Living, Struggling, and Advocating with Medullary Sponge Kidney: An Updated Patient’s Perspective

 

Mary MastonIt has been a long time since I’ve written for kidneystoners.org; almost three years. Reading back through my first article, it seems like a lifetime ago. A lot of things have happened since then, and I thought it was time to update you on where I’m at in my battle and in my life. Some people don’t realize the impact that chronic illness has on every facet of your life, and there is no way to predict it or stop it really, because the illness or disease isn’t going anywhere. You just have to take it as it comes.

One of the most noticeable differences is that I’m now a single mother. Admittedly, I didn’t see that one coming. Chronic illness and pain take such a huge toll on a marriage, and most often you don’t realize it until you are right in the middle of it all. The little arguments about money, bills, household chores, and taking care of the kids build up over time. Resentment and bitterness can build up, both with the person that is sick and the person that has to pick up the slack. The sick person feels like they have no support from their partner, and the person that continues to work and take care of things feels like they aren’t being supported either and are pulling double or triple duty. It can become a toxic situation, both for the adults and the children involved.

As crazy as it sounds, I can see both sides and I honestly feel this was a blessing in disguise. I don’t have to constantly explain myself, my symptoms, and my pain to someone that doesn’t want to hear it and I feel like I can breathe a little better now. Not to say that it hasn’t been extremely challenging, and continues to be as MSK seems to be progressing yet again for me, but I don’t have any ill feelings towards my ex-husband. We still talk and interact because we have a child together and I wish him well in his new life. As for me, I may not be doing everything to the standards that a healthy mother does, but I’m getting it done and my kids are happy and healthy. They bring a smile to my face every single day and fill my heart with joy and love. They come first in everything I do and always will, and that’s all that matters.

Throughout all of this, my parents and sister have been a God send, and I am extremely grateful that they are here and really try to understand. I’m not one that asks for help. In fact, I’ve been told on several occasions that I’m more than a little stubborn. I tend to overdo myself and pay for it for days afterwards. That comes with a workaholic mentality. I’m probably trying to mentally compensate for no longer being able to physically work. That part is probably the hardest for me to accept, and just when I think I have accepted it, I do too much and find myself down again.

I absolutely hate not being able to work, but I know that I’m validated by the symptoms I have after I do something too strenuous. I also know that I’m validated by my medical records – it’s all there in black and white, and it’s literally getting worse by the day. I can only do a little bit at a time and have to rest in between doing things, which frustrates me tremendously. MSK never fails to remind me that it’s alive and kicking inside my kidneys.

I almost always end up urinating bright red blood for days afterwards and living on my heating pad in horrible pain; and it’s not like I’m signing up for any marathons, something as simple as vacuuming my floors or doing laundry causes it. Some days, like today, I can’t bend over and even walking hurts. It’s maddening, but that’s just part of it. This is something I have no control over, and that is a demon I have to face on a regular basis. Luckily, my kids are pretty good about helping around the house, especially my oldest daughter.

As far as my medical condition, I just started seeing a new Primary care doctor and Nephrologist, and they both have been fabulous so far. They’ve run just about every test known to man, I think, and they both believe that MSK causes severe pain. We are all trying to work together to come up with a treatment plan to hopefully slow the progression down a little bit, but the older I get, the worse it’s getting. There is no getting away from that reality, and they are limited in what they can do to help. I was also recently diagnosed with RTA (Renal Tubular Acidosis), as well as Cystitis, and I am starting to develop arthritis in my spine which doesn’t help with the pain. I currently have bilateral hydronephrosis, as well as at least two big stones obstructing in my right kidney and one in my left, with a number of large stones throughout both kidneys.

Both doctors say that my entire body is filled with inflammation, but I can’t/won’t take NSAIDS because my kidney function is declining, and constant steroid use opens up an entirely different can of worms, so I’m just stuck in limbo right now. The smallest stone is 4mm, and the rest are all 6mm or bigger and there are at least six, possibly more – those are the exact words of the Radiologist that read my CT scan a couple of weeks ago. None of these were there four months ago, so my kidneys have all of a sudden gone into hyper drive. I have never been able to pass anything bigger than a 5mm, and I’m assuming at some point I’m going to have to have yet another surgery. I haven’t drastically changed my diet and I don’t know why this sudden change has occurred. Nephrocalcinosis continues to build, and every couple of years I’m hit with a major stone attack that lands me in the hospital. The last time, in late 2012, I also developed Sepsis. This is the most active stones I’ve ever had at once. So far, I’m just here. Dealing as best as I can.

If I do end up having surgery, this will make #15 for kidney issues, I think. After a while you start to lose count, especially when you’ve had surgeries for other issues too like I have. The pain is pretty bad most of the time. My every day, regular pain stays at a 5 on the pain scale. If it gets to a 7 or 8, I go to the doctor or ER. I’ve been enduring it with little to no pain meds because of the crack down on prescription pain medications. I will put off surgery as long as I possibly can – again, I’m just a little bit stubborn. I refuse to let MSK get the best of me. It might get me down at times, but don’t ever count me out.

I still advocate for patients and I still push for new research. I have taken some time off in dealing with life the last few years, but MSK and patients are always on my mind and I will never give that up. It’s too important and there are too many people suffering. I’ve had to have both of my daughters treated for uti’s on several occasions and even though neither of them has been diagnosed with MSK, I don’t want them to have to go through what I have for the rest of their lives, so I will never stop.

I want to leave you with this: We are all different, and we are all in different stages with MSK. Some of you can still work, come home and clean house, cook dinner, and play with the kids. You exercise on a daily or weekly basis. Some people never have any problems at all, and that is fantastic. Others of us however, have extreme difficulties and doing even the little things is too much at times. Many of us that have complications have a lot of the same health issues in other areas as well; thyroid issues, IBS and other bowel issues, female issues, extreme fatigue, depression, etc. All of this is very difficult to deal with, especially when you are in a flare with several of them at the same time. Some of us never catch a break – ever.

Although there are not any direct correlations between these things and MSK in the medical data, I can’t help but feel it is all somehow connected. There are just too many of us with the same issues for it to be coincidence.

Unfortunately, we got the short end of the stick and it can very easily suck the life right out of you if you let it. The strain it takes on relationships, the astronomical financial burden, constant trips to the ER and hospital stays for days on end – weeks in some cases, the toll it takes on your mental health, as well as the mental health of your family, searching desperately for doctors that understand and being turned away repeatedly, etc. All of this can be too much.

I want you to know that you are not alone. You are stronger than you know and you CAN do this. The best part is that there are people out there that understand exactly what you are going through, no matter where you currently are in dealing with MSK. Our support group on Facebook was established in 2007 and is a lifeline for many of us. While it isn’t easy by any stretch of the imagination to live with these things, we are doing it every day. You are too; you just don’t realize it yet. We currently have 1,654 members that totally get where you are coming from and what you are struggling with daily, and we add more on a continuous basis because MSKers are seeking us out and looking for answers. They find those answers with us. You don’t have to do this by yourself, we can help you. Please reach out to us if you are struggling at: https://www.facebook.com/groups/Spongelife/.

Mary Maston
MSK Advocate

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15 Responses to Living, Struggling, and Advocating with Medullary Sponge Kidney: An Updated Patient’s Perspective

  1. jennifer Magura says:

    I am 47 years old and have lost my children, had to drop out of college @pitt for engineering due to MSK. I also have IBS and osteo and rheumatoid arthritis, tubular acidosis, polycystic ovaries, thyroid and parathyroid levels are off and I also have skeletal problems. I’ve heard many many drs tell me that I cant possibly be having pain unless my kidney is swelled like a balloon. I’ve had 33?(lost count) kidney surgeries for stones and stents in and out (sometimes worse than the stones!). My rt kidney collapsed and the left one swelled. I now have cortical atrophy and fluid on the rt kidney and will need to have it removed in a few years.
    After I lost everything since I spent so much time in the hospital, I basically lost my mind. I was depressed and in pain and homeless, so I tried to kill myself. Guess Im very hard to kill! that didn’t work so I kept trying doctors for help. I was labeled a drug addict and cut off pain pills which only led me to drugs to deal with the pain. I’ve spent the last 52 months in federal prison for pain meds. They actually dispensed the same pills to me 3x per day the whole time. Now I’m at a halfway house and went to a pain clinic who said I was lying: there’s no pain unless the kidney’s swelled. she also said I needed another dr; she wouldn’t treat me. I haven’t seen her notes, but my PCP did and he immediately started weening me off. I have an appoint in 3 weeks, but I don’t know what to do in the meantime.
    I’m in a training course for construction, and living in a halfway house. I don’t know if I’ll be able to continue mainly because of the pain. Plus there’s always the sudden infections and surgeries. That’s why my resume is horrible. I, please need a dr that understands. I’m trying to better my life and reunite with my children. I’m broke and alone and need some help so that I can live a productive life.

  2. Terri Dotson says:

    Oh my gosh I am so glad I found this site! I have suffered from kidney stones since I was 15 years old (I’m now 38) and it seems to get worse as I get older. I can’t even tell you how many different urologists I have seen over the years because I would get frustrated with their lack of knowledge/concern or their attitude of disbelief. If I had a dollar for every doctor who told me I couldn’t be having pain because the stones were still in my kidney…I would be a rich lady! I normally pass 5-6 stones per year and most of the time I don’t end up in the ER or taking any medication other than Motrin or Tylenol. The past month has been very different though. I passed two stones at once from my right kidney toward the end of December and I have passed two more from the left kidney in the past two weeks. Last week my urologist ordered an IVP and I got the news this morning. I currently have a 7mm stone partially obstructing the ureter to my left kidney so lucky me I am having ANOTHER surgery this morning. I’ve never really felt nervous or scared regarding my condition up until now, I think I had become complacent with my condition and resigned myself to the fact that this is something I just have to deal with. During my hospital stay I was told there was evidence of scarring in my right kidney and what appeared to be a cyst in my left kidney. As you all know, we know our own bodies and the normal “episode” we must endure…this time is different and I just can’t really put it into words. I’ve only been a patient with my current urologist for a little over a month but he seems to be very knowledgeable and caring about what is going on. He is also sending me to a nephrologist to find additional answers and treatment options. I do have one question that some of you in the group may have an answer to. Two of my great aunts suffered from “Brites” disease and eventually were on dialysis for several years before they died. When I’ve tried to research Brites I found it is not really a disease per se but an old term for a wide variety of kidney conditions. I mentioned this to my urologists and asked if that is what I’m going through but he couldn’t really answer my question. Are any of you familiar with this disease?

  3. Jeramie Ryan says:

    For fourteen years I have been telling my doctors that I have constant kidney pain and blood in my urine and most have acted like I am crazy! I found out I have MSK and I read all these stories and now I am so thankful. I was starting to feel crazy ! I am 32 and have passed over 30 stones and had multiple surgeries for removing and blasting stones. I can not recall how many painful stents I have had. I was wondering if anyone else has been pregnant while living with this. They told me I should not have anymore children because of the pain I was in and the amount of blood I passed through urine while pregnant. Thank you all for sharing your stories. By the way my name looks like a mans name but I am a woman :)

  4. Vivian Renick says:

    So many of you I see having a worse time out there than I do. At least I can work most of the time 2 or 3 shifts a week. Yesterday I had only a low grade temp not even 100 but I took more for pain than I usually do and slept off the headache and body aches. Usually I just take Tylenol and methocarbamol but had to add tramadol to the mix. I usually only take the oxycodone when I know I am passing a stone.

    It amazes me how many of you also deal with IBS symptoms. And with arthritis which basically can not be treated normally because that only makes the stones worse. And after having only one or two stones pass you do anything that does not make the stones worse.

    I am getting ready to have my second knee replacement done on 06/01/15 much younger than most of the residents I take care of.

    But I am so thankful that I still have some control over my life and not having the MDK control me.

    I am beginning to agree with you that all those things have some connection. I am going to throw something else out there. Were any of you told you had some birth issues. I was a month premature and yet still weighed 6 pounds and ended up being a forceps delivery. All my brothers were 9 & 10 pounds @ full term. I would guess that my mom had gestational diabetes. It was just some thoughts I had wondering if the birth process could have created some of the issues. 2 of my brothers also deal with kidney stones but have never told me that they have MDK. One will be 82 this summer and had a congenital heart defect repaired. The hole in the heart that is supposed to close at birth was just found even though he was in the army at the close of the Korean war and through a vigorous football with no problem found til now.

    Any ideas out there?

  5. sandra says:

    In 2012 I underwent a series of 4 operations for what the Dr called a large stone on my left kidney, the most painful was witout a doubt the lithrotripsy which made me have 3 blood transfusions and incredible pain. After the 4th one my Dr recommended to take a break from surgeries and stents to see better results. Little did I know the symptoms would just get worst with time ….. Sight…. I became dependant of narcotics to manage the pain and the response from my Dr became less.and.less.confident about the diagnosis. He said “ur kidney is sick and we need to remove it to avoid the stones spreading to the right one” i cried, prayed and just hoped for the best. Thanks to God a miracle happened and my kidney function ended up being better than we thought making it impossible to have it removed. In the same year, my Dr left and I was assigned a new one. Since the new Dr took over I have had no treatments on my kidney, I get my regular check up every 6 Mo the and of course like everyone else o get my regular painful uti’s. No matter how much I cried, begged, or how many appointments I booked w the Dr I have yet to receive and answer for what its wrong with me. My Dr treats me like an addict everytime I ask for pain medication, I have endheed tremendous pain for days just bc my Dr said it might be in my head or maybe a muscle or just something not related to my kidney.
    about 3 weeks ago I went for my regular check up and I heard something like.. u have a sponge kidney .. so I went home and of course googled it.. THAT was one of the best days of my life!!!! The first testimony I heard was mary’s and boy… I cried!!!! And just felt like a huge weight had been lifted of my shoulders. I felt alive again, validated and most of all not crazy!!!!
    Now I am in the process of bringing all the information I found on this website to my Dr and finally give it a name!!!!! And stop pretending like I am a crazy addict! I hope it all goes well from now on..
    thank u mary for sharing ur story!!! Although I am really sorry for what you are going trhough personally!!! I am soo happy to have found you!!! And this website!!!! I have bee waiting for about a week now to get approved access to the fb group so that I can get more information and learn to handle this situation in a better way, I hope writing my testimony gives you validation about ur symptoms and most importantly remind urself and me that we are not alone. I was before I found u!!!!! but I will never be alone again! Thank u mary for your precious gift to us “the newbies”

    Sandra H

    • Mary Maston says:

      Sandra,

      I am so sorry you have had to endure so much, and I apologize for your wait to be approved for the group. I am getting ready to do that now. All of the Admins seem to be having extreme difficulties right now, so none of us have been online much lately.

      Unfortunately, not long after this post, I had an appointment with my Urologist and he said the stones had to go. There were at least 6 total, and the biggest one turned out to be 1cm – which doesn’t sound big, but is actually HUGE. He said they would cause too much damage if they stayed. I had a bilateral ureteroscopy/laser lithotripsy with bilateral stent placement on April 20, 2015. I went home that day, but started vomiting and running a high fever (103) for the majority of the night. I couldn’t keep my meds or even water down, and was extremely weak. All I wanted to do was sleep. The following day, my sister came to check on me and forced me to go to my local ER, where it was determined that I was tachycardic, along with having a severe bladder infection and UTI. I was transported by ambulance, 41 miles back to the hospital I had my surgery at, and was in there for the rest of the week getting heavy antibiotics and pain medications. I was finally released late Friday afternoon, the 24th, and have been trying to recover since then. I have another appointment tomorrow to hopefully get these stents out, because they are driving me insane!

      In less than 24 hours, I was back in the hospital after surgery. This just goes to show how unpredictable MSK is and that things with us can change on a dime, despite our best intentions and no matter how well we follow doctor’s orders. If I weren’t pressed to go to the ER when I was; if I had waited a few hours longer, there is no doubt in my mind that it would’ve turned into Sepsis again. I was on Cipro the week before my surgery, received at least 12 bags of high powered antibiotics while in the hospital, and continued on Cipro and Keflex after I got home. I guarantee you that the infection is still there. It never goes away completely, it just goes dormant for a while. That’s just part of my battle with MSK.

      Thank you for sharing your story, and I look forward to getting to know you in the group.

      Best wishes,
      Mary Maston
      MSK Advocate

      • Barbara says:

        Hi Mary Maston my daughter has gotten kidney stones for about 4-6 yrs now from spongy kidneys. She’s been hospitalized about 10-12 times if not more for kidney stones especially on left kidney. She has had a few surgeries to remove big stones. She has 4 kids & I work full time & son in law too. So it’s hard to be with my daughter 24/7. I really don’t know what dr’s r doing for her besides nothing. So can you give me some advise as what my daughter can or should do to help her live a normal or better life. I’m tired of seeing her suffer so much at 29 yrs old. Please help any advise is helpful Thank You so much

  6. Donna Stevenson says:

    I am so proud of you Mary it’s a fantastic article and certainly allows people to understand what it’s like for MSKers. People don’t realise that even just sitting on a 9 hour flight on a plane can be so excruciating, but you would never know because we just smile through the pain.

    I think we do need more information via our physician’s and specialists, maybe even knowing who in the world is specializing in this field of Renal Medicine, because here New Zealand there isn’t anyone, its just deemed part and parcel of Renal Medicine… though having said that I cannot fault the care I have had over the past 52years. I am though aware of people with this disease who are struggling to even be seen via the Renal Department and that makes me question how well the system is working in some areas?

    Its been lovely Mary, as I have known you along time now, to find someone like me who can still see the humour and joy in things even on those rough days…as we have said before being positive is paramount with this disease, because while you are sitting there in pain…rest assured there is always someone who is worse off than ourselves, well at least that’s the way I look at things. For me I don’t let on how much pain I’m in, though Peter says he can always tell. Yeap living with this disease is all about minute by minute, hour by hour, day by day and always hopeful that things will be better tomorrow for all of us.

    I will say how sorry I am for you all in the US who struggle so terribly regarding pain meds it’s a darn CRIME !! I have been on 15ml of oxycontin for the past 6 years as it is a slow releasing drug, I take 10 in the morning and 5 at night along with 1000ml of paracetomol. I have never increased the dose !! in fact I took myself from 60ml to 15ml on my own, this allows me a BETTER QUALITY OF LIFE!!! One thing that I think a lot about is if you people in the US had CANCER would you not be given narcotics to allow you to deal with your pain and have a better quality of life, so my question to your medical teams is WHY NOT FOR MSKERS?

  7. Belynda says:

    Thank you for sharing, Mary. I read something the other day that really spoke to me. “You own everything that happened to you. You are going to feel like hell if you never write the stuff that is tugging on the sleeves in your heart–your stories, visions, memories, songs: your truth, your version of things, in your voice. That is really all you have to offer us, and it’s why you were born.” (Anne Lamott) Thank you for offering us this part of yourself. It somehow makes it a little easier knowing we aren’t alone, knowing someone else feels this way, wakes up hurting, struggles to do the every day things, has pain and blood after doing too much. There is strength in finding someone else whose journey is so similar.

  8. Mary Adams says:

    It is my hope and prayer that one day very soon a cure will be found. More research needs to be done immediately. I know from second hand experience how debilitating this disease is. My daughter Mary Maston, the publisher of this article, has and continues to suffer horribly.

  9. Ally N. says:

    Mary – thank you so much for sharing this! You have no idea how much YOUR strength, dedication, and compassion has meant to me (and so much of us) since joining the MSK group.

  10. Hollie says:

    Right on Mary! Keep on trucking, you’re one tough cookie! We have to keep fighting to have as normal of a life as possible and not get stuck rotting on the couch/bed. Thanks for writing on behalf of our growing community of “stoners”. YOU ROCK! (pun intended)

  11. Laura Bousada says:

    Thanks Mary for sharing your story and your particular insight into Msk.
    Hope you are doing as well as can be hoped.

  12. angela cole says:

    Thank you so much!! For posting this I am so greatful. I have the same exact problems and learned to keep going but thought I was alone with all the issues msk brings thank you!! I am 45 yrs old and now unable to work it also hand a big hand in destroying a 24 yr marriage my children are wonderful to me…..but now as I have gotten older and I msk has worsened food has become my enemy I am not able to eat. One minute I will be ok the next I am so nauseated and unable to eat…do you have any suggestions that may help please?

    • Mary says:

      Thank you everyone for your kind words. I sincerely appreciate you sharing your thoughts with me, and your support means the world to me.

      Angela, unfortunately nausea is a way of life for many of us, myself included. So much so that I forgot to even include it in the list of symptoms in my article. How sad is that? Sometimes it lasts for weeks at a time and it makes you feel absolutely miserable. It prevents me from eating a lot of times too. We can vomit at any given moment, and that part of it seems to happen at the worst times. I absolutely hate to be nauseous, and I’m sorry you deal with it to extremes as well. It can be caused by several things – a stone on the move, pain in general, and/or medications. Many of us try to keep prescription Zofran or Phenergan on hand because we never know when an intense wave of nausea is going to hit. Of course, it doesn’t do much good to take it if you can’t keep it down. Other things you can try are OTC meds such as Pepto Bismol, Emetrol, or Dramamine. As crazy as it sounds, some people use Benadryl and say it works. I also use a lot of ginger ale and peppermint, such as breath mints, etc. If I need something on my stomach in order to take meds, I try to eat a couple of saltine crackers, although there is no guarantee that they won’t come back up. Sprite or 7Up works for some. Others use fresh, dried, or crystallized ginger. Make sure to check with your doctor or pharmacist first to make sure whatever you want to try won’t interfere with any medications you are currently taking.

      As much as we hate to hear it, and as hard as it is when you’re nauseous, you have to keep forcing fluids so that you don’t get dehydrated. I’m not just talking about water, but something that actually replaces electrolytes such as Gatorade, etc. It doesn’t take long to get dehydrated, and that period of time shortens when the weather warms up. If you are unable to keep anything down for several days in a row, contact your doctor.

      I wish you luck, and if you haven’t already, request to join our group on Facebook. You most definitely are not alone, and we have a fabulous group of people there. Best wishes!

      Mary

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