Kidney/Pancreas transplant

[cassandra]

Good luck!!!!!


Love, luck, strength, Cas

[PrimeTimer]

we had a bump in the road where he had to deal with his first acute kidney rejection that delayed this a bit but that was cleared up and last Thursday they called and said to be prepared he's close to top of list.  Well they called today so we are on our way to the hospital for the pancreas transplant.  Thoughts with the young man/woman/child's donor family at this time and very anxious.

This is good news! Hope his surgery goes smooth. Must be a bundle of nerves but excited at the same time. Best wishes for the future!

[justagirl2325]

It starts really well. Surgery lasted 6 hours. In ICU for three nights. Liquid diet to start only  Blood sugars perfect. Walking around like a champ. Then they started to give solid food.  Cramps bloating constipation. All assume it is due to pain killers. So medicine for that. Everything including suppositories. Nothing. A CT scan reveals collapsed bowel. They figure the spot where new pancreas was attached to bowel not healed. Back to liquid diet to let heal. If not would have needed more surgery. But it heals on its own. All total ten nights in hospital. Recovering well now.

[PrimeTimer]

Sounds positive, that's great to hear! Does he still have to test his blood sugar for a while? No more diabetes? I suppose the real test will be when he can eat solid food. Hope he's resting and taking it easy, plenty of time to test food later. Thanks for updating us. How you holding up? Be sure to let yourself rest too.   

[cassandra]

Excruciating times Justagirl, hoping the recovery continues


    



Love, luck, strength, and recovery, Cas

[justagirl2325]

After they let him out Friday we had a good Saturday and then he was feeling unwell on Sunday.  Back for bloodwork Monday morning and his white blood cell count was through the roof.  He was readmitted for two more nights so that they could give him IV antibiodics.  They figure it was all to do with the bowel obstruction that caused bacteria in the gut to enter his bloodstream.

He's out again and feels good.  He still is supposed to check his blood sugar daily for the first three months as that will be the first sign there's anything wrong.  We're told that once he gets past a year with the new pancreas then in their experience the pancreas will last for the lifetime of the patient.

No more diabetes. 

[iolaire]

Glad he is back home.  The post transplant roller coaster should level out in a month or so.

[cassandra]

   


Thanx for the update, and enjoy some delicious extra drinks on me 


Such great news

[Xplantdad]

great to hear...please keep giving updates

[PrimeTimer]

After they let him out Friday we had a good Saturday and then he was feeling unwell on Sunday.  Back for bloodwork Monday morning and his white blood cell count was through the roof.  He was readmitted for two more nights so that they could give him IV antibiodics.  They figure it was all to do with the bowel obstruction that caused bacteria in the gut to enter his bloodstream.

He's out again and feels good.  He still is supposed to check his blood sugar daily for the first three months as that will be the first sign there's anything wrong.  We're told that once he gets past a year with the new pancreas then in their experience the pancreas will last for the lifetime of the patient.

No more diabetes.

That is very good news! I think it would be the hardest thing to go thru what you guys are going thru, I just could not imagine. I'm glad they are looking to the future with his new pancreas, I'd take that as a good sign. His feeling well is also a very good sign. The most important! Thank you for updating us. Have a good week!

[justagirl2325]

They let us come home from the big city, sent him home with a tool to remove his own staples as three weeks was not enough time for them to heal.  Ok, but I'm not doing that lol.  Hope he'll take their advice and has his family doc do it.

Weekly blood tests for three months now.  Best thing for him is that he ceases to be followed by his local renal team as they don't have the experience for the PAK transplant so he'll be followed by the big city docs for the rest of his life.  He never found he was well looked after locally so he's glad about that.

[cassandra]

Glad to hear such good news.


   

[iolaire]

I'm glad you are back home and also that you have the big city care team now. I hope they treat your husband well and keep him healthy.

Looking back at your second post:  (And then the rest of the posts – looking back it’s been a long process for you, I really hope you and your husband get a long break on the healthcare front.)

When the call comes we will have to travel to Toronto (they arrange that as time is of the essence) then we are on our own.  We would have to stay in the area until medically cleared (4-8 weeks).  She said to have fund at the ready of anywhere from $2 to $10K dollars to cover expenses.

How did it feel for you living through the transplant out of town?  Were you in a hotel for the time?  If you had had a center closer would you have begrudged being at that center, even if it meant that your husband was transplanted sooner?

I’m wondering as I could have been listed in 3 (US) zones that are all under two hours, away but choose just the close DC zone as I didn’t know how hard it would have been on my wife (and our two cats) for her to be holed up in a hotel out of town for the post-transplant period.  I’m happy I was close to home, and also found the post-transplant stay fairly short, but I don’t know how the follow-up care for the weekly (or more frequent) visits in the first three months would have gone if I was at an out of area transplant center.

[justagirl2325]

Yes, he deserves a break from operations and hospital stays.   

We really didn't have choice but to go away for the transplant, they don't offer surgery like that locally.  Even people who need other complicated surgeries for cancers or heart problems here have to travel the 1,000 miles.   And I'm glad because neither of us have confidence in local doctors for complicated matters.

For his first surgery (by-pass) I was in a hotel.  Actually I was in four different hotels as I could not find reasonable accommodation so I kept moving.  I'm talking couldn't find less than $500 a night.  That was a huge pain.  Some hotels where half hour train ride away.

The second surgery (kidney) was scheduled so I was able to rent a condo for a month.  Turns out we were there for a month and one day so we were in a hotel for one day.  I was a bit panicked as we were running low on funds and the thought of getting more $300-$500 a night hotels was not good.  It was about a 20 minute walk to the hospital sometimes we had to cab it because we were sore, sometimes we walked, and later on that month we had our car.

The third surgery (pancreas) was unscheduled but the company I rented the condo from for the kidney was able to rent a different condo to me for the month.  This one was really close to the hospital, like 3 minute walk.  I spent two nights on a chair at the hospital while we waited for surgery as I didn't want to rent anything for a month until the surgery actually happened (doc said it could be cancelled right up to 30 seconds before).  Then one night in a hotel then to the condo.  We ended up wasting a week as we got to leave after 3 weeks, no refunds as the rentals were only by the month but you take your chances.  I would have lost my mind in a hotel room for three weeks.  I need a kitchen

It's a bit hard as you don't have those things you use for comfort at home, like a couch, or a recliner or your favourite blanket and slippers, proper pans that you are used to cooking in.  But we tried to treat it as a adventure/holiday.  We had family visits on the second surgery that helped pass the time.  We have no pets so that was useful.  I was lucky at work as my coworkers are terrific so they were very supportive of my time off.



 

[UkrainianTracksuit]

Hey Just a Girl,

Have not been here for awhile but I have seen your husband had his pancreas transplant! Congratulations! Can't stop smiling for him and for you!

Yes, I remember the liquid diet for days post SPK well and had a similar white blood cell spike afterwards. As the surgeon explained, when they work with a pancreas, it's a bit of a dirty situation since they have to attach it to the bowel. It's true that they advise to check blood sugars regularly in the beginning to detect if anything is wrong, but to be honest, I haven't stopped, and it has been 8 months since the surgery. I was born Type 1 diabetic so in all honesty, I don't remember a time not checking my blood sugar.  I am still in shock a lot of the time that I can eat carefree and no more lows. That said, it will be nice for your husband to be able to stop that annoying little thing! Oh happy days!

Your team at your transplant center must have more up to date information than mine. From your post, I learned that if the "new pancreas" goes successfully for a year, then, it is good for a lifetime? Is that really so? I hope so! I mean. nothing is certain, but that hope lightens my mood. To be honest, I've heard so many numbers thrown around. My local neph team says something like "they usually only last 2 years" and my nephrologist makes it seem like it won't last long either. My tx coordinator made me feel a little better that she has a patient with his going 20+ years. Does your center have any sources or research?

We have a situation like yours too in that my local renal clinic doesn't have experience or knowledge on PK tx. And so, I have to make trips to see the team at the tx center mainly for the pancreas or things like kidney biopsies. However, they will look at my blood work and adjust my tac levels because SPK (or PK in general) troughs are the same than single kidney.

And also, like you, my tx center is close to 10 hrs away by car. We have to take two flights to get there. Lovely flying Air Canada Express.    Post tx, we were stuck in a hotel for over 2 months. But now, when we go back to the tx center (have been back 2x, will go back at the end of the month), we turn it into a little vacation since there are multiple appointments. Another great savior has been OTN (Ontario Telemedicine Network) for teleconferencing with some specialists in regards to transplant. They fax blood work requisitions during the teleconference, get the results and then advise locally. It's not ideal to be so far from the tx center city but it works out well!

Again, congratulations and it's nice to see someone similar in regards to being far from their center. All the best for your husband and his new journey.

[Paul]

I was in four different hotels as I ....... couldn't find less than $500 a night.

Where the hell was this?

England is suppose to be really expensive for hotel accommodation (you constantly hear American tourists complaining about it) but you can find plenty of cheap hotels for under $50, average ones for about $100, really good ones for around $150 to $200, and luxury ones for $300 to $400. For $500 you would expect it to include a dinner of caviar and smoked salmon, as much French champagne as you could drink, and your own personal butler on call 24/7.

(The last time I stayed in a hotel, about 3 years ago, it cost less than $24 a night, but admittedly it was a crap hotel, and the fire alarm kept going off for no good reason, usually in the middle of the night.)

[UkrainianTracksuit]

I do not want to overstep privacy boundaries if JAG doesn’t want to reveal where, but in the context of tx centres and hotel prices, it must be a city like Toronto.

Not an expert here but I think the tx program is at Toronto General and the hotels around the area in regard to pricing are not too bad.

Most are low priced in the range of around $150 to $300. There are a handful in the 1 km range over that: The Adelaide, Shangri-La, Windsor Arms, Cambridge Hotel. And they are just $400+ for very basic, but nice, rooms. If my memory serves me well, it’s the Cambridge that is close to the hospital closest to $500 + taxes. I guess the others plus taxes comes around $500. And then parking, with a car.

The only instances of higher end prices I can think of (around the hospital network) are the Fairmont Royal York at  around $700 for the Gold standard and perhaps close to $1500 for a large suite.

I don’t go to Toronto for transplant concerns but when we go for other medical, we stay at the Four Seasons. It’s not too far from the hospital network and I know it’s clean. They don’t offer medical rates though, must be below them.

It is possible to run into the $500 rate in the area but most are much more mid-range for tl:dr.

[Paul]

OK, so Toronto is off my "cities to visit" list! (Although it is now top of my "cities in which to open a hotel" list.) I loved the line "Most are low priced in the range of around $150 to $300." You obviously have a different definition for "low priced" than the rest of us. My absolute maximum for a hotel room is about $100, but 99% of the time I'll stay in places that cost less than $50. There was one exception , when I let my sister do the booking, she likes a bit of luxury (her room had a four poster bed) and history (hotel was built before Columbus landed on the shores of what was to eventually be called "America").

I'm guessing that the streets of Toronto are filled with Ferraris and Rolls Royces which are driven by people who call them "cheap little run arounds".

[UkrainianTracksuit]

Not to derail this more but perhaps one day, someone will have transplant and hotel questions, in regard to Toronto.

There are numerous hotels across Toronto that are in the below $100 range. People can find such accommodations easily. It’s the downtown area that has the upper priced accommodations and since the hospital is there... yes, you can assume safely! They don’t really work in regards to proximity to the tx hospital. So, yes, you still visit affordably!

Although, for clinic visits, they say to stay in a “1-2 hour window” (at least my tx team said so) around the city so technically, one could stay further away. But, without driving, it becomes too much a chore.

The streets are not filled with Ferrari’s and Rolls but they show up in certain areas. It’s a mix of all classes like any other big city!

When my husband and I go to Toronto for medical, we stay in Yorkville so I can shop my appointment-related depression away. But, that’s just us. Hotels are upper end and don’t really cater to medical travel but it works.

For transplant in another city centre, we took a taxi everywhere. Our taxi bill was rather elevated since my husband didn’t want to rent a car in a strange city and still strange country for him. Paying 2 months for a hotel was acceptable but the taxis irked me.

[justagirl2325]

Yorkville. Lovely place. We' d travel well together. We alway go up their our last night for dinner at our favourite Italian place  (Dimmi)

It is Toronto General. His doc is the head of pancreas transplants for Canada (Dr Schiff) so I'd take what he says with a lot of confidence.

As for the hotel disaster on the first trip obvious the bypass was emergency surgery and I was there the week of the Toronto International Film Festival. That's the most expensive week for the city. You have people like Jennifer Anniston booking 2 floors of rooms etc. Usually I can get $250. Still cheaper to rent a furnished condo

[UkrainianTracksuit]

Yes, for sure, if it comes from Dr. Schiff it has a lot of merit. That’s absolutely wonderful for such a respected expert to have such a positive outlook on graft “life expectancy.” Thank you for sharing that nugget of information. 

We will have to give a Dimmi a try when we trudge down there again. At the Four Seasons, they have Café Boulud on site so we mainly have dinner there. I hate having to get on the scale at a medical appointment the next day but yay, pancreatic freedom!

The odd night we take the longer cab ride to Don Alfonso 1890... if we get reservations when we book early! (And no appointment the next day.)