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Two Months Post Transplant

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It has been two months since my transplant and parts of the recovery process are going well and parts are not going as well.  On the positive side;  I feel great as compared to pre-transplant and incredibly better when compared to pre-dialysis.   My kidney function is doing very well and it seems to be doing everything it is supposed to do very well.  My stamina is slowly coming back.  I am walking every day, like 2-3 miles, but I seem to get a shortness of breath when walking up hill or on flat ground after like 20 minutes.  I am able to power thru it and continue walking unless it happens while I am doing yard work or walking up hill.  My doctor (surgeon) told me that this is due to a continued low red blood cell count.  He did start me on an Iron supplement to bring up the red cell count.  Also this week my nephrologist put me on vitamin D supplements.  My wound that they re-opened three weeks ago to drain excess fluids has finally healed although the visiting nurse is still coming and today I had an overly high blood pressure reading of 180/80.  She got all worked up and called the Yale Transplant Center and now I may have to go in on Monday to get checked out.  While my blood pressure has been running higher than they want it has not been that high so I am concerned since when I previously had high blood pressure issues I had a stroke.

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Kate’s wedding is now under the 50 day countdown mark.  RSVP cards are coming in every day and we have started to receive wedding presents.  Today, Saturday, Meg and I went to Rhode Island for a dress fitting for Kate’s wedding dress.  It was also the start of Kate’s bachelorette party/weekend, so there was a lot of her high school and college friends that descended on this small bridal shop in Warwick.  After the dress fitting, Kate and her friends headed off to Newport to party.  Meg and I went into Providence to run some errands for the wedding.  We are down to the little details to get done.

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No News Is Good News

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So I haven’t posted anything here in a while, mainly because there has not been any news – kind of a ‘no news is good news’ thing.  My wound is still leaking fluids but not as much as when they re-opened my wound.  The packing they stuff into my wound has been coming out more bloody than the fluid that is leaking and that is a good thing and there is no sign of infection.  It still is not totally healed though and that is distressing.  I have spoken with all the other transplant recipients from our paired exchange and I am the only one they had to re-open, everyone else is totally closed up at this point.  I have a visiting nurse that comes by twice a week to change my bandage and re-pack the wound.  They also re-pack and change the bandage at my weekly clinic visits at Yale.  The other days of the week Meg changes the bandage and re-packs the wound.

This week at my clinic visit I had an appointment with my surgeon that did my transplant.  He looked at my wound and probed it and didn’t find any signs of infection although it is still leaking fluids, but only a little.  He is very happy with my Kidney function and with how my recovery is going.  He is pleased that I am walking at the gym again and amazed that I am up to 2-3 miles per day of walking.  He did say that I still can’t lift any weights yet and he told me it might not be until June that I am cleared for weights.  I did tell him I am doing some minor yard work, mainly brush clearing.  He said that is OK but not to lift anything heavy or to do too much work at once.  He also told me that my shortness of breath is due to an Iron deficiency and how to fix it thru diet and/or vitamins.  I also met with my endocrinologist this week about my diabetes and he made some minor changes to my insulin regimen.  Overall he is happy but after I take my prednisone in the morning my blood sugar spikes so he has made my lunch dose higher and my overnight dose smaller since I have been low in the morning.

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Wedding plans are proceeding.  We are now under 60 days until the wedding and the invitations have been mailed and every day we are getting responses back.  Plans are going well and we are getting excited for the weekend.  We go to Providence next Saturday for another dress fitting and then Meg and I will run some errands in Providence after the fitting.  We are also going thru organizing seating, programs, place cards, menu cards, and all the other details to make this event happen.  Plans are also underway for Kate’s bridal shower which will be in the beginning of June but other than Meg and Carolyn attending it we don’t have any thing to do with the shower.

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Carolyn just returned to Spain after her week trip to Morocco.  We hope to Skype with her tonight to find out how she liked Morocco and what she did while there.  I did see a picture a friend of hers took of her mounting and riding a camel!  I told her before she went that if they go to Casablanca she has to go to ‘Ricks Cafe American’ – she had no idea of what I was talking about, so I must have failed as a father. She has about one month left in Spain and while we can’t wait to get her back, she probably has misgivings about coming home as she is having a great time and her parents are pretty boring by comparison.

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Re-Opening and Other News

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My wound from the transplant has been leaking a considerable amount after they took out the final two staples.  I spoke to the doctor last week about it and he brought in a surgeon to re-open my wound and check it out.   He broke thru a barrier and a flood of fluid came out.  So now I am having to have a visiting nurse and/or Meg pack my wound with gauze every day until all the fluids are dried up and not leaking anymore.  The picture above is my wound and where the hole is was where the main gush of fluids came out and where we are having to pack the gauze in.  The good news is that they have not seen any signs of infection in the  wound either on the surface or down in the wound itself.  It does hurt a little bit now which it hasn’t done since about two weeks post transplant.  I had been walking about 40 minutes per day at the Mall, but now I have had to cut that down due to the pain in my wound.  Next Monday I go back to Yale (again) to see my nephrologist and a surgeon to check my wound.  Last week they also removed the stent that was in my ureter.  It was a very humiliating experience although thankfully it was over very quickly and fairly painlessly.

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I have finally, despite the pain in my wound, returned to the gym today to exercise.  I only was able to do around 35 minutes on the treadmill at a much lower pace than prior to the transplant but I still take this as a good sign.  While I have enjoyed walking the mall with Meg it did not have the same intensity as the gym.   I only did the treadmill, no weights yet, but I am planning on meeting with a trainer and explaining my situation and getting advice on which weights to use and which to avoid so I don’t do any damage to my new kidney.  When it gets warmer I hope to walk outside as well as at the gym and also plan to ride my bike after my wound is healed.

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In other news, Meg returned to work this week, but is going back gradually.  She worked 1/2 days on Monday and Tuesday and only like a 3/4 days on Wednesday, Thursday, and Friday.  Next week she is on spring break and then she will return full-time.  I started driving again this week and am enjoying having some independence and freedom.  Wedding plans are proceeding well.  We got all the invitations stuffed, addressed and sealed with wax and they are now in the mail – so I uses we have to go thru with this event.  Kate finalized the florist, the baker for the Wedding Cake, and I contracted with a limousine company and a lighting company so things are falling into place for the big event.  Carolyn returned  from her trip thru Northern Europe and is back in class in Granada.  She had a great time and is now preparing for her next trip to Morocco next week.   We also just changed her return flight back to the US and she will get home on the Sunday of the Memorial Day weekend – can’t wait.

 

 

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I Survived The Transplant But The Side Effects Are Trying to Kill Me!


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So my recovery is continuing and I feel stronger every day but I am starting to be bothered by the side effects from the various anti-rejection drugs and steroids that I am taking.  My Nephrologists at Yale are trying to get my dosages under control so that I am not bothered by the side effects but it is complicated to get the dosages correct.  My wound is healing nicely and I have very little discomfort from it but it is still leaking a little bit and that is causing a rash under my belly that is starting to hurt a lot.  Also the prednisone is causing some issues with shaking in my hands that makes writing, typing and eating difficult.  They did just lower my dose so hopefully the shaking will get less.  I am also putting on weight which is not good.  It is to be expected but I can’t afford to put on any weight.  So far I am up about five pounds since my transplant.  Now they tell me that the average person puts on like 25 pounds after transplant and I am hoping to not do that.  The problem is that after my transplant I now have an appetite and some of these drugs amplify that and you can get into the habit of snacking all the time.  I am trying to limit my snacking and so far it is going well.  I have also started having night sweats which is new.  I will wake up at like 5 AM covered in sweat and my t-shirt soaked.  I haven’t suffered from some of the other side effects like the shortness of breath, chest pains, diarrhea, and hair loss.

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So this week I have four doctor visits although one is with my dentist for a crown that cracked over the weekend.  I have my normal Monday and Thursday clinic visits and then on Wednesday I go in to have the stints removed and the staple that is attaching my eureter to my bladder.  I am kind of nervous about this just because of how they plan to go in thru my urethra to get at my bladder.  I am not sure how they get the stints that are securing the blood lines from my new kidney to my arteries – and it is the not knowing that bothers me most.  Also the fact that they told me I will be awake thru all this.  I will post how it happens after the fact.

So this weekend is Easter!  Kate and Kenny are coming this weekend.  Hopefully we will finalize a bunch of the final wedding plans and also celebrate Easter.  I think we are having Rack of Lamb and I am trying a Baked Alaska.  Carolyn is halfway thru her Northern Europe bus tour.  Today she is in Amsterdam then she will go to Brussels and end in Paris and fly back to Granada on Easter Sunday – her birthday!  They spent last Friday and Saturday in Prague and then the first part of this week in Berlin.  We hopefully will be able to Skype with her when she returns on Sunday and hear all about her trip.  Then she has two weeks of classes and then they go on another trip with the whole group of exchange students and professors to Morocco.  Sounds like she is having a great time and Meg and I are very envious!

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Recovery Well Underway!

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So my recovery from surgery continues and I am now feeling much better than when I first got home after surgery.  I still go in to Yale for check ups twice each week.  My kidney function continues to improve.  My Creatinine level continues to go down.  The creatinine clearance test is used to estimate glomerular filtration rate (GFR). GFR is a measure of how well the kidneys are working, especially the kidneys’ filtering units.  Before the transplant surgery it was at 11 and today it was down to 1.3.  My nephrologists are very happy.  They didn’t think it would get much below the 1.5 level due to the age of the kidney that I received but they were happy with the 1.5 level.  Also, today they took out the final staples in my incision.  They took out most of them on Monday and the last two today.  Next week I have an appointment to have the staple that is connecting my ureter to my bladder and they will also take out the stints that connect the two blood veins from my new kidney to the arteries.  This is an outpatient procedure but it sounds uncomfortable.

The end of last week I was cleared to go out some.  I can go to the mall and walk since it is still too cold outside although that is rapidly changing, finally!  Meg and I started with doing like only a lap and a half at the Trumbull Mall last week.  We have been going every day and today we did four laps of the mall which my pedometer says is about 1.5 miles.  Considering that when I got home from surgery I got winded just going to the bathroom and now I can do 1.5 miles.  Hopefully next week I will be cleared to drive and then I can start going to the gym.

 

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Semana Santa, Holy Week in Spain, basically shuts down everything and all the students that are doing Home Stays in Granada are asked to vacate their homes for the week so their hosts may have family in or they may travel to visit family.  So Carolyn and several of her friends have made arrangements for a bus trip thru northern Europe.  Tonight they flew from Malaga, Spain to Prague then they will bus to Berlin then to Amsterdam and lastly to Paris.  They will spend 2-3 days in each city and will have tour guides to see the sites and still have some free time to explore.  They will return on Easter Sunday (which is also Carolyn’s birthday) and then start back in with classes on the Monday after Easter.  Meg and I are incredibly envious and wish we could do a trip like this – it sounds like a blast.

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Wedding planning continues despite the recovery.  The invitations which we ordered the day before the surgery have come in.  Now we are double checking the list of invitees to make sure everything is perfect.   Then we have to print both inner and outer envelopes, stuff the envelopes and seal them and then stamp them.  Everything has to be done to mail them by around April 15th.  We are also finalizing the final vendors for flowers, cake, limousine, and wedding favors.  I am sure there is more to be done but that is what I can think of at this point.  Meg was able to go to the first Wedding Dress fitting last weekend in Providence.  I am sure it is going to be a great party – we Rennie’s know how to throw a party!  My brother and his wife and my sister are all coming and we are all staying a couple of extra days in Providence – we don’t see each other that often so we try to make the most of it when it happens.  We are under the 90 day mark till the wedding so there is still a lot going on but I can’t wait for the wedding and all the hoopla!

 

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My Andy Warhol Moment

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So my recovery is continuing and I notice improvements every day and less pain – until today.  I have been having some continuing pain in my incision which is weird and I just don’t feel as good as I have been feeling.  Usually I don’t feel it at all and only have pain when I get up or down and then when I cough (a lot of pain when I cough).  I am walking better although I get winded when I do too much.  So this week I had three trips to Yale.  Monday I went in and saw the surgeon (and they drew blood).  He said things are healing nicely.  Thursday we went back for the big meet and greet (more in a bit).  Friday I saw the nephrologist and drew blood of course.  My kidney function is doing great.  My creatinine level is down to 1.5.  It was at 11 when I went in for surgery.  This measures the amount of impurities in the blood.  they don’t think it will get much lower but they are happy with the 1.5 level.  I go back twice each week for the next three weeks or so then once per week and eventually just a monthly visit.

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Thursday was the big meet and greet and a public press conference.  I met my donor – Patricia.  She is from Mystic and was the altruistic donor that made this whole transplant chain possible.  I can’t express my gratitude for the gift she of life that she gave to me.  She came with her daughter who, like Kate went to Providence College.  After a lunch with all the donors, recipients and the transplant team we did one on one interviews with the NBC Connecticut TV station which actually had cameras in the operating rooms.  Then there was a press conference with all the donors, surgeons, and hospital administration people.  In attendance were all the Operating Room Techs and Nurses, all the transplant center people and other hospital people connected with the surgery and lots of press people.

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The surgeons reviewed what happened that day and who donated to whom.  They started the first surgery at like 7:30 AM and finished the last surgery at like 6:00 PM.  Patricia spoke about why she made the decision to donate.  Then the four recipients spoke for a minute each about how we are doing and feeling.  We all feel about the same.  I seem to be doing maybe a little better but some of the other recipients have been on dialysis longer than I was.  One guy was on dialysis for over 5 years.  One of the donors was not yet on dialysis but was about a month away from starting.  We all are very grateful to our donors and to the whole team at Yale.  After the press conference I spoke with a reporter from the Connecticut Post and from another TV Station about the process and how I’m doing.

Thursday evening we were on several news reports and web articles.  We started getting texts telling us that they just saw us on TV etc…  Friday it was in the newspapers.  A big article on page 2 of the Connecticut Post and Page 1 in the New Haven Register and the Hartford Courant.  I hope that Yale gets lots of mileage and that they get more altruistic donors as a result.  This one altruistic donor made new kidney possible for four of us and then we come off the list and four more people move up on it and they can get closer to their dream of a new kidney.  I enjoyed my 15 minutes of fame but now it is time to concentrate on my recovery.

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Kidney Transplant Story

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Success!  So the transplant finally happened.  We went in early Tuesday morning for a large paired exchange transplant with 4 donors and 4 recipients.  Everything went very smoothly – a lot of hurry up and wait – and of course I proved to be a difficult stick for them to get an IV line in me.  They tried twice when I was awake and failed and then they told me they would knock me out with gas and then put in a line.  I woke with two lines in – one in the top of my wrist and one in my neck.  I also had some new bandages where they had tried to put in lines and failed.  Meg was the second surgery and I was the third of the day.  the donor of my new kidney went first.  I awoke around 3:00 PM very groggy and in multiple types of pain – but the good news was the morphine drip that I could control within reason.  They came and did a sonogram which I wish they could have done while I was still out – boy did that hurt.  I was told Meg was doing well and was already in her room, but that it would be awhile till I could see her.  I finally made it to my room around 6:00 PM and was able to see Kate and Kenny who came for the week.  Had a very rough first night, couldn’t sleep and was very uncomfortable with the foley catheter but happy to be producing something.  Had lots of pain in the incision, which should form into a cool scar, and pain in my bladder which makes sense since it hadn’t been used in almost two years.

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I got no sleep the first night and had lots of episodes of pain but it would come in spasms and then go away for a while.  I did finally get to see Meg as she was walking around and in a room nearby mine which was nice but she was in a lot of discomfort as well.  Was taken down for another sonogram and that took around an hour and more pain but it was getting less.  I did finally get out of bed and sit in a chair for several hours in the afternoon.  No real interest in food yet but did have a cup of jello.  I was drinking water much except for ice chips for the pain in my throat.  They got on me about drinking as I am now urinating and need to replace the water but for two years I have been on a limited fluids and now they want maximum fluids.  At midnight they took out the foley catheter and now I have to go on my own which is very painful and also very frequently.  I finally got a couple of hours of sleep that second night thru like 1/2 hour blocks interrupted by trips to the bathroom or the pee cup they give guys.  The nights and days were filled with an endless line of technicians taking vitals and blood sugar check and blood draws.  Also meetings with the dietitians, pharmacists, social workers, and physical therapists all to review my post operative plans.  I have binders and medical plans for my drugs, and follow-up plans for future medical visits.

Friday I finally was able to walk on my own without the nurse of walker.  I was finally eating a little and drinking lots of water so they decided I should go home.  I was finally feeling a little better and the pain is becoming less.  I did have a final sonogram and was finally able to go home on Friday afternoon.  I feel more relaxed at home now and feel I can recover better here.  I go back in on Saturday for another blood draw and have my first follow-up visit on Monday.  I can’t drive or go out for anything but Clinic visits for the first month hopefully then I can get out and drive.  Kate and Kenny are still here and they are great help.  Meg is improving as well.  On Thursday we go in for a clinic visit and the plan is that there will be a press conference and we will get to meet all the donors and recipients.  This was the largest paired donation at one place in the State and Yale wants some promotion out of it to spur other altruistic donors.

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Counting the Days!

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So surgery is set for next Tuesday, March 3rd!  As it gets closer I am getting nervous about everything.  I am not concerned with the actual surgery but with what might cancel the surgery that I have no control over.  This past Monday we went in for the final blood work and meetings with the surgeons etc….  It went fairly well except my surgeon was out sick so I met with a different surgeon.  Now I would rather have met with my surgeon but if he has to get sick better it was the week before my surgery than the week of my surgery.  We did learn that this surgery is very important to the Yale Transplant Center as it is the largest paired exchange to happen in the State ever, so it is in their interest to make sure it happens.  Both Meg and I had to sign press agreements and agree to participate in a post surgery press conference if they are all successful.  Apparently there is one altruistic donor in this paired chain that helped to make this all possible.  So if we do a press conference we will all have to meet each other.  My main anxiety comes from the idea of change and my natural skepticism to my ability to adjust to change.  I am looking forward to feeling better, going back to eating a lot of foods I’ve been missing and being able to urinate like a normal person.  I am not looking forward to the hospital but I must endure it to get the new kidney.

My treatments continue although we still can’t access one of my button holes.  My nurse has given up trying and just puts one sharp needle in and then I put in the other needle thru my arterial button-hole (although it now has become the venus hole).  My nurse has given up the thought of establishing a new button-hole although she will be able to if the surgery doesn’t happen, but she and my doctor said why bother with the Transplant so close.  This week she has been coming to my house so I can dialyze at home so my schedule has returned somewhat to normal and I like that.  I am off today and Sunday but will dialyze on Saturday and then again on Monday so I am down to only two more treatments and then this nightmare will be over.  Now I will have a new set of challenges to deal with after the transplant but tomorrow is another day!

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The Human Pin Cushion

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So my challenges with my Venus Hole Access continue.  This past weekend my nurse came out and we tried my venus hole again after having letting the swelling reduce for like 4 days.  I tried it with a blunt needle – no luck.  My nurse tried it with a blunt needle – no luck!  My nurse then put a sharp needle down my button-hole – NO LUCK!  So we went back to a sharp needle in a different place – I am starting to feel like a pin cushion and my arm is starting to look like one giant bruise.  We can do dialysis this way it is just a pain to have to take my supplies into my training center.  Hopefully we will settle upon a schedule where I go in for a couple of days and then my nurse comes to my house for a couple of days.

Monday Meg and I went to Yale New Haven Hospital for both the pre admission screening and Meg had a blood test and an EKG and I just had an EKG.  The screening was basically the same info I did in December about the drugs I am currently on and what to do the night before surgery and the morning of surgery.  After the Yale appointments I came home and gathered supplies to take to my Dialysis Home Training Center for treatment.  My nurse had scheduled me to see Dr. Rosenblatt about my access on Tuesday, during which he confirmed my vein has moved and then he did another fistula gram.  This is where they look at my vein and then put a balloon up in and inflate it to change the location of the vein.  He then drew on my arm where he believes my venus access should be.  It is apparently about 2mm off from the current button-hole.

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So at this point I don’t know what we will do.  My nurse can try to establish a new button-hole.  This takes about 7-9 treatments with a sharp needle being inserted into the same spot at the same angle.  Then I can continue to use it with blunt needles.  The problem (good problem) is that I only have like 8 treatments until my transplant!  In other good news they have given up on the emla cream as this creates a skin reaction that is very annoying and the think is what created this current problem.  They are now injecting near each access site with lidocaine, a numbing agent that makes the needling experience pain-free.  While it creates a pain-free needling, it is more needles being injected into me and that is nerve wracking.  Hopefully this will all end with a successful transplant.

In other news – Carolyn is having a blast in Spain.  She has started her classes and her internship with a local K-12 school.  She is making friends and has planned a holy week trip to the rest of Europe – she will go to Prague, Berlin, Amsterdam and Paris.  She is also booking some weekend trips to Barcelona and Italy.  It is hard to think of a weekend trip to Italy so think of it as like a weekend trip to Chicago.  Once you are on the other side of the atlantic it is not as big a deal to travel within Europe.  Then she has a spring break trip (as to opposed to a holy week trip) to Morocco with the program she is in Granada for.  She should return a seasoned world traveler!

Wedding plans also continue.  This week we ordered invitations – this should give me something to do during my recovery from surgery period.  Kate also met with a florist in Providence this week and we got the final menu plans (minus the desert option) from the caterer for the reception.  Kate is coming to visit this weekend for my birthday and we hope to make some more decisions and review the first proof of the invitation.  And because there is not enough going on I am in the middle of getting the info together for my taxes and I have to complete Carolyn’s financial aid forms.  All before the surgery!  Keeps my mind off of my dialysis challenges.

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A Year in Review!

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So it was exactly a year ago today that I had my first appointment with the transplant center at Yale New Haven Hospital.  An awful lot has happened in the time since my first appointment.  Meg and I went to the appointment not knowing what to expect.  We found out at that time that Meg might qualify to be a kidney donor so she went thru the testing that day.  In March we found out that she was a match for me except that we both needed to lose some weight before they would approve a transplant – Meg 10 lbs. and me 20 lbs.  This seemed like a difficult task but possible.  Working very hard Meg hit her goal in early summer and started doing the other testing (24 hour urine testing, multiple blood testing etc….)  I was behind her but eventually in the fall of 2014 I hit my goal weight.  Then I had to quickly get a stress test and an echo cardiogram and more blood work.  Then I had several exams at the Yale Transplant Center and the final blood test and was told one of my blood levels was too low.  So we quickly added a drug to bring that level up and it worked and all was set to move forward.  We had a date, I did one last blood test, my daughters were schedule to be here, I had finished all my Christmas Shopping and most of the wrapping – we were all set to go.  Then I get a call telling me were cancelled due to a problem with the final blood work, it looked like I would reject Meg’s Kidney so they don’t want to risk the surgery.  Merry Christmas – no transplant!

Well now it seems there is a hope of a transplant thru the paired exchange program.  There are 5 donors and 5 recipients lined up as part of this exchange and Meg and I are two of the cogs of this giant wheel.  With so many people involved a lot has to happen correctly for these to happen.  Most of all I need to make sure my current treatments are proceeding properly.  Normally this would not be a problem but Sunday evening this past week I put in my first needle (arterial needle) fine and then could not find the vein for my second (venus needle) hole.  We tried like four times and spent like an hour at it and finally gave up.  Monday evening the same thing happened and I spent even more time at it on Monday.  So now I have not dialyzed since Friday as Saturday was a scheduled off day.  So Tuesday, Wednesday and today I went to the DaVita Training Center and my training nurse couldn’t even get my venus vein.  So she by-passed it and put a sharp needle in and we have done treatments that way three days this week.  Slowly I am getting back to normal.  I also put online 12 pounds in the four days I missed dialysis.  It is mainly water and we have since taken off like 7 of those pounds but I need to get back to my surgery weight to make sure that I do everything to make this transplant happen.

Meg and I are scheduled a couple of more times at Yale New Haven Hospital for testing etc….  Next Monday (2/16) we both go in for pre admission screening meetings and then Meg has another blood test and also an EKG.  I have the pre admission meeting and then I have an EKG.  Then the following Monday (2/23) we both go back for final blood work and then meetings with the Pharmacist, Dietician, Social Worker, and both of our Surgeons.  In the meantime I am trying to lose weight and not get sick.  If everything works out, the surgery will be on Tuesday, March 3rd!  We are cautiously optimistic.  It would be great to be done with dialysis.  I can’t wait to urinate again.  There are foods I have missed like milk, peanut butter, ice cream, and chili.  Most of all I want to be free for the weekend of Kate’s wedding.  Originally we hoped to have the transplant in December and be able to visit Carolyn in Granada but now I won’t be allowed to travel until after she is back in the United States.  So we are doing everything we can to make sure that March 3rd happens as scheduled!