My Story (this story has been posted on a page of my blog [https://fighting-pkd.blogspot.com/] but I'm also sharing here.)
I'm not really sure where to begin.
PKD (Polycystic Kidney Disease) is a strong gene in my family. I don't think I was ever very surprised by having it myself. In fact, I think I always KNEW that it was part of me.
It began when I was a child, having bladder infections throughout my life and having to learn how to deal with them. I think I always realized that it was an early indicator that perhaps I didn't have healthy kidneys already. It wasn't and shouldn't have been a surprise anyway because MANY people in my family have suffered with this disease. It has been passed down through my grandmother's side and she and her brothers all suffered from it.
My father and two of his brothers also have dealt with it.
NOW, when it feels like crunch time in my life I wish I had KNOWN more and had better tools or understandings so that I could have made different choices and maybe had an easier time NOW but shoulda, coulda, woulda...does it really matter?
I only hope to endure as much of this with as much grace and dignity as I can.
Maybe, different knowledge and choices would have changed a lot and maybe it would not have. Maybe I just need to learn to make peace with the life that I am IN.
I think that people just do the best can with who they are in the now of their now. They do the best with the information they have or whatever has been given to them and that is all I am trying to do too! As things happen to me I read and research and I learn and have learned a variety of new tools for coping with and changing the lifestyle I lead so as to make better, stronger and healthier choices. It is a CONTINUOUS struggle...EVERY day.
The journey began in my twenties.
YES. I knew that I had a 50/50 chance of inheriting a hereditary disease that seems to be a VERY strong gene in my family and YES, I knowingly and willingly chose to have children. SOME people think that a person should stop the disease right then and there and NOT choose to inflict it upon anyone else but, I don't believe in it as an immediate death sentence and I DO believe in LIFE. I believe that everything happens for a reason. WHATEVER you are brought to or given in life is a journey you must learn to endure or embrace and LEARN lessons from. I don't KNOW what I am supposed to learn here but, I hope that I WILL figure it out.
When I was 21 I was already a single, divorced mom of two babies and I went into Dr. for a regular check up and found that my BP was elevated. Up until that point I had 120/80 perfect BP every time. Knowing the family history, the doctor said we would check the kidneys but not to worry it may be nothing at all. Sure enough, I had PKD. I was not surprised and I don't think my father was either but, my mom kind of lost it. I think she really hoped I'd be of the 50% that would NOT get the disease. So from that point forward to now I am NOT sorry I am here. I am NOT sorry that this is part of my life. It is only one part. Don't get me wrong, I don't LOVE it and I would much rather be healthy and without all the issues that come from BOTH sides of my family and I'm absolutely NOT looking forward to all the pains and challenges I will face forward from now but, this is only one small part of ME and ME is what is relevant here. Knowing and realizing and accepting that my heart and soul is the relevant and important part of me no matter what happens on my journey.
I am learning.
At the time I was a single mom of two babies and I was feeling tired and beat down but I just thought I was tired from being a MOM. LOL After a short adjustment period on BP meds I started to feel MUCH better and realized that it had actually been more serious than just lack of sleep from motherhood.
There are many factors and issues that plague me and have been lessons for me in this life. I struggle every day with all of them and I strive to do the best I can. Depending on what is going on with me at any given time my best is often something different every day!
When I was 25 and hubby had just turned 25 in May we met. My children were 5 and 6. It was May 31/ June 1 of 1996. My daughter turned 6 in June, my son turned 7 in July and I turned 26 in August. It was just the beginning of a beautiful supportive relationship and family. For two years we dated, eventually moved in together, planned and executed a wonderful wedding that people still say was delightfully fun! ;) and just tried to manage and enjoy family life together. Life was really very good and the answer to many hopes and dreams I had wanted to fill. We were married in April of 1998.
During this time I had gotten a job and been working part-time in a convenience store and then was looking for something more full time because we needed more financially and found an ad at the job bank for the bakery/deli owners I had worked for previous to having my oldest son. MY job! LOL
Seriously THE best job and people I have ever worked for in my entire life. They were friends not just employers and that job felt as much like home and comfort as home!
Sure enough I was hired and began working serving coffee, tea and lunch to customers among other things.
I'm not sure of the year when this started but I worked there up until Dec. of 2000 when I left to get rest before having my youngest son. A year before that I had worked up to and even after we lost the baby that came before our youngest. I had been 4 1/2 months pregnant about a week or so away from kicking! It was a very sad time and we all had to comprehend and deal with it as best we could.
Then right away again we started trying and got pregnant soon enough so that our youngest came 2 weeks early in Feb. of 2001.
During my pregnancy with him I was high risk because of BP and then developed Gestational Diabetes and was referred to my internal medicine specialist (diabetic Dr.). He took good care of me and the baby and afterwards the diabetes disappeared and I went back to normal so he suggested that I could develop Diabetes again for real later on in my forties but with good diet and exercise I could maybe avoid it too.
Unfortunately, I was probably about 34 or 35 when I did develop Diabetes (type 2) and since I already had dealt with him returned to see him and he's been taking care of me ever since.
We managed finally through a lot of trial and error to get me onto a collection of medicines that work together to keep me stable but for the longest time couldn't get BP to lower.
I told him about a few years before when I had a kidney infection and ended up in hospital for about a week and my potassium levels went dangerously low which he found surprising so he suggested a new med for BP and said it would either work REALLY well or not at all but if it did to be careful and call with any issues because it may drop very quickly and sure enough it did and I had the lowest BP I had had in many, many years! Finally! So up until I believe it was sometime in 2007 when we had a disturbingly DRUNKEN tequila birthday party that I'm quite sure caused damage to my kidneys other numbers and levels started going out of sync and the doctor decided to refer me to a kidney specialist also in Orillia.
In the first 10 minutes of conversation with Dr. Lam I understood so much more than I ever had before and decided that yes, I was going to see him and trust him to help me do whatever I could do to take care of me better. THAT has been a long, arduous journey to this point but the things the docs, nurses and dietitians say WORK and do help things get better and into focus if you follow it and do the work. They are there to HELP and they do their best! They need US as patients to also work at making the necessary changes and it has been a challenge for me but I have done my best.
Sometime in 2009 we added gout to the list of ailments and I spent the next few years being in pain and misery around Christmas time every year and once in the summer as well. I learned to stay HYDRATED and eat more fruit (mostly berries) and that has made a very huge difference but also have to take medication to help prevention as well.
I'm not sure if it was later in 2011 or earlier in 2012 when I began my insulin shots but I was upset and didn't want to have to do them at first but now am just used to it and it's not really a big problem.
Also beginning in June/July of 2012 I started Aranesp shots to help with my anemia.
So far now I just try to keep my meds, insulin and aranesp regular and on time and eat right and stay hydrated and keep track of my sugars but function and appetite are dropping so it's a bit of a struggle!
STAY POSITIVE AND FIGHT A GOOD FIGHT!
Update 2019: Well...I guess a lot has actually happened since 2012 which is when I left off, so I'll try to remember what happened when...so in Feb of 2014 I was getting ready to have my PD catheter put in and I got a cold so was delayed, so then in March of 2014 I was ready again and had my pre-admit appointment at the hospital and then...I had a stroke. (We believe it came about because I was still on birth control and it caused a stroke.) So I spent a week or so in Bracebridge hospital and then I had to recuperate at home for awhile. I can't tell you much about it except that for awhile I couldn't talk and I couldn't write my own name and I felt lucky to be alive. Eventually I got it all back (well, honestly that is not true but the deficits aren't anything anyone else would notice really) and I still feel lucky to be alive and grateful for every day that I am! SOOOOOO eventually I got a new surgery date to have my PD catheter put in on June 20, 2014. So I healed and carried on and then in Sept. of 2014 I got my tube put in (well really they just brought out the part that was buried and attached the tube to it for use) and then I endured training before I could do PD Dialysis at home. So...when I was doing dialysis at home it took awhile to get used to the machine and also to deal with other aspects of it. Eventually it just became a day to day thing but I was always tired and not feeling great and I have to admit that hemo dialysis (what I do now) is MUCH better and except for dialysis days I feel MUCH better than I did on PD (but that is just ME...everybody reacts and deals with it differently).
So going along doing my thing and all of a sudden...
I had a bowel blockage in a hernia under my belly button and as of Dec 16th 2017 I got sick to my stomach and it only got worse from there! I checked into Bracebridge hospital on the 18th (not by choice but I had to because I was very sick) and I was instructed to bring my cycler in there and do my dialysis there until Orillia could get me transferred. On the 19th I was given a tube in my nose to help suck out the stuff in my belly and help stop the puking all day. Unfortunately the tube bothered me and I still puked a time or two (excessive yuck in my belly :( ) Then on the 20th I was transferred to Orillia hospital . That evening I had emergency surgery to correct the hernia and blockage (they said they were going to take out my PD catheter and I would have to switch to Hemo dialysis) but when they did the surgery it was a simple problem and they did NOT remove the catheter after all. So I had staples in my belly, a PD catheter still attached and then they installed a permanent access line for Hemo dialysis in my chest and sent me down for 3 hrs of dialysis. At this point I still had the tube in my nose and I still hadn't eaten anything ...I hadn't eaten anything but a few crackers since Sat the 16th. I can't remember if it was the 22nd or the 23 when they started giving me liquids and I had chicken broth, jello, and tea and the chicken broth tasted like heaven! (It was just standard chicken broth you know...hospital chicken broth...) but I hadn't eaten in a LONG time by then so it tasted pretty darn good!!
I think actually they started liquids on the 23 because in the night of the 22nd my nurse let me take the tube out of my nose and I had already had two 3 hr sessions of dialysis by then so having the tube out made me feel a hundred percent better!
So I was there until Xmas eve and I had another session of Dialysis and then they allowed me to go home for Xmas!! I was very weak and didn't do any of the things that I planned for Xmas but I was at HOME with my boys and couldn't have been happier to be anywhere else!
Even pop and Denise came by to see us and say hi!
Since then I have been going back and forth to Orillia for dialysis 3 times a week. I was waiting to be able to go to Huntsville which is closer but they had to know things were all good first before they could send me. My access line was NOT very good though and as of Jan 11, 2018 I had another surgery to replace it. Without checking it I started dialysis in Huntsville on Sat Jan 13, 2018 and...my line worked!! I have been going there Tues, Thurs and Sat every week and hopefully after I see the surgeon again in Feb. I will be able to go back on PD again...
So, yes I did go back on PD for awhile at the end of Feb. 2017 but it wasn't working very well so I had to make peace with switching to hemo and travelling three times a week every week ongoing :S whatever...
In April I had to have ANOTHER line change but it STILL doesn't work very well so we set up an appointment for a graft.
On May 15 I had surgery to have the graft put in my arm. So I waited for the graft and my arm to heal for WEEKS! It was swollen a long time.
After it healed I started hemo in Huntsville in June and I've been going there ever since. There has been small issues here and there throughout the process but it's slowly working itself out. They've asked me about doing it at home but I've decided NO. I am happy to go to them, get my treatment and come home. The rest of the time is mine. Whether or not I fill it with useful things or DO useful things or waste my days watching Walking Dead marathons is my business lol but I'm just trying to appreciate the moments of my life and I'm STILL here! FIGHTING!
Because I have a graft (a loop graft) the needle on the right goes in at the top. It takes the blood out and runs it through the machine. Then the clean blood comes back in through the bottom needle and while I DO feel much better doing hemodialysis than I did doing PD dialysis, I'm always tired on dialysis days and I usually nap or at least laze around because standing up sometimes gives me a headache. My body feels achy and sore and really it shouldn't be a surprise because dialysis is like making your heart run a marathon...do I look like a person who WANTS to run a marathon?
I am grateful anyways for every day, even the dialysis days.
Most recently I have had a Fistulagram and Angioplasty
On March 23 I went to Orillia (in the midst of this Covid world so it was a very stressful day for me because I ONLY go to dialysis and home right now) to have my graft looked at with dye so they could see if it had any problems. I don't know because I didn't see because I was just laying on the table covered in towels but they checked it out, saw what problems there were and then put little balloons inside it to expand it and make it better. So then I went to dialysis because it was my usual dialysis day. So for the WHOLE treatment my BP was 230/115 or something else...they did give me a pill at the end of it to help bring it down a bit but I just basically got home had something to eat and went straight to bed. It was NOT my best day but I must say that it was an improvement over all because my numbers are better now, my clearances are better and there is no more whistle in my graft. HOPEFULLY, my graft will be good for awhile now and I don't have to repeat this day again any time soon!!
The thing is that I have found living ONE day at a time is the best way to get through them at all. Some are stressful, some are hard, some make me tired and some are really good and I'm grateful for them all.
About the author
I've gone through many things in my life and I simply want to find a moment now and then to share the struggle, the journey and some of the achievements (though I am VERY slow). I keep on keeping on.