Thursday, June 9, 2011

How are you doing?

I've had several comments from people that are going through the process of donating (either to someone they know, or in a non-directed way). How are you doing? Have you had your surgery yet? How are the tests going?
If you've had your surgery, how are you recovering? Was it what you expected it to be? How is the recipient (if known)?
Have you had any challenges or bumps along the road?
What has life been like for you? Including the reactions you have gotten from friends and family? Was it different post-op as compared to pre-op? I know it was for me!

I would love to hear how things are going with you.
It's been almost 7 months since my surgery, and life is great. It's very much back to the way it was before and some days I hardly think about it. All in all, life is great - and I have heard the recipient is still doing great.

Thanks again for reading and commenting - you guys are one of the reasons I started this blog to being with.

Tuesday, April 19, 2011

Update

I've been in touch with my Transplant Coordinator recently - they do post-op follow ups including a 24hr Blood Pressure test, additional blood and urine work, and a questionnaire regarding your health. Of course, me being me, I lost the questionnaire part and had to get in touch to get it resent. While I was chatting with my Transplant Coordinator I did inquire as to how the recipient was doing and they are doing very well... my kidney has not been rejected (I'm not sure they would tell me if it was, but it's good to know that it hasn't been) and they have recovered beautifully.

For whatever reason this almost made me cry. I know this person has a family and just knowing that they are not on dialysis and are able to live a normal life again... I feel really good about what I did.

From my end things are going really well. Life is back to normal in pretty much every way. I do make a point to watch what I am eating and to really keep the drinking to a minimum, but other than making those healthy choices life is as it was pre-donation.

The other thing that came out of my conversation with my Transplant Coordinator was that I am looking to get involved in the peer support program. I have been in touch with the Kidney Foundation and will be meeting with the peer support coordinator next time he is in town.

I know there are not a lot of anonymous donors out there (however the number is growing - yay!), and as such, not only have I offered myself to this program, but I will extend the same offer to anyone reading this. If there is anything you would like to know, any question you may have about the tests, the surgery, the post-op, what life is like, please do not hesitate to comment with questions. I promise to answer any question you may have regarding living organ donation. I know I was the first of this type in my city and as such the only support programs out there were based upon directed donations (typically friends or family), as were many of the questions/procedures. Personally, I was hesitant to connect with these other donors as prior to my decision to donate, I had no connection to kidney disease or organ donation and felt this was a major difference in the donation process.

Having gone through it, I know I would have loved to have spoken with another non-directed donor. Hence, my offer to you. I look forward to hearing from you.

Hollow Spot

I know its been a while since I've posted in anyway, and I do want to thank you for reading my story.

Living with one kidney is living a normal life. It is now mid-April and the phantom pains are gone (even when I am not being as good as I should be), my scars are fading and for the most part it's not even something that I think of daily.

As life is back to normal, I am going to yoga again and it was there that I had a rather unusual reminder that I only have one kidney - we were lying on our backs with our knees pulled into our chests, our arms wrapped around our knees, rocking gently from side to side. I could feel the difference when I rolled towards my left compared to towards my right. The best way I can think of to describe it is I felt like a weighted egg where one side was heavier (and felt like there was something inside). The other side just felt hollow. It felt weird. It's weird being able to feel it in such a random situation. I mean, it makes sense that I could, but it was surprising as I hadn't expected it and this was the first time I had felt it.


In other news, my left leg has the feeling slowly returning. It had been numb on the top of my thigh between my knee and my hip ever since my surgery, and had scared me quite a bit when I first realized it. After a trip to the ER to make sure everything was okay, we found out it was because of where my incision is, and that it is very normal for any type of abdominal surgery with a side incision. The feeling is slowly coming back, and I expect it will be fully back within 2 months.

Life is pretty much back to normal, and outside of the occasional physical reminder my life has not changed from before my surgery.
I hope that if you are thinking of donating a kidney that you will find this encouraging, and please do leave a comment if you have any questions or concerns regarding life after donation (or the donation process itself).
Many thanks!

Wednesday, February 2, 2011

Life Goes On

For whatever the reason may be, I started googling "living with one kidney" and I found this fantastic testimonial of a woman who had her kidney removed when she was 7, and is about to turn 70. If you feel so inclined, please check it out. I found it renewed my spirit in the sense that living with one kidney is not that different than living with two. Granted, there is some extra attention that should be paid to your health, but most of what you should do are things that you should be doing regardless of your kidney status - drink lots of water, eat healthy, get regular exercise.

This week is 9 weeks since my surgery and life is back to normal. I'm still catching up at work, but thats more of a product of being off for two months than anything. Nothing is different in my daily life now as compared to pre-surgery. And I think that is a really good thing. My wonderful husband and I are talking about starting a family (when it is safe to do so) and are looking to the future with all the hope and optimism we have always had.


For those who have been reading this who are thinking of doing it and wondering what life would be like after, know that you have to be very healthy to be able to donate, and thus already have good habits. Post-op, you just need to keep up those good habits. It's really that simple.
For those going through the donation process right now, I can say that I know it is a long process with never ending tests (that don't necessarily end post-op - but more on that later), but thinking about the time that it took to do what I did, I can say that it was all worth it. And life goes on, as it always has. One day at a time.

Saturday, January 29, 2011

Dealing with the Scars

I know that I should love my scars, they represent a wonderful thing that I did and are relatively small. But, I don't. I am very aware of them and the way they look, and have purchased a scar-diminishing gel to help reduce their appearance. I'm not the type of girl that goes around showing off her stomach or anything like that, but I did realize the other day that there will always be the 'scar factor' to consider when doing anything such as going swimming, having exposed skin for whatever reason... and I'm not overly comfortable with that. I mean, I don't like feeling like when I go swimming I should wear a 1piece to cover the scars regardless of if that is what I would choose regularly or not. And I know that I shouldn't be ashamed of my scars, but I do have to admit I am body conscious to begin with and this just adds another layer to that.

Right now as the scars are very new, I feel like if they were to be seen, they would invite a lot of questions, and again, I am a very private person when it comes to talking about my surgery, so I'm not very interested in deflecting questions or looks. So, what I'm doing is trying this diminishing gel in hopes that the scars will fade and eventually you will hardly be able to see them at all. Thankfully, the surgeon was very, very good and they are minimal and healing very well, but I want them gone. I mean, I am a young woman, and scars are permanent.

Here's hoping the gel works, and especially since the scars are so new, that they fade fast and soon no one would be able to tell.

Back at Work

8 weeks after my surgery was January 21st, 2011. January 24th I returned to work. I went back full-time, with no provisions or accommodations, but to be fair, I didn't really need any. I wouldn't have minded going back a week early and doing part-time for the first week to sort of ease back into it, but full time worked as well - sort of a jump back in with both feet.

How does it feel to be back? Physically - exhausting. As much as I had a bit of a regular schedule the last little bit (I was going to bed at the same time as my husband who had to work in the morning, thus it was a reasonable hour), I still wasn't getting up before 930ish (or to be fair, functioning before that time). Thus, getting up and being at work at 8am has been a big adjustment.  I have a desk job, so the physical demands of the job aren't high, but I didn't realize the impact of having to sit (without being able to lay down or nap) for hrs until I went back. Monday night, I went to bed almost an hour after I got home, I was that exhausted. Now that its been a week (and it did get easier by the end of the week), I am more used to the early mornings and do have energy at night.

The mental side of it is a whole different story. Mentally, was I ready to go back? I was starting to struggle to fill my days - you would think that the second month when I am able to get up and move and actually do things would be the best, but at the same time, that was also when I realized that everybody I know has a job and can't get together during the day. There was no one to go for coffee with, lunches were on a lunch break and had a set end-time, and everyone had things to do. Everyone except me. I spent a lot of alone time this last month, but I did get out as much as I could. Which meant I drank a lot of coffee. (I would go for walks and I would go too far so I would have to stop for a coffee to recover for a bit, or even just wait for my hubby to get off work and pick me up on his way home.) Mentally, I was used to a lot of time alone, which I hadn't realized I had gotten so used to. It was my schedule, my music, my time. But going back to work meant I had 8hrs a day around other people which was almost as exhausting as the physical side. It was kind of nice being around other people and having a purpose to my day, but re-learning to work on someone elses' schedule and on their task list has been hard.

Of course the other part of returning to work is the fact I've been off for two months, and the world didn't stop while I was gone. Getting back in the loop, caught up of projects and dealing with new hires has not been as easy as I would have liked. To be fair, my company changed structure and my job during this time, so there was a basketful of changes to get used to, including working in my new position.

At work, only my boss knows about my surgery, the other (new) staff only know that I was off for surgical leave for two months. I've told them it was abdominal surgery as that explains a bit without getting into too much detail, but I have discovered that I am rather private about this. I only want people to know who I have a certain level of a relationship - people that I trust. New people in my life, they don't need to know. It is none of their business and maybe if I get to know them better I might tell them, but I don't overly see that happening. My life is my life, and there are some things that are better left private.

My husband has told me that its a bit of an adjustment for him as well (the fact that I'm back at work). I'm not always home when he gets home, which means less time together - which we both miss. My job hours varied this last week as I had a few early morning, earlier than his mornings, and thus we are re-learning how to work within each others schedules. He also commented on my energy level in the evenings. Previously, he was my main source of company/entertainment and I always perked up when he got home. Now, I have been around people (and their music) all day, and I am quieter and seeking alone time at night. That part is very weird for both of us to get used to.

All in all, I am happy to be back. It makes the days go by fast, and it gives me something to do. I love my job and what my company does - working for a non-profit is very rewarding. But, I'm not going to lie, if there had been a way to get an extra week in there, that would have been awesome.

Saturday, January 22, 2011

Who Knows... And Who Doesn't

One of the interesting parts of my wonderful husband's Christmas Party is that I was confronted with my surgery. What I mean by that is among the glittering trees decorated by designers and his cocktail attired coworkers, I came to find out that my surgery was not something between him and I after all. Rather, when explaining to his boss that he needed time off to accompany me for surgery, some wires got crossed and the next thing I know apparently the entire Sr Management Team from his company knew that I had donated a kidney. Apparently the only part that didn't come out was that it was an anonymous donation.

It was super wonderful, I'm standing around having a cran-soda (to not make it apparent that I wasn't drinking at a cocktail function, which I would normally be all over) and the wife of my husband's best friend (who is the second of 3 top guys at my husband's firm) starts asking me about my kidney and how my cousin was doing. I was a little shocked. In fact I believe my exact response was "What? Excuse me, but what? How do you know about that? How much do you know? Where did you find this out?" A rapid fire string of questions. I was caught totally off guard. Normally, when I know I will be telling people about this, its something that I initiate, and I have the conversation somewhat planned out. This, this was different. I didn't start this. It wasn't my doing that spread it around. I had no idea how to react. After a few briefly uncomfortable moments I excused myself from the conversation to try and find my husband to see what had happened, and low and behold, it happens again: "Hey, by the way, awesome that you donated a kidney," Similar response from me.
Although I did say to all these people that it wasn't something I wanted to talk about, I had 2, needed one and so I gave the other away. I let them continue with the notion that I had given to my cousin, I didn't really feel like talking about it.

The one thing that happened from this is that I became more open to talking about it. I did find that people's reactions before surgery and after are vastly different. Before people thought it was their right to tell me what I should  and should not do; a surprising number of people tried to talk me out of it. After, I only got positive reactions.

I started telling the rest of my family, my brother, aunt and uncle, as well as some very close family friends. I told a few more of my friends, as well as some people that asked about my surgery. In some ways I found it easier to tell people than to explain why I wasn't at work (I'm not a big fan of lying), and why I was moving around like an old lady.

Talking about it was freeing as well. I didn't have to hide any pain or discomfort, try to pretend certain activities held no interest when I really just didn't have the energy for them, or explain why I was talking certain pills and liked to nap a lot.
And when asked about why I simply say "have two, need one." And yes, if they do ask, I would do it all over again.

As for who doesn't know, other than my parents-in-law, the in-laws don't know, nor do a lot of people in my work circle. My little sister knows I had a kidney removed, but not that it was donated. Most of my immediate family knows, as do close friends, and that is how I would like to keep it, at least for now. Although, this is not set in stone. I am not out advocating for organ donation or anything like that, I am simply telling a few people what is going on in my life, as it is a big part of my life, and waiting until I am fully comfortable with these people knowing before moving on.

I do find that people look at me a little differently when they know, and I'm not a fan of that at all. Which is why there are some people who I don't plan on telling at all. For example, I don't tell people that press the issue. If a friend is asking some follow up questions from my standard statement "I'm on surgical leave" then I provide tidbits of information based on their questions, but if they don't ask, I don't tell. Then, there are the other people that knew I was going for surgical leave (particularly one woman who shares our office space) and kept pressuring me for details (not because she overly cares what it is, but because she doesn't like not knowing). She even went so far as to tell me that "I am beautiful just the way I am, and I don't need to change anything." Right. It was quite funny when I did pop back into the office for a quick visit and she was there, she kept checking me out to see if she could see what it is that I had done. Nope, boobs still the same size, as is butt and belly. Then what was it? - I could see the questions radiating from her eyes. I finally threw her a bone - abdominal surgery. Kinda made me laugh though.

I will admit, it was a bit of a relief to talk about it with some people.  I mean, this was a very major part of my life, and to lie about it and keep it hidden was not easy for me. It informed so much of my daily life that I left I was unable to really participate in much of life because I didn't want to give away what happened, nor did I want to lie. So telling people made life a lot easier, as well as making activities more enjoyable - I could stop and take all the breaks I wanted.


It was that fateful Christmas Party that started all of this rolling, but I have to admit, other than the fact that some people who I would never have told know, it wasn't that bad of a thing. So, what about you?? What has sharing your decision and/or your recovery been like? Positive? Negative? Did the word spread like wildfire or was it something you were in charge of (I asked my family to let me be the one to share the news, and they were all very respectful of my decision).

Tuesday, January 11, 2011

Week 2

Week two (of being home post-op) began with my husband's Christmas Party as part of a corporate weekend retreat.

We were both quite looking forward to this event as it was at a beautiful hotel and it was a nice weekend away. However, I don't think we factored in quite how taxing it would be on me. For starters, packing was a strain. The majority of my pain (and medication) was a result of doing things I shouldn't and overdoing it. Bending, lifting, twisting, standing up and sitting down then standing up then sitting down (repeat) were all things that did me in. These simple acts could easily wear me out, and packing is full of bending, lifting, twisting, reaching etc. That and the ensuing car ride made it a long ride - I was still sensitive to every bump in the roads, and being winter, there were a few. What I would have done differently is brought my Bunny Earl with me to put between the seatbelt buckle and my body - the consistent pressure was not comfortable after the first five minutes of being in the car.

I think my issue was I was underestimating how taxing healing really is on the body. Just because I hadn't done anything other than get up off the couch a handful of times, doesn't mean I wasn't exhausted at the effort and in a bit of pain. The pain wasn't really too bad, all in all, but it was worse when I did physical things I shouldn't.

The Christmas party was spread over two nights, and it was here that I was able to notice something I never had before: phantom pains related to digestion. I will admit I had phantom pains before this, however I attributed those to my body getting used to one kidney and learning not to send anything to Earl for processing. This, however, was different. I could feel a phantom pain on my left side within 20-40mins of eating/drinking less that ideal substances. Example: I got a twinge about half an hour after eating a batch of salty fries, or having more than 1 glass of wine. I noticed 'fake' food (junk food), foods with a high concentration of sodium, and alcohol would trigger these pains. They didn't typically last very long, but it was a bit of an internal jab reminding me that this early on I needed to be a bit more careful with my diet.

In Week 2, I slept a ton. I was on my own at home, and thus getting water, in and out of bed, up off the couch, showering and dressing, all these simple tasks that I had been doing before were more draining now as I had to do more for myself which typically required more movement, and thus I was exhausted at the simple things. For walking I could manage about 5 blocks without feeling anything major, but after that I really did notice my body was just not ready for that kind of work, it was still doing too much inside. My incisions were still very tender to the touch and tight fitting clothes did not go over well at all, nor as I found out, did pantyhose.

As I posted in Week 1, being alone is hard, and I was able to notice that more so in retrospect as in Week 1 I had my Father In Law and in Week 2, after the Christmas Party, I did not. I would reccommend magazines for Week 2 - books can be a bit overwhelming, I didn't really feel up to reading anything, and tv can get old, real fast. Magazines are strong enough to hold attention, not mentally taxing, and something that is easy to pick up and put down between naps.

What did you find worked in this early stage of recovery? Any tips/tricks you would like to pass on? Any questions about the recovery process? Love to hear from you - your comments inspire me to keep blogging about this. Thanks!

Friday, January 7, 2011

The Healing Process

It has now been 5 weeks since surgery and I will be the first to admit they have not been an easy 5 weeks. Over the next week I will be posting on what the recovery process has been like and other aspects of my life that are directly related to surgery such as finding out that people found out about surgery when I have been very specific about keeping it private. For those that have been following my journey, I thank you for your time and patience. I will admit, part of the process was spending 14hrs a day online watching TV and movies, to the point where I didn`t want to be near a computer to post, hence the delay.

I am back, and will do my best to post with some regularity, and as always welcome any comments or questions. The comments have inspired me to return to the blog and continue posting about my experience.

Week 1
Short Summary: pain, drugs, loneliness.
I was amazed at how much every little thing took so much more effort. From standing up to getting in and out of a car (if I was up to going out), it hurt. The laproscopic incisions are on my left side and it felt like every time I moved I was using my abs, muscles that had been cut to allow for the tools. Hence the drugs. They gave my T3s when I left the hospital, a small prescription meant to help control the pain, but there wasn't supposed to be a lot of pain, and I suppose that would have held true had I been able to slow down and take it easy. I suck at that. Its one thing if people do things for me because they want to, its another if they do them because they have to. I didn`t like the have to part very much and thus would try and do things for myself. Not a good idea.

On Sunday my Father in Law came to stay with us for a few days. My husband had taken 2 weeks to travel for surgery with me, but needed to return to work. I was not in a place where I was okay to be alone, and thus my Father in Law came to stay. He arrived on Sunday and returned to him home on Wednesday. I must admit, having him there those first few days was so very important. First of all, I was not able to cook (for what little food I was eating, bend or reach, and most of all, I was bored. Already being back home for a few days, my hubby and I had passed the time watching TV and movies online, surfing the net, and generally hanging out in front of a computer screen. When the computer is your only source of entertainment for days on end, it can really get to a point where you want nothing to do with it. And that's what happened to me.
Thankfully, my Father in Law provided some great company - he makes a fantastic soup, was there to make sure I didn`t over do it on walks (my max was 3 blocks, round trip) and basically stop me from going insane. That's the thing, I couldn't walk very far at all, I mean, wearing denim was hard as my abdomen was still slightly distended from the CO2, and form fitting pants were painful. I`m not the type to hang out in public in sweats, so any outing was rare and short lived. I couldn`t walk, and the other thing that was interesting to learn is no driving for a month! Let me just say, the 3 blocks around my condo - not that interesting.
No walking, no driving, and over-saturation of being online. Thank goodness for company. It made all the difference in the world. My husband was still there of course, however I was sleeping when he left for work, he didn`t get home until 6ish and there was a loooonnnngggg day in there. I was trying not to sleep during the day because I wanted to be able to sleep at night, but sometimes that didn`t help either.
Just as having someone do things for me because they want to is different than if they have to, so is alone time. If I want it, great, but when its forced upon me because everyone is either at school or at work, or in a different city, the days can drag.When my Father in Law left, the remainder of the week was pretty lonely.

If I have any advice for anyone going through this: the first week after surgery when you are most limited in terms of ability and movement is almost as important, if not more so, to have someone there with you than the actual surgery itself. I could not have gone through surgery without my husband there with me, nor could I have gotten through that first week on my own. Also, don`t be afraid to ask for help. Simple things - the water pitcher in the fridge was low so I had to bend, and it was kinda heavy when full - thus I had to ask for water all the time. I fought back at first, trying to do things but I quickly realized the bravado wasn`t worth the subsequent pain. Ask for help. And be careful with the pain pills (more on that in Week 2).