Just starting the process...

[Dirty Rocker]

Hello, Everyone!

I've been watching a very good friend of mine go through dialysis for 2+ years now. He had a matched donor that backed out (no hard feelings from anyone), so I went and donated blood to find out my type, and I'm a match blood match. I have since done tons of research, and after careful consideration and a lot of talking with my family, I have decided to be screened to be his donor, with the full support of my family and friends.

I have a full physical, EKG, chest xrays, and female exam scheduled with my doctor to get most of that out of the way and make sure I am healthy enough to donate (pretty sure I am).

I left a message for his transplant coordinator, and my call was returned an hour later. The coordinator referred me to the donor coordinator, who has yet to return my call (I left a message yesterday morning). Is this common? I mean, after all this time on dialysis and issues with a prior donor, I would think the quicker we get the testing done, the better... I guess what I'm asking is, being the impatient person that I am, should I prepare myself to be continuously frustrated during the process? Has anyone else dealt with this? I realize the coordinator has a lot of duties, but not returning my call in a reasonably timely fashion sets a bad precedent... Is there something I don't know about? Does the donor coordinator have to talk with the transplant team before screening? There is a lot of information out there on the medical processes, but less to be found about the admin processes...

I'm just really anxious to get this started. If I can help, I want to, and as soon as possible. I'm tired of seeing my friend in pain, dang it!

Maybe I just need to vent... sure would be nice to get a call back though. Any input is greatly appreciated!

[sherri]

The answer to your question is yes... there is a lot of waiting. And from what I can tell by reading posts on this board it is very common for nursing coordinators not to return calls promptly. Many donors, myself included can get very frustrated. Here you are, thinking that you are doing this monumental, self sacrificing, "heroic" (their description not mine) act and you can't even get a return phone call. The financial donors to the hospital get calls back, why not the organ donors? Well, there are many many sick patients, some even unstable ones which take up a lot of the team's time. Not to say that your friend is not suffering but if he/she is on dialysis and stable then the surgery is not imminent. Transplant surgery is an elective procedure and it will be planned that way. There are a lot of tests, more blood to be drawn, probably tests the recipient may need to do etc and then finding a mutually convenient time for you and your recipient. So it will take more time than you anticipated. Some places also like to give the donors plenty of time to reconsider, especially non related donors so they may take extra time in slowing things down.

Glad to hear you have done your research. Keep reading. You can read the experiences section on here, get some donor buddies from here or the transplant hospital and make sure you are thinking about the logistics of donating, a good time for you and your family so they can help care for you during your recuperation, time off from work or other responsibilities etc.

Let us know how things go and how your transplant journey unfolds. Where are you donating? Maybe someone on the board has been there and can give you some first hand experience.

Best of luck,

Sherri

[Dirty Rocker]

Thanks, Sherri! I'll start preparing myself to 'hurry up and wait'. Excellent point on the financial donors. 

The transplant will be at Baylor in DFW, if anyone has any experience with them, I'd love to hear it.

[treehugger]

I truly believe that the best thing a potential donor can do for themselves is to learn to enjoy the process. I am not being flippant at all; I have been through it and I am not considered a patient person in general. But I started on the journey assuming each step would take a long time, and there would be lots of waiting between steps, and I feel that attitude, more than anything else, helped me survive the whole thing with my sanity intact. I made good use of the time to research and learn and ask questions and think. Time, you will have plenty of it!

Best wishes to you on your journey,

Kara

[jstx]

I don't have experience with Baylor but am in the DFW area if you need someone local to talk with, ask questions to, or just vent. I traveled to Baltimore to donate but requested a referral to a local transplant surgeon in case I had problems after returning home. My surgeon recommended a dr at Baylor, so I have faith in their abilities. Thankfully, I never needed the referral.

The process is sometimes long & drawn out. Took me about 9 months to get through, but I'd guess that's quite a bit longer than most. So your motto to hurry up & wait is probably a good one.  Please message me if you'd like to chat more.

Good luck! You're doing a great thing!!

[mintx]

I am in TX too. My transplant, once we find a match for a paired exchange , will be in Detroit.  My local testing and follow up will be in Houston. Good Luck!

[Fr Pat]

Dear "Rocker",
     Hi. Yes, you may have to be very patient. It appears that some hospitals deliberately slow down the process in order to give potential donors pleanty of time to re-consider and back out. A deliberate delay can also give the potential donor a graceful way to back out without having to admit it. Someone who is having second thoughts about donating can say (honestly) "Well, I TRIED to donate but THEY would not even return my calls promptly, so I gave up." So, keep plugging away.
     You might find it helpful to keep a detailed journal, both about your personal thoughts/feeelings and about all the details of the process. Record the times of all your calls, and copies of your letters and e-mails. If you think a delay is too long, call or write again politely but firmly stating that you are still interested. At each step ask them WHEN you can expect a response, and keep them to it.
     Best wishes.
       Fr. Pat

[SWB]

Dirty Rocker,

Look under the Donor Buddy links on this website and take advantage of them.  I was able to contact a gentlemen who was a living donor and from Texas.  It is very helplful in getting questions answered.  And, of course the open forum is an ideal place as well.  The pool of knowledge from the folks who post was instrumental for me.

I found that the response back from the transplant coordinators is very dependent upon the facility and the coordinator.  My experience was with an awesome facility.  During the transplant process I actualy swapped transplant coordinators 3 times.  The last swap was right before the surgery and I don't think an ideal time for the change.  However, all 3 of my coordinators were responsive.  My receipent though has experienced the complete opposite with his coordinator.  From my perspective I would rather he get the faster responsiveness than I did.  From the multiple posts though the lack of responsiveness to donors and receipents is an ongoing issue across centers.

Patience is something though to be prepared for.  Many of us are eager to donate as quickly as possible given the health issues of the receipent and so we can move on with our lives.  However, I also think that many of the centers have you wait so that it gives you time to consider what you are doing and to ensure that you are prepared to handle the multiple delays which may surface during the process.  During the journey you may find yourself in a lot of situations waiting on things that are out of your control.  It is imperitive that you are able to handle those situations and not let it stress you out.  As a result, I think that the transplant committees really try to drive that home for you during the screening and interviews.

Best wishes for your potential donation process!!!

-Scott

[Dirty Rocker]

 

Thanks for all the kind words! A bit of an update:

It seems the previous donor (who backed out for unknown reasons) was still on file, so the coordinator needed to find out what was going on there before getting me started. She has since been very timely on return phone calls. 

We did the HLA and crossmatch, with a compatible result.

I spent 2 days at Baylor to get all of my testing done-- lab work, ekg, xrays, TB, CT, Social Work, etc. -- all with good results. Had a slight scare when my PCP found an arrythmia on my EKG done at his office, but I have since seen the cardiologist that works with the transplant team, had an echo done, and everything looks great. It seems that no one has any reservations about moving forward.

I'm really, really excited. During my visit with my social worker, I also found out about a financial assistance program for living donors. The program was started in Dec 2012, so probably not widely known. When I can get home and look at the paperwork, I'll be sure to share the info here.

At this point, aside from my excitement, I am starting to get a little nervous. I've done my homework, and I realize the procedure (laproscopic) is pretty low risk. I know it's just anxiety because it's becoming real now. It's been pretty easy to remain positive, instead of thinking about all the things that could go wrong. Probably doesn't hurt that I've had surgery before, so I kind of know what to expect.

The next committee meeting is on March 29th. I have a lot of confidence in this transplant program just due to the quality of care I have recieved so far. Hopefully the committee will give their stamp of approval, and we will schedule surgery for about 30 days from then, sooner if possible. (Due to the type of work I do, I need to be back at work for the summer season, if at all possible)

I'm interested in finding some good information on hernia prevention pre op, and post op. Should I be doing core strengthening excercises until surgery? What kind of movements need to be restricted-- just lifting, or is bending, crouching, reaching, etc something I need to be careful with? My job is pretty dynamic, and I know I will be provided someone to lift for me when I get back, but I just want to make sure I'm in the best possible shape for recovery. Any insight would be greatly appreciated!

I'll keep you guys posted!!

[Fr Pat]

Dear "Rocker" (excuse me if I leave out the "Dirty"),
     As far as I know or have read, it is just lifting that is greatly restricted in the first weeks after surgery, to prevent hernia at the incision site(s) until everything has healed strongly. My surgeon actually suggested (a day after surgery, but the big 10-inch open-cut method) that I do gentle bending and stretching exercises to help the healing and to help get all the internal stuff re-setttled into place. Walking is also MUCH recommended after the surgery, although fatigue can reduce the distances involved.
     I have heard it said that getting the core muscles and abs in good shape make make healing easier, but I'm not sure if this has been proven or not. If you smoke it is very good to stop way before the surgery, to make sure that your lungs are in good shape. The breathing tube inserted during surgery, plus all the germs that float around hospitals, plus being on your back in bed more than usual, can raise the riskof post-op pneumonia, which is a risk after any surgery.
     When you return to work you may find that aftigue is a problem. Many donors find the need for naps for a while, and some employers give some lee-way on that. You also MIGHT find that your brain is a bit sluggish for a while, until all the anesthesia and pain meds wash out of the system, so keep that into account on returning to work as well.
          best wishes,
              Fr. Pat

[Dirty Rocker]

Thanks, Fr Pat!

I had reconstructive surgery done on my face some years back after an accident, and I remember I was definitely groggy for a few days, but I think it wore off pretty quickly.

I quit smoking two weeks ago, but had a bit of a relapse. Monday is my quit day, no more excuses.

I plan to focus on getting in the best shape possible (I'm already in pretty good shape, but could always be better!)

Please don't take offense from the 'dirty' part-- it's my job. I'm a mechanic.

[Orchidlady]

Welcome and good luck on your journey!

Being in shape definitely helps with recovery. I was fortunate to be working with a trainer at the time ( and have continued to work with him now for over 5 years) who had a lot of experience working with pre-surgery and post-surgery clients. Prior to surgery, he did concentrate a lot on core and functional movements. I didn't realize how valuable this was until after the surgery.  After the surgery, your abdominal area is pretty much shot, so it is useless for doing things you normally take for granted - getting up and out of a chair, rolling out of bed, getting on and off the toilet, etc.  The rest of your body has to take the lead to get these accomplished. I can't tell you how many times I thanked him as I could now see the benefits of the work we did!

Just another interesting point - I had also asked the surgeon at our visit about being in shape, benefits, etc. He laughed and said that he had operated on some of the more fitter, bodybuilder types and they actually were sorer than most because you had to cut through so much muscle to get to the kidney. Not that I would ever have to worry about being designated as being THAT fit!

Keep us posted.

[Dirty Rocker]

Thanks for the info, OrchidLady!

I have to ask - how is your recipient doing these days? Anything else you'd like to share? I love hearing different experiences - helps me keep my eyes open through this whole process.

[Fr Pat]

     In the "living donation in the news" section of this site, about 9 postings down, there is a study that really helps motivate potential donors to quit: the survival of the transplanted kidney from donors who smoke is statistically less than that of kidneys from non-smokers.
   Fr. Pat

[mkew]

Hey Rocker, congrats on your donation process! I went through the evaluation process and I'm not a match with my friend who is my designated recipient so we are waiting for a paired match or a chain.

Especially since you recently quit smoking (been there many times, smoke-free for three years now), I highly recommend you look into yoga both for learning about breathwork (very healing for pain management, blood oxygenation, stress reduction, and maybe ESPECIALLY help with quitting smoking), and also to help get in physical shape before surgery.

Even if you've never done anything like yoga before, it has many many benefits. Find a studio that is not too crunchy-granola and is welcoming to people of all sizes and experience levels. Feel free to message me at mamamk@gmail.com. I live in Austin and can certainly find people who know about yoga in the Dallas area.

My surgery will be in Los Angeles. The donor assistance program is providing all the funds we need for airfare, lodging, food and car rental for two weeks for me and my husband. It's a WONDERFUL program and should get more publicity. You need to apply in advance, so be sure to discuss it with your coordinator ASAP.

I agree with all the others, it is very much a "hurry up and wait" process. It is necessary to be patient and flexible. It's a wonderful thing you're doing. I'm not as good a resource as others because my surgery hasn't happened yet but feel free to drop me a line if you need anything.