I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Kathymac2 on August 20, 2019, 04:04:26 PM
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After nearly seven years on the transplant list, I got the call I've been waiting for. Since I hardly slept last night because I do automated PD, I had just settled down for a nap late this morning when the phone rang (naturally). It was the transplant coordinator. My transplant hospital has been allocated a kidney from a living donor and I am the primary match. The coordinator thinks it may be an altruistic donor, mid-sixties (I am 69). I am beyond thrilled to think I may be getting a living donor transplant. No one in my family was able to donate due to having their own health problems.
I will meet with the transplant surgeon and the transplant nephrologist on Monday and have pre-op lab work and chest xray done. If everything checks out for me and for the donor, surgery is tentatively scheduled for September 4.
Please keep me in your thoughts these next couple of weeks. I will post as I am able.
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Congratulations. I hope it pans out.
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Wow fantastic news Kathy!!!!
:yahoo; You are in our thoughts, positive and luck vibes on their way.
Lots of love, Cas
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Kathy, wishing you and your donor (how wonderful to just walk in to donate!) all the best as you complete your testing.
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Thank you all for the good wishes.
Kathy
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That's great news. I guess patience pays off. I hope all goes smoothly.
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Thank you k&s for your kind words.
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I've been hesitant to post again (don't want to jinx my good luck) but it seems we are a go for transplant surgery on September 4. I met with the transplant nephrologist, transplant coordinator and surgeons and everything checked out. Spoke with the pre-admissions office and got everything cleared and ready to go.
Now I just have to stay "healthy" for a few more days. This is really nerve wracking. It's been great to be able to get things in order, but the waiting is very hard.
Thank you to my donor, whoever you are. This is a wonderful gift. I will do my best to pay it forward.
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Kathy, you are in my thoughts! Low-key cheering for Sept 4!
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Thanks Lorinn. I appreciate your support.
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I hope everything goes swimmingly for you on 4 Sept. I know the wait is hard, but the upside is that you have some time to plan ahead.
Good luck to you!
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Thank you Moosemom for your reply. I have used you as my example of what to aspire to since you had a pre-emptive transplant. I tried like heck to avoid dialysis, but had to finally go with it in February of this year.
I know how lucky I am to only have to endure six months of dialysis when so many on this site have done years (and years). It certainly gave me an appreciation for the strength required to face dialysis day in and day out with no end in sight. Now I am blessed to be able to say "only five more nights of dialysis" .
Kathy
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There is only so much you can do to avoid dialysis. Sheer luck plays a big part in what happens in the end. I am glad that good luck has found you and has given you this chance at a transplant and a more normal life. Many people have to use dialysis as a "bridge" to transplant, and as difficult as dialysis can be, I'm glad it is available at all!
I'm looking forward to more good news from you after 4 September!
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Hello all. I am happy to report that I came home from the hospital on post op day 4 after living donor surgery (altruistic donor exchange chain) and things are going well. My kidney started working immediately and my creatinine has steadily fallen. Today it is at 1.53 which is getting close to the normal range.
I am taking my medications as prescribed and will continue to do so as long as I live. No nausea or other problems with the meds after day 1. Let's just say it's not fun to be vomiting with a new abdominal incision.
I was up in the bedside chair and then shuffling around the hospital unit the day after surgery; IV lines, telemetry, oxygen, Foley urine bag, abdominal drain and all. Quite the sight.
I was worried about pain when I got my abdominal drain pulled out, but I'm happy to report the doctor was right. It felt weird to get it pulled out, but it didn't hurt. My PD tube was removed during surgery.
I hobbled in for my first clinic visit today and the doctor said all is going smoothly. Some pain, but it is controlled pretty well with the pain meds i was given. I am envious of the people who have this surgery and experience little pain, taking only Tylenol to cope. Everyone experiences pain differently and I guess I am more on the pain sensitive side of the spectrum.
Thank God it seems the worst is behind me. Thank you all for your encouragement these past few years. I am so, so happy to not be hooking up to my dialysis machine tonight.
Kathy
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Congratulations
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Fantastic news Kathy!!!!
Lots of love, love and strength, Cas
:cheer:
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I've NOT had a very good day today, but upon reading your post about your transplant, well, THIS is certainly made my day! I can now go to bed with something to smile about!
I am so thrilled for you and am glad to see that you are up and about.
You're right about how everyone experiences pain differently. The key is to take your pain meds at regular intervals so as to curb pain before it gets hold of you.
Congratulations, and I'm looking forward to hearing much more from you as your recovery continues!
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Congratulations!
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:bestwishes; Here's wishing you a speedy recovery, good health and a long and lasting relationship with your new kidney! :wine;
PT
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I send you my good-luck-wishes and I am so happy, that your transplant came along after such a long waiting time of nearly seven years! Please take it very easy during the first year and may your new kidney stay with you for many, many years to come and I send you all my best wishes from Kristina. :grouphug;
P.S. After my transplant and after coming (finally) out of hospital, I still always wear a breathing-protection face-mask in public, to make sure I can stay as protected as is possible and it seems to help, because it has gone well so far. Of course, some people are staring at me and I can sense that they feel a little uncomfortable about this and so I always explain to them that it is "only" a precaution, because of my kidney transplant and then they relax and wish me good luck.
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Thank you all for the good wishes. This website and the people who comprise it have been a great source of support to me over the past few years as I started peritoneal dialysis and now as I start my transplant journey.
Moosemom - I'm glad I brought a bright note to your day. I will continue to post updates as I am able.
Kristina - I'm so glad to see you posting again. It sounded like you had a rough go after your transplant. It seems that things have settled a bit for you. I hope you are doing well. Thank you for the tip about using face masks in public. I have a goodly supply of masks at home since I used them for my PD. I plan to lay low around home for a while, but when I have to go to crowded places, like the outpatient clinic, I will definitely wear a mask. I can't afford to get sick! Especially with flu season coming up here in the US.
Kathy
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Kathy, I am so happy to see your update! And I am so happy that you are off the machine & taking excellent care of yourself!
And Kristina, it's nice to see your update as well!
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Thank you Lorinn for your ongoing support. We PKDers have to stick together.
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Kristina - I'm so glad to see you posting again. It sounded like you had a rough go after your transplant. It seems that things have settled a bit for you. I hope you are doing well. Thank you for the tip about using face masks in public. I have a goodly supply of masks at home since I used them for my PD. I plan to lay low around home for a while, but when I have to go to crowded places, like the outpatient clinic, I will definitely wear a mask. I can't afford to get sick! Especially with flu season coming up here in the US.
Kathy
Hello Kathy and I send you again my good luck wishes for you and your new kidney!
And many thanks for asking about my transplant, that is very kind of you.
It is true, I did have a very rough ride and it started instantly after my transplant-operation: I suffered TWO very nasty urinary-tract-infections straight after the transplant-operation (I woke up and had to take antibiotics straight away) and after finishing the first lot of antibiotics, I had to instantly start with the second lot. Of course, these infections were very upsetting and lowered the function of my new kidney from the start and so I did not have much going for me, but I decided to try very hard and "mollycoddle" my new kidney into function by drinking three liters of water every day to gently "inspire" it to get busy and "go to work" and, together with my no-spice vegetarian food, it was finally managed to get the function a tiny bit better and now I feel, there might be a chance to keep my new kidney.
One "thing" I have learnt through this ordeal is the fact, that a transplant is "only" a more refined treatment in ESRF. It is not yet the absolute answer, but - for the time being at least - it creates a chance to experience a better and, with a bit of luck, a chance for a longer life.
I send you my best wishes and good luck from Kristina. :grouphug;
P.S. And, despite my ordeal, I am quite lucky, because a lady I met during our same-time dialysis-sessions, also had her transplant, but unfortunately she lost it after six weeks of struggling and now she is back to dialysis again :'(.
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One week exactly since my transplant. I would like to post today about gratitude for kindnesses shown to me, both big and small.
First, I will be forever grateful to the anonymous donor who stepped up and donated a kidney to whoever needed it. This courageous person started an exchange chain of mismatched pairs who were able to get transplants.
I will also be forever grateful to my actual living donor. After all of the possible matches were made in the exchange chain, there was one final kidney that needed to be placed and I was the lucky recipient. This living donor could have backed out at any time. His/her loved one had likely already received their kidney. The donor followed through on their commitment and donated to an unknown recipient (me). Courage and commitment.
My medical/nursing team was great. I'd like to shout out to the UCLA operating room nurses who made a special effort to play music I liked (Eagles) and who found a special non-allergic tape for my super sensitive skin.
All of the nursing staff was very competent. When I was most vulnerable, I was well cared for. My room was kept as quiet as possible. The temperature was always comfortable and there was good air flow. Can't ask for more.
The nursing assistants (Care Partners) were mostly great. These are the staff who keep you as clean and comfortable as possible under difficult circumstances. I kept an eagle eye out for how my catheter and various tubes were handled and overall was very impressed.
Even the staff who brought food trays and emptied the trash and kept the room clean were gracious and respectful. Thank you to the college student volunteers (Victor and Kristy) who walked with me around the unit. You were most accommodating.
I am very grateful for my good fortune. I only wish all transplants could go as smoothly as mine. All recent transplant patients are in my thoughts this morning. I wish for you relief from pain and discomfort and that your kidney starts working well.
Kathy
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What a wonderful post!
Post transplant is a very emotional time. You've expressed yours very well.
I am so pleased that your transplant experience has been as good as possible. It is a momentous affair, literally life changing.
I suspect that everyone working in the transplant unit is constantly joyous upon seeing so many lives transformed every day.
I hope you continue to do well and that you have that kidney for many, many years to come!
Keep us posted!
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Kathy, your update inspires me.