14months post-op and 4months pregnant

I'm starting on a new journey. I am pregnant with our first child, due June 2012. I've wanted to share this news here for quite a while, but I kinda figured I needed to tell my family and my boss before telling this world (as I know there is a bit of overlap).

I was a bit nervous when we first found out (heck, I still am - this is a big change!), as I had assumed that I would be high-risk, due to my surgery. According to my doctor I am not high risk! I am young (25yrs now), and quite healthy (as I had to be in order to donate) and thus I am at the higher end of normal risk, but still normal.
I have to say, this was a bit of a relief to find out! They will still keep an extra eye on my blood pressure and do a bit of extra monitoring but other than that they anticipate this being a normal and healthy pregnancy.

Being pregnant did bring to mind all of the risks they warned me about prior to surgery - the increased risk of pre-eclampsia, hypertension, pre-term labor, and low birth weight. What I have been thinking about is that this 'increased risk' took me from less than 1% chance to less than 3%. Which means that I have a 97% chance of no complications.

This is one of those things - it's one thing when being pregnant is an abstract thought of something that may happen at some undetermined point in the future, and another when that second line comes up on the pregnancy test.
Granted, I am still early in the pregnancy, and June is still 6 months away, but from where I stand now, if I could know what I know now back then, I would totally do it all over again. I am young, I am healthy, and the 3% chance is still not enough to balance out the good the my kidney has done for someone else (and their family!).

I know this might be silly, but I kinda figure that since all the organs get squished and pushed out of the way, having only one kidney gives this kid some extra room to grow/move around.

I will continue to come back to this blog, to share updates on life with one kidney, and to let you know how being pregnant with one kidney is going. If I haven't posted, chances are that means things are going so well I don't really have anything to report.

I know this is a new can of worms, so please let me know if you have any questions on life with one kidney, the surgery, recovery, and now how it is having an impact on this new journey. I don't think I am the only person to get pregnant with one kidney, but in this new digital age, I may be one of the few that is willing to blog about the experience. If you would like me to post more frequent updates, let me know as well - I'm happy to post if it will help someone out there.

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.

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!

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.

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.