Recently, a friend of mine decided to donate a kidney to save a life. When she told me what she was doing, I was so confused. I suppose I never thought I would ever have to hear a friend of mine say something like that, let alone such a young one. I wouldn’t say I was the most supportive at first, mostly becasue I just didn’t want anything to happen to her, but after hearing how she felt about it, I understood where she was coming from and how important it was to her. I personally couldn’t imagine making that choice, and I will always look up to her for doing it.
I was very curious as to what it would be like, how hard it would be, how long the recovery was and a few other things, so I told her if she ever decided she may want to record it, I would love to write about it. And she did, she recorded a journal of her experiences as they came, and was kind enough to send it to me to put on this blog for anyone who would like some information.
Alrighty, this is all her personal journal of her experience, all in her words as well so… here we go…
DISCLAIMER: There are some graphic photos inserted at certain points so just be prepared.
Hello reader! This short blog is a real and raw blog of my kidney donation journey. I wrote most things as they happened and as I felt them. The words are honest and not sparing. I am choosing to share this blog for reasons stated below for donors, receivers, and even just the curious. Some parts were edited or possibly removed at a later time due to not making sense because of pain or the drugs I was on. To end this intro I want to make absolutely clear my feelings at the start of this blog came to pass completely, and while it was not a fun journey, I would do it again to save her life. It only took six weeks of discomfort in my life to significantly improve and possibly save another life, it was worth it!
Before Surgery.
April 29, 2020
It is Wednesday, two days before surgery. I am feeling rather selfish right now. I really do not want to do the surgery. I do not want to be “laid up” for weeks or months, deal with the pain, and have the scars. I am told the scars will heal on me very nicely and they will barely be seen, but for full healing, it could take 2 to 3 years. Wishing I was not in this place right now, I have read more bad than good for donors and that does not help. From what I have read donors are pretty much ignored after they leave the hospital and that makes me uncomfortable. As much as I do not want to do the surgery right now, I feel I have to even though I will suffer for it and get nothing from it. It is saving a life, but it really does not feel that way to me right now, I am hoping after surgery I will feel like it is worth it. I just want it to be done with so I do not have to feel like this anymore.
Another thing I am very scared of, is gaining significant weight. I am currently about 40lbs overweight and I have read in many verified sources that if you are overweight you will probably gain a significant amount of weight. It is so hard for me to lose weight already, I just want to cry thinking about it. But, I cannot let anyone know this is how I feel about it.
I also feel I am going to be forgotten in all this. That the receiver is going to get all the compassion and if I do not feel up for something or I am in too much pain they will just say get over it and that I will be fine. I am not looking for attention, if I was I would have posted about it or told a bunch of people which I did not. I just hope I am understood and not blown off, and left to do this completely alone. I am just feeling very down and sad right now and have been for a few days, I just hope this passes quickly.
April 30, 2020
It is about 10:30am the day before surgery, I have a few anxiety riddled moments but have begrudgingly accepted this is happening as badly as I do not want to deal with it. I have been trying to distract myself the best I can and I am becoming rather hungry. I am not allowed to eat anything today so we will see how this goes.
7:40 PM, feeling a bit better, less sad, but distracting myself more. I get quick pangs of anxiety but it quickly passes. I did take an anxiety pill (which was prescribed to me). The hunger is bearable at the moment. I do not feel overjoyed, it just kind of feels like I have to go to work tomorrow and I really do not want to, but I am doing everything in my power not to think about the recovery.
Day of surgery.
May 1, 2020
4:00 AM Day of surgery. I am feeling more nauseous than anything. I am assuming it is a mix between no food in over 24 hours, anxiety, and having to chug a full sugar powerade this morning. Still am not looking forward to this and think it will hit me once I walk into the hospital much harder. Feeling nervous, I took an anxiety pill, I was told I was allowed, but it has not kicked in yet and I hope it lasts. I feel very uncomfortable about this whole thing. I am going to do it no matter what, but I do not feel this awesome joy or excitement I read others talking about. It is almost time to leave soon, so I do not know if I will be able to update again today. So for right now, nauseous and very uncomfortable is where I am.
10:30 PM Surgery went well, and finally over. Did not feel too bad about it this morning. The pain is bearable but my shoulder hurts pretty good, but they say that’s really the gas they pumped me up with. I tried to stand today but I got extremely nauseous. If I can’t stand and walk tomorrow I will not be able to go home. They would not let me see my receiver today. I did see her in recovery but they would not let me see her in her room. They say both surgeries went really well and I was the more complicated case because I had two veins going to my kidney and my skin was tighter? My shoulder is hurting worse than my incision and my scar is way higher than I thought it would be but it is what it is and I’m gonna try to get some rest.
The first week.
May 2, 2020
It is the day after the kidney transplant. I have a headache and I’m very uncomfortable. The pain is pretty bearable. Also tried to stand up yesterday but it did not go well. I ate today. I feel okay but I have to urinate and be able to walk before I can go home. I looked at the markings only once. It is much higher than I thought and they look pretty gruesome but they’re still fresh and I still haven’t talked to my doctors yet, hopefully, I get to go home today.
It is later in the day and I am home. Believe it or not, I was actually more comfortable at the hospital. The ride was very painful and my shoulders are hurting so badly. They hurt worse than the incision. I found out I actually had a co-pay, I was told I would not have to pay a cent. It was only $11 but still a bad surprise. I have a lot of mucus but I am way too scared to cough. I am in actual pain now in my shoulders, abdominal area, and back, but it is bearable, barely.
I did get to see my receiver before I left. We saw her cut together for the first time and I saw her heart break, I felt so bad it was very large. Hopefully, I helped calm her down before she fully cried since crying makes it a million times worse. I am going to try and lay down now so I don’t feel, may or may not update later today.
It is 11:43 PM, I just went to urinate again. Thank the heavens the people taking care of me bought me a raised toilet seat. That thing is seriously a lifesaver. Also, if you do this and have a low bed I recommend raising it, they have bed risers at Wal-Mart for like $10. My shoulders are really hurting and my stomach is hurting a bit, sorer than actual pain. Heat on the shoulders also helps a lot. I was told no heat or ice on my stomach. I also recommend having a lot of pillows if your bed does not rise because laying flat just is not going to go well. Even though my significant other is in a chair next to me I really miss cuddling him, and I miss my dog at my feet.
I only get anxiety when I stand too long and feel like I am going to blackout or I cough. Coughing is horribly painful. I have been using Alexa announcements to ask for things too since my voice is not strong yet so that’s helpful. I also have a loud bell, but with my headache, I am avoiding that. The pain is starting to settle from getting up so I may try more sleep.
May 3, 2020
I just woke up a bit ago. Today is the worst, painful, vertigo, and nausea. I kept gagging and I was almost throwing up, it was unbelievably painful to move. At this particular moment, I just want to scream why me. why did I do this, but I saved a life so in the end, it will be worth it. I hope this is the worst day and it gets better from here. Today is so bad everything hurts and the medication is making me very nauseous and they didn’t give me anything for nausea. They want me to use the bathroom using laxatives but I’m not taking them yet until I can function a little bit better. Think I am going to go to sleep now.
May 4, 2020
Today was a little better. Did not take anymore meds. I took a shower while sitting on a step stool even though I really did not want to, but after I am really glad I did, I feel a lot better. My pup does not understand and does not want to come near me 🙁 . Talked to my receiver and her fiancee today, she is hurting, but moving. Gave her fiancee a few tips like the raised toilet seat and extra pillows.
I have made it to the lounge chair in the living room and I took two more days off work. I was supposed to go back tomorrow and I decided heck no. Ate a little bit but not much, I think I am just scared to go to the bathroom for a movement. Otherwise I am good except for the shoulder pain.
It is 7:40 PM, today was a good day. Definitely should have stayed at the hospital until at least Sunday, biggest regret there. Mom came over today with some bad news about her health but I am trying not to dwell on it right now. I need to heal so I can take care of her. I was up a lot longer today and was in the living room most of the day.
Also, found out they will give you nausea medication to take home, but you have to ask. They never told me that, rather upset as that would have helped yesterday. I hope I can go outside tonight and see Hailey’s comet. Again the raised toilet seat is a good send.
May 5, 2020
Been feeling sickly all day, probably due to all the laxatives. I still have not successfully gone yet. I used a chair vibrator on my back and it helped the back spasms. Had two episodes today when the pain was too much and my vision started going. Feeling sore and rundown now. I have my first follow-up tomorrow, hopefully that goes well.
Week two.
May 11, 2020
It is 12:20 in the morning. The day was a good day. I took my first shower standing the whole time and got rid of the raised toilet seat. I also accomplished stairs, twice. Going down was worse than going up, but I did it. My incision sites are like a dull stabbing feeling, but my lower back is starting to hurt pretty good. Heating pad in action though. The glue is still on and it still looks bad, worse than my receivers actually. I am hoping it is just like that due to the blood being mixed with the glue.
I only took half a pain pill this morning and afternoon, but a full one at night which could explain the pain. The pain is more of a soreness so it is bearable. My back does actually hurt though. Fortunately, my shoulder pain is gone completely for the most part. The surgeon said that pain was not from the gas, but from the weird way I was positioned on the operating table for 4~ hours.
I was able to do a lot myself the past few days so I hope it is a good sign. The doctor said on Friday I am healing well and I should be good to go for six months before I need to see him again unless something changes. The idea of scars does not bother me as much anymore, I guess it is probably just acceptance now. But, I have a great support system and my mood has been pretty good since I have been home and off oxy. Oh, and I put shorts on finally, done with the damn dresses. Time for bed though, I have work in the morning.
11:16am, I was able to sleep on my right side last night for a bit. I am a side sleeper so this sleeping on my back has been killing me. My lower back is hurting pretty good at the moment, but I have not taken any pain pills today. I am working today on some boring stuff today so I have a lot of time to think about the back pain today.
3:02pm, the glue edges are starting to rise, the urge to peel it off is so very strong. Must fight this urge. Other than that I am feeling pretty good this afternoon.
May 12, 2020
Was doing rather well today, then I sneezed. It feels like I ripped the edge and the back spasms are intense. Stomach also hurts now.
Spoke with my receiver and they will not work with her on her meds so I asked my coordinator about it since my receivers coordinator apparently changes post op. She does not know who the new coordinator is to talk about new medications. My coordinator does not seem helpful, she also wants me to go back to Pittsburgh because they forgot to do a urine sample which was apparently on my orders. I don’t know how they missed it on Wednesday and on Friday. I really do not feel like going back just to pee in a freaking cup.
May 13, 2020
Yesterday was rather rough after the sneeze. The spasms sucked and my shoulder started to hurt again like in the beginning. This morning was rough as well, many small spasms, then a really bad spasm so I took a full pain pill and I have been alright since (it is about 2pm now). I am trying not to take the pain pills, but I am not going to sit in severe pain if I do not have too. I am ready to be back to normal, but glad this was done during the pandemic so I do not have to miss out on anything since everything is closed or cancelled. I have gotten irritable a few times but my carers understand, and I try to stop myself or just go take a nap so I do not take it out on them too much. They have been great throughout this.
I am trying to keep this blog as real and raw as possible, so if I skip days that just means nothing notable happened great wise or pain wise.
May 15, 2020
The past few days have been decent. I can finally stand and walk straight up. My back is weak so after a while being up it starts to hurt, it is crazy how fast my back started to weaken, but I did have back issues in the past so that could be a contributor. My incision becomes uncomfortable sometimes and the glue is starting to come up, but otherwise I feel decent. I spoke with my receiver and she is doing great and the kidney is doing great, it already filtered out 50lbs of water weight!
If you read the first post I was worried about people not understanding my energy levels and such, but that never became an issue fortunately. Most people left me alone and understood why I did not talk about it before, well all but one, but I shut that down real quick. So I will say this is going well and I do not regret it, although I am not bursting with joy. I am glad I gave her a better living situation and I would do it again if it meant her life, but I will admit I am SERIOUSLY happy I am physically not able to do this again because the level of suck I went through was rough. That is all for now.
May 16, 2020
Shoulder is cramping a tiny bit this afternoon, but I totally overdid it yesterday. Yesterday, I was having some good back spasms but I did plant my garden, pick up the living room, and wipe down a wooden table among other things so I did over do it. It is hard to believe I am only starting on week three after surgery. I remember the immense pain, but it feels like years ago.
Getting out of bed this morning it was weird to remember I could not do that on my own or without struggling with pain just a week ago. Took a pain pill today for the shoulder and the car ride. The counties reopened today from quarantine so we are going to a farmer’s market. I am going to try to take it a bit easier today.
Week three.
May 22, 2020
Things have been going well. The glue is just now starting to come off, but I still cannot see the cuts yet. I have a weird soreness around the main cut. It is hard to describe, but it is bearable. I usually take a pill at night just to help me sleep, other than that I am off all medications for this.
My coordinator Rita is great as well as my surgeon Dr. Tevar. Rita is so responsive to my emails even when she is OOO. I read a lot of blogs where the donors feel ignored, but with Rita and Dr. Tevar, I feel considered and cared for. I requested a six week appointment with my surgeon which is not the norm, but they scheduled that without hesitation. I just want it as a definite okay I am allowed to start doing my normal life again, just for my own peace of mind and it is awesome they totally get that. Some days I do over do it (not breaking rules though), but for the most part only a bit of soreness no real pain anymore.
May 26, 2020
Was very busy this weekend doing some cleaning. I overdid it a bit, but nothing too painful. The glue is finally falling off so that is nice. I scheduled a six week appointment with my surgeon to get a definite okay to do all my normal things again. Definitely getting restless on restriction now, but I will not risk my healing time or a worse scar. My coordinator is fantastic, great contact as well so that is very nice.
July 3, 2020
This will probably be my last update. I have not posted in quite awhile, but only one little thing happened since that is worth noting. I had one stitch that did not dissolve and my body decided to calcify it instead of pushing it out so the wound would not heal. The surgeon had to remove it with tweezers. It felt very weird and it hurt for a minute, he removed a tooth size hard yellow mass, it was pretty cool to watch.
At this point I am fully healed and all wounds are closed and scabs are gone. I am still weak in that area and I feel pulling and slight discomfort sometimes, but nothing of significance. All actual pain is gone, none in my incisions, shoulders, or back. Also, the scars do not bother me near as much as I thought! Both my receiver and myself are doing great.
I will admit I am thankful I will never have to go through that again. It was not some spectacular journey, I did not feel amazing, it was just something I am glad I did because it saved her life. It sucked horribly bad, but I am satisfied it worked out. I want to add, I would in fact do it again for her even knowing what I know now.
FINAL TIPS for Donors and Receivers:
- Do not go home too early
- Raised toilet seat
- Raised bed if necessary
- A caretaker who can handle your body weight
- Shower/Tub seat
- Kidney pillow (hospital should supply this)
- Heating pad (Electric one advised)
- Ear plugs / sleep mask
- Pain, anti nausea, sleeping medications
- Mute your phone notifications, people can contact your carers for info
And that’s it. The full experience.
Its me Jess again, and I would just like to say that people inspire me every day, to be better and do the best I can do. This situation particularly is one of the most inspiring things I have ever seen anyone do, and I am proud to call her one of my best friends. Even thinking about doing something like this scares the living daylights out of me. This shows that there are amazing people in this world, true gems, I am lucky to have a few in my life, and I recommend that when you find one you hold on to them.
P.S. All the photos except the header image belong to my dear friend. The images are her personal photos of her personal experience.