My life with PKD
A PKD buddy has been trying to get me to write about my experience and I figured it was time.
At age 21 I started on high blood pressure medications and knew I had PKD, but not diagnosed I was officially diagnosed at age 27 when I was pregnant with my second child. Before my pregnancy I had very few problems except the usual back aches and fatigue and I had 100% function. During my pregnancy I had several UTI's that lead to serious kidney infections and was hospitalized 3 times for kidney infection and kidney stones. It was a tough pregnancy. I have two children now - A 17 year old son from my first marriage and my 9 year old daughter from a relationship.
My life was probably like most young, single parents. I worked, took care of my son and went back to school for social work. It took me five years to finish that degree and it was so worth it. I wasn't followed by a nephrologist until I moved to Phoenix from a small town and the Primary doctor wasn't willing to give me maintenance blood pressure medications and referred me to my first neph. This was the first time I had any labs done and an ultrasound to measure size. I think at that time they were about 12cm longx 10cm and my creatinine was 1.0 Over the next few years I had occasional UTI's (few a year) and every year my creatinine increased .1 I didn't care much for my neph and he was very informative so I changed to a new neph in 2008. This was a great move for me. The new neph took time to listen and wanted to see my every 6 months. My creatinine stayed put at 1.1 for several years in a row and I was very excited although my kidneys continued to get larger (obviously). About five years ago I slowly started to notice my flat tummy was now a pregnant looking six months.
Two years ago is when things started to get tough. I have always dealt with naseau and fatigue, but the pain was too much to deal with so I started on Flexeril, then Ultram, then Nucynta, Percocet, increased Nucynta and then low doses of Oxycontin which has increased quite a bit over the past year. The pain started in my lower back which is likely caused by a buldging disc and also my left flank and abdomen. It has increased and it became more difficult for me to work and function. I went on short term disability in August 2011 and was being evaluated at Mayo clinic for deroofing, partial nephrectomy or transplant from a live donor. Both doctors felt the risk of surgery outweighed the possible benefits. This left with me choices on nephrectomy or transplant. I ended up losing my job a few weeks ago due to the inability to work. I really can't even take care of my home or children without assistance. My kidneys are now 20cmx13cm (but this measurement is not accurate because the machine was not able to measure any bigger then this) so the true size is not known.
Every day is a battle with this pain and fatigue. It's taken an emotional toll on my spirits and it's hard to figure out why a 36 year old is dealing with these issues. I am now working on what to do with myself next. I had a short trip to New York to see a MD/acupuncturist to get an evaluation and had two treatments of acupuncture. I have some hope that this may be helpful and it can't hurt.
This has been a strain on my kids and husband as well as my immediate family. When you have chronic pain and chronic illness, it changes you forever. The little things mean so little to me now.
I will continue to document this journey along with physical and emotional challenges that come with this journey.
Every day is a little different. On Sunday I feel decent and can get out of bed and feel somewhat normal. Today was rough and had alot of pain and it takes a toll on my spirit.
At age 21 I started on high blood pressure medications and knew I had PKD, but not diagnosed I was officially diagnosed at age 27 when I was pregnant with my second child. Before my pregnancy I had very few problems except the usual back aches and fatigue and I had 100% function. During my pregnancy I had several UTI's that lead to serious kidney infections and was hospitalized 3 times for kidney infection and kidney stones. It was a tough pregnancy. I have two children now - A 17 year old son from my first marriage and my 9 year old daughter from a relationship.
My life was probably like most young, single parents. I worked, took care of my son and went back to school for social work. It took me five years to finish that degree and it was so worth it. I wasn't followed by a nephrologist until I moved to Phoenix from a small town and the Primary doctor wasn't willing to give me maintenance blood pressure medications and referred me to my first neph. This was the first time I had any labs done and an ultrasound to measure size. I think at that time they were about 12cm longx 10cm and my creatinine was 1.0 Over the next few years I had occasional UTI's (few a year) and every year my creatinine increased .1 I didn't care much for my neph and he was very informative so I changed to a new neph in 2008. This was a great move for me. The new neph took time to listen and wanted to see my every 6 months. My creatinine stayed put at 1.1 for several years in a row and I was very excited although my kidneys continued to get larger (obviously). About five years ago I slowly started to notice my flat tummy was now a pregnant looking six months.
Two years ago is when things started to get tough. I have always dealt with naseau and fatigue, but the pain was too much to deal with so I started on Flexeril, then Ultram, then Nucynta, Percocet, increased Nucynta and then low doses of Oxycontin which has increased quite a bit over the past year. The pain started in my lower back which is likely caused by a buldging disc and also my left flank and abdomen. It has increased and it became more difficult for me to work and function. I went on short term disability in August 2011 and was being evaluated at Mayo clinic for deroofing, partial nephrectomy or transplant from a live donor. Both doctors felt the risk of surgery outweighed the possible benefits. This left with me choices on nephrectomy or transplant. I ended up losing my job a few weeks ago due to the inability to work. I really can't even take care of my home or children without assistance. My kidneys are now 20cmx13cm (but this measurement is not accurate because the machine was not able to measure any bigger then this) so the true size is not known.
Every day is a battle with this pain and fatigue. It's taken an emotional toll on my spirits and it's hard to figure out why a 36 year old is dealing with these issues. I am now working on what to do with myself next. I had a short trip to New York to see a MD/acupuncturist to get an evaluation and had two treatments of acupuncture. I have some hope that this may be helpful and it can't hurt.
This has been a strain on my kids and husband as well as my immediate family. When you have chronic pain and chronic illness, it changes you forever. The little things mean so little to me now.
I will continue to document this journey along with physical and emotional challenges that come with this journey.
Every day is a little different. On Sunday I feel decent and can get out of bed and feel somewhat normal. Today was rough and had alot of pain and it takes a toll on my spirit.
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