5/2005 = DH visits my PCP and blood work comes back showing kidney function "extremely" elavated.
7/2005 = DH dx in kidney failure, find out that kidneys covered in over 85% scar tissue and only functioning at about 17% told to start planning to go onto dialysis in the next 6 months to 2 years
11/2005 = lose DH mother to cancer, possible lupus which would explain DH kidney failure (because at this point they don't know what caused it)
1/2006 = DH numbers rapidly drop to functioning around 11% told going on dialysis within next month
3/2006 = first surgery to put pd catherter in, goes in lower abdomen into peritonel cavity.
4/2006 = INFECTION FOUND!!!! Remove first put in second.
5/2006 = dialysis not work...pd allows my DH to do it at home, overnight while we sleep, machine is erroring about 15 times a night so we were getting no sleep on top of that the fluid going in was not coming out which is not a good thing.
So at this time DH was always running fevers, looked run down, pale, blue at times, and always chilled. About mid May one evening while out, DH just took a turn for the worse. I mean you could physically see the color just drain from him to looking blue. I took him to the hospital, ER, we got there at about 10 pm, at that time DH had a normal temp, around 2 they rechecked his temp - went up to 101. Finally around 4:30 DH was brought back...he had a fever of 104!!!
He just looked like he was on his death bed, I was crying, upset, etc just too much. I mean all the errors in the ER, first wanting him to open his pd catherter in there, which would cause him to have an even worse infection to trying to get us moved to a room and telling us that transport would be there to move us, so we were moved to the er hall for over an hour. At this point I was going over 24 hours with no sleep and went up to the desk and told them to get him in the room or I will take him there myself.
To which point they got transport down there right away.
For the next few days it was touch and go, he could not break the fever of over 104 degrees. They also changed him from PD to Hemo dialysis, where he has a perma-catherter in his right shoulder. So this meant when he got out of the hospital no more home dialysis, he now needed to go to a dialysis center 3 times a week for treatment for over 4 hours each time.
It really was not fun from March to June. Between me losing jobs because I needed to be there to take care of DH and everything else now DH income will be cut because only being able to work part time.
9/06 = DH has first Perma-catherter replaced. They are only meant to be used for 4 months at a time before they have used their self life.
10/06 = DH 2nd catherter falls out one morning. Wake up to DH telling me to call 911 as it feel out. Turn on the light to see blood everywere. Thank God it was not worse then it was, we were told how lucky he was as the catherter goes into the main artery of his heart, had it done any damage he would have bleed to death. So this counts as near death # 2 on my book for him.
Because of this I lose another job, that I loved and had no warning. They told me they understood what I was going through and supported me so to go in and pick up work to take home and get fired just devestated me.
Since putting in the 3rd catherter everything has been fine. DH is almost done with his anitbiotics so he can't wait to get back on PD....this is where I have just been so depressed about...
Yesterday DH and I went to see one of the Doctors that has been dealing with the labs on this infection. The one thing I remember and I kept telling DH about is that once he finishes the antibiotics the infection may still be there. He is not contigious or anything but this infection he got is very rare and VERY hard to kill off.
So when we meet the doctor, she only thought it was about him getting cleared to be put on the transplant list. Which is something else that upsets me...and she said she wanted to watch him over the next 3 months to see how he does as they really don't have a way to test for the infection.
When DH said he also wants to go back on PD asap, she looked frazzled and said you know that after having this infection it is very possible PD won't work for you. To which DH said he knew. This is the first I have heard of this. So that has me upset. I don't want to go through what I went through last year. The doctor said they would be able to find out sooner if he did go back on PD if the infection is gone, because it will flare up again.
So all I am thinking of if the first time did not kill him this time will. And with me just doing my first IUI and then possible having to go through all of this. It is just so upsetting and really has be down. I don't want to lose my husband, he is only 30 years old and has so much to live for. I know he is positive which is good but I just don't know if I have the strength to watch him go through this again. Specially when I have no really support around. No one understands what him or I are going through.
I know I need to meet some support groups for this, but with the PCOS and Infertility part I need support here too.
Thank you for reading...I just want DH to be okay. I know how bad he wants to go back on PD and I do to...I just want more reissurance that it will work and he will be okay.
Cortney,
First of all I wanna give you a BIG HUG cyster! I am so sorry for everything you and DH have been through. I cant even imagine how overwhelmed you are feeling and dealing with PCOS on top of everything else. I want you to know that I will be praying for you and DH that everything goes well and he only gets better from here. I see you had an IUI, I hope and pray this will be the one for you, I think a baby would do you both well at this time. DH sounds like a very strong man and quite a fighter so I see him coming through with things just fine! You are a godsend for being such a wonderful wife to him and I know he knows that too. Sometimes in life we have to go through the worst to get to the best and it seems you have already been through the worst so now the best is yet to come. Keep your chin up sweetie and try and think positive although it's easier said than done. I wish you both the best and you are in my thoughts and prayers. If you ever want to talk feel free to message me, there are people who are here for you just remember that and take care of yourself!
Thank you so much Logan for the prayers. It means a lot. Yes DH is a very strong man, just sometimes I feel that he tries to hard.
Yesterday after I typed that, DH told me his doctor stopped by while he was at dialysis and he asked him if the infection flares back up if it could be worse then last time. Which his doctor said it was possible.
When DH told me this, I lost it, just told him how I felt that I would rather have him wait 3 months to see what happens before going the PD route again. DH felt that I was trying to limit him from going back on PD that he wants to do. So I just broke down, sobbing, telling him I don't want to lose him. That if this IUI cycle was successful that it would be too early in the pregnancy for me to deal with the stress of all of this. He just did not understand.
So all I could keep thinking is losing him. He left work yesterday to come home and talk...which when he got home I had cried myself to sleep. Woke up to him kissing me.
We found a happy medium to work with but I am still scared. I know how bad he wants back on PD and I want him to have his chance to get on it, just not to scarfice his life for it.
Thank you again Logan, I try to be strong most of the time and support him and he knows I do, but sometimes it is just too much and overwhelms me. It is funny how you mentioned being a gadsend for him, all his Aunt's and Uncle's that live out of state, Midwest and Texas, they tell me that all the time. That Terry is so lucky to have me and they are so grateful to God that I am here for him as i have really help him deal with a lot of things besides this and they think if I was not here Terry would be gone. Terry agrees.
Again thank you...I can use all the well wishes and prayers that you can send!
Cortney,
((((HUGS))))!!!! I have been thinking of you and DH and you both are in my prayers. I can understand your DH wanting to do what he feels is best for him right now but I also feel your pain of not wanting to lose him. His family is right, you truly are a godsend. It sounds to me that you and DH have a wonderful relationship and I can tell there is so much love between the both of you. You are both very strong and like I said I think things will only get better from here on out. I know we always have to prepare ourselves for the worst and we all do but I think right now you should prepare yourself for the best. I know it's hard not to break down everytime you see your DH because I would do the same if it were me but if you try and put your fears aside and be positive and hopeful when you are around him I think it will help him too. If he thinks you're not scared maybe he wont be as scared either and while fighting this infection the last thing he needs to do is worry. I hope this finds you better today and DH getting better also. If you ever want to talk I am here for you, you can message me anytime!!! It may be better to let it out with a friend that it would to do it in front of him. Sending lots of prayers your way. Take care of yourself!
Cortney- I can offer you some support! I am not you and have not had the exact some things happen but my dad just had a kidney transplant on the 23rd of Jan!! So good luck to you both and maybe I can help you out if you have any questions? Ill be thinking of you and wishing the best for you and yours! I know what a long road it is and how hard it is and how stupid stupid stupid hospitals are good luck with your iui! I hope you have a great DR and one that cares and is supportive!
You can talk to me PM or whatever!
Molly
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DH and I came to a compromise about this. If I am pregnant he will go in after my birthday in April to have everything done. If I am not pregnant he will do it as soon as we get back home from our anniversary trip on April 11th.
I am still not sure about it, but one thing I thought about is if either of his doctors thought it would kill him they would not let him do it. So that is something that is helping me through this right now. I want my hubby to be happy and healthy. Also if this means they will be able to clear him sooner for the transplant then I am all for it. But...there is always a but...I just worry that if it does flare back up that is another year that he will have to stay off the list extending his time in failure. They told us that once you are on dialysis for more then 3 years you never get your quality of life back as well as the chances of survival go down every year you wait. So with all of this DH has been on dialysis now 1 year, if we wait another year before he can even go on the list that is 2 years with a 2 to 5 year waiting period so he could overall wait 7 years before even getting a transplant.
We are hoping someone in his family will be able to be a living donor. The only positive thing out of waiting a few more years is his younger brother will be 18, since where he goes they won't do living donation unless at least 18.
So that is that. Again thank you for all your well wishes and your thoughts and prayers.
It really means a lot to have a great place to come and talk about this.
I can really sympathise with you and your hubby over what is going on. My mum’s been a renal patient for over 15 years spending 7 of that on dialysis into the abdomen peritoneal cavity (it’s called CPAD here in the UK)
I can fully understand how you are feeling being the loved one of a renal patient as well it really does take its toll to see someone you love be so ill.
When things can't get any worse... 
