A journal of healing

Posts tagged ‘CKD’

A Pissy Situation: Is it really only about weight loss?

It has been four months now since I heard the news that I was stage four chronic kidney disease (CKD) and was facing a future of dialysis. The news was devastating and put me in a funk for many weeks. My reaction was to be expected and should have had better support than it did. I have discovered some very sad things about the support system out there for people with kidney disease.

The first thing I discovered was there was no local support group. I asked at the local Kidney Foundation and they said no, they did not have any physical support groups in the area. They said they offer on-line support. And there is peer mentor support through phone conversations. So I signed up for both.

The phone support was nice, as the lady I was paired with was very understanding. Her situation is nothing like mine as far as the kidney situation, but we did have other things to chat about. We did five calls and both decided that we were not going to continue them because there was not much more she could do for me. She agreed that she really was not a good choice for my situation. She is a two time transplant patient and was never overweight or diabetic. She was also born with kidney issues and had her first transplant at 17. I found that the person from the Kidney Foundation who paired us never listened to my diagnosis or my background when I was interviewed for the mentorship.

The on-line support group is also very limited. There is one person on the site who thinks he knows everything in the world about kidney disease and is as pompous as they come. Now it seems there are only about four of us who use the site regularly and it is not really helpful to me.

One of the things I posted was about trying to get some support about my diet. As expected, Mr. Kidney (his user name for the site…really) came back with a lecture about how successful he has been losing weight and not much advice for me. This is basically what I wrote:

I have a situation where I could use some help. I have the following medical issues. I am diabetic. I have psoriatic arthritis which causes me to have high uric acid. I have diverticulitis (also from the PsA). I have Stage 4 CKD with a GFR of 24 and creatinine of 2.09. I had high protein but have brought that completely down into a normal range. And I need to lose a significant amount of weight.

Here is my dilemma: I do not eat red meat at all (since 1986) and I have stopped eating for the most part chicken, turkey or fish. I do not eat tomatoes, potatoes or other CKD no-no fruits at all. My main consumption is salad and fresh vegetables. However, much to my dismay, I am having now issues with the large amount of lettuce because of the diverticulitis. I have limited bread, rice and pasta because of the carbs. I am not into lentils and do not eat beans. I stopped eating cheese for the most part because of the calories and no sugary desserts or baked goods at all. I was substituting zucchini noodles, but found out they are very high in potassium which I have to limit along with phosphorous.

I was eating a lot of cauliflower which now I have discovered is high in purines, which causes high uric acid. I limited broccoli for the potassium and also other high potassium vegetables such as any squash. I do eat eggs, but I am trying not to eat them more than three times a week and when I do, it is mostly egg whites (which is not very satisfying)

 I do count my calories and try to consume at least 900 to 1000 calories a day. I have had to add more pasta for calories which of course is counterproductive to weight loss and carb counting. I have lost 21 pounds since May and I am glad with that, but believe me, it is just a drop in a very large bucket.

Anyone have suggestions as to safe choices for food for me?

Of the four people who responded, they had nothing new to tell me. One person came back with a list of foods that are totally not acceptable for kidney disease and were high in fat and potassium. Most responses were about exercise. Hello…..this was about what I could eat.

Does anyone read?????

I am pretty frustrated with this whole process. From the first class I took with the arrogant nurse who spent her lecture time telling me about her personal diet journey to the lack of true support for newly diagnosed CKD patients.

The world is focused on diet and weight loss. And when you enter the clinical world, it becomes extremely myopic. Just recently, I read an article on a lovely lady who just died at the age of 64 from cancer. It seems that she had been seeking help for years with her symptoms and was only told about her weight issues. “Lose weight” was the only help they gave her. They did not run the proper tests on her until she pushed extremely hard and someone listened. Unfortunately, at that point, the cancer was inoperable and she was doomed.

The other thing that does come up in my reading and research is that doctors do not consider someone having kidney issues until they are in late stage or 3b kidney disease. That too was what happened to me. I should have seen a nephrologist and a renal dietician earlier. I was actually in stage 3a in 2013. My PCP doctor was also more focused on the weight and the diabetes, which is actually painfully ironic. He changed my medication for the diabetes last year and it did not work. My glucose kept climbing and he kept telling me to wait. Finally when I was having readings often over 300, I put myself back on the medication (I had saved the previous left over medicine) I was on before. But the damage had been done and my GFR reading went down to put me in Stage 4 CKD. I also put on more weight, again counter- productive. But then he gave me the referral to the nephrologist. She then gave me the referral to the renal dietician. Again, ironically, the foods that I had been eating to try to lose weight were not good for the kidney.

I will wonder for the rest of my life wonder if I had seen someone earlier if I could have saved my kidneys. Probably not since the reason for the damage is from medications for the psoriatic arthritis. Nothing like being held hostage to a bad situation either way.

But in spite of this all, I am doing better. My kidney function has stabilized for now. I am having more normal readings on my labs and actually brought my GFR up a point (which is rare). I have lost weight which make me happy but not because of appearance issues, but because I feel better. I don’t give a rat’s ass about what people think about my size.

Kidney disease is a frightening disease that affects millions of people. I feel so bad for the people who are newly diagnosed and are not computer savvy or do not like to use chat boards. I am so sorry the one they offer is so limited. The social network sites are terrible and not populated well with good information. There is an abundance of terrible and inaccurate information on foods and diet which can be potentially damaging. There is, of course, a plethora of snake oil sites which offer immediate miracle cures. There are many, many organizations out there that are reaping big bucks off of donations. I do not see it coming back to the patients however, at least not locally.

I have taken classes to be a certified Kidney Coach. I offered on the chat site to become an ambassador but was told I needed to participate longer. I am going to become a phone peer this fall and will probably seek other ways I can use my teaching background to help others. I see my nephrologist in a week and she is going to get an earful.

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A Pissy Situation part one

I have been putting this post off long enough. I wanted to tell a few people to their faces but that does not seem to be happening. I feel like I am about to burst and I need the release my blogging gives me. I have been writing about my life now for over six years and now it is time for me to write about my death. Yes, that is correct. I am coming into a phase that everyone eventually arrives at. It is all a matter of time. Mine has just been defined a little more accurately. This may seem dramatic, and it is. But I am not going to soften this because it will make it easier for others. Nope! This is about me, totally me and what I am feeling.

In 2006 I was diagnose with Psoriatic Arthritis (PsA) and Psoriasis (P). It took over two years for the diagnosis because I am fat. I went from someone who played tournament level tennis three times a week to someone whose hands were claws and could not walk. Everyone blamed the fat for the joint pain. Finally, when my hands curled up, I was sent for tests and to a rheumatologist. Oh boy, did I have inflammation. I did not develop the psoriasis like anyone else and so they misdiagnosed that as well. They said it was a form of hives and it was everywhere. Now, they know what my type of psoriasis I have.

Why did this happen? I truly believe the trauma of going through a life altering situation triggered it. I was going through a divorce after 27 years of a miserable marriage. I had to sell my house as part of the divorce and get my own place, which I did. But then I lost my job the day after I signed the mortgage. It was so terrifying for me. I only had the support of one or two good friends to get me through it. My social life had been based on my husband’s circle.

It was like a cascade of failing health thereafter. About a year after I moved in to my home, I had an episode where I might have had a mini stroke. I went to the hospital and they discovered five blood clots, including one very near my heart. I have written about this before so I won’t at this time. The diagnosis and the whole event probably saved me from the grave fifteen years ago. I have an inherited blood condition called Factor V Leiden. My blood clots too much. My father had it, his mother, and my brother has it. I was fine and have been on a blood thinner ever since. But this led to a gynecological issue which required more medical attention. But for over a year, I would bleed out during my monthly. I almost had to have a transfusion. All of this was over the course of two years.

Meanwhile, my body was revolting with inflammation. There is a strong correlation to stress and inflammation. During these years I met my now husband who moved in with his 13 year old daughter. We both went back to college and we were working a multitude of little jobs to get by. His daughter was not happy and we had to contend with her mother who would not stop interfering. We eventually shipped her off to her mother in California which was the right thing to do.

So back now to 2006: Once I was officially diagnosed with PsA and P, I was put on huge doses of methotrexate, prednisone, and Advil. About a year in, I started to have cranberry colored urine. The doctors said it was from the blood thinner. They did nothing and I stayed on the drugs. Meanwhile, I was putting on weight like crazy. Finally, a blood test revealed that my A1C was 13 and the other labs were indicating some kidney issues. They actually told me to diet. Really? I went from to low blood glucose with an A1C of 5-6 for most of the time since they tested me to 13 and its diet? I finally got to the rheumatologist who said looking at my labs, “did anyone tell you your kidneys crashed?”  They did not.

For the following years I was on just Enbrel for the PsA. They did nothing else. My glucose went back down although not where it was. Everything seemed to be ok. My physical ability was never the same however. Then I started passing kidney stones. I am talking rocks. I passed one so big it made my doctor cringe. I passed over 100 stones. I never went into the hospital. I just suffered on my own. They found five rather large ones in my right kidney and said there was nothing they could do. They were so large, they would never pass. They put me on Allopurinol finally only four years ago to help with the formation and it did help. But the damage was done.

It seems that these kidney issues are not uncommon with someone with PsA. The disease changes your blood chemistry to be more acidic, and uric acid is formed in great quantities. The stones I passed were all uric acid based. Think battery acid for piss. All of this can damage the kidney if left unchecked. I was unchecked for too long.

On top of that issue, about four years ago the Enbrel stopped working. I had to go on something new. I went through eight different highly potent biologicals in an attempt to improve my condition. They all had horrible side effects. The worse was chronic diarrhea. I had it so bad on one drug I could not drive to work without an issue. Work was only 20 minutes away. One morning I had to pull into a park and shit against a building. There was a Sherriff on the other side and if he had gotten out and walked around I would have been arrested. I exploded three times at work, once covering the bathroom that the CEO used. It was intolerable. They all made me sick and they did not help the PsA or P. I was getting covered with splotches and my hair was falling out. I lost  a lot of my mobility and started to need a cane.

In 2016, I was put on Humira. It did nothing for me and I had to use Advil to be able to walk. I was not taking big doses of Advil, but I should have been told to take none. The doctor knew I was taking it. The Humira gave me such issues that I had to see a cardiologist. They found nothing wrong and I finally demanded I stop the Humira. In 2017, I was put on an outrageously expensive shot called Stelara. My world changed immediately. The psoriasis was gone. The PsA was less and I felt like a human being again.

My labs were indicating things were not as rosy as I felt. First my A1C started to climb again. My blood pressure was getting very high. I put on weight, as I did with all the drugs. But the kidney function was declining. In September of 2017 my GFR (which is the measure of output the kidneys are functioning at) was down to 23. I had been there once before when I was passing a huge kidney stone and I got it back up to about 40. The GFR is saying that my kidneys were functioning at about 23%. Not good.

I decided I needed to change my life. I needed to destress. My job had become horrible and intolerable. I did not need it. We had been planning on my retiring anyways in another two years. I took the leap.

The next lab which was a month after I retired my GFR went up two points. I had made the right decision. But I felt like crap. I had little energy. I was short of breath on exertion, which was something I never had before. I was sleeping terribly and constantly tired. My PCP wanted me to see the nephrologist to see what she had to say. It took three months, but I finally got an appointment.

In the beginning of April my labs were God awful. I have enough medical background to know I was in deep doo doo. I had my first meltdown of what will be a series I am sure. My A1C had gone up a lot, and other readings indicated something was going on. Since I was put on the Stelara, my triglycerides were climbing and they were now three times what they were a year ago and at a dangerous level. But the worse part was my kidney GFR went back down 2 points.

I took my husband to the nephrologist appointment because I knew it was not going to be good. It was not good. I really like this doctor and had seen her way back in 2009 when I had my first issue. She told it like it is and what I am going to have to face. It was shocking to tell the truth and to face mortality is the worse feeling in the world.

This is the bottom line: I am facing dialysis. It may be in a year or less, or it may be two years. But it is going to have to happen as I will die otherwise. Once I am on dialysis, the prognosis is five to ten years. That is for someone who is healthy otherwise with no comorbidities. And yes I know, some people live for years and years on dialysis but guess what others don’t. One thing I am not tolerating is Pollyanna like remarks. I will go into more of all this in another post. Bottom line, my life has changed drastically and I have been told what my future holds.

Am I sad? Yes. Am I frightened? I am terrified. But I am going to fight like I have my whole life. Right now the goal is to preserve what kidney function I have. I am drinking sodium citrate twice a day to turn down the acid in my blood. I am taking more insulin. Because my kidneys aren’t functioning well, I am extremely anemic (which is why I am so friggin tired). I am on high doses of iron and vitamin D. I am trying as best as I can to be more physical. And I have had to change my diet drastically. I am going to see a renal dietician next week.

This is the most ironic part of all this: all these years I have been dieting on whole grains and tons of chicken and vegetables, I have been hurting my kidneys. I have to right now avoid potassium at all costs. Who knew my stables of broccoli, Brussel sprouts, darks greens and chicken were the worse things I could be consuming. In the effort to meet everyone else’s standard of looking appropriate, I was poisoning myself.  I will be going into this more as I learn about it. But am I angry about this…well yes I am.

In truth, I am very angry about the whole thing. I went to a renal class already as the nephrologist suggested it would be good for me to know what I am facing. She knows I already have done a lot of research on things but she wants me to get the truth, not the Internet truth. I am actually looking forward to seeing the dietician because for once, it won’t be about being fat. This is one thing I am going to write about because the discrimination of people of size is outrageous in the kidney world.

My life is altered completely. I am not taking crap from anyone. I am going to do what I want without guilt. I don’t think my husband fully understands, but we have talked about it and he is compassionate. That’s all I want right now as I lick my wounds and get my fierce up. I am glad I am retired as I can do as I can when I want. My future will be tethered to a machine, but for now, I am not. And I am going to treasure this time.