeon.  He was  extremely nice about me calling, and was also concerned.  He suggested that I go get an x-ray done of my abdomen.  Val called back then and suggests trying a gas-X pill to see if that would help.  So I called poor Gary and had  him come home to be with me and to bring me the pills.

I tried the pills, but they did not help at all.  I tried drinking water, and walking around and anything I could think of.  I was still in alot of  pain.  So at about 4:00pm, we left for the emergency room.  On the way, probably because I am so  exhausted from the pain, I fell asleep.  When Gary woke me up to  say we  were there, I realized that the pain was almost  gone.  We walked around the parking lot for about 1/2 hour and decided to go  back home.  I just couldn't walk into an emergency room and say that I  was there because I had gas earlier that day.

We went back home and had a nice evening.  I took Lucky, our dog, for  a short walk.  She is my walking partner and I know she has been missing our walks as much as I  have.  We had a little bonfire in the back yard with some of Becky's friends.

As soon as I went to  bed, the pain returned.  Just like before.  I  found that I was most comfortable if I  was sitting straight up, so I spent the night on the couch sitting and trying to sleep.  I actually did sleep some and woke up at 5am feeling better.  So I went back to bed.

Day 11

Today I  am feeling good.  I just  continue to eat more and exercise more.  I  go for a  short bike ride.  I still spend a good part of my day on the porch.

Day 10

I feel much better today.  The tiredness is gone.  

I ate breakfast and drove to the lab where I work.  I needed to have blood drawn to check my wbc count and my rapamune level.  After the blood draw, I got to  visit with my work friends.  It was great to see all of  them and we again determined that  I  would come back to work on the following friday.

I dropped my blood sample box off at  fedex and went back home.  I had another nice day on the porch and tried to do a little bit more around the yard.  I am starting to eat things like salads and peanut butter sandwiches.  

My glucose levels are still very good.  The target is between 80 and 100, and I have very few outside this range.  I decrease my basal insulin levels on my pump.  I am at 19 units of insulin/day.

Day 9 tired

Today I  feel OK, but I can tell that I am more tired today.  It could be because of the additional Rapamune.  I took one last night when Val called, and then 5 this morning.  Or it could be that I just pushed myself too much on my first day home.

Either way, I know that I  should take it easier today, and I  do.  I did more paperwork and finished the book that I  was reading.  I continued to eat more to get my strength back.  We have a nice screened in back porch, so I  spent most of the day on it.  Our birds aren't quite as exciting.  I missed the turkeys.  Gary is busy trying to get the rest of our day to day life back on track.

Day 8 at home

I wake up feeling good.  I eat some cereal for breakfast and try to get caught up on some paperwork and phone calls.  The girls did a good job with the housework, but I have a few things I  have to do to feel comfortable.  I probably tried to do too much, but I just couldn't help it. 

I e-mailed the community college where I  teach a microbiology lab and said that I needed to take a semester off to get back on my feet.  They were also  very understanding and interested in my experience.  As focussed as I am on my immediate health, it  is still amazing that I have accomplished my goal of the transplant.  And it seems to be going so well.  Even the number of pills that I am taking are not as overwhelming.  And some have been discontinued.  I am at 21 units of insulin/day.

I get caught up with some neighbors and friends who knew what we had been doing and were very excited to hear of my progress.  It was a very nice day.

Val calls later that  evening and says that my rapamune level is a little too low as of yesterday's blood work, and that I should increase back to 5 pills/day.

Day 7 heading for home

I wake up feeling good.  We pack up the car, and say thank you and goodbye to our friends and go to the clinic for  my Day 7 visit.  Again, I am fasting.  I  have my blood drawn and then have an ultrasound of my liver.  Everything looks good, so I get to eat and then have one more blood draw.

Dr. Hering comes in to say goodbye and we have a long discussion on some different approaches to diet that was very interesting.  We also learn that he runs in marathons, and Gary, who also has  done a few marathons, share some of their experiences.

Dr. Harmon comes in to check  my incision, which is  fine.  Dr. Bellin and I go over my insulin needs, which are already decreasing despite the fact that I am eating more.  I  get my final instructions from Val, the coordinator, and we are ready to head back to Ohio.

It is a beautiful and warm day, and the drive is  pleasant.  We make a few stops for  food and gas, and are excited to finally get home.  We arrive at about 2:45am with Gary doing all of the driving.  We wake up and hug both of the girls.  It has been a long time since we left them.  They survived well without us and I  know learned alot about running the house.  If they had too much fun while we were away, at least they covered their tracks well.  They both had the same question upon being awakened.  "Let me see your scar?!"

Day 6

Today is  Sunday and Gary's birthday.  We decided that we had enjoyed the lake so much that we would go back there again.  We borrowed some chairs and spent a few hours again just people watching.  It was another beautiful day.  It was nice to see so many people take advantage of such a nice park.

I had my first injection (or maybe I had one before the transplant) of Raptiva, the main immunosuppressant that I will be on.  It seemed easy to do.  

I am continuing to feel better and am trying to eat a bit  more every day and get a little bit more exercise.  

We grilled steaks for Gary's birthday and had a nice celebration on the deck.  I am not quite ready for steak, but I am expanding my diet.  It was a nice day, and I  think I stayed up till about 11.

Day 5 trip to the lake

I wake up feeling even better today.  I eat some cereal for  breakfast.  It  is the first day since I have been here that I  don't require any fasting blood work.  We don't even have to go to the clinic today at all.  

We spend most of the morning visiting with our friends.  I have half a peanut butter sandwich for lunch and we decide  to explore the area a little.  We decide to look  for a park with a lake.  

We  found a beautiful park with a big lake.  It is Saturday and there are many people out enjoying the sunny July day.  We found a bench  in the shade and just watched all of the action.  It was pleasant, but not natural for either one of us to be an observer instead of a participant.  We should have been in the water and throwing our frisbee.  It also made us long for our lost vacation at the beach.

We stopped for some more groceries, and headed back home.  We had a nice dinner and spent the evening just relaxing.  I finally feel like reading.

Day 4

I  feel a little bit better today, not quite as tired.  We again drive in through the traffic and I  have my blood drawn again.  It is determined from the previous blood testing that my immunosuppressive drug level is too high.  So I take one less pill of that kind (down to 4).

Today I am able to  eat all my cereal and about 3/4 of my eggs.  

We go back to our friend's house and again, I  rest most of the  day.  It is another beautiful day, and I do try to get out in it a bit.  I eat some yogurt and some more soup.  I turn in at about 9 again.

Here is what is becoming my window to the world.

Day 3 tired

It felt good  to spend the night in a regular bed with no one poking me or taking vital signs.  I  did test my glucose levels a few times that night, just to be sure.

I wake up feeling already very tired.  Gary manipulates our way thru traffic to the clinic and drops me off at the front door.  I go inside and have my blood drawn.  I try to eat  something, but can only manage a small bowl of cereal and about half of my eggs.

I find out that one reason that I  am so tired is that my white blood cell count is very low, even lower than is needed for immunosuppression.  A shot is prescribed that  should raise my wbc count quickly.  We get that at the pharmacy and I inject it in the car before we head back to our friends house.

In a few hours, I do feel better, but I still rest most of this day.  I am learning alot about birds and their habits.  There are even some turkeys who frequent the feeder.

I call the lab where I work and give an update on my health.  It is mostly good, it is  apparent that  the islet cells are beginning to do their  job, but I  am not sure when I will get my strength back.  I am lucky to work with a wonderful group of women who have been supportive  through this entire process.  I know that  my timing is not good for them, but I know they are still very happy and excited for me.  When I say that I would like to be back by the following friday, I am told that they already had me covered until then.  Again,great camaraderie, and great leadership.

I make a few calls to family and friends.  My family is  having a great time in South Carolina, and I know they are all anxious  for news of my progress.  

I  eat some soup and turn in at about 9.

Friday, August 8, 2008

Day 2 Discharged from hospital

I am more awake today and not as nauseated.  I still can't eat much.  I am to be discharged from the hospital today and spend most of the day making sure I have all of the information and supplies that I  will need to take care of myself.

I get a lesson in pill  sorting.  I now have one of those 2-dimensional pill boxes that have several pills in each compartment.  I am still not quite myself, but fortunately, Gary is paying close attention, and he helps me with my pills for the next few days.  He learns which ones I absolutely must take, and which  ones can be postponed if my stomach says no way. 

I have a visit from Dr. Hering who seems pleased with my progress.  Dr Harmon comes in to check my incision and see how I am doing.  My incision seem a bit red at the top, so he recommends putting some moist heat on it.  Dr. Bellin, who helps me manage my glucose levels helps to create a regime to balance my insulin, glucose levels and carbs. 

I am taken off all of the ivs which is wonderful, and I reattach my insulin pump.  The amount of insulin that I am taking is already much lower than what I required before the transplant.  I will no longer be taking Symlin, which is a drug like  insulin that lowers blood glucose levels.  

The theory is to rest the islet cells as much as possible at first so that the cells can become acclimated inside my liver.  Then, hopefully, they will begin to produce insulin, and my pump will need to provide less and less.  I can monitor my pump to see how many units I am using per day to assess how well the new islet cells are performing.

We leave the hospital, stop at a drugstore for a few supplies, and I  look for some food that I might be able to eat.  We then go to our friends, who happen to live near Minneapolis and have invited us to stay at their home while I am here for the transplant.  They have a beautiful home set off by itself in a quiet natural setting.  I find a comfy couch by the window where I spend many hours over the next few days watching the birds and dozing.  It is actually very satisfying and relaxing.  Gary is able to help with a household project and has a good time reconnecting with his best boyhood friend.

Day 1 post surgery

I am still very sleepy from the pain medication.  I can't imagine why anyone would take oxycontin as a recreational drug.  I am not enjoying it at all.  I am nauseous and fortunately sleepy.  My poor husband spends most of this day watching me sleep.  I can only stay awake for a few minutes or sometimes only seconds at a time.  I  go straight to dreaming.  It  is really strange.

I have an ultrasound of my liver scheduled, which I get through, but the nausea makes it difficult.  I won't go into details.  

Finally, by the end of the day, the medication starts to wear off and I sit in my chair for awhile and start to feel a little more like myself.  I am still not eating much.  I am trying to get used to  all the pills.  I  can tolerate all but the green tea supplement.  It is a long time before I will be able to  face that one down again.  I took it right before the severe nausea hit, so it is my scapegoat pill.

Day 0 the surgery

Finally time for the big day.  My blood sugars are stable.  I have to be fasting for the surgery which is scheduled for noon.  I am still pretty groggy from the medication and am sleeping alot.  The time comes for them to take me to surgery, so I kiss my wonderful husband, and am wheeled away.  I vaguely remember that there was a delay in starting.  The islet cells were actually processed in St. Paul, and there was some glitch in getting them  released, so the surgery wasn't done until 1:00pm.  Even though I asked for the lowest dose  of  medication possible, because I wanted to remember it, I still slept through most of  the procedure.  I only remember being told that it was over and went very well.  At this point, of course, I was very exhilarated and began to thank everyone in the room and say how happy I was to have this procedure done.  I remember that moment very well, and probably always will.  I believe it to be a life changing day.  For whatever reason, all of my discomfort was gone and I  was just very happy.  
When I got back to my room, I enjoyed the moment with my husband, and he made several  phone calls to family who were waiting for news.  I was put on some more pain medication and began a long sleepy period.

This seems like a good time to mention that my islet cells came from a donor in South Dakota.  All I know is that he was a 19 year old young man.  I feel very sorry for the loss that his family must have suffered.  And of course, I am very grateful that he was an organ donor.  I do feel a responsibility to him to take the best care that I can so that the cells have the best chance  not only to help me, but to  provide data that will lead to the cure  of  Type 1 diabetes.  I honestly believe that this is the path to that end.

Day -1

This day is and was mostly a blur.  I was beginning to feel the effects of  the thymoglobulin and some of the other meds that I was beginning to take.  Blood sugars were still being monitored closely, trying to keep me as stable as possible.  Since I wasn't eating much, this became easier.  By evening, I began to get a fever and chills, which was uncomfortable for me, but indicated that the thyroglobulin was doing its job.  I also began to take my allotment of pills for the transplant procedure.  I still haven't had the nerve to count how many there actually are, but they are numerous.  I have never been much of a pill taker, except for vitamins and calcium, so it seems overwhelming.

The surgeon who was going to insert the islet cells came in to meet me.  Dr. Harmon, like all of the  others on the transplant team was very excited for  me and for the prospect  of another islet cell transplant.  Everything was going well.  

Saturday, August 2, 2008

Day -2

Now things get very exciting.  I get to meet most  of  the transplant team who are again almost as excited as I am.  I meet with Dr. Hering again, who goes over all of my lab results and records and makes sure that everything looks ok.  He again is very concerned that I am aware of what to  expect.  I believe that I do, and again sign the consent form so that  things can really start to happen.

I had been fasting since midnight, so I had my blood drawn and then finally got something to eat.  I started a 24 hr urine.   I had an EKG, and later an ultrasound of my liver.  The islet cells go into the portal  vein of the liver,  so it has to be verified that the vein  is healthy. 

I had a PICC line put in, which is a bit daunting because it goes  from a vein in the upper arm all the way to the heart.  But that went well.  The PICC line is necessary for some of the drugs, and mostly for  the immunosuppressant drug, thymoglobulin.  I  also had an IV in so that I could be on continuous insulin and continuous glucose.  My insulin pump was removed.

So, now I am all  hooked up and ready to begin.  The thymoglobulin is started, and my glucose levels are trying to be directed towards normal.  I was  having finger sticks at least every hour.  This actually continued the whole time I was in the hospital. It is important to stay near normal for both my health and the health of the new islet cells once they are transplanted.

Gary helps me get all settled in and we return alot of phone calls to family and friends.  We are very fortunate to have some friends that live in the Minneapolis  area and Gary is able to stay with them while I am in the hospital.

The first night is  uneventful.  I am just starting to get some chills from the thymoglobulin, but, except for all of the finger sticks, I sleep pretty well.

The call

It was a friday afternoon, I am on my way home from work, thinking about the last minute packing and details that need to be done before we leave for vacation early the next morning.  My cell phone rings.  I think "No way".  Way.  Its the transplant coordinator, and they have a pancreas for me.  If you knew my luck with vacations, you might not be surprised, but is still  its a shock.  But, it is  still a good shock, and we basically repeated the procedure from 3 weeks ago.  My packing was mostly done this time.  I  just took out my bathing suit!

This time we are a bit more  skittish about getting the rejection call, so we made plans to get about 3 hrs from  Minneapolis and stop, thus creating less distance between us and the South Carolina vacation destination.  We stopped and slept for awhile and waited for the phone to ring.  It was a very long wait, with a  few updates.  We kept creeping closer and closer  to Minneapolis, and eventually waited there for about the last hour.  I am not sure exactly what took so long.  I guess the islet processor is quite a perfectionist, and at that time, it made for  a long wait, but I am now grateful that he did such  a great job.

Finally, at about 3:00pm, the call came that  the processing of the islets was complete,  and that their were enough cells harvested for a transplant.  By this time, we were right outside the door, so  I went in and my husband, Gary, parked the car.

The false alarm

After signing the consent form, I was sent home to wait for the phone to ring.  I provided the coordinator with 5 numbers where I could be reached directly or indirectly.  I can't say that I thought about it every time the phone rang, but probably most of them.  

In the meantime, I was trying to prepare myself as well as I could.  I had a bag packed in my trunk at all times.  I contacted Northwest Airlines and found out that they offer a discount for patients flying for a transplant.  I just provide them a code word, and I would fly for half price.  I wrote down their scheduled flights between Detroit and  Minneapolis.  I  also had maps and routes ready in case I had time to drive.

Well, the  call finally came near the end of June.  The timing was perfect.  We just had my daughter's graduation party, and vacation was still about 3 weeks away.  I was told that I would have time to drive to Minneapolis.  My husband was home to help with that and after informing/celebrating with my daughters, we packed and left.  The drive was exciting.  We were calling family and friends and just euphoric.  

Then another call came from the transplant coordinator saying that unfortunately, the pancreas did not yield enough islet cells and could not be used for a transplant.  I could tell that she and the transplant team were just as disappointed as we were.  We had driven about 3 1/2  hours by then, and it was a long trip home.  I knew that this was a possibility, but I didn't really think it would happen.  It was the biggest reason that I wanted to drive rather than fly.  It would have been even harder to take the news after my plane had landed and then realize that I now need to fly back home.  

So, we went back home to wait again.  I guess it was a good trial run.  Probably the thing I gained the most from this experience was that actually being on my way made it seem very real.  Between our excited exclamations, I had time to  think things through.  I realized that I was a bit apprehensive about the immunosuppression, and that it would probably feel strange in some ways to no longer be diabetic.  It was such a big part of me, although certainly not a good part.  But all in all,  I really believed that this is the right decision for me.  Even if it  doesn't turn out perfectly, at least I tried.  And negative data is still data.  It  would still  push a bit closer to the cure.

Friday, August 1, 2008

Signing the consent form

After all  of the testing is complete, it is reviewed by the doctors and the transplant team.  If everything is favorable, the patient is invited back to sign the consent form in the presence of the transplant coordinator.

So, it was a long way to go to  sign a paper, but I understand that this is part of being in a clinical  trial.  It is different than just going to the doctors office.  Both parties, the subject and the research team have a big investment of time and money and/or time and health.  I can see now especially, how important it  is  that we trust  each other.

But at this point, I needed to go  up there and sign a form that states that  I know what I am getting myself  into.  It is actually read word for word by the transplant coordinator.  Luckily, I have a background in health care and could understand most of it.  I was encouraged to ask questions on anything that I did not understand.  So we went through it all together and then I signed the form.  The entire form had been e-mailed to me earlier, so I had ample time to read it  over before I had to sign my name at the bottom.  So, with this done, I was added to the transplant list and would be waiting for the phone call.

Just before I left the clinic, I had the very pleasant surprise of getting to meet Dr. Hering.  I had been reading everything I could about him and his work and had seen some video clips of him talking about his plans, so  I was very anxious to meet him and shake his hand.  He was every bit as impressive as I had expected, and very nice to talk with.  We discussed the procedure and he even took the devils advocate approach, quizzing me to assess whether I really knew what was involved.  I think I convinced him that I did and that I really believed this to be my best option for my long term health.  Having uncontrollable blood sugars is not good in either the short term or the long term.  I also  asked  about the pig islet cell research, which I think kind of amused him.

Screening tests

The next step in the process, is  to go to U. of Minneapolis to have further testing done.  At this point, I was still considering U.  o f Chicago, but couldn't coordinate the time to go for screening.  So, my Mom and I drove through a snowstorm in December to Minneapolis.  I wanted to drive instead of flying because the testing was spread out over 3 days, and you move forward only if the test results are favorable, so I did not want to be rejected after the first day with no way to go right home.

The tests consisted of bloodwork that measured glucose tolerance, C-peptide, CBC, kidney and liver function, and immune status to a variety of diseases.  A 24hr. urine was collected.  An EKG was performed.  A stress echo of my heart, and an ultrasound of  my liver, and many other tests that I don't remember, or  don't understand.  There was also  a test, the PRA, that measured how many antibodies I already had in my serum.  If this number is too high, I would not be a good candidate, because I would be very capable  of rejecting the new cells.  This was the number I was most worried about.  There is no way of predicting what it might be.

The testing was  enjoyable.  Everyone at the  clinic was very knowledgeable and friendly and I was confident that my test results would come out as expected.  I would fail all of the glucose related testing and pass all of the general  health tests.  I did stay until the third day, and then we made the journey back home.  Fortunately, the weather was much better.  Unfortunately, I didn't get all of the results of the  tests before I left, the PRA especially, so we couldn't completely celebrate  yet, but things looked good.

Here is a study of islet cell transplants that includes the inclusion/exclusion criteria.

from the beginning

I am writing this blog in hopes that I can share my experience of having an islet cell transplant with anyone who might be contemplating this option, or with anyone who  is just interested in any part of this  process.  It has been a major life experience for me, and I am still in the beginning phases.

I think it is important to start at the very beginning, but until I get up to real time/date, things will seem somewhat out of order due to the nature of blogging.  I am currently on day 11 post  transplant.

I first became aware of islet cell transplants about 10 years ago when they were first performed in Edmonton, Canada.  The newspapers covered it  extensively for the  first month or two.  It truly seemed like the path to the cure.  At that time, all the excitement was about longer  acting insulins and the insulin pump.  Those seem like just crutches.  A transplant seemed much more hopeful of a long term success.

Skip forward about 10 years, I am now on the pump, a continuous blood glucose monitor, and am also injecting Symlin.  I am reading alot about all of these things, including some blogs that I found very helpful.  I happen upon some new research in which pig islet cells might be transplanted into  humans.  This catches my eye because I have a profound interest in pigs.  I go  to the website and find the DIIT at the University of Minnesota.  They are actually performing islet cell transplants.  I fill out a short form on the website asking to be considered as a subject in a clinical trial.  A few  days later, I hear that  I might just be a candidate and they will be sending me more forms to  fill out and to circulate to all of  my doctors.  Wow, I am amazed!

In the meantime,  I decide  to enhance my what I  believed to be a slim chance by applying to other centers that I had found in the meantime.  So I sent my applications to the  Mayo clinic, and two  sites in Chicago because they are so much closer to home, and I learned that there are many post transplant checkups that have to be performed  on site according to protocol.  The forms were all very similar, and all four centers seemed interested in me as a candidate.  They are all looking for patients who have a very difficult  time managing their blood sugars on a daily basis, but are otherwise quite healthy.  It also  helped that I  am small in size, thus needing fewer islet cells.

The decision was very difficult.  All  of the centers have very personable front people who were very enthusiastic about what they could offer.  I really felt that  I  was in a win/win situation.  In the end, I decided on U. on Minnesota because after reading as much as I could all over the internet, It seemed that Dr. Hering was at  the forefront of the field, and that U. of M. seemed to be getting the best results with the success of the transplants.  So I decided  to make that my first choice and just live with the travel time and expenses.