"Impressive Recovery, Difficult to Explain"

"Impressive Recovery, Difficult to Explain". Those are the words my Nephrologist wrote in my medical chart after seeing me on Friday the 10th. To me those are beautiful, amazing words! Praise be to God!!

Let me explain.... The last three weeks I have been feeling so much better between dialysis sessions. Throughout this time I have noticed several positive changes physically as well. One was that I was having very little to no visible swelling (due to kidney failure, fluid will build up in between dialysis treatments causing visible swelling usually in the feet, hands, etc). The second is that my body was producing urine like it used to before my kidneys failed (One of the functions of your kidneys is to produce urine and the worse your kidney function, the less urine your body produces). I started wondering if my kidney function was getting better so I called my Doctors office last week and requested a test to see what my current kidney function is. When the results came in I went to see my Doctor. He said to me "well, your kidney function is better. But the question is why is it better? I don't understand why its better." I couldn't help myself, I told him I knew why! "God is healing me!" I must say it was an uncomfortable silence after I uttered those words. His expression didn't change and my heart dropped a little. But we moved on in the conversation and he told me he wants me to stay on dialysis (although I am going from 3 sessions to two a week) and do another test in two weeks to see how my kidneys are functioning then.  
One month ago my Creatnine was 5.70, as of Tuesday of last week my Creatnine was 3.47 (which takes me from stage 5 to stage 4)! Before I started dialysis my GFR (glomerular filtration rate) was a 9 (anything under 15 is considered renal failure). Mine is now 28 (normal is 60)!!
I am giving the praise to God but we are also praying that God will continue to heal me. I'm not out of the woods health wise as stage 4 is still considered critical but I feel that just having these last 3 weeks where I have been feeling better is a miracle itself and I am thankful for that!

And if you are wondering how I know what was written in my medical chart... well... it is my medical chart and all you have to do is ask the right person. :)

Still on Hemodialysis

At the end of May I posted about the peritoneal dialysis fluid leaking through a hole in my diaphragm underneath my right lung. I haven't posted much since then because frankly I've been on a roller coaster physically. Right before leaving the hospital on May 25th my Nephrologist took me off of Peritoneal Dialysis and arrangements where made for me to start hemodialysis (part of that process was having an IJ catheter placed into the main artery that goes directly to my heart).
(You can check out the post here. )  For two weeks after my hospital stay I did hemodialysis exclusively. Then about mid June my Nephrologist decided it was time to start adding peritoneal dialysis back slowly. We started at 1000 liter fills for a week, then 1500 liter fills for a week, each week followed up with a chest xray. Then on Friday the 29th the Dr upped it to 2000 liter fills. And that's when it started.... the next morning I went to dialysis, came home and was exhausted. My mother called and said she and my step dad needed help at the garden so we packed up the family and headed over there. I picked raspberries for about 30 minutes then couldn't stand to be on my feet anymore. I went to the van and slept until everyone was done. We went home and I took some pain pills and went to bed. The next morning I got up determined to go to church. If I remember correctly I told my 16 yr old son that I was going to church whether he had to carry me there or not. Ignore the mental picture.... lol. 20 minutes later I realized I was too sick to go. My lungs hurt, it hurt to breathe, it hurt to lean over. I was nauseous and had no energy. I slept the whole day.
Monday morning I had my scheduled xray and after hours of waiting in the Dr's office I was told what I already new.... fluid under my right lung, again. My Dr told me he wanted to take me off PD (peritoneal dialysis) for a week, take an xray next Monday and if the fluid has reabsorbed we will try again with 1700 liter fills this time. I'm praying this hole heals itself and quick. My body is exhausted. Half of 2012 is gone and I've spent the entire 6 months of it being sick. This wouldn't be so bad if I was an old single cat lady (no offense to any elderly people with chronic disease, I wouldn't want to be in your shoes either) but being a wife and mother of three kids... well, I feel like life is slipping away.
Please Lord heal this hole in my diaphragm and let me return to doing PD. I am tired of feeling sick most of the time. This post here accurately describes the symptoms and how I feel about 50-70% of the time after a hemodialysis treatment. On the flip side of it I want to be content and find a way to strive with whatever the future is. If I have to stay on hemodialysis then I pray for the patience, resilience and grace to get through every single day and to accomplish what I need to on a day to day basis.

Second Hemo Treatment

Today was my second day of hemodialysis. Saturday I had my first treatment and it went alright although it was nerve wracking with all the strange beeping on the machines. Also, one of the workers who unhooked me from the machine at the end, did not wear his mask. This is so dangerous and I've worried about it all weekend. Not worried that anything was wrong with me, but just worried because I did not stand up for myself properly. I won't make that mistake next time.

Todays treatment was a lot easier emotionally, but horrible physically. I limped out of the center at the end because I got horrible muscle cramps in my shins. I made sure to eat something right away and I was alright for about an hour then I started sweating, feeling shaky, confused and nauseous. I pretty much felt this way the entire rest of the day. As soon as we got home I crawled into bed and slept... and thats where I am headed back to in a few minutes.

Chest pain and a hospital stay - post #2

So a few days ago I posted about how and why I ended up in the hospital. Currently I have spent 4 nights in the hospital and since my last post I have had a total of 6 chest x-rays, two thoracentesis's, surgery on my left arm fistula, and a cat scan. And a lot of other issues inbetween.... lol. Over the last few days my Nephrologist tried a few 'tricks' to reduce the fluid under the lung, such as only putting one liter of fluid in my abdomen insteads of two. Unfortunatly that plan didn't work and during my thoracentesis on Thursday they pulled out one litre of fluid from under my right lung, more than what was pulled out the first time.



The current end result is that I have been removed from doing Peritoneal Dialysis (PD) and today (supposedly before noon) they are placing a direct line into my chest. This will serve as a temporary access for doing hemodialysis. In a few weeks my fistula on my left arm should be ready and then the direct line access can be removed. My Doctor is also hoping that the hole in my diaphragm (which is what has caused the fluid to leak) will heal itself over the next few weeks so that I can return to doing PD. I did talk to my Doctor and let him know that if there is anything humanly possible (including surgery) I am willing to do it so that I can keep doing PD. As I've tried to explain in other posts, although I'm not sure if I've been able to make it make sense, Peritoneal Dialysis is a lot better for me than Hemodialysis will be. With PD I have a lot more freedom, sure its an every day thing but its mainly at night and so it allows me to feel good during most days, and to spend quality time with my family. Quality as in feeling good and being active. The issue with Hemodialysis is that it is done in center and takes 4-6 hours three times a week. The process of hemodialysis is very hard on the body and patients usually spend a lot of time feeling sick. My main concern has been not being able to be the mother I want to be. I want to continue to teach my children at home and that could change if I was on HD permanently.

If you would like more information on what the different types of Dialysis entail, please check out these links:
http://www.davita.com/treatment-options/choosing-the-right-treatment/what-are-my-dialysis-choices?/t/5415
http://everything.explained.at/Dialysis/

And if you've ever considered being a live donor and donating one of your kidneys to a person in need, check out these sites:
http://www.kidney.org/transplantation/beadonor.cfm
http://www.livingdonorsonline.org/kidney/kidney2.htm

Chest pain and a hospital stay

Starting Friday I noticed pain in my chest, it got increasingly worse throughout the weekend. It was hard to breathe and bending over or changing position made it more difficult to breathe and often resulted in coughing. On Saturday I called the PD (Peritoneal Dialysis) clinic and talked to one of the on call nurses. The nurse I talked to felt that the discomfort was most likely due to an overload of fluid and that I should try to remove the fluid by increasing the dialysis solution (using a higher concentrate of dialysite will draw out more fluid). During Saturday and Sunday I increased the strength of fluid, using 2.5% solution on the cycler at night and during manual exchanges. I successfully pulled off extra fluid but when I woke up Monday morning I noticed the discomfort in my chest was a lot worse and it felt like my lungs hurt. If I bent over even a tiny bit it was painful. I called the PD clinic again and talked to another nurse who told me to go to the ER. When I got there the ER Doctor ordered an EKG, blood work and a chest xray.
What they found was fluid underneath my right lung. I was taken upstairs to have a procedure called a Thoracentesis. I had to sit on the edge of a bed, a Doctor numbed my back with lidocaine and inserted a catheter between my ribs on the right side and then drew out the fluid. The process was relatively simple although highly stressful (when I don't know what to expect I get very nervous... and I really don't like needles!). One of the nurses asked me if I wanted to see the fluid and I said yes... it was a large glass jar similar in size to a quart mason jar and it was 3/4's full... for a total of 900 ml that was extracted from underneath my lung.
The fluid was submitted for tests so that they could figure out where the fluid was coming from. If the fluid is dialysite that means that there is a leak in my diaphragm allowing fluid to get under the lungs. If the fluid was not dialysite, just regular fluid than that would mean I was under fluid 'overload' and we would need to increase my dialysis.
Last night I spent the night in the hospital and this morning my Nephrologist came to visit me. He told me he thinks that the liquid is most likely dialysite that is leaking through a hole in my diaphragm. He said that this happens to only 1% of patients. They are going to keep me on PD (peritoneal dialysis) throughout the day and night (yes, another night in the hospital) and do another chest xray today and tomorrow. If more fluid builds up under the lung that will indicate to my Doctor that it is dialysite. If it is dialysite they will remove me from PD and I will have to switch to doing Hemodialysis. Since my fistula (the vein and artery that were connected in my upper arm to create a large access for doing hemodialysis) is not ready that means they will insert a catheter into the main artery in my chest for hemodialysis until the fistula is ready. The issue with the chest catheter is it has a higher risk of infection due to the fact that it is a direct access to your heart (so any bacteria traveling through it would be lethal). You also can not shower with this type of access.
The Doctor is also scheduling surgery to have my fistula brought closer to the surface of the arm (I have deep veins). Their thinking is while I am in the hospital they might as well get the surgery taken care of. Makes sense to me, although I dislike surgery and don't recover as easily as I wish I would.

I will update again when I know more. In the mean time we are praying for complete healing and I am trusting the Lord to take care of me!

The Potassium Supplement Has Arrived

A few days ago I posted my losing battle with potassium. After several weeks of struggling to get my potassium levels to an acceptable range I finally admitted defeat and told my nurse I would take the supplement. Thanks to the magic of the phone and mailed prescriptions, that supplement has arrived, already. What I was expecting was a pill that I would take once or twice a day along with my other rapidly expanding array of meds. Well, thats not what I got. Oh no. What I received was little packets of 'powder' that say to add to water and take..... FOUR times a day! Yes, you read that right. FOUR times a day. Someone please tell me how a busy mother of three who has a horrible memory to begin with is going to take a supplement four times a day? I honestly cried when I read those instructions... but it was  a rough day physically so I think I'm allowed the tears.

Nothing like a slap of reality to keep you on your toes....

Friday night I spent a pleasant dinner with my sister, dad and my Aunt Susan who came to visit us for the week from Boise, Idaho. When I got home in the evening it was pretty late and I went to hook up to the cycler (dialysis machine) for the evening. When I walked into the room, my husband had set up the machine for me and it was all ready to go. Right as I was about to start the hook up process (this includes proper hand washing procedures, putting on a mask, using hand sanitizer, etc) I noticed that one of my cats was sitting by the drain cord coming from the machine. Issue number one... the cats can NOT be in the room when I am doing dialysis due to the risk of infection if they decided to bite a cord. I stood there staring at the cat because I just had this odd feeling. Right then Jeremy came into the room to throw the cat out and I decided to check the cord that had been near the cat... sure enough, he had bit the cord. We removed the cat from the room (after I gave him a big talking to... yes, the cat) and my loving husband had to throw out the two bags of fluid and all the cords and set the machine up all over again (the set up process takes about 20 minutes).

I must admit I thanked God for the angels watching out for me... that was really a scary moment because I knew how serious it would have been if I had NOT seen the cat before I started the machine or if I had not checked the cord. For those that might not be aware, dialysis is a very tricky process and there is a high risk of infection. Dialysis patients can die from the infections if they aren't caught in time and/or it can cause scarring on the inside and the patient has to switch to doing hemodialysis (there are a lot of reasons why having to switch to hemo would be bad).
Once the machine was set up, I hooked up and went through the initial drain process (this is where the machine drains all fluid that is inside). After the drain, the first fill is supposed to start, but insteads an alarm went off on the machine that said "check heater line". The next 30 minutes were spent trying to figure out what on earth was wrong with the heater line. Jeremy checked every inch of cord on the machine and we couldn't find any problems. So finally I realized I had to call Baxter, which is the company that manufactures the machine. Lucky for us they have 24 hour staff to answer and troubleshoot any problems. The gentleman on the phone was very friendly and walked me through the process of checking the cords and trying several different things. Finally he determined that we needed to.. start all over... again. So for the third time that night, my sweet, loving husband set up the machine for me. It wasn't until midnight that I was finally able to crawl into bed and sleep.