I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: TiffanyJean on April 18, 2009, 02:07:53 PM
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In February 2008 Richard (my husband) and I found out that he has End Stage Renal Disease (ESRD). Richard has been through a lot over the last year; he has gone from hemodialysis to peritoneal dialysis, to having a partial parathyroidectomy with the complications of having hypocalcaemia and having a (small) grand mal tonic seizure. This has been a year of many ups and downs, some of which we are still dealing with and some of which we are starting over from the beginning. We recently found out that the family member who was a potential donor can not donate for medical reasons.
Our story really started our Jr. year of high school in 2001, when we first got together. We had a long distance relationship (built a very strong friendship) after graduating high school in 2002, Richie moved to be closer to me; the weather was not to his liking (he's from Hawaii, I was from Northern Cal.) so after a year he moved back home and finished college. I moved out to Hawaii in 2005 and in early 2007 we got engaged.
We were married November 9, 2007. December Richie came down with a cold, that just would not go away, like a lot of people he thought it would be fine and would just go away on its own in due time. January he started to have a pain in his jaw** when he would chew; he blamed it on all the ice he had been 'eating'. February 2008 we had got to see The Police in concert, he slept through the whole thing. His jaw pain had gotten so bad he had seen his dentist, who really couldn't find any reason for the pain. On Feb. 21 his dentist told him to go see the doctor because he just looked sickly. On Friday Feb. 22 Richie went and saw his doctor; the doctor upon seeing Richie could find nothing wrong with him but decided to order a blood test anyways. At the last minute Richie told his doctor how just going down the stairs made his heart race, how just walking around gave him shortness of breath. The doctor added a few other things on to the blood test and said "if anything comes back I'll give you a call".
Saturday February 23, 2008- our brand new life together changed. The phone rang at 7:00am, Richie had called in sick to work that morning and we were both hoping to get to sleep in a little. It was his doctor; Richie's face was ghost white, when he had gotten off the phone I asked him what he had to say. "I'm anemic, and have kidney failure and need to go to the ER as soon as possible."
Once at the hospital they were shocked that he had walked in (I had dropped him off, and gone to park the car, I had no clue what kidney failure meant.). They started running all kinds of tests, and doing x-rays, and all sorts of different things to try and figure out what happened. After several hours he was finally admitted to the hospital, where we found out that he was at End Stage Renal Disease with 5% kidney function. This was the biggest shock of our lives!
Richies numbers were through the roof, the doctors really hadn't ever seen numbers as high as his. They had said that if he had gone another few days he could have died. After a few days and starting him on a ton of pills, and giving him some extra platelets they were able to do a biopsy of his left kidney (the right was completely shrunken and not working). The biopsy showed two things, the first being that his left kidney was almost as bad as the right; and the second was that the possible cause was that he had nephrons on the outside of his kidney as well as inside, so when the kidney filtered out waste, it would filter right back in. They have speculated that he had this for most of his life, and his body would just adjust as the toxin levels rose. He was started on Hemodialysis right away, and spent a total of 1 1/2 weeks in the hospital, with the last three days on dialysis. Once released he was on dialysis 3 days a week for 4 hours. He did HD for the rest of the year, and then in December switched to PD. So far the PD is going well.
When first stating out patient HD when we went over his monthly 'report card' with the dietitian most of his numbers were still high, since he had just gotten out of the hospital, but the one number that jumped out was his PTH; 5,500 (or something like that) the dietitian thought is was a typo. It wasn't. Over the course of the year it would fluctuate between 3,000 something and 2,000 something at any given time. In about October ('08) Richie felt a hard spot (about the size of a pea) in his calf muscle just under the skin, it was tender to the touch but that was about it. We mentioned it to our nephro and she felt it and said "we'll keep an eye on it". Well by January the spot and grown to about a large grape, and had a slightly smaller one just by it; plus one about the same large grape size on his other calf muscle had popped up. Our doctor ordered immediate parathyroid surgery. We of course started to research what was going on and found out he he had secondary hyperparathyroidism; which we found will present itself in Stage 3 CKD - which who knows when that was for Richie. The doctors said he was lucky he never broke any bones, and attributed it to the fact that while growing up he drank alot of milk (Richie drank alot of liquid anyways, he would have probably four or five of the super big gulp type of cups a day - not counting the milk- which was about 2 or 3 gallons a week. The family joke has always been it would be cheaper to just by a cow. ;) ).
So with the surgery (Feb.5 09) came a whole mess of problems. The surgery thankfully went really well and they took out all but a small bit of the parathyroid glad. He spent about 10 days in the hospital trying to get his calcium stable. Once he was finally released they thought he would be fine, and would just take his calcium pills, and that he could have some of the higher calcium (phosphorus) foods. Well about 2 weeks after being released Richie had a seizure, (luckily) it happened when we were in bed getting ready to go to sleep; of course he was hooked up to the PD machine. SO after the ride in the ambulance to the hospital and getting admitted and what not, they found that his calcium was in like the 4 or 5 range. So now to present day - we have been getting his calcium levels checked over the last 2 months, and the numbers are finally starting to improve. :bandance;
From the beginning we have had the option of transplant; everyone in his family was ready to give up their kidney right then and there. Most of them are not his blood type - O; his dad, step-mom and half sister were. The transplant team selected his step-mom and up until this last week she was able; for medical (thankfully not serious) reasons she is unable to donate. So we now are starting over, from the beginning and find a donor. Two steps forward and then two steps back - seems like that's how kidney disease is anyway. :stressed;
** the pain in his jaw** turned out that it was a benign pseudo-tumor. It was removed in June '08.
So thats our story, as of now I'm very glad to have found this site, and look forward to talking to everyone, and learning from you all. :)
Much Aloha!
TiffanyJean
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Much Aloha back, TiffanyJean!
You have found the right place! Even though I'm pretty new here, I already feel like part of this wonderful family of support.
You and Richie have been through so much, but the good thing is that you have each other. I look forward to hearing from you often.
Aleta
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:welcomesign; Tiffany. What a wonderful introduction. I feel like I have know you for years :cuddle; We are a wonderful group with tons of information and even more support when you need it. Have you hubby join us and share his journey. Please read through some of the older introductions as there are some very touching stories there. Post often and again, welcome to the family. :cuddle;
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:welcomesign; Tiffany,
Richie has had a tough several years. It is great that you are there to support him. Keep up the good work and stay positive. This is a great group, very supportive and very knowledgeable. I am glad that you joined the group.
:flower; :flower;
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:welcomesign; to a wonderful family. It sounds like you two have had quite the "carnival ride"...thats what I call my life....I am so glad you are helping your husband with this, just remember to give yoursielf lots of love and care too.
:grouphug;
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hello there and welcome to IHD the best site for caregivers on the web, we hope you will enjoy your stay here and ask a lot of questions...
:welcomesign;
Epofriend, moderator
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Welcome TiffanyJean, good to have you aboard.
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:welcomesign;
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:welcomesign; I look forward to more of your posts.
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Thank you all for such a warm welcome!! I'm very excited to participate in the various discussions!! :)
Tiffany Jean