Waiting for test results as a potential donor

[alyfaye]

Hi all!

I have been following this forum for quite some time now as I am going through the testing phase of becoming a kidney donor. I am 21 years old and hoping to donate to a stranger (whom I heard about online via a friend) at Johns Hopkins in Baltimore. Although I haven't actually met my recipient I do know a little about her and am very excited to possibly be her donor. I have told my parents and close friends, who are all (some a little reluctantly) supportive of my decision. Has anyone here had the donor surgery at Hopkins? How was the experience?

In December I began the paperwork. I live in Texas so the process has been a little slow in dealing with the space barrier. I found out after Christmas that I am a match for my recipient. I have been running around to labs, doctors' offices and my gynecologist trying to get all of the testing done that will tell if I am suitable to be a donor. Anyway, I just handed in the jug filled will all of my urine from the last 24 hours, had my PPD (tuberculosis) skin test checked, and all my additional blood work done, so all of my tests are on their way! What I wasn't expecting is this anxiety that I'm feeling now over the idea that with all of the testing I've had done I might find out that there is something wrong with me that will prevent me from being able to donate. I think I'm more scared that I won't be able to donate than I am about finding out I have cancer or HIV or something else just as awful (btw, I'm pretty certain I don't have any of those)! Has anyone else experienced this? I'm a very rational person but I just can't seem to think rationally or shake this anxiety right now :/

My biggest struggle is the anxiety of waiting. I feel like I've just been waiting and waiting for the last two months. Someone please tell me that I'm not alone as I know that if these results are good I will still have a lot more waiting to do!

[Fr Pat]

       Hi. I think anxiety is quite normal, and waiting is VERY normal. Apart from the actual time needed for tests and results, some hospitals may choose to deliberately go slowly in order to give the potential donor plenty of time to think things over and perhaps back out. They may even NOT notify you of a test result, just to see if you will call to ask about it, or whether you will take the opportunity to just gracefully fade away without having to say "NO".
      Just to add another fact: the techniques for preserving a removed kidney in excellent condition for a longer time have much improved. So it is sometimes possible to donate the kidney in one place (Texas) and have it flown somewhere else (Maryland) for implantation, thus solving transportation problems for the donor. It can be advantagious for the donor to donate near where she lives, so that if she suffers complications from the donation (it DOES have risks) she will be right near to hospital where she donated for follow-up and corrections. Some donors who have traveled far in order to donate have later had problems at that hospital when problems arose.
     best wishes,
        Fr. Pat (donor, '02)

[sherri]

Welcome to the forum. I donated at Hopkins to my brother in November 2007. We are both doing well. I just had my labs drawn again for my 4 year check and my creatinine was .9 which is good for me at this point. My predonation was around .7-.8. I did have some microalbumin in my urine which was concerning to me, but I repeated it and it was normal. My nephrologist, at University of Maryland, will have me repeat one more time in about a month to make sure it is still ok.

There is someone on this forum who I connected with and has a similar story to yours. She is from Texas and came to Hopkins to donate to someone unrelated and previously unknown to her. I was able to be in touch with her through the process and visited with her when she came for her surgery. I think she has done well also. I will send this post to her so maybe she can be your buddy. I would also love to meet you in person when you donate so I can personally welcome you to the club.

My experience at Hopkins was mixed. It's a big place with lots of sick patients, many who other hospitals will not consider so I felt that personal attention was at a minimum. As a family donor, I felt that there were a lot of assumptions made on their part about my willingness to donate, my anxiety, the pressure I felt etc. I would have liked more emotional support before and after. The physical aspect of the surgery was fine. I had a surgeon who is no longer there, Miguel Tan. The donor surgeon, Dr. Dorry Segev is very well liked and has done many laprascopic nephrectomies. He works closely with Dr. Robert Montgomery who does most of the recipient surgeries.  Overall, I think that a lot of non related donors were very satisfied with their treatment. They have a great respect for non related donors, whom they refer to on the altruistic donor in their altruistic donor program. Follow up is 6 months, 12 months and 2 years post surgery. You can do your follow up in your own city and send results in. They encourage their patients to go back to their primary care doctors and don't do any follow up after 2 years unless there is a problem. Others people on this forum raved about their transplant hospitals, their nurse coordinators, the time they spent, that they even get phone calls after donation etc. I don't think that is the case at JHH. You may have to set up your own support system.

The anxiety and nervousness is very normal. You are about to have surgery. Not only is this surgery, this is a surgery that is elective, no physical benefit to you and maybe even a small risk to your life and future health. I remember emailing my coordinator and telling her about my anxiety and panic before the surgery and she answered back "I don't want you to be nervous". I think it is only normal. I did try to work on lowering my stress level by talking with a social worker, who I went to through my own insurance, and doing some deep breathing, exercise, journal writing etc to help cope with the surgery and all the emotional baggage that comes with family donation.

In terms of the testing, just take it one step at a time. The good part about this surgery is that it is elective and you can plan. You can also decline at any time during the process and decide that this isn't a good time. The doctors will just let the recipient know that something came up in the testing to disqualify you at the present time. You can always revisit it. You are young and may want to wait. If you do decide to go forward, you can plan the surgery around your schedule and your companion's schedule. You will need to have someone come with you and stay with you after surgery. There are lots of logistics to plan especially when you come from out of state. Your recipient may also be able to travel to your home state and you can so your surgery close to home. My brother lives in NY and came to Baltimore for his surgery. He stayed 10 days as an inpatient and then another week and a half as an outpatient, total 3 weeks and went home with a working kidney. He follows up with a nephrologist in NY who was recommended to him by Hopkins. So donors don't always have to be the ones to travel. In terms of follow up it is easier for the donor to be closer to their hospital. The recipient will always be able to find care as a renal patient.

Just some things to think about. Glad you came on board. Keep us posted.

All the best,

Sherri

[jstx]

Hello there and welcome to the group!  I am the one Sherri mentioned in her message.  I was wanting to donate to a friend but found out our blood types weren't compatible.  I'd already done so much research on living kidney donation, had talked to my personal dr who gave me the go ahead, and was excited about impacting someone's life in such a positive manner.  I was bummed when we didn't match so I decided to check the message board out here on LDO (there is a spot where people can post if they need a kidney or are willing to donate one).  I found a man in the Baltimore area needing a kidney with a blood type that is compatible to mine (AB).  I contacted him and the rest is history!

We had surgery in June 2011 and it went well for both of us (my creatinine at my 6 month blood work was .94 so I'm happy about that).  Hopkins treated us very well and I was extremely happy with my surgeon (Dr. Segev).  The waiting is very normal as is your anxiety!  I think we all feel that way.  I do agree with Fr. Pat in that I felt Hopkins gave me LOTS of time to think things through and they didn't rush the testing process at all.  I think they wanted me to be sure about this or have the opportunity to back out if I changed my mind.  My coordinator was very good at proactively contacting me with test results; the waiting came into place between tests as I waited to move to the next step.  I agree with Sherri that there wasn't a lot of personal attention from the transplant team.  I felt like my coordinator was cold and detached.  She was always very professional but I never really felt like she treated me as a patient.  I think she wanted to keep her distance because so many prospective donors back out.  I also think she didn't want to ever feel like she had persuaded me to donate.  For that, I'm grateful.  There was never any pressure on me.  But I think there must be a happy medium somewhere there and I'm not sure she found it.

I'd be happy to talk more with you and answer any questions you might have.  Please feel free to send me a personal message through this site-I'm in the Dallas area so depending on where you live, I'd be happy to meet up with you to talk in person as well.

You do have the opportunity to donate someplace more local for you.  Please keep that in mind.  For me, I felt Hopkins was one of the best in the nation and I really liked Dr. Segev.  That made all the difference for me.  I didn't want to tell my recipient that I preferred to have surgery locally and make him change his transplant team; to me, part of my offering to donate to him was also accepting his transplant center.  Most people might not agree with my reasoning but that is how I felt.  If I'd felt that his transplant center was less than excellent I would have thought differently.  But I trusted Hopkins (I'd already researched them when I was wanting to donate to my friend because that is where she wanted to go).  Everything pretty much fell into place for me which seemed like confirmation that this was meant to be.  But it fell into place VERY SLOWLY!  So, enjoy the time you have-after it is done, you'll feel like it whizzed by in a blur.  Get a journal and at the very least keep a timeline of the events and maybe jot down how you feel on particular days.  You don't have to feel like you have to write a novel each day.  Sherri had suggested a journal to me but I never felt like I had enough time to write things down in detail.  I wish I'd at least kept a good timeline and jotted a few sentences down to remind me how I was feeling along the way.  I'd love to have that now to look back on.

Good luck and please let me know if you'd like more information.

[cupid]

Alyfaye
I think what you're experiencing is totally normal. I had the last phase of all the testing done and waiting anxiously for the results which were available within a week. They did find a small heart issue which threw me into a tizzy. I followed up with a cardiologist in my area and they concluded that the EKG was misread. If nothing else, you will get one heck of a thorough check up! After my test results it only took the transplant team two weeks to approve me so hopefully you will hear soon. I am donating next month but not at JH
From start of the process to being approved took about 6 months for me. If you don't hear something soon, I would contact your transplant coordinator at JH
Good Luck and remember, all living donors have felt as you do now at one point. Totally normal.

[lawphi]

I donated at JH a few weeks after JSTX and had a great experience.  Looking back, I had three years to over analyze donating.  I recommend taking a lot of time to read and think. 

 I was able to donate after my husband recovered and Dr. Segev was out of town the week I wanted to donate.  I had Dr. Dagher and really liked him as well.  Looking back, I pretty much had an md check in every 8 hours. I also had email access to my coordinator.

I was incredibly lucky that my pre donation anxiety was the worst part.  It was not fun, but I have had flus that were worst.  My creatinine levels are similar to Sherri's. I did not experience any lethargy after I left the hospital. 

I stayed at the Admiral Fells Inn in fells point to recover.  The inn has a shuttle to and from the hospital.   I recommend staying away from JH to give you space to walk around and easy access to food.  You can apply for a national grant for your lodging or airfare.

Also, JH posted a Facebook message for prior donors to contact the hospital for a research study. 

[jstx]

Here's the info that Lawphi mentioned for all you JH donors:

At Johns Hopkins, we are conducting a research study of every single person who has donated a kidney at our hospital (East Baltimore and Bayview)in the last 30 years, in the hopes of helping the entire transplant community better understand the long-term effects of donating a kidney. We would like to invite all of our living donors to contact us as part of this critically important national research study. If you are a recipient, please encourage your donor to get in touch with our study team.
 
For more information, call us at 410-775-6555 or e-mail us at jhkidneydonor@jhmi.edu.

Wonder if I should actually post it in a separate thread as well....I think I will.

I actually stayed very close to Hopkins at McElderry House.  We rented a 2 bed, 1 bath townhouse for my stay.  It was really nice to be that close.  My mom and sister could walk back and forth several times a day to visit me which was good because they could leave easily if I got tired.  But Lawphi is right that it is hard to go for food and walk much that close to the hospital.  It is in a bad area of town, but during the day we were fine.  At night we'd get the Hopkins security to walk back and forth with us (which they are happy to do).  It was hard to go for food though because there isn't much there and the hospital food isn't open as often as you'd think (other than the fast food places which can get old).  The good thing was that with a townhouse we went grocery shopping and could just eat at home when we wanted since we had a full kitchen.  You have lots of options so I'd suggest that if you get to the point where you go in for an all day evaluation, take a day or so to look around and see what you think about your options.  My all day eval was a blur and I wish I'd stayed a day more so that I could look around.

I would say your testing process at Hopkins (esp with wanting to donate to a stranger) will be at least 6 months.  Mine was closer to 9 months because I had to wait for a 24 hour blood pressure monitor for over a month.  You're just at the beginning so you still have quite a bit of time to do your research and decide if you really want to do this.  There is no pressure to rush into it so take your time and enjoy the process.

[alyfaye]

Wow, thank you all so much for taking the time to share your stories and answer my questions! I'm feeling a little less anxious now as a few days have passed and I've had to return to my every day life. I'm still very ready to get that phone call from my coordinator, though. As for the decision to have my surgery at Hopkins rather than locally, I have been in contact with them from day one and feel very comfortable with the decision to have my surgery in Baltimore. I recently finished college and work as a freelance photographer so I am able to work around my surgery and recovery time. I feel that now is the best time to do this. My friends are taking this time to travel to Europe and I am using it to donate my kidney. I think I am more excited about this than they are about their trip

It seems like the average time that people stay in the hospital is three days. Is that about right? Do you go in the day before or on the morning of surgery? I am trying to get an idea of what to expect schedule wise when I get there. I spoke to one person who was in the hospital for five days after surgery simply because she hadn't passed enough gas. She had the laparoscopic procedure. Other people seem to go home after only staying one day post surgery. I know that some hospitals vary in their procedure but hearing others' experiences really does help calm my nerves!

Also, I am vegan and have celiac disease (gluten intolerance) am a little worried about my food options in the hospital. Has anyone else had food restrictions in the hospital? What kinds of foods did you want to eat post surgery? Did you just snack or were you back to eating meals once home?

[Fr Pat]

Dear "Alyfaye",
     Some thoughts:
--- Since you are a fotographer it might be of interest to keep a "foto-log" of your donation experience. Many donors find it helpful to keep a written journal of their thoughts and experiences before and after the surgery (a small portable recorder can be handy to have in the hospital to record your thoughts after surgery when you may not feel up to writing anything.) Some donors have asked the surgery team to take some pictures or video during surgery, or to allow someone else to scrub up and be there to take pictures. A story with fotos might be very helpful afterwards to help potential donors.
--- Let the hospital know clearly ahead of time what your food restrictions are, so that they can get it on their records and make plans. After surgery most donors are more nibbling than eating, and it can be very handy to have in your room some snacks/drinks that you think you might like.
--- Some hospitals admit the donor the night before, while others admit them the morning of surgery. You should be able to find out in advance. How long you will stay varies according to your recovery, as well as the hospital's policy. Hospitals are, unfortunately, the breeding ground for all the nasty microbes that have built up resistance to all the hospital's antibiotics, so it's good to get out fast if possible. Getting out fast but then staying at a near-by hotel for a couple of days can be a nice option if affordable, so as to rest and at the same time be nearby in case medical complications arise.
    best wishes,
       Fr. Pat

[alyfaye]

Sherri,

I would also love to meet you when I travel to Baltimore for the transplant. I am lucky enough to have friends and family who are supportive and ask a lot of questions, which gives me a good way to talk out my feelings about this whole process. However, the biggest help that I have received has come from the little communication that I have had with other donors. It would be wonderful to meet you and share our experiences in person.

jstx,

I feel very similarly to how you did in regards to having the surgery at Johns Hopkins. Additionally, I was born in Baltimore so I have a strong fondness for the city that I can't really describe. The only other time I have ever been hospitalized was at Johns Hopkins when I was a toddler and it would be nice to visit Maryland again and see old family friends. It would be a win win for me and my recipient. I will send you a private message here. I would love to be in contact with you as I have so many questions going through mind mind every day.

[sherri]

Alyfaye,

Keep me posted as you progress through your transplant journey. Would love to meet you in person. In terms of planning, my surgery was on a Monday (and I think they still do most of them on Mondays or Tuesdays but you can check with your coordinator) so you might want to get in on Sat of Sunday morning to have some time to acclimate. There are options to stay close to the campus like where jstx stayed or you there are other options where you can get a reduced rate at some of the hotels. Depending on the arrangement with your recipient, they can also pay for your lodging or lost wages and that is legal. These are great questions to ask your coordinator. Who is your coordinator? I dealt with Kathy Dane and Nikki Lawson. You'll meet Sharon Kreitzer during your stay. she is the donor follow up coordinator. Dr. David Edwin is the psychologist who evaluates all the donors (you can send him my regards). I had surgery on Monday and left the hospital Friday morning. I was ready by Thursday afternoon physically. In terms of food you can request most types of diets but most donors don't feel up to eating full meals. A lot of carbon dioxide is used during laparascopic surgery to inflate the abdomen so they can see and get their instruments in there, so you feel very bloated post surgery. Also takes time for your bowels to begin working again. You will be given a stool softener to help in that department. Dr. Segev puts his donor patients in the Marburg Pavilion (ask for it). It is the VIP suites so you can get any type of diet you need there. Your companion will also be able to bring things that you like. I would arrange to stay for at least 5-7 days post op and then fly home if all goes well. You just have to be flexible in case of any complications or a need to stay longer. Took me about 3 weeks to get my appetite back. It is important to stay well hydrated so drink plenty of fluids in the hospital and post discharge.

Good luck as you move along. And keep asking questions.

All the best,

Sherri