Advice regarding surgery, follow up, and out of town travel

[jstx]

I've posted on here a couple times and everybody gives great advice and information so I'm back with another question. :-) I know you all already know this, but it is a long process from the beginning of testing until donation!  I've finally almost made it!  I've been cleared to donate and given a surgery date (June 6th)--I know I still have some time to figure out the details but I'm a planner and am trying to get all the nitty gritty stuff figured out.  I will be traveling from out of state for surgery and am wondering how others have dealt with this.  My surgery will be on a Monday so I'm meeting the anesthesiologist the prior Friday morning (June 3rd).  That means my mom and I will have to fly in on the Thursday (June 2nd) before surgery.  With surgery on the 6th and a discharge date of the 8th if all goes according to plan, I have until the 15th for my follow up with the surgeon.  This is a long time for the recipient to pay for my lodging.  Alternately, I could go home when they clear me to fly (probably the weekend after surgery according to one of the post-donation coordinators) and see my regular doctor for my follow up.  I'm wondering how any of you have handled this if you donated from "afar".  I realize that it is important to stay close to the transplant center in case of problems, but I also have heard that people tend to recover faster when they are home in their familiar surroundings (I could walk around my own neighborhood, I know where the grocery stores and shops are if I need anything, etc versus being in a new city--Baltimore, by the way---having to take cabs and all that).  So with all this being said, what do you all think?  What would you recommend?  What other things do I need to consider when planning my trip since I'll be so far from home?

Thanks, in advance, for all your help.  This website and message board have been such a great resource for me over these many months while I've contemplated donating and gone through the tests, etc and I don't know what I would have done without all your wisdom.

Jocelyn

[Aries7]

Hi Jocelyn!

First off, a huge congratualations on being cleared to donate and getting a surgery date - that is wonderful!

I donated only 2 and a half hours from my home - so there was no flying involved. I donated to my husband and the two of us had to be at the hospital the day before for the final tests, etc. We stayed overnight in a nearby hotel the night before surgery. The morning of surgery, several family members came down to be with us. My Mother-in-law stayed down by us in a hotel the entire time we were down there. I ended up being in the hospital for 4 days, my husband for 5 days.

Since I was released a day before my husband, I stayed at the hotel with my mother-in-law the first night I was discharged. The hospital was able to get us a bit cheaper rates at the hotel also. The next day after my husband was discharged, my mother-in-law drove us back home. We both did OK on the ride home. While the hospital staff were absolutely wonderful, I will say it was nice to get back to my own home, my own bed.

The only real "complication" I had was a rather stubborn, severe rash that actually developed while I was in the hospital. (It was a side effect from something during surgery - not sure what though). The doctors began treating it when I was still in the hospital. I ended up needing further treatment (stronger prednisone) after I got home. I was able to go to my regular doctor for this. In my case, it turned out that my regular doctor had worked with the nephrologist and surgeon in medical school/residency. She kept in close contact with my coordinator in Madison and things worked out fine for me.

I also like it that I was able to be in familiar surroundings - my own house, take walks around my block, be near family and friends.
This is something I would definatley discuss with your coordinator. It will be great for you to have a family member or friend with you. I was so glad our families came down and that my mother-in-law stayed with us. It was very helpful and appreciated.

I know there are some who donated and had to fly afterwards to get home. I am sure they will commment and share their experiences as well. Please keep us updated as to how things are going and how you are doing. Best wishes to you!

[Fr Pat]

Dear Jocyeln,
      Congratulations on your testing and your surgery date.
      It might be wise to also keep in mind that while most donors have a normal problem-free recovery, SOME donors have had serious complications (which can happen in any surgery). If that happens (I hope and pray that it won't) it would be VERY helpful to be close to the transplant hospital so that those same doctors/nurses could treat you while knowing exactly what was involved in the original surgery. It would also help avoid billing problems if you had to go to a different hospital near your home due to complications. Internal bleeding, damaged lymph vessels, nerve damage, infection: all the things that CAN go wrong in any surgery are possibilities, even though remote ones. The inconvenience of staying in a strange place for a while would be small if compared to the problems of getting complications diagnosed and treated in another hospital.
      So, just one thing to keep in mind in your planning.
       best wishes,
         Fr. Pat

[sherri]

Jocelyn,

I thought maybe I would reply to your post on the forum so you can have all your information together.

I had my surgery on Monday, like you, it is surgery day at Hopkins, which does make it more difficult for out of town donors having to come in extra early. I ended up going home on Friday morning. I don't remember anyone ever saying its time to go home and I was feeling like I got hit by a truck so I never asked.By Thursday I was ready so I left the next morning.

Since you are a planner, the best thing you can plan for is to be ready for whatever happens. If all goes well and you are discharged on Wed, feel ok to travel by plane and the physicians think this is safe for you immediately after surgery then you can go. Speak with your family physician and make sure he/she is comfortable taking responsibility for your immediate post op wound check and the blood and urinalysis that needs to be done to make sure your creatinine is at a safe level. Hopkins would need to make sure the notes from your surgery and all your labs get to him/her so you can be treated back home. They may of may not do that given my experience. But you and your Mom could visit Medical Records before you get on the plane and take all notes with you if necessary.

If you are not quite ready or end up with a complication be prepared to stay. Since you do have time, contact the airline and ask if they would waive the rebooking fee in case you have to change your flight home. Get the hospital to write a letter. In terms of payment for the stay, your recipient has had a lot of time since you offered to donate. Maybe he has been saving up for this, or has had some fundraisers for exactly this purpose. If not, there is still time for him to contact his local church or other house of worship, friends, family etc. He is not paying for a trip to Disney, he is reimbursing you for your willingness to risk your life, your future health, your comfort so that he can have a better quality of life. I am sure that the extra stay is well worth it for both him and you. If you stay at the McElderry House or at one of the hotels that have a deal with Hopkins then the rates would be adjusted. In the long run it will work out best for both of you.

Looking forward to welcoming you into the club when you get to Baltimore. I will be there to hold your hand!

Sherri

[audrey12]

https://livingdonorsonline.org/experiences/Audrey.html

Here's the link to my story.  I traveled from San Francisco to Chicago.  Some info may help.  My best tip: Call the airline and ask for a first class upgrade going home for both of you, at no extra charge.  American Airlines was very accomodating.

[livingdonor101]

Since the surgery isn't scheduled until June, your recipient is obviously in stable condition. While inconvenient at this juncture, I would suggest looking into having your surgery at a transplant center near your residence. You can recouperate at home, and not run into any of the continuity of care or billing problems associated with going to a different facility (and your recipient will not have to foot the cost of your lodging). 

It's unfortunate your recipient's transplant center didn't offer this as an option. While two surgeries generate more profit than one (yours and your recipient's vs. just the recipient), it's not necessarily the best thing for you to be so far away from home. The hospital that conducts your surgery is legally responsible for treating any complications; how are they going to do that when you live in another state? Organs are transported every day; there is no medical reason for you to have travel to donate a kidney.

[jstx]

Thank you, all, for your advice and feedback.  I really appreciate it!  I'm going to speak to my primary care physician about what she thinks and see if she can refer me to a local nephrologist in case I need anything.  I'm also going to ask my surgeon to give me the name of a transplant center local to me in case I do come back before my follow up appt and need to see someone (I'll check to see what the current transplant center's coverage of any fees from a local tc would be....).  I still have some time before I need to make my flight reservations and will have my coordinator write a letter/speak to American Airlines about allowing me to change reservations should something change with surgery/recovery.

Thanks again for all your information!  As usual, you give me much to ponder.

[Turtle]

Since the surgery isn't scheduled until June, your recipient is obviously in stable condition. While inconvenient at this juncture, I would suggest looking into having your surgery at a transplant center near your residence. You can recouperate at home, and not run into any of the continuity of care or billing problems associated with going to a different facility (and your recipient will not have to foot the cost of your lodging). 

It's unfortunate your recipient's transplant center didn't offer this as an option. While two surgeries generate more profit than one (yours and your recipient's vs. just the recipient), it's not necessarily the best thing for you to be so far away from home. The hospital that conducts your surgery is legally responsible for treating any complications; how are they going to do that when you live in another state? Organs are transported every day; there is no medical reason for you to have travel to donate a kidney.

Good post.
JSTX
Are you donating to a friend, relative or stranger?
Sorry, but that isn't clear to me.
It's quite an expense to fly, pay for food, lodgings, be far away from your "support network"...etc...and these days we hear about multi chains and organs being shuttled all the time.
It may not seem a big deal, but being within proximity to your TC and hospital is a big deal, especially since donors are highly recommended to follow a stringent 3 year post op program of testing and follow up care.
Choosing to have your surgery so far from home will bring lots of post surgery issues and problems.
If I was you, and I'm not so take this for what it is worth, I would recommend you look into having the surgery closer to home and have your transplant center work with your recipients to co-ordinate surgery.
I get the feeling by reading your post that you can't really afford it, so why go through the expense when you don't have to?

[jstx]

Turtle-thank you for your input.  To answer your question, I am donating to a stranger.  It is a long story but I had planned on getting tested for a friend.  After doing my research (months and months of research), I knew this was something I wanted to do.  When we found out we had incompatible blood types, I decided to donate to someone I met through this website.  He had posted that he was needing a donor so I contacted him.  I had asked my friend if she minded me helping someone else, and of course she didn't.  I really like the surgeon at Hopkins (as did my friend-when she has her surgery she's probably going to Hopkins for it too) and am comfortable with him performing the surgery.  I know there are always risks and things can go wrong, but he's performed hundreds of these and I have peace about going to Baltimore and having surgery there.  The expense stuff is just me trying to look out for the recipient.  It isn't a matter of me affording the lodging, etc because he is covering my expenses.  I just didn't realize I'd end up being in Baltimore for nearly two weeks because of the timing of the anesthesia appointment and the surgery.  That is requiring me to stay an extra 3-4 days.  He doesn't seem to mind though and he is grateful that I've come forward to help him.

[lawphi]

My husband received a kidney at JH and we spent a month in a hotel in Baltimore.  I will return to donate in June as well.

I recommend staying at any of the Harbor Magic hotels. There is a shuttle that will take you to and from the hospital and their other hotels. Fells Point is a great area with lots of restaurants near by and whole foods is a ten minute walk.  You can get a weekly JH rate for $129.00 a night.

Trust me, your donor won't mind paying for your won't mind covering your expenses.

I am going to do my follow up at home, absent any complications.

[PamelaKaye]

I donated in December 2009, traveling from Indiana to Washington, D.C. via Detroit.  My surgery was on a Tuesday and I was required to stay a full week for the follow-up appointment.  I presented every logical argument in an attempt to be allowed to go home, believing healing at home was in my best personal interest. I lost the argument and flew home a week after surgery.  The donor coordinator contacted the transplant center of a hospital in my home town where all my subsequent follow-ups were handled. 

All my expenses were paid by my family (I donated on behalf of my cousin) but I am frugal regardless of who is paying.  Sherri gave you a suggestion of where to stay (she's an awesome support, called me post-op and made my day!).  Anyway, check with the transplant center for deals they have with area hotels.  I donated at Georgetown and they have arrangements with a lovely suite hotel.  We were quoted $50.00 a night and learned at check out it was $25.00/night.  Much better than their advertised price of $300/night.  It had a kitchenette and was close to the hospital for hubby and, even with the close proximity, the ride back from the hospital was a real joy!    My gripe about the hotel was that the bed was too high, the loo too low and there was no real alternate seating outside of a rigid desk chair.

I took a friend's suggestion for the return trip and had arranged for a wheelchair at the airports.  It was a brilliant idea, one I would suggest to anyone traveling post-op.  If for no other reason, you and your traveling companion are taken to the front of the security line.  For us, the distance between terminals in Detroit, which didn't bother me on my initial round trip for tests or the trip to D.C., was prohibitive post-op.

The funny memory of the trip home was boarding the plane in D.C. for Detroit with the mayor of Detroit was on our flight.  For his protection, there was additional security.  As we prepared to board, individuals were selected from the line to be searched, which included being padded down by a same gendered security personnel.  Yes, I was picked out and just cracked up.  The hospital had provided a kidney shaped pillow to hold up against my stomach (which was an awesome comfort), so I appeared to be a middle-aged pregnant woman, I opened my coat for them, removed a pillow that shows a single kidney in its design and respectfully requested they not touch my abdomen.  They couldn't have been kinder.

You will be in my thoughts and prayers - please keep us posted.

[sherri]

Pamela,

So great to hear from you. I'm glad you are still looking on the board here at LDO. It is always inspiring and encouraging to hear how donors are doing down the road and especially donors with whom I was able to connect. I am looking forward to visiting our upcoming Baltimore donors and welcome them personally into the club.

How is your cousin doing? Hope your recipient is doing well also.

Thank you for your kind words and take car.

Sherri

[jstx]

Sorry it has taken me so long to get back online to look at the message board.  I didn't realize more people chimed in about my message.  Pamela, I am definitely getting a wheelchair going home.  A friend that is a flight attendant said it is basically a must to avoid being knocked into by others and will help with getting through security and around the airport.  Hopkins said they send a letter with me and Southwest will take good care of me.  I can't believe you found such a great rate on your lodging!  We'll be staying at McElderry House which is right near Hopkins and is a reasonable rate (though nothing close to $25!)

Lawphi, if you aren't totally set on your current hotel you could check into getting a townhouse at McElderry for about the same price. Two bedroom, one bath private townhouse with kitchen, dining, and living.  But you may prefer staying where you stayed before since you know the area and are comfortable with it.  Too bad we aren't donating at the same time-it's great meeting donor buddies.  Can't wait to meet Sherri who's been excellent and such a help!

So far the nervousness and anxiety hasn't been too bad.  I get anxious now and then but overall I'm staying pretty calm.  My recipient is also dealing with anxiety right now too.  So lots of people are praying for peace and success for both of us.  I know he is so ready to have a normal life again and I'm excited to be a part of it.

Getting last minute things taken care of-my mom and I fly out on Thursday and my sister will join us Sat evening.  I can't believe a week from now I'll be an "official donor"!  Many thanks to everyone on the message board.  You are so full of wisdom, advice, and support.  It's been great for research along the way even though I never posted much.  I have enjoyed reading everyone else's posts and feel like I know some of you "regulars"!

[PhilHoover]

I would be hard pressed to believe that any physician/surgeon/transplant team will clear you to fly 2-3 days after surgery...there are just  TOO many risks involved, and airline personnel are not qualified to handle them.   

Make as many plans as you can.  If you have friends in the Baltimore area, or know of any churches/groups that help donors with these types of situations, by all means, contact them.

Praying for a WONDERFUL experience on your part...

Phil Hoover
Chicago

[lawphi]

I think he meant he was arriving on Thursday rather than leaving.  I was told the earliest I could fly was on Saturday after a Monday surgery. 

JH is really pushing a longer hospital stay for donors than I have read about in the past.  It seems like the 2-3 day estimate has been extended to 3-4 days.  I pulled up old donor information packets from when my husband and I first started this process. 

Thinking of you JSTX!  I imagine you are close to being out of surgery right now.  Hope you have a very boring recovery.  I can't wait to hear about it.