New and scared

[Pinkpixy]

Hi there.

I just got my bloods back and I am scared. My GFR is dropping so fast. I saw this group while googling options and answers. I have ADPKD and I am scared, angry and feel like a burden. Anyone else here with the same illness?

[Hidden]

Hi,

You didn't provide a lot of information so, and I may be wrong, but, I assume you know the background of ADPKD and the prognosis. Are you aware that there is a drug on the market that can slow the progression of ADPKD? I've attached an article link below that will explain it. You may know about it already and if not perhaps others will benefit from knowing about it.

kidneyfund.org/kidney-today...

The best you can do immediatly is follow your physicians advice and stay calm. Your kids will look to you for support and guidance in how they react to this should they have to deal with ADPKD. While I don't have this condition I do have CKD and have gone through periods where my GFR dropped 22 points in 30 days. It has gone back up. The primary thing is not to panic (too much) and stay with the plan your physician has developed. Since you know there is no cure, the medication mentioned in the article has had some success in slowing the growth of the cysts. Someone in your family was probably the original with this gene issue, and if it's you then you have to set the stage for your kids and others who may contract this. Have you joined a PKD group to share with others?

Dialysis and Transplantation are the options available to you when the time comes. Do all you can to learn about the various modalities available to you. Speak to your adult family members and the doctors on your Care Team and seek as much information as you can on the options and time frames available to you. Best of luck.

[Pinkpixy in reply to Hidden]

Hi there. Yup I know about the meds but I am in stage 4 and my neph advised that it's too late to try the Meds. Yes I do belong to the PKD support group. Waiting for the call from my neph. Hoping he calls with a plan. I don't have one. My function drops about 4%every 6 weeks. I am on meds to control my bp as well as heart meds as my last hypertensive crisis caused my heart some damage.

[Jayhawker in reply to Pinkpixy]

Is a transplant a possibility? (This may be a stupid question as I really know very little about ADPKD.)

You and your family are definitely in my thoughts and prayers.

Marj

[Jayhawker]

Hi

I also have CKD although not from ADPKD. Definitely you'll want to work closely with your nephrologist and the rest of your medical team.

I wanted to share what it was like as a child who grew up in a family with a parent who had chronic kidney disease. It may help to hear the perspective of at least one child who grew up in a home where a parent had this chronic condition

My father had CKD. In fact, I never knew him when he didn't have CKD. He was diagnosed during undergraduate school where he was a music education major. His CKD resulted from severe, chronic hypertension.

My father did what his doctors said. He had a great attitude as well as a great sense of humor about having a chronic condition. He made accommodations in his life as needed when needed, e.g., he took a nap every afternoon immediately after getting home from work. While he napped my siblings and I were encouraged to play outside with friends or do our homework After dad finished his "power nap" he was up and helping my mom fix dinner.

My dad was a band director. He absolutely loved teaching and music. Music teachers do a lot of outside work activities, e.g., marching band at football games, pep band at basketball games, concerns, private lessons, and so forth. Dad also had a small dance band that played for dances on the weekends And he tuned pianos and repaired band instruments. Clearly, he didn't let his CKD stop him. But, he did make various accommodations in his daily schedule to make all of this work.

Other than these scheduling accommodations, he followed his CKD and heart healthy diet requirements religiously. He took his medications as prescribed. And he focused on doing the things he loved on a daily basis. In other words, he lived his life very well in spite of his CKD.

My mother was clearly a critical part of all of this. She modified favorite family recipes with ease. I still have her hand-written cookbook where she documented the modifications she made to these recipes in the margins. It was the one item she willed to me when she passed away. Neither of us knew at that time that I would ultimately develop chronic kidney disease too. I certainly treasure that cookbook now

Mom was also great at helping set a routine at home that worked for my dad as well as my siblings and me. She did all of this so easily. We had sleep overs. We were one of the popular houses in the neighborhood; there was almost always something going on at our house When dad needed to rest these childhood activities happened outside so dad could sleep without interruption.

All of this was very normal for our family and for me as a child.

Dad eventually reached a point where he needed dialysis. He was prescribed in home hemodialysis which was administered 3 times a week. (This was about 33 years ago . At that time they were not prescribing daily in home hemodialysis.) My mom and I were his in home hemodialysis care partners. He did not have a fistula,; instead, he had a graph which is more difficult to manage. Nevertheless, he never had an infection nor did he have to be hospitalized during the time he was on dialysis.

My dad passed away at 62 years of age. His heart just stopped beating; no massive cardiac event. He lived close to 22 years longer then his doctors had expected. I suspicion this extra 22 years of life was due in great part to his adherence to his treatment plan as well as his sense of humor and great attitude.

Key points:

1. Work closely with your doctors; do what they say.

2. Live in the moment; each day is such a wonderful gift.

3. Hope for the best but prepare for any inevitability.

4. Teach your children how to live well with a serious chronic medical condition; this is one of the best gifts you can give them.

[cs65 NKF Ambassador]

Hello! Yes, I have ADPKD which was diagnosed at age 50. I had had borderline high blood pressure since I was about 30 and my PKD was found by ultrasound following my physical. I am now 67 and it took about 15 years before I had to start dialysis. PKD can have a slow progression, but once you get to stage 4 it does seem to progress more rapidly. I think I knew about it since stage 2 or 3. My nephrologist actually delayed me starting dialysis a couple times since I showed so few symptoms of kidney failure. My gfr was down to 5 when I started dialysis, but I never had leg swelling and still don't. I have had a long time to get used to having this disease and I remember being very scared at first. The more I learned about it the more scared I got, since at that time there were no meds for slowing the progression of the cysts. Over time I have come to accept having PKD and I do my best to stay healthy by taking my meds, staying on the dialysis diet and trying to get daily exercise with our dog. I also have to be conscientious about not having too much fluid every day. In stage 4 you should follow a low salt diet and take your meds and basically lead a normal life. Try to find joy and laughter and an optimistic outlook and this will help carry you through all the challenges that will come. I also have a never give up attitude that has served me well. Also, my doctor got me started on getting onto the transplant list about 2 years before I started dialysis and I was accepted onto it the same month I started dialysis. This is definitely something you can explore now since it takes about a year to get all the testing, vaccinations, dental clearances, etc. done. You then meet with the transplant team yearly to make sure you are keeping up with all the requirements. I also have my brother to look at as an example because he also has ADPKD and had his transplant after only 3 years of dialysis about 5 years ago. Having a chronic illness like this forces you to find out what is really important in life, which is family and friends and happiness, not work or money. Take care and let us know how you're doing. ok?

[cs65 NKF Ambassador]

I also forgot to mention that I had a heart complication, too. In the fall of 2017 I developed stress related cardiomyopathy and some blockages were found in my coronary arteries. I am lucky that I could be treated with a statin, daily low dose aspirin and another med instead of having a stent. I also went to cardiac rehab and completely recovered. During this 6 month period until I was cleared by my cardiologist for major surgery I was inactive on the transplant list (meaning they couldn't call me for a transplant), but I went right back on the active list. So never give up!