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

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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.

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