Patients need help! Finally some is coming

Doctors don't have all the answers!

Kate's Story:

Early in her pregnancy Kate began having pain on the right side of her lower back. Her doctors brushed it off as typical pregnancy stuff until at 15 weeks pregnant Kate couldn’t take the pain anymore and had a family member bring her to the hospital.

After a long talk with the urology team, Kate ended up with a nephrostomy tube because she had a large kidney stone blocking her ureter which was already being squished by her growing baby. Once the nephrostomy was placed they sent Kate home telling her not to worry- home care will teach you everything you need to know. 15 weeks have gone by and Kate was never able to get approved by a home care company. She had to scrape by asking various doctors to spare her a few supplies to get her by until home care could take over.

It turns out local home care companies refuse pregnant patients so home care never came. The lack of patient education and supplies led to Kate’s tube getting completely blocked off and needing emergency replacement at the hospital.

Quality Life Solutions led her to Nephrostomy resources, which have been a huge help for Kate to not only learn about how to take proper care of her nephrostomy but also to have a go to place to order necessary supplies! She is now connected with over 200 other people just like her, together making each day better.

Jan's Story:

I had my initial tube placed at the beginning of January at 27 weeks pregnant. It went so well and immediately relieved a lot of pain. At the end of January my tube ended up breaking and leaking (I'm a teacher and obviously have a very active job) and had to have it replaced the next day. I went in fully confident in the team working on me and while they were in there I could hear them slightly panicking because they couldn't get a tube to reinsert. They kept pushing in and out and I could feel the whole thing and it HURT, they gave me nothing but lidocaine. They ended up taking the whole thing out because they lost access to my kidney and didn't want to overexpose my baby to too much radiation. They cleaned me up and took me back to the room where my husband and mom were waiting. I was obviously very upset, especially after being able to hear the insertion actively fail and being in an amazing amount of pain. They sent me home and told me to come back if it starts to hurt. I was home maybe 45 minutes before my husband told me we were going back because I was in so much pain. The maternity ward immediately admitted me and started giving me pain meds. Had an ultrasound where they saw no hydronephrosis. I was still in pain and the next day they came and told me 5 minutes before that I was going to be getting another nephrostomy. I told them that they better be giving me some major pain meds this time because I wasn't going to do it if they didn't. They did and I got a new hole. The insertion went well but I could tell they definitely took their time because it took much longer.

I really don't understand the lack of pain medication. I think when they find out you're pregnant it scares them and they don't know what to do with you but do it all natural. All it takes is a quick call to my OB who is in the SAME HOSPITAL. I was honestly furious with the experience and told them and they had hospital management people come in and talk to me. It was so painful and I was so sore for so long after. I'm currently 33 weeks and baby has been a champ through all of this. I have to get it replaced at 36 weeks unfortunately and I'm not looking forward to it. Wish I could just wait until baby has come but understand the need and will do anything for this child to be healthy. Just hoping for a better experience this time. I'm sorry you had such an awful experience. This is such a sucky thing to have to go through in general but not something that was on my pregnancy bingo card!

As Graydon says it, "Google searches produced nothing but ads and well-meaning medical "advice" from sources in Utah, the UK, and Canada. Then, Google popped up with a link to your website. God bless you for nephrostomyliving.org. You'll find a bit of tangible support via PayPal, but I also offer my services as a lifelong journalist, editor, author and publisher, and as a fellow nephrostomee"

We never thought it would happen to us!!

Laura's Story:

I was hospitalized 2/6-2/13 and ultimately needed a tube exchange due to infection and (accidental) partial tube removal in ER.

This was my first exchange since tube was placed 12/19.

I was only given lidocaine for the procedure, which I was OK with at the time. That’s how they placed my first tube as well. It was a different IR doctor that did the procedure this time. He told me while on the table that the previous tube was “stuck” due to calcification. I assume he just yanked it out and replaced it.

After the procedure, I was in tremendous 9/10 pain for six hours before anesthesiology could come down and sedate me to have the tube replaced again. I truly was making a fool of myself, crying and moaning in pain, but I could not help it. it was worse than any kidney stone pain, worse than being in active labor, and I’m also 34 weeks pregnant.

Turns out the doctor either didn’t put it all the way in my kidney or pushed it too far into my kidney.

Ultimately the tube was not in the right spot and caused extreme pain. While waiting for anesthesiology, I was given fentanyl and Dilaudid, which did not touch my pain. I was terrified, I thought I was actually dying. But IR was essentially gaslighting me the whole time. The doctor in question continued to tell me every hour or so that it should not be this painful and I needed to try and relax This should have been a 30 minute trip downstairs that turned into the scariest day of my life. I’m dreading my next exchange or removal.

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Some people have to have the bags stuck to their back!

Here's Karen's Story from the UK:

I was found to have ovarian cancer. Sepsis that I had after that, damaged my kidneys. Then in December 2021, my kidneys failed again, almost to the point of death! That's when I was told I would need nephrostomies for life. I really couldn't contemplate living with 2 of them. I was told the only other option was to look toward palliative care!! That frightened the life out of me, so after sitting and talking it through with the consultant, we agreed to try one nephrostomy and internal stents on the other side.

It has worked, but I still have many problems. I can't always get answers. I have no contact with anyone, except when I go for a neph change every 8 weeks. Then a urologist every 6 months or so when I'm due for stent change. My regular doctor's group has no idea of a nephrostomy, they wouldn't even change the dressing weekly. I was having to travel around 12 miles to get the dressings changed by district nurses.

I have no dedicated person or team to turn to in cases of emergencies, or even to get information. Most of what I know is from my experience of living with it all, and what I learn from online sites.

There is absolutely no support for someone living with a nephrostomy.

Quality Life Solutions, Inc., a 3-year-old nonprofit, is the only resource 'for these people', created 'by these people'.

Ryan: As I've said before, you were an incredible help to us at a time when we couldn't find answers -- your support has been priceless!

Lisa: ...the medical industry thinks they have it all worked

out but, they are missing links, and Quality-Life-Solutions definitely fills the link for patient knowledge and care once we are home and on our own.

Ari: The hospital staff was not helpful when it came to supplies. I asked about night bags and they didn't have a clue.

Received the box of your supplies yesterday- thank you so much and we are excited to try the night bags.

Janice: My husband recently got a nephrology tube in his right kidney. The Out Patient Surgery people were not very helpful with information on taking care of it. I have been watching your videos and have learned a lot.

We have been there!! We decided to make a difference!

People coming home from the hospital, simply don’t have the information they need to be confident in recovery. Doctors and nurses understand hospital life, but no medical school prepares them for the questions people have, once they get home!

Our Logo: Is designed to combine the blending concept of our mission.

First, the Caduceus represents patients that have undergone Life-Altering Medical Interventions. This is expressed with two snakes symbolizing the duality of opposites, to strike a harmony between sickness and health.

Second, the Addition of the Heart. The required care, patience, and empathy that comes from someone that has been there, willing to put themselves in a position to help the new person just arriving.

Quality Life Solutions Inc (a 501c3 nonprofit) was founded by patients for patients. It is the only nonprofit in the country that understands that the medical industry doesn't know what a person needs when they come home from a Life-Altering Medical Intervention.

We are helping over 400 people each month, and we provide this life-saving information FREE of charge. But we can't do it alone. The medical industry wants to fund medical research. The education industry wants to fund higher education. No industry has stepped up to help the patient once they get home, only patients that have "been there", or people that have experienced the lack of support for themselves or a loved one, truly understand.

"The doctors don't listen to me!"

Patients are at a loss, struggling, scared, confused. We are patients that have struggled. We feel the need to not abandon our brothers, sisters, and children.

I never thought it would happen to me!

We never thought it would happen to us!

But by the Grace of God, it hasn't happened to you!

We need your support. We are driven by patients, for patients. No one wakes up in the morning thinking they are going to need emergency surgery today, which will change their life. But It happened to all of us!

People are out there, just coming home, struggling to live their new life. Feeling alone, while they try to figure things out. They are not alone! Help us reach more people, and create the resource for a new patient.

We NEED to reach them! To let them know there is help!

They're not alone!

People that have been there, are ready to lend a hand.

Email your friends, Post this to social media, Tell your neighbor. You can make a difference. Your reposts, and your Gift matters!

Your help is needed now more than ever. Consider a monthly Gift that's easy for you, something you won't miss -

Thank you for reading this, and G-d bless you.