Fighting PKD: Liz’s Journey

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Fighting PKD: Liz’s Journey We followed the journey up to transplant. Now follow our healing and post transplant journey

19/02/2024

Happy Saturday, Loves!
L.E. Bowman | Author of What I Learned From the Trees and The Evolution of a Girl.
Follow .e.bowman.poetry for more , , and on love, life, self-love, self-care, and more.

19/02/2024

Sculpture Park in Wicklow, Ireland.

18/02/2024

We have been pretty quiet but still going day by day. Liz labs remain stable. We prepare for my surgery this week and I dont know who is more anxious Liz or myself but we will get through and continue onto the road of healing and the next step or discussing Liz next surgery. Stay healthy we love you all

26/01/2024

Well my week of bedrest has now turned into me being pulled from work until after surgery. They had hoped resting would be the answer sadly even walking short distances and standing for periods at a time are an issue and causing increased pain. Hoping the time goes by fast and the next recovery is nothing like the last

23/01/2024

Thank you to everyone that has checked on me and reached out. I made my body angry spent a day in our ER yesterday. I’ve had increased pain with movements and walking. My hernia is slightly bigger and it is inflamed around some organs and fun things in my body. So for now it’s bed rest for the rest of this week in hopes it calms down and then taking it easy until surgery number 2 in 29 days.
I wish more focus was in the mental part after donation it’s been rough I’ve felt lazy and pushed myself to proved that I wasn’t and now I’m paying the price. We have both struggled since surgery but so thankful for everyday together and I would do it all over again.
The next 30 -45 days will be busy we have to take our youngest daughter to cardiology next week I have surgery in 29 days then we go to our follow up in early March to discuss the next surgery for Liz. More updates soon

29/12/2023

Well it’s been a little bit we hope you all had a wonderful holiday season filled with family love and laughter. We enjoyed our with family and off our phones we are blessed for each and every day we have with our loved ones.
Liz made it back to work for 21 days until an illness kick her butt. She is down for the count for day 3 cough chills body aches and no voice. It’s hard to see her sick but her body will fight it off just takes a little longer.
My next surgery is tentative for Feb 22 and hopefully we will both be on the road to a long healthy life.
Thank you all we love you

14/11/2023

Good morning everyone I know we have been pretty quiet things have been day by day but stable. The holidays are approaching and while they stress me out this year I am so thankful for our tribe and this chance at life Liz was given. I just looked at her weekly lab results her Creatitine is 1.1 and her GFR >60. For anyone that does not know that is amazing her numbers match mine and we both currently have the kidney function of someone with 2 health kidneys.
Monday we start our next journey together to remain healthy and to love ourselves again and enjoy this life we have we will begin our weight loss journey we will k share the good bad and in between with you as well as being healthy for ourselves will make a world of difference for our kidneys. As always we love you and are so thankful for each and everyone of you ❤️

31/10/2023

So I’m gonna be candid here since we’ve shared the start of our journey, the duration of our journey, and we’re going to continue to share until the end of our journey whenever that may be so I went to a follow up appointment yesterday in Rochester 20 days ago I was 250 pounds yesterday I was 264 as embarrassing as that is I’m going to share because like I said we share the good the bad and the ugly the doctor seem to feel that the medication I’m on the prednisone the immunosuppressants, the Marinol and other things are contributing to weight gain also, they believe that some of that weight gain is water however I know what I’m capable of eating and I’m aware that I have eaten a lot since surgery. The doctor has taken my ability to smoke ma*****na away even with my ma*****na card from New York State because there is a mold spore that can possibly grow on the plant and it’s unsafe for me to inhale as it can affect my lungs give me an illness and ultimately make me very sick, so I have chosen to stop smoking altogether which has taken away something I have done often so ultimately I replace it with something else which unfortunately is food so now after today which is Halloween, I will enjoy Halloween and tomorrow. I will be counting calories and per my doctors suggestion exercising and being active for at least one hour daily, I see my doctor in a month right after Thanksgiving so I will see how much weight I can lose In that amount of time I’m not impressed with myself because most of it is mind over matter. However, there are other factors that I need to be aware of that contribute to my weight gain, I will not allow it to depress me. I will overcome it and I will lose the weight. here’s to my weight lose journey on Top of everything else I’m dealing with

28/10/2023

I’ve been pretty quiet on here. Going back to work has kicked my butt mentally and physically. I’ve had a few days of pushing myself maybe a little too far Liz has been holding things down at home (thinking she doesn’t have to rest since I’m not home) her labs have been stable in fact the exact same for 2 weeks. My next surgery will not be until about February as this is the least risky time to do it. We continue to learn and we’ll push our limits but taking things day by day

Me after walking 2 miles ….🤣🤣🤣🫣
22/10/2023

Me after walking 2 miles ….🤣🤣🤣🫣

68.9K likes, 151 comments. “A win is a win 😉 I celebrate them all 🥳”

22/10/2023

Hello all it’s been awhile Liz here … Samantha still refuses to allow herself to rest so she gets yelled at daily but for the most part I help her with whatever she needs and she does rest a little 🤨I however have started walking a mile a day on the treadmill (yes someone is in the room with me
At all times just in case) it will help me
Not get too chunky 🤨and make my heart strong I do have some discomfort in my chest when I first start walking which I will discuss with my doctors next week when I head to Rochester … for today it’s football and beef stew and REST

18/10/2023

Well I must say today is not a good day I haven’t Felt unwell in weeks …..today I have a bad headache with nausea
And some dizziness when I stand ….I tried to do a few things around here
But managed to only
have something to eat and ended up on the couch .. I think I surrender today … I think a nap and tv for the day is what it’s
Gonna be … tomorrow will be better ❤️❤️

12/10/2023

With no surgery date set and th being unsure when my next surgery will be it has been determined I have to return to work Monday. My employer has agreed to keep me on light duty or desk duty and accommodate restrictions. I will be pulled back out when it comes time for another surgery. Please send positive vibes

10/10/2023

Weekly Rochester update (number 2 for this week) Liz labs looked great and stable for the first time we are decreasing her immunosuppressant dose. She has her stent removed today (she couldn’t be happier about this) and appointments have been pushed out she does not need to go back until the end of the month. She is amazing and so strong keep kicking ass Liz

09/10/2023

Back to Rochester today to meet with the surgeons for follow up surgery. (Why are plastic surgeons A**holes). Didn’t really hear what I had hoped and I have a lot of thinking to do they are afraid to do the surgery now so close to the recent one because the scar tissue is not healed enough and if the hernia and bowels are mixed in with the scar tissue it could be too conjoined and doing the surgery could risk perforation and needing a bowel resection getting a colostomy etc. if we wait (anywhere from 2-9 months) we run the risk of bowel obstruction and strangulation which would require emergent surgery to fix it. These options also come with more time out of work etc. while it’s not what I want to hear and I’m super emotional today I have to do what is best and understand that all will be ok.

04/10/2023

CT results came back it is confirmed I have a rather large hernia in my lower abdomen and upper pelvis area containing my small bowel with surrounding inflammation. It is not obstructing anything at this time so hopefully Rest and liquid diet will help until the surgeons come up with a plan. We will meet with the surgeons on Monday and go from there my return to work has been paused from its original date. It’s hard for me to rest and mentally I feel like I’m going backwards in the healing process when in reality I was never truly healing as I knew there was an issue prior to discharge and it got brushed off and then I just continued to push through it. It will hopefully be an in and out procedure and I’ll be back on the road to healing.
Liz is doing good day by day she still has ups and downs but she pushes through and now thinks she gets to tell me to rest etc 🙄

Awaiting plan of care but ordered “bowel rest” so smoothies, milk shakes, (with added protein powder) and tomato soup it...
04/10/2023

Awaiting plan of care but ordered “bowel rest” so smoothies, milk shakes, (with added protein powder) and tomato soup it is.

03/10/2023

This journey has been bumpy to say the least and my focus has been on Liz her healing and her having every chance at a long life. I have listened to my body and doctors and tried to “rationalize” any extra pain etc. today my provider called and while we are waiting for the official report it looks as if I will be having an additional surgery as the area of concern in my abdomen appears to be a hernia with inflammation that goes into my bowels related to surgery. We will know more hopefully tomorrow and have a plan. It’s just another bump in the road but I will need a longer recovery time and more time out of work. I have already competed 3/4 of a blanket and 3 diamond paintings so let’s see what else keeps me busy. My diet will be mostly milkshakes and soup but anyone that knows me knows what is not breaking my heart. Everything happens for a reason and it’s just another step In our journey.

We had our weekly follow up in Rochester today. Liz labs are again stable we do have to increase her immunosuppressants ...
02/10/2023

We had our weekly follow up in Rochester today. Liz labs are again stable we do have to increase her immunosuppressants again today (this is normal) but with the increase will come increased exhaustion. This wouldn’t be a problem if it wasn’t Liz and she wasn’t stubborn 🙄. Apparently she doesn’t like sleep (weirdo 🤣). She does get to decrease her steroids this week also. her staples were removed last week and her steri-strips were removed today. Incision looks great and she still has ups and downs but we take it day by day.
For me my follow up was mostly uneventful. Labs remain good and no concerns there however I am awaiting results of an abdominal CT as in true Sam fashion if something can go wrong I tend to have it happen. My abdomen is swollen (opposite side from the kidney they took) it’s super hard and painful to touch. They want to rule out any fluid buildup or hematoma and hopefully it is just scar tissue or my body reacting. Still have some pain Bending and sleep can be uncomfortable at times but so grateful to be here with my best friend on this journey and ready for her to be able to live

28/09/2023

Weekly follow up update on liz we are both learning to not stress or analyze her lab numbers as they continue to fluctuate. (The nurses in us make there hard) but fluctuations is normal. all staples have been removed from her incision. She has been given clearance to drive but needs to continue to listen to her body. Another check up on Monday for both of us but all remains positive.

26/09/2023
25/09/2023

I was given the clearance to drive short distances so I tested that this morning. Drove Liz out for her bloodwork and we were able to just spend time together out of the house and do random things. While we both became tired easily it felt great. I was able to stand and bake the other day and today soup in the crockpot.
Lab results from today show Liz levels still improving creatinine down to 1.2 and her GFR is up to 58 😱 yes you read that correctly. 3 week down and a lifetime to go

24/09/2023

As you all now we share the good the bad the ugly to maybe help
Others
Going through this and just to
Document my journey
…. Pain is subsiding day by day which is a
Blessing I never take my days for
Granted anymore … the mental aspect of this is tough the boredom and
Feeling like
I’m
Not doing enough is tough but it’s mind over matter and
I’m getting into some
Word searches and maybe some
Video
Games here shortly to keep me
Focused … what seems
To be of concern at this point is my heart rate sometimes shoots up to the 140’s and causes me
Dizziness and waves of heat flashes ( yes my doctors are aware and are monitoring I don’t play with my heart rate) it’s
Most
Likely the fact I am
No longer on any BP MEDS when I used to be
On 5 prior to transplant which also is a
Blessing … its just an alarming feeling all at once I will get though this and it will all be worth it I
Still have to learn
When too much is too much for
My body that continues to be tough as I have a
Hard time sitting
Still ever 😀
If and when my immunotherapy meds need to be adjusted and increased those days are harder than others as it beats my body up and tires me out and I need to learn on those days it’s ok to nap and rest a
Little more … each day is a new day and a learning experience if anything I hope
I touch and help one
Person going through this so they know what to expect … even with all this and the boredom I wouldn’t change my choice ever .. I have a
Second chance of feeling human and normal again and that’s a feeling like no other …. Here’s to another day I love you all

21/09/2023

Another good follow up appointment for Liz her labs are stable and she has been “upgraded” to once a week appointments in Rochester

Liz had her post op appt with her P*P today and he is happy with her progress and no concerns. Can we discuss how amazin...
19/09/2023

Liz had her post op appt with her P*P today and he is happy with her progress and no concerns.
Can we discuss how amazing her work family is and how much love we felt walking into that office today

Monday follow up update. While liz is still dealing with exhaustion and adjusting to the medications her recent increase...
18/09/2023

Monday follow up update. While liz is still dealing with exhaustion and adjusting to the medications her recent increased dose has caused more fatigue throughout the day she continues to push through and do what she needs to do to remain healthy. Recent numbers continue to look amazing
(Last time GFR was even close to 49 was 2018 😱)

16/09/2023

We are post op day 11. We feel a little better day to day with some set backs here and there. My pain is pretty controlled but my body lets me know when I push too much. Liz pain is still there but getting better. Her exhaustion from the meds is really
Kicking in these last few days and while rest is needed she needs to listen to her body and not her brain. We have moments of feeling bored and lazy but we know what is best and will keep doing our best to listen to the doctors.
All labs are looking good for both of us right now liz had some medication adjustments to maintain maintenance levels but this is routine and to be expected it means her kidney is metabolizing the medication as it should be. Rest for the weekend and another follow up Monday.

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