Today another minor surgery

So today I head to the hospital once again for another 'minor' surgery related to dialysis. This time they are removing the peritoneal dialysis catheter in my abdomen and the IJ catheter in my neck. It is true that I have decided to not pursue PD (peritoneal dialysis) any further. There were so many complications over the last 6 months with the fluid leaking into my lung multiple times. The next option was to see a thoracic surgeon about having the hole/leak repaired surgically! Yikes, something tells me that wouldn't be classified as a 'minor' surgery... but you never know!
About two months ago my Nephrologist changed my hemodialysis schedule from the normal three times a week to only two times a week. I'm sure that change has played a huge part in my decision to stay on hemodialysis. Two times a week is sooo much better than three, it gives me time to recover, breathe and live a normal life for a few days in between treatments. Where as three times a week was only time to recover from the treatment and then go right back, it consumed me mentally and physically. Of course the only reason I can do two times a week is because my kidneys are functioning well enough that two treatments does the job. Thank you God!
So heres to hoping that todays minor surgery goes well, that I won't react badly to the anesthesia when waking up, that I won't have to stay overnight in the hospital (unless I need it... there is something good to be said for those electric hospital beds right after having abdominal surgery). Oh and I am requesting they do NOT give me the anti-delirium medication this time! Sure, it kept me from freaking out when waking up (I am never aware of these episodes, only the limited information they tell me after), but then I threw up all evening long. Yuck, no thank you!

 

Depression and Illness

As a teenager I suffered from severe depression. Some people may know that fact about me, but others may not. I was a very angry, lonely, depressed teenager with low self esteem. As I got older though, and especially after I became a mom the first time, the depression left. I think that for me, being a mother gave me a real reason to live. Life wasn't just about me anymore... although it never should have been just about me to begin with but back then I didn't have the relationship with God I needed to have.

Since becoming ill, and starting dialysis I have heard some talk about depression and chronic illness. It is said that when someone has a severe illness such as kidney failure, cancer, etc that they go through a grieving process just like someone that has lost a loved one.

The reason I bring this all up is to say that I have not dealt with depression in years, matter of fact I never expected to have to deal with it again. But it has tried to rear its ugly head again. I know this is part of the devils plan to reek more havoc in my life. To keep me down and out emotionally and spiritually. In the last year I have suffered 2-3 bouts of depression, the good news is it was short lived, praise the Lord! Mostly just a few hours where my brain could not handle 'handling it well' anymore. The depression just came on me like a wave, choking and suffocating so I literally could not breathe. I will not go into the dark thoughts and feelings that I have dealt with during these times... just because I don't want to give voice to it. But for those of you that have suffered from depression, I'm sure you can imagine some of what I may have felt. In these instances I for whatever reason was not able to call out to God immediately, but He called out to me and when I grasped a hold of Him He didn't let me go. God is so good. He gives us grace and mercy, even when we fail miserably and make the wrong choices. One way God helped me recently was through a rogue Christian radio station. I was just searching through the stations and came across a somewhat fuzzy station I had never heard before... and have not heard since. Unlike the regular Christian radio station that usually plays so much garbage, the songs playing that day spoke to my heart and helped to bring me out of the dark. Was that God? I believe so, but even if you argue it wasn't, it sure was good timing!

If you are going through something difficult in your life, regardless of what it is, cry out to God. He will be faithful to answer you!

"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. :)

Update On The Health Front

I have found it really hard lately to do updates on my health issues. Originally one of the big reasons I started this blog was to talk about Kidney Failure and hopefully to promote the need for living kidney donors. There are thousands of people out in the world waiting for a kidney transplant and most of the public doesn't seem to understand the severity of kidney failure and the horribleness of a life spent waiting on dialysis. But while living this disease every day I find that I don't always want to talk more about it because it can bring on feelings  (such as resentment and frustration) I don't want to cater to. So if my health postings are sporadic, that might be the reason.

But to give the real update I am still keeping on... I am off peritoneal dialysis for the time being and doing my hemodialysis treatments in center three times a week. Hemodialysis is tough, I feel sick after treatments and the schedule really makes it difficult to lead a normal life. I can't make long term plans or go away for the weekend without missing a treatment. I am still believing God for his mercy and healing!

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.

I'm home!!

Four days and five nights in the hospital and I am finally *home*! I am sooo thankful to be here, spending time with my kids. Watching them play and laugh and yes fight from time to time. Hehe. We even went for a very short walk in our neighborhood and looked at our garden this evening. We have many strawberries growing!
 In the few hours I've been home my poor little Kirby has cried several times and we have laid hands on him for healing. He is having some re-accuring leg pain but so far that is the only symptom and I am continuing to believe in God for his healing touch (I wrote a post a few months back about Kirby's fevers and leg pain).
I'm thankful for my family and happy to be out of the hospital!

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.

Potassium... the battle has been lost.

One of the issues while doing Peritoneal Dialysis is that the dialysis process strips protein and potassium out of the body each time I do an exchange. Since I started dialysis I have added extreme amounts of potassium, through foods, into my diet. For example, a banana is considered one high potassium serving. I've been eating the equivalent of 4-5 high potassium servings a day. Usually I eat bananas, kiwis or potatoes as those are the easiest way for me to get my potassium.
Unfortunatly every time my nurse checks my blood for potassium it is still low. So now I have to take a potassium supplement. That is one thing I've noticed with being under constant medical care is they want to give a supplement for everything. I've also been prescribed calcitrol and I'm given an iron shot every two weeks due to anemia.
While talking to my nurse on the phone yesterday about the potassium she says to me "Well, we just need to get you a new kidney!". Yep... that would be the plan. 

How Peritoneal Dialysis Works



This is me at my 'station' in my room doing a manual exchange

I just wanted to try and give a more detailed explanation of how the dialysis process works.

There are two common types of dialysis. The one most people seem familiar with is hemodialysis. If you know someone who has dialysis three times a week in center, this is hemodialysis.  Hemodialysis can also be done at home, but more often it is done in center. This type of dialysis involves creating a fistula in the forearm (a surgeon takes a vein and an artery and sews them together to create a large access vein for the dialysis needles).

The peritoneal dialysis process uses the peritoneum in the abdomen as a membrane across which fluids and dissolved substances (such as electrolytes, urea, glucose, albumin and other small molecules) are exchanged from the blood. Fluid is introduced through a permanent tube in the abdomen and flushed out either every night while the patient sleeps (CCPD - Continuous Cycling Peritoneal Dialysis) or via regular exchanges throughout the day (CAPD - continuous ambulatory peritoneal dialysis). The primary complication of PD is infection due to the presence of a permanent tube in the abdomen.

The training process for peritoneal dialysis was stressful as there is high risk of infection if you don't use a proper sterile process. In order to do an exchange a patient needs to wash their hands for 30 seconds, put on a mask before removing the cap from the catheter, and use hand sanitizer. You also have to remove any pets from the area and close any windows (and turn off any air vents if the air is blowing).

Then you connect the the catheter to a manual exchange bag, drain the fluid that is currently inside, refill with new fluid and then disconnect the catheter. The whole process takes about 45-60 minutes.

After a week of training on the manual exchanges (CAPD) I was trained on how to use the cycler. I now hook up to this machine every night before bed time, usually about 10pm. It does an initial fluid drain, and fill, then it does three more exchanges while I sleep. The machine stops at about 7:30 am the next morning. During the day I do one manual exchange, usually sometime between 4pm-6pm.

Dialysis and Blood Sugar

Prior to starting dialysis my blood sugar levels where controlled perfectly well by diet. My A1C for the last 3 months was 5.9 which is in the normal range. Then I started dialysis.... since then my blood sugar levels are no longer controlled and my fasting sugars in the morning are high, in the 140-180 range.
Peritoneal Dialysis puts dextrose into the abdominal cavity, dextrose has glucose. The liquid works itself around (but not into) all the organs and depending on each body, the membrane absorbs the glucose differently. Generally though a days worth of dialysis treatments adds 400-800 calories. If you have tried to lose weight, or struggled with weight loss and/or diabetes, you will know that is not a good thing. Take a person that is already struggling to lose weight and pack on an extra 400-800 calories, plus throw their blood sugar out of wack and its not good.
Eventually I will just be put on medications for diabetes, because of the glucose in the dialysite solution that is pulling toxins out of my body. Win some you lose some, I guess?

The Waiting Game

My first week on Dialysis has come and gone. I can honestly say that it is a relief to be at this point. Previously it was just a waiting game, waiting for insurance, waiting for surgery, waiting for dialysis to begin. I am still waiting... waiting for transplant... which I am told can be a 3-5 year wait in the state of Washington for a non-living donor (a person that has passed away and signed their donor card or agreed to donation). However its a different sort of wait and in the mean time there will eventually be some relief from the symptoms of ESRD as the toxins are continually pulled out of my body via dialysis. I must say though that Dialysis is not a cure, it does help to remove toxins from the body but it does NOT prevent the kidneys from further damage.

Since my name was just sent in for referral I have a potentially long road ahead. In order to be officially on the list I have to meet with a transplant team and go through various tests prior to being approved for transplant. The process is the same for everyone but the results depend on the overall health of the individual.

I think it is important to spread the word regarding kidney failure and the need for living donors. When I was leaving the Northwest Kidney Center PD unit today I saw a boy about 10 yrs old who looked very sick. Children are not allowed in the PD unit... unless they are kidney patients. My heart really went out to him and I will probably never know his story, but spreading the word about the need for kidney donation may help save a life.

Please consider being a donor whether it be for someone you know or a complete stranger.
Give the gift of life!

Surgery #3 and a week of Dialysis Training

Tuesday: On March 27th I went in for a scheduled outpatient (same day) surgery. This was just a minor procedure, they cut a thin slit in my abdomen to externalize the buried catheter that was placed two weeks prior. This process was really a breeze as they gave me local anesthesia, I fell asleep, stayed asleep during the entire procedure and woke up alert and ready to go home. This was very unlike the two surgeries earlier in the month with heavy anesthesia that left me groggy and ended up in two overnight hospital stays.

Wednesday: Wednesday my husband and I went to the Northwest Kidney Center Peritoneal Dialysis training center in downtown Seattle to start my training. The training lasted five hours and pretty much consisted of my sitting in a chair, listening to a nurse explain proper procedures on doing PD at home. There is quite a process including cleaning the prep area, washing hands, using hand sanitizer, making sure all windows are closed, removing any animals from the area and basically following every step precisely to avoid risk of infection. If I skip a step or make a mistake like touching the open catheter (which is a direct line to my stomache when open) I am at high risk of infection which can lead to having to switch to hemodialysis (depending on the severity of the infection).

Thursday: Thursday morning I received my first months worth of dialysis supplies. These were delivered by Baxter (a medical supply company) in a large Penske trunk and filled *two* pallets, consisting of *72* boxes. I am told that after the first delivery on average I will get about 30 boxes a month. We will see.... we spread the boxes from the first pallet around the house into every empty nook and crany we could find and the second pallet is sitting under the carport with a tarp covering it!
Thursdays training was more hands on and I actually ended up doing a full day worth of dialysis exchanges (four exchanges when done manually). The first few times I had the fluid in my abdomen I didn't feel anything other than just a full sensation. But the last three times it has been pretty uncomfortable for the first 30-60 minutes. The solution is causing my heartburn to go out of control so I have to start taking a second prilosec a day to combat that. Also the fluid can cause a feeling of a 'stitch' or pain in my side and sometimes I feel pain moving up through my back and then eventually it just dissipates... it almost feels like the pain starts low, moves up through my stomache, my back, my limbs and then is gone.

Friday: Training on Friday was once again from 11am to 4 pm. This time we met with the nurse first, went over a few things and then I met with the dietician. The dietician went over my lab work from what was drawn on Wednesday and told me that so far all my numbers are looking good. She also explained how when a patient is on Peritoneal dialysis, they have to increase their potassium and protein intake. This information was a little confusing at first because when someones kidneys are failing (prior to dialysis) you have to go on a low protein and low potassium diet. This is because the kidneys can not process the protein when they aren't functioning properly. Once on peritoneal dialysis (it is different with hemodialysis) the dextrose/dialysite strips protein from your body so you have to compensate with a high protein diet. This is ok with me. I am happy to be able to eat high protein again and loving eating my bananas and oranges!

No More Babies.... (Dialysis and pregnancy)

This has been a very difficult weekend for me. I realized on Thursday that I just need to let go of all the baby items I've been holding on to. Our home is just too small and we are bursting at the seams. It is amazing the amount of infant and children items I have accumulated. I can tell you one thing, there is definatly something called too much garage saling. What child needs six pairs of shoes in one size, even if they only cost fifty cents a piece at a garage sale??
There is also the 'little' (sarcasm) matter of my 'broken down not going to clean those toxins out anymore lazy kidneys'. I am told by my Doctors it would be very unwise to go through another pregnancy. It would also be difficult if not impossible to get pregnant at this point if I wanted to risk it (which I don't) because once I start dialysis (which is three days away!) I have a greatly decreased chance of getting pregnant. Only one to seven percent of women of childbearing age on dialysis can get pregnant. Over 90 percent of women of childbearing age on dialysis cannot get pregnant because having kidney disease can decrease the ability to produce healthy eggs that can be fertilized. Of those that do get pregnant, 20% will end in miscarriage and 80% of dialysis pregnancies will only go 32 (out of 40) weeks resulting in a premature birth (which carries many risks to the baby).
So that and our limited room brings me to this baby item purge. I have been elbows deep in boxes and totes for the last three days. There has definatly been tears off and on. Letting go is so hard, but I'm trying to put it in God's hands. I can't control the future and although I hope and pray that I may still somehow have another baby someday... the where and when is in His hands. Birth, adoption, grandbabies? And if not... I hope that desire to want more children will go away. Because frankly I don't want to deal with the pain.

And for those of you who might be thinking "you should be grateful for the ones you have". I refuse to feel guilty for having the natural born desire God gave me to have children. I am very grateful for the children I have. But at this time it has not erased the longing for more.

Surgery and Recovery #2

On Monday March 12th I went to visit my Surgeon who had performed my surgery 10 days prior. I was having pains in my bladder and at times excruciating spasms in my lower pelvic region. Come to find out this pain was an indicator that the Peritoneal Catheter the surgeon placed in my abdomen on March 2nd was too low and was hitting my bladder and causing spasms. I was told the only thing to do was go in and 'fix it'. So two days later, on March 14th I arrived at the hospital for my second surgery in under two weeks. This time the physician also decided to try to create a fistula again, as it was not sucessful the first time.
The good news out of all of this is that the second attempt at creating a fistula has seemed to work. The new PD catheter placement seems to be fine at the moment as well. I am however in a lot of pain and feeling a bit dazed by all these incisions on my body. I now have two cuts on my left arm (one upper, one lower) and three different incisions on the right side of my abdomen. It won't be long before I join thousands of other people in being a dialysis patient.

Surgery and Recovery

On Friday March 2nd at 8am I checked into post/op for my day surgery. I must admit I wasn't as nervous as I thought I would be. Things went smoothly, I was checked in, went through the process of getting prepared for surgery, gown, vitals, EKG, hair net.... then the walk to the pre-surgery room. That wait seemed a little longer. The anesthesioligist came over and described the process to me, although I couldn't tell you now what he said other than the fact I would be asleep for the whole procedure. The Doctor came by, took a look at the veins in my left arm and made some marks on my arm. Then he asked me where my belt/pants sit on my waist and I showed him, and he told me he would make the incision under that line... wasn't that nice of him? Then came the IV and they moved me into the surgery room, I remember being moved onto the narrow table and that was it.
I woke up approximately 3 hours later with someone continously calling my name. There was a lot of talk going on around my head and I didn't quite understand it. Something about "she's not doing well", and "she's fine while shes awake and then it drops". I'm still not sure what that was all about, oxygen level perhaps? But whatever it was it got me an overnight stay in the hospital.
Once in my lovely shared hospital room the Doctor that performed my surgery came in and asked "how are you doing? Does your back hurt?". I was a little confused by that question... my back didn't hurt but then again I was full of morphine so nothing hurt, yet.When I told him my back didn't hurt he said "well then I suppose I can tell you what happened in surgery". He informed me that at some point during the surgery I started struggling, broke the straps that where holding me down and half way fell off the table before they got me back on (they most likely being the Doctor, three nurses and anesthesiologist). For some reason he didn't sound very excited about the next surgeries we have to do. I wonder why?

So what exactly did I have done and why? I don't feel like giving a big explanation because frankly I'm in pain. But I will tell you I had a catheter placed in my abdomen for doing peritoneal dialysis and that they tried to create a fistula in my arm (by sewing together an artery and vein) for hemodialysis down the road (back up). I say tried, because it didn't work. The blood isn't pulsing through and they will have to try the right arm next time unless a miracle happens (which I am praying for).

Now who wants to see pictures of my owies once the 'band aids' are off? Taking votes now!

Doctors Appointment

Good news first. I lost 7 lbs in 3 weeks! *happy dance*

Now I must admit that todays Doctors appointment was a bit of a dissapointment. Over the last week I have been feeling so much better. I had a lot of energy, I've slept less and I've actually gotten things done around the house that I hadn't done in weeks! The truth is, I believe in miracles. I believe that we have a loving God who can and will heal us, if it is His will for our lives. Unfortunatly we aren't usually given a 'heads up' on what that will is. So it is up to us to live our lives the best we can, and to walk forward in faith.... and I'm ok with that. I really am.  But I truly did think God had done a physical healing in me, until I saw the lab work today and realized that perhaps not yet. That doesn't mean He won't... and it doesn't mean that He hasn't been working in my life. After all, it is truly a blessing that I have felt so much better over the last week! I thank God for that.

So that brings me back to the reality of the matter. I won't be avoiding dialysis. I begged my Doctor for another two weeks. But insteads of two weeks of my hoping for improved labs, it will be two weeks of putting my head around the fact that in two weeks I WILL be starting dialysis. That is a good thing though because I won't fight so hard against it since I will have two weeks to get used to the idea and prepare. There are a lot of things I will have to figure out. Such as... if my husband goes back to work by the time I start dialysis, who will watch the boys for those 15-18 hours a week I will be gone? Are we going to be able to do homeschool co-op this session (starts January 21st)? How long will it take Medicare to kick in once dialysis starts (I keep hearing different things, anywhere from one month to three months)?
And oh so many more questions....

That brings me to the subject of health insurance. I still do not have health insurance. It took two months to hear back from DSHS, they finally sent me paperwork for disability insurance. I turned it in yesterday and was informed "it will take awhile to process". *sigh* As of right now we have two unpaid emergency room visits and unpaid lab work.
Due to the fact that I do not have health insurance, I will have to have an IJ catheter put in in two weeks. It will be considered 'emergency surgery'. If I had health insurance I could have had a fistula put in two months ago. The difference is that an IJ catheter is inserted into the main artery in your chest. It is considered a temporary site for dialysis due to the increased risk of infection. The most common type of dialysis is referred to as hemodialysis. Two months prior to the start of dialysis outpatient surgery is done which connects a artery to a vein (usually in your forearm) to create a larger blood vessel area, this is called a fistula.

ESRD Briefly Explained

So What Is End Stage Renal Disease?

There are some good websites out there that explain what end stage renal disease is. I am not an expert and no information here should be considered as medical advice, but I will just briefly relay some of the information I have picked up over the years.

In a nut shell, end stage renal disease occurs when your kidneys stop working. This can be a variety of reasons, often times it is caused by uncontrolled high blood pressure and diabetes. There are other causes as well, such as kidney disease. And unfortunately if a person has all three of the above conditions that can really wreak havoc on your body.  For the sake of being accurate, people can also develop end stage renal disease by injury or trauma to the kidneys or major blood loss.

The medical world tells us that end stage renal disease (ESRD) is permanent. It cannot be changed. Once someone reaches ESRD, the only way to stay alive is dialysis or transplant.  Personally I hope this isn’t true and I am researching nutrition in the hopes of improving my condition.

In my case there were several reasons that led me to end stage renal failure. As I alluded to in another post I was diagnosed with a kidney disease (also referred to as chronic kidney disease) at the age of 18. Between the ages of 31 and 33 I went from stage 2 (mild) kidney disease to stage 5 (end stage renal disease) without knowing things had gotten so bad. Sometime over the last year and a half I developed mild type 2 diabetes (mild because it is currently easy to control by eating the right foods). Also my blood pressure was high and uncontrolled for that same period of time.   

Because the kidneys filter excess fluid and waste from our blood, that process depends on healthy blood vessels. But high blood pressure damages the blood vessels in and leading to your kidneys. This leads to damaged kidneys over time.

Make sure to have your blood pressure checked and encourage your loved ones to do the same! And yes, EVEN if they don’t have health insurance!