The Caregiver's turn

Warning Warning Warning...I tend to be a bit long winded...sorry just a long long story...if you have read hubby's intro you know a bit already...

This is a my view of being a caretaker for my husband on dialysis. Terry3004 is my hubby, who has his story and so do I…

When I started typing mine out I realized I have a lot to say about Terry's condition and what all has happened. I realized it was not how I felt but just what happened. So here I sit and retype my emotional journey I have been through.

Things were very hectic for us as we started the New Year in 2005. We were planning our wedding, in March I got a very bad ear infection that had me out on medical leave for a little over a month. I turned 30 in April as well, which to this date I refuse to acknowledge, just that I am celebrating; well this year will be the 4rd Anniversary of my 29th birthday! (So I will be 33 in April) Something one of Terry's uncles taught me.

So Terry and I were just getting into being married. I was still getting used to my new last name and getting everything changed over. It was just the beginning and we were very happy. Then came the news in May when I set Terry up to see my doctor because his back was bothering him. Being the great physician she is, she did a full check up on him which included blood work. This is how we found out our lives were about to change.

A few days after his visit she called and advised that Terry needed to go see a nephrologist, for possible kidney problems, as his creatinine level was "EXTREMELY elevated". She referred him to someone. Well me being the take charge person I am(thank you to Terry's Mom to pointing this out, not a bad thing just I get things done which as she said, "I know my son needs!") I got right on it. Well let me just say this office she referred us to was just so incompetent, between never getting several faxes that our doctor sent to when they finally got it because the receptionist was out not being able to set up an appointment. I was fed up and decided I was going to find someone else. If that is how the office was run I did not want Terry being seen there. Because to me how an establishment is ran is very important.

I am a worrier and tend to think of every possible situation from good to bad, or as I say I just like to be prepared, I also am big on doing research! So I set out to find Terry the best doctor in the area and I did! Granted he could not be seen for almost 2 months, but I just knew when I found Dr. Charles Sanders that I found the right person for Terry.

During this time Terry was his calm usual self not thinking anything was wrong. So once I had the appointment booked all I could do for about a week is look at everything on kidneys. I was getting upset, thinking I am a newlywed of just a month and my husband could be in end stage renal failure. At that time just the sound of end stage meant death to me. Terry finally one night just sat me down and commanded I stop looking into it because there was no point in worrying about it and thinking what if until we knew for sure what we were dealing with. I told him that I just needed to be ready for the news. But he just said I am sure it is nothing that our doctor mentioned because Terry was taking some muscle relaxer for his back pain this could be why it was elevated. So I stopped looking at info on kidney failure, because of his reassurance that he knew his body and nothing was wrong. (I mean to look at him at that time, even now; you would never know he has anything wrong with him!)

So things went back to normal for us, I stopped looking into it and just went on our every day living. Enjoyed our vacation in June for the family reunion and just enjoying being married. Then the day finally came for us to meet with the doctor.

Dr. Sanders had more test done before he saw Terry, which included a 24 hour urine output and more blood work. So when we got there he new more clearly what we were dealing with. One of the things we had been told is Terry does have high blood pressure and that if it goes uncontrolled for long it can cause kidney damage and this could be part of it. Well when we meet Dr. Sanders we found out we were wrong, instead it was the other way around. That Terry's kidney failure was causing his high blood pressure.

So Dr. Sanders informed us that Terry's kidneys were in failing him. That because it appeared that the damage was so far gone at this point drug therapy would not help. Just sitting there listening to him my world was crashing down. All I could do was fight back the tears thinking here I am losing my husband. I pushed Dr. Sanders into giving us and estimate on when he would have to start dialysis and he said in about 2 to 5 years, but he would know better once the biopsy was done which was scheduled to be done in a week or so.

So we left the office, me in just pure defeat, here it was just 3 months into our marriage and it was good bye newlyweds hello real world. As Terry likes to say we got to the sickness part of our vows pretty fast! So after the biopsy was done, my world, and I say mine because at this time Terry really showed little to any concern about what was going on. So my world came even more crashing down when we found out just how bad it was. That his clearance was only at about 17% and his kidneys were covered in more then 85% scar tissue.

So the stage was set to get ready for dialysis to start in as little as 6 months. To this day, back then when all of this news was coming out, I still say Terry was in denial with everything that was going on. He did not look into anything on his condition, he would not change his eating habits for anything, he just continued to live as nothing was wrong with him. He would not even really acknowledge it when someone would ask, especially how he was doing. To which he would always reply "fine" but I knew better. I could already start to see the affects it was taking on him even if he could not, or if I would point something out he always had a reason as to why that happened.

So during these few months, Terry and I had a few fights about him needing to grow up and starting taking care of himself. How I did not want to lose him but with the way he was acting it was like he already gave up. Like what good would it do. Terry will say that he was never in denial, but he will at least admit he can see how it would appear to me and the rest that he was.

To make matters even worse, we lost Terry's mother right before Thanksgiving. Something we were not expecting. Just like Terry, Lynn would always say she was "fine" in regards to her health. Early in the year we found out there was something wrong with her lungs. Again just like Terry, to me she let her health be put to the side. In November she spent a lot of time in the hospital and told us that she possible had bone cancer. But never in a million years did Terry or I think we were going to lose her.

While we were at work one day we got the call there that she passed. Our worlds were turned upside down. In her passing we found out the truth, that she did have cancer. Now this is where it gets a little more interesting. To this point no one knows what caused Terry's kidney failure; he was just one of the lucky ones. There is no family history of kidney failure so it is unknown what caused it. A few things we were told is his kidney failure is usually seen in those with lupus and also that he has a high chance of this failure repeating even after getting a transplant. (Something I get to look forward too about every 15 years!) So the interesting part is the lung cancer Terry's mom had is tied to lupus as well. She was going to go for a more through lupus scan just before she passed. So this is the only thing that to this day worries me a bit if there is a possibility down the road Terry may develop lupus. Especially after a transplant when they shut down his immune system.

After losing Terry's mom, I think it all took a toll on him and he started to get sick and really show that the toxins were not being filtered out of his body. So in January we found out he would have to start dialysis soon. In February we meet with the surgeon who would put in the catheter for him to do home dialysis. In March he went in for surgery.

His first surgery was not fun. Between the staff at the hospital in that area not being helpful or doing what the doctor requested to just down right rude. To getting Terry home to turn around the next day and take him back for several days. It was not fun.

When he was discharged both times we were never given correct instructions on how to care for his wounds and that he could take a shower after 3 days. So a week after his surgery to meet with his dialysis nurse and find out how wrong that was, was news to us and explains where the infection came from in our minds.

So the first month went by with no problems until about the end of the month when Terry's exit site started to not look the greatest. Tests were done, as they kept thinking he got peritonitis. But they kept coming back negative. So we just thought the hair around the exit site was affecting it. Finally some results came back showing he had this mycobacterium infection. His doctor and nurse did not believe it was correct but because the site looked so bad he was ordered back into the hospital to have it removed and another one put in.

So this all took place in early April, right before our 1st anniversary. So Terry spent a few days in the hospital and now has another set of holes in his body from where they put this catheter. Well from the very beginning it was nothing but problems. By the time we got home and Terry was on the machine, which is done at night while we are sleeping, it was sounding about 15 alarms a night. We were not getting ANY sleep and missing a lot of work because of it. Also it just did not seem to be working, because of everything Terry put in; he was not taking it out. It was like he had a hole in the cavity that the fluid was escaping from.

We were constantly told to give it time. But we could not keep living like this, plus Terry was always running a fever now. He looked run down, pale, throwing up, tired, blue at times and always chilled. One day in May it was very bad, he started the day fine, we were out with some friends and you could just see the color drain out of him and his lips and hands turn very blue. I took him to the hospital right away.

We sat in the ER forever! We got there around 10pm and Terry swears his temperature was normal, which I don't believe it was, but I know around 2 when then checked him he still had a temp and when we finally got back in there around 4 his temperature was over 104! That night as I sat there with my husband of just over a year all I could think is I am losing him. When they confirmed his temperature was correct all I could do was sit and cry by him. I really thought it was over. I kept making him promise he was not going to leave me and he was going to fight this.

Terry & I have a lot of great family and friends, with only a few family members in this area. But as I sat with him I was so alone. I needed someone to lean on, someone to be there with me and hold my hand or give me a supportive hug. It is still hard on me and to watch him going through this with really no one around. Yes I called just about everyone in my family and friends, which helped. But there is nothing like a hug when you need it, or someone shoulder to cry on. It is sad, my Mother lives down here, but with calling her that morning, you would think she would rush to be with me, but no. My mother and I have never had that kind of relationship so I guess I should have not accepted it to start now.

As you can see it was a very hard time for me. Terry was in the hospital almost 2 weeks, with the 104 degree fever for several days and then the rest of the time still running a fever that just would not go away. They took the other catheter out and Terry was placed on hemo dialysis, with a perma-catheter put in his right shoulder.

So now once he got out it meant the adjustment of him going in-center for dialysis, what we were trying to avoid. So this meant he would only be able to work part time. Now he could have said he was not going to work at all and collect social security. But Terry is strong willed and he did not want to stop working, plus we needed the benefits and even with him working part time he would make more then he would get from social security.

So a few months went by and I got used to him doing the hemo dialysis and the hours. Yes I will be the first to say it sucks, right now he is up at 5 am every morning and there are days where he feels like crap and looks like it. I think he pushes himself too hard, but FINALLY and I really mean FINALLY Terry is taking charge of a situation. He is starting to realize what he needs to do and is doing it. But I would so much rather have him back on the home dialysis because I know how much better for him that is as well as having him here all the time.

Well since Terry had a perma catheter in around the end of September he went in to have this changed. Everything went fine he was in and out for the most part. Then a few weeks later, a morning I will never forget, I woke up to Terry telling me to call 911. As I fling out of bed I am asking him what is wrong, just as I turn on the light to see blood all over are bed and his catheter lying in the hall. So I grab the phone and order him to sit down on the floor and give him a bunch of towels to cover up the wounded with and keep pressure on it. I am running around watching him and watching for the first rescue team to arrive. Since we live about 100 yards off the street we are hard to find. Sure enough they drove by us and I had to run outside and flag them down.

Once in they tended to Terry. They were able to control the bleeding and off to the hospital he went. When we got there I found out how lucky he was. I did not know the catheter lead right into the main artery of his heart. Had that done any damage on its way out he would have bleed to death! So to me at this point, Terry has had two near death experiences. Back in May with the fever and now, I don't think he has 9 lives and I am really worried the next time may do the trick. Like they say 3rd time is the charm, which I DON'T want to be true.

Finally, Terry's antibiotics have run their course and well he wants to go back on home dialysis. I am all for that but I told him before he does I want some assurance that this infection is GONE. I swore when he was in the hospital in May that the infectious disease doctors told us that once the antibiotics are done it does not mean that the infection is gone. Now he is not infectious but with this mycobacterium that he has they are the ones that deal with it. So we meet with someone just last week. She told Terry that she wanted to watch him for the next 3 months to see if anything flared up before she would give Dr. Sanders the okay to put him on the transplant list. Terry then told her about wanting to go back on PD, home dialysis. To which she said, "You know the chance of PD working for you are slim", which this is the first I have heard of this. So of course we leave and I tell Terry that I am not sure about him going back on PD right now. But he pleads his case as to why, because if he does go back on PD they will be able to tell sooner if the infection is gone. But to me it is not worth risking his life. So it is either PD or wait 3 months and still not be fully sure. The only question I had that I did not ask if typically when you get an infection like this the 2nd time around can be worse. So knowing how bad this time was I needed to at least know if the second time could be just as bad.

So the next day Dr. Sanders was doing his dialysis rounds and Terry was able to ask him this. To which he replied it is very likely. Because in order to tell if he has the infection still they have to take fluid from his peritoneal cavity and then send it to a lab to watch and see if it grows. Well it takes 6 weeks to see if it grows!!! So by then I could be dealing with everything I went through back last year and at the same time. I have told Terry my fears, but I support his decision. It will be hard but if this is what he wants to do then I am there for him. It will be hard and I know I will be scared. I know I will need support and someone to be there. But for my husband I will do anything. I just want him to be better, feel better and be able to live a healthy and happy life off of dialysis.

So needless to say we tried PD once again....and well it failed again. So now more battle scares on him, but we at least got confirmation that the infection is gone. Well it has been a whirlwind...realizing he was not going to be able to do PD I started looking at what his other options are. I mean the last year has been a real challenge with trying to take vacations, and I know everyone in-center feels this way...but we still have not even had a chance to take our honeymoon because of everything. So I really wanted him home and found out about nxstage so he talked to his Dr. about it and that is what we planned.

Trying to make is short and sweet, Terry is now on NxStage and I am really happy to have him home everyday, but things have been a challenge getting used to everything. Also the smells etc...but in the long run it will be great being able to travel, more freedom and my husband looks great again and feels so much better.

But the new challenge is him crashing from too much fluid removed. We went great for awhile with no problems, but then just over a week ago he was just finishing up his treatment...I had an interview to get ready for and he assured me to go get ready he was fine. Well I was blow drying my hair I did not hear him calling for me...well needless to say when I walked into the living room he was slumped over in his chair, I could not find a pulse on his neck so I called 911, also forgot to mention that he was getting error messages on his machine so I was not sure if something happened...well just as I got off the call with 911, he started to come to...told me to get him water...I could not find a pulse because he was so low. Well I never wanted anything like this to happen again...I really thought I lost him. The sight of him slumped over etc. Well then just last night it happened again...well at least I was here for it and able to react faster and kept him from passing out but that was 30 minutes of fighting and feeling like I was going to lose him again. I was taking his pressures and just kept watching them slip and slip, started out at 74/44 pulse 50 to the lowest point of 60/30 with a pulse of 31. I have not been able to sleep all night and just scared. It is hard really hard to sit there and watch him and feel like I was losing him and there was nothing I could do but force him to drink water and get his saline line open, to getting error messages on the machine and the pump not running to add the fluid. Oh boy what a night....

Well as you can see, I am a very emotional person. I am a girl what can I say...LOL. I have a lot of fears and worries about everything, where he is sure it will be okay. He faithfully puts his life in his doctor's hands. To which if they truly believed this would kill him they would not put him at risk. I am just scared, I don't want to lose my husband, he is my world, my rock, my best friend and number one supporter. Without him I am have nothing.

So that is my view. A bit long but that is me…if I did it the other way it would have been double this. : Please I ask you, if you can offer any support please feel free to contact me. If you have any questions or comments please do as well. I try and be strong, but sometimes I just have to cry.

God bless you and your loved ones as everyone needs a helping hand, shoulder, hug and friend to lean on.

God bless you all!

EDITED: Removed Bold,Color and Large font - Sluff/ Admin