Life Moves Forward

I know I haven’t been updating much, but I’ve been making the rounds with my local doctors after I got back home from Philadelphia & also doing a few more tests.

The last few months, I was having problems with my stomach so a few weekends ago I ended up getting a test to have that checked out.

Luckily,  the results are back & we’ll officially review them soon but I was told not to worry about anything immediately or seriously wrong there.

I was relieved because that’s another trade-off that comes with lung transplant.

The surgery can impact the nerves in the stomach & cause new issues with digestion & emptying.    This is an issue that several of my friends experience & it’s a hard one.

My steroid diabetes is better & I hope soon to be off insulin, but I’ve had to give myself very little insulin the last few months, which is encouraging.  They’ve started lowering my levels of steroids & my immunosuppressant levels are finally consistent so that means less dose adjustments.  Things are getting more towards a new “normal”.

I also managed to get past my first sinus infection last week.  I’m still recovering my energy from that & all the crazy weather changes, but overall am doing well.  I’m extremely grateful for that. I honestly wasn’t sure how my body would react.  It was my first one since the transplant & I was scared when it hit.

Now, I feel a bit better knowing that things haven’t changed there as much post transplant.  I’m good about staying on top of them & so is my local team of docs.

Because I can also breathe better, I think the antibiotics & treatments work better than they did before.  Or at least it appears that way.

I’m starting to make the rounds occasionally to meet up with friends & go out in public, but I still have been laying a little low since there’s been some sicknesses going around my area.  I always had hesitance even before transplant about being out a lot during cold & flu season. This still poses a real problem for me because of my low immunity.

I just don’t want to take chances yet, so I am opting to not go to the Donor Dash or the Million Dollar Bike Ride because I really feel it’s too soon for me to be out amongst so many people.

I know after 6 or 8 months, I can consider those things & feel much better about involving myself.  It’s just a personal choice I made after what I’ve been through since my transplant.

Emotionally too, I needed time to rest & adjust to being back home after so much time away.  I know I wouldn’t have fun at those events because it would make me too nervous on several fronts.

I still wear my mask in the supermarkets on weekends & in waiting rooms. I also throw it on any time I am in proximity of someone I don’t know who appears sick.

My friends are really good about avoiding me if they are under the weather, which I appreciate that courtesy.

Some people have recently begun to ask when I will go back to work.  The answer is I don’t know yet because the first year post transplant has a lot of potential for complications. The focus there needs to be on getting well & recovering before & above anything else.

I have to get cleared by my doctors as well before I can resume working in any capacity.   But rest assured, with what I have to do, I keep plenty busy.

Luckily, I have had less bureaucratic tangles than I had last year.  I’m hoping it stays that way because adapting to my routine & keeping up with all my doctor visits keeps me busy enough since I’m still on a schedule of appointments every 2-3 weeks.

I have started to think about things a bit more in advance at least to mull over & that’s a nice change.

Before & during my wait, I really struggled because I felt stuck, unable to move forward with any aspects of my life.

Now I can move forward, even in baby steps, & it feels good.



8 thoughts on “Life Moves Forward

  1. Good to know things are improving for you! All the best with your continued recovery!

    Liked by 2 people

  2. Good to hear from you Nikki. Encouraging updates always welcome.

    Liked by 2 people

  3. Nikki, So far it sounds as if you are having a fairly “normal” recovery …… the same fears many of us experience, the similar reactions to the meds, the same emotions across the board. If I were to guess, your “elixir of life cocktail” included Prograf and Cellcept. I have no experience with Prograf (I’ve been on old school Gengraf), but I am well versed on the Cellcept side effects. I was on 1,500mg BID for 7+ years, and they did cut me back to 1,000mg BID the past couple of years.

    So wonderful to hear you are recuperating …. one day at a time.

    Be well, Don

    Liked by 1 person

    • Hi Don, actually they had to take me off Prograf & Cellcept because it made me too ill & my body wasn’t absorbing it properly. I’m now on Imuran & Cyclosporine & am doing much better despite the horse pills the cyclo are :). I’m thankful (knock wood) that outside the blip in January I’m doing well. I had so many complications pre-transplant with surgeries over the years I was really expecting & preparing for a complex recovery just in case. In another few months they’ll probably switch me back over to Rapamune instead of Imuran because it manages my kidney issues a bit better. But even my low energy & sick days are much easier to manage since I don’t have to work as hard to breathe. Hence, my vigilance in protecting my gift. 🙂 I won’t live life in a bubble, but I also know I have to ease back in to certain things. There was so much I learned from this whole process.


  4. You sound great. Hapoy to hear this update. I think you are wise to take baby steps.
    Gotta take care of you.
    Best to you.

    Liked by 2 people

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