Today was thankfully a short day. We had an appointment with our social worker at 9:30. We were running about 15 minutes late, but fortunately so was our social worker! We talked with her for almost 2 hours. She asked us all kinds of questions about our lives and families, how long I have been sick, etc. We told her about Amelia and how everything has happened so fast; how just 6 months ago we had a normal, quiet life.
We liked her alot. She was really nice, but she was also very honest and didn't sugar-coat anything. She seemed really pleased by how much support we have; she said it will make this whole process so much easier.
We talked about Medicare and what it will cover for me, and she answered some questions we had. Overall I felt it was a good meeting.
I am heading out to my boss & friend Liz's house tonight for some girl time and fun. Several of the girls from work are all going out to dinner, then we are staying the night at Liz's house to watch movies & hang out. Liz lives in Maclenny, FL, which is a fairly rural/ small country town. The BBQ joint we are going to is called the Shack by the Track. And that's exactly what it is... a little shack next to the RR tracks! They have great BBQ, and a little ice cream stand. You can eat inside or outside on the picnic tables. Seeing as it is pouring rain right now, we will probablybe eating inside. Even if the rain clears up, the skeeters will be on the prowl.
Should be a fun night; I will post pictures!
Rick will be enjoying the quiet empty house tonight. Well, empty of any other humans. He will also have our 2 large dogs, and our 3 cats. So he won't be too lonely. I think he is going out to his game room (aka the Man Cave) to shoot some pool, throw darts, and watch ESPN.
It will be good to have some time to relax after this whole week.
Have a great weekend! More to come next week.
Friday, June 27, 2008
Thursday, June 26, 2008
Mayo Clinic: Day 3
Today was fortunately not as long of a day. We are pretty tired! Today we started with the follow-up to my skin tests. They tested to see if my body had a resistance to yeast, TB, and tetanus. On Tuesday they injected a tiny amount of each into my arm, and today I went back so they could see if any of them had a reaction. The injection of the TB didn't get inflamed or do anything, which is good- it means I have never had TB, nor have I ever been exposed to it. The yeast one got a little bed red; the nurse said pretty much everyone has fought off a yeast of some sort at some time. The tetanus shot got pretty inflamed, and it is SORE. There is a tiny knot under the injection site. This is actually good as well, because my body remembered the disease from when I was vaccinated, and was attacking it where she injected it. I was pleasantly surprised, seeing as my last tetanus shot was 12 years ago in high school when I had knee surgery. Even though my body reacted to the test, I will still be given another tetanus vaccination before the surgery. The nurse saidn to put cortizone cream on the spot and it should start feeling better soon.
Our other appointment today was a surgical consult with Dr. Nguyen. He was a petite middle-aged Asian man; he had a very gentle & caring demanor about him which we really liked. Our consult lasted almost an hour; he didn't make us feel rushed, or like any of our questions didn't matter. He went over all the schematics of the surgery itself, told us in detail about all the risks, and also talked about my long-term prognosis.
He had a really cute Asian accent of some sort; I'm not sure where he was from. A few times when he was talking about finding me a really good quality kidney, he said "if we find you a really beautiful kidney" but he pronounced it "byooful keeny". It was adorable! So now we are referring to my potential donor organ as the byooful keeny.
He said he really wants to be able to find a living donor- the surgery's success is considerably better with a kidney from a living donor.
In our internet travels in the last few months, we had already learned that they leave the old kidneys in your body. Dr. Nguyen explained that removing even old, non-functional kidneys is even more traumatic to your body than a transplant. He said that over time, kidneys that have shut down completely will eventually shrivel up to about the size of a walnut.
Since I still have almost 20% of my kidney function, I asked him if this is advantageous. He said YES, absolutely- that the surgeons are pleased even if you only have 1 or 2% function left, because it still takes some of the workload and strain off the new organ.
So, the quicker we can find a living donor, the better. The more of my own kidney function that remains when I have the surgery, the better it will be for the outcome. Rick and I have been talking about some different ideas. We have a small handful of family members and close friends that we are going to test first as possible donors. If we exhaust all those options and don't have a match, we are thinking about having some Donor Drives. We are going to see if we can speak to our church congregation, and we are also going to speak at my Mom's congregation (she works & attends a pretty large Catholic parish on the Westside of Jacksonville). We will keep at it until we find someone!
Tomorrow we meet with the social worker in the morning- and that's it! Then we go back on July 2 for another full day of appointments. I am glad this week is over. We have answers to ALOT of questions that we've had for months, and while we are still really scared, we did put alot of the fears to rest.
Have a great weekend!
Our other appointment today was a surgical consult with Dr. Nguyen. He was a petite middle-aged Asian man; he had a very gentle & caring demanor about him which we really liked. Our consult lasted almost an hour; he didn't make us feel rushed, or like any of our questions didn't matter. He went over all the schematics of the surgery itself, told us in detail about all the risks, and also talked about my long-term prognosis.
He had a really cute Asian accent of some sort; I'm not sure where he was from. A few times when he was talking about finding me a really good quality kidney, he said "if we find you a really beautiful kidney" but he pronounced it "byooful keeny". It was adorable! So now we are referring to my potential donor organ as the byooful keeny.
He said he really wants to be able to find a living donor- the surgery's success is considerably better with a kidney from a living donor.
In our internet travels in the last few months, we had already learned that they leave the old kidneys in your body. Dr. Nguyen explained that removing even old, non-functional kidneys is even more traumatic to your body than a transplant. He said that over time, kidneys that have shut down completely will eventually shrivel up to about the size of a walnut.
Since I still have almost 20% of my kidney function, I asked him if this is advantageous. He said YES, absolutely- that the surgeons are pleased even if you only have 1 or 2% function left, because it still takes some of the workload and strain off the new organ.
So, the quicker we can find a living donor, the better. The more of my own kidney function that remains when I have the surgery, the better it will be for the outcome. Rick and I have been talking about some different ideas. We have a small handful of family members and close friends that we are going to test first as possible donors. If we exhaust all those options and don't have a match, we are thinking about having some Donor Drives. We are going to see if we can speak to our church congregation, and we are also going to speak at my Mom's congregation (she works & attends a pretty large Catholic parish on the Westside of Jacksonville). We will keep at it until we find someone!
Tomorrow we meet with the social worker in the morning- and that's it! Then we go back on July 2 for another full day of appointments. I am glad this week is over. We have answers to ALOT of questions that we've had for months, and while we are still really scared, we did put alot of the fears to rest.
Have a great weekend!
Wednesday, June 25, 2008
Mayo Clinic: Day 2
PHEW!! What a day. Our heads were jammed full of TONS of info today.
We started out with an abdominal ultrasound, where they scanned my kidneys, liver, pancreas, and gallbladder. The sonographer saw what she THINKS were kidney stones, but she said that they might be calcified arteries. She said that calcified arteries are not uncommon in people whose kidneys are not functioning properly. I also learned that gallstones are easy to diagnose from just ultrasound, because they are made entirely of calcium, but kidney stones are often composed of other things and do not show up very clearly on ultrasound. I will probably be sent to have a CT scan in order to determine exactly what is in there.
After that, we had 3 back to back group classes: Living kidney donors, the transplant process for the recipient, and transplant pharmacy instruction.
We learned ALOT about the living donoation process, which is an area we had many questions about.If I have to wait for a cadaveric kidney (from someone who has died or is brain dead), I will have to wait at LEAST 3-4 years. If we are able to find a living donor who matches, there is a chance that surgery could proceed in a matter of weeks. Right now, I am at the ideal time for a successful transplant- I have reached 20% kidney function, but I do not yet need dialysis.
If anyone is interested in being a living donor, please don't hesitate to ask. I have tons of info and can answer any questions or concerns you might have. You could possibly save my life!
Pharmacy instruction was a little daunting... the recipient of a kidney transplant has a very complicated an extensive regimen of medicines, many of which will have to be taken for life. We also learned how ungodly expensive these medicines are... before insurance, the average post-transplant medicines for the first year will run around $6,000-$7,000 A MONTH. Close your mouth before flies get in there.
Later in the afternoon we met with our financial advisor. This was one of the meetings we have been the most aprehensive about. The average cost for all aspects of a transplant for the first year of care (including the donor & recipient surgeries) is around $260,000. VERY scary numbers.
Our financial advisor was AWESOME and we liked her alot! She put alot of our fears to rest. She confirmed that because I have renal failure, I am elidgeable for Medicare, which will be filed first, and then my insurance through my job. We asked a ton of questions, and she put pretty much all of our fears to rest.
Our last visit of the day was for a cardiac echocardiogram, which is just a sonogram of the heart. This one was pretty cool! We got to watch my heart do it's thing, and we could see all the valves & bits & pieces all working away.
Tomorrow, we go back for follow-up to the allergy & TB skin tests they did on my arm, and we also meet with our social worker. We have lots of questions for her, too!
We are feeling more and more hopeful as we get more information. It's still hard to not be terrified though. We are facing a lifetime of doctors, pills, etc. Also, there is a very good chance that in 15-20 years, we will have to go through this surgery all over again. But, the art of medicine is advancing every day, and who knows what will be available by then.
Thanks for stopping by! More updates to come.
We started out with an abdominal ultrasound, where they scanned my kidneys, liver, pancreas, and gallbladder. The sonographer saw what she THINKS were kidney stones, but she said that they might be calcified arteries. She said that calcified arteries are not uncommon in people whose kidneys are not functioning properly. I also learned that gallstones are easy to diagnose from just ultrasound, because they are made entirely of calcium, but kidney stones are often composed of other things and do not show up very clearly on ultrasound. I will probably be sent to have a CT scan in order to determine exactly what is in there.
After that, we had 3 back to back group classes: Living kidney donors, the transplant process for the recipient, and transplant pharmacy instruction.
We learned ALOT about the living donoation process, which is an area we had many questions about.If I have to wait for a cadaveric kidney (from someone who has died or is brain dead), I will have to wait at LEAST 3-4 years. If we are able to find a living donor who matches, there is a chance that surgery could proceed in a matter of weeks. Right now, I am at the ideal time for a successful transplant- I have reached 20% kidney function, but I do not yet need dialysis.
If anyone is interested in being a living donor, please don't hesitate to ask. I have tons of info and can answer any questions or concerns you might have. You could possibly save my life!
Pharmacy instruction was a little daunting... the recipient of a kidney transplant has a very complicated an extensive regimen of medicines, many of which will have to be taken for life. We also learned how ungodly expensive these medicines are... before insurance, the average post-transplant medicines for the first year will run around $6,000-$7,000 A MONTH. Close your mouth before flies get in there.
Later in the afternoon we met with our financial advisor. This was one of the meetings we have been the most aprehensive about. The average cost for all aspects of a transplant for the first year of care (including the donor & recipient surgeries) is around $260,000. VERY scary numbers.
Our financial advisor was AWESOME and we liked her alot! She put alot of our fears to rest. She confirmed that because I have renal failure, I am elidgeable for Medicare, which will be filed first, and then my insurance through my job. We asked a ton of questions, and she put pretty much all of our fears to rest.
Our last visit of the day was for a cardiac echocardiogram, which is just a sonogram of the heart. This one was pretty cool! We got to watch my heart do it's thing, and we could see all the valves & bits & pieces all working away.
Tomorrow, we go back for follow-up to the allergy & TB skin tests they did on my arm, and we also meet with our social worker. We have lots of questions for her, too!
We are feeling more and more hopeful as we get more information. It's still hard to not be terrified though. We are facing a lifetime of doctors, pills, etc. Also, there is a very good chance that in 15-20 years, we will have to go through this surgery all over again. But, the art of medicine is advancing every day, and who knows what will be available by then.
Thanks for stopping by! More updates to come.
Mayo Clinic: Day 1
As most of you know, today we began our consultations and testing formy transplant here at the Mayo Clinic in Jacksonville, FL. I have hada number of people request an email update, so here goes!We have been told that Mayo is one of the best- seems as though thisis accurate! Everything about the facility is state of the art, andthe whole place is like a well-oiled machine. All of the staff memberswe encountered during the day were just as nice as they could be. Theywere exceedingly polite and professional. It was a very long day,though..!We arrived shortly before 7am for registration. Although many peoplewere waiting in the registration area, we were called up to the deskin no mroe than 20 minutes. We were checked in in a matter of 5minutes, and the clerk said we could head upstairs to our firstappointment, even though it was not scheuled till 8am. We got up thereat about 7:40. At 7:45 the called me back for triage, and the doctorarrived in my room at 8:02 am. We were impressed! The 8am appointmentwas with the doctor who is the senior consultant for kidney/ pancreastransplants. We went over my labs, biopsies, etc in depth, and then heexplained the whole basic process to us. After my testing & such iscompleted next week (July 2), my case will be submitted to Mayo'stransplant commitee. This comittee reviews my records and thendetermines wheter I am a suitable candidate for the surgery. Thedoctor told us that from everything he could see, I am the idealcandidate. Great news!!! Of course he said he couldn't make anypromises, which we understood. But he said that they look at manythings, including other health problems, age, and if we/ I seem likewe will be able to manage the often tedious after-care & medicineregimen. I will have to take rejection medications probably for therest of my life- there are many side effects, but he said thatimmunosuppressant drugs have advanced leaps and bounds even i just thelast 5-10 years, and the side effects are becoming more and moretolerable.We then met with the R.N. who will be our transplant clinicalcoordinator. She will be with us through the entire process; if wehave any issues or concerns, she is available to us. She said after myfinal appointments on July 2, she should have my file to the selectioncomitte that same week, and we will probably get our answer within thenext week. We are really excited- we didn't know we would be able toget all of this done so quickly.After I am approved by the committe, the donor search will begin. Mayowill then begin to screen my potential living donors, one at a time.The success rate of the surgery when using a kidney from a livingdonor is signifigantly higher, so we are hoping we will find someonewho is a match. If we cannot find a living donor, the doctor saidaverage national wait time on the list is apx. anywhere from 2-4years. We also asked the doctor about our chances of having morechildren. He said the post-surgery wait time will be at least a year(which we knew), but that it is definately very possible. It willhinge on whether my new kidney is functioning well.
Our next appointment was in the lab, for bloodwork & urine sample. Iwarned the nurse, "I am a fainter!" Unless I lay down when having myblood drawn, I usually end up on the fllord. She was very sweet, andtook me to the room which had a bed. There was a little sign besidethe door that said "Swoon Room"... She got me settled and then went toget the vials needed for the bloodwork the doctors had requested. Shecame back with two metal vial racks, both full of vials. I sort fosub-consiously figured that the Swoon Room needed restocking. I waswrong.... they were all for ME. Rick began counting them and kind oftrailed off around 16. I asked, how many are there..? He said, "I'llteell you when you're done". I got about halfway through and wasfeeling OK. Then the ceiling tiles started looking fuzzy... then thecold sweat started, and at that point I knew where all this was goingto end up! That's the point at which, if I am not laying down, I hitthe floor. I did not faint, but I did get sick. No fun!!! Rick said hewas really impressed... I asked for the final count which ended upbeing.....30 vials of blood. 30!!! And he said some of them were asbig around as his thumb and 6" long. I don't feel so bad for gettingsick!
We hit up the cafeteria as soon as we could, since I had been fastingsince 10pm the night before. It was the best bagel I had ever eaten!
After the lab work we headed upstairs for a chest Xray, which wasshort & sweet. Because everything had run so ahead of schedule, wethen had a 2 hour wait until my bone density scan. That department wasrunning a bit behind (it seemed like they were short-staffed today),and I fell asleep in the little holding tank room. The bone densityscan was pretty cool, I got to see my hop bones and spine and such.The purpose of this scan is to see what my current density is, becausethe anti- rejection drugs have a tendency to leech calcium from yourbones and they need to have something to compare to later on.
Since we ran late in radiology, we had only 8 minutes to RUN to thenext appointment, which was allergy/ infections disease skin test.They made 3 tiny marks on the underside of my forearm with marker, andthen injected substances under my skin. I have to go back in 2 daysand have them see if I reacted to anything. One of the things theytested for was tuburculosis- they said they will be able to tell if Ihave ever been exposed to TB, even if I have never gotten sick, whichI thought was interesting. The first two injections did not hurt muchat all. The last one, which was the TB test, was in the middle of theunderside of my forearm, about 3 inches down fro my wrist. I found outthat THIS IS A VERY TENDER SPOT!!! That one really hurt.
Our final appointment of the day was for an electrocardiogram, whichwas quick and easy. We headed home around 3:30pm. Long day!
Tomorrow we have to be back at 7am, and will begin the day with anabdominal ultrasound. Also on the slate for tomorrow: living donorinstruction class, post-op & pharamceutical instruction classes,meeting with the financial advisor, echocardiogram, another allergy/skin test, and finally a transplant center surgical consult- mycaregiver is required to attend this one with me.Another long day, but it looks like we will be getting LOTS ofinformation and answers to questions.
Thanks for taking the time to read all of this! We continue to betouched by the outpouring of love from our friends and family. Each ofyou has helped us!!! I will have another update tomorrow.
Our next appointment was in the lab, for bloodwork & urine sample. Iwarned the nurse, "I am a fainter!" Unless I lay down when having myblood drawn, I usually end up on the fllord. She was very sweet, andtook me to the room which had a bed. There was a little sign besidethe door that said "Swoon Room"... She got me settled and then went toget the vials needed for the bloodwork the doctors had requested. Shecame back with two metal vial racks, both full of vials. I sort fosub-consiously figured that the Swoon Room needed restocking. I waswrong.... they were all for ME. Rick began counting them and kind oftrailed off around 16. I asked, how many are there..? He said, "I'llteell you when you're done". I got about halfway through and wasfeeling OK. Then the ceiling tiles started looking fuzzy... then thecold sweat started, and at that point I knew where all this was goingto end up! That's the point at which, if I am not laying down, I hitthe floor. I did not faint, but I did get sick. No fun!!! Rick said hewas really impressed... I asked for the final count which ended upbeing.....30 vials of blood. 30!!! And he said some of them were asbig around as his thumb and 6" long. I don't feel so bad for gettingsick!
We hit up the cafeteria as soon as we could, since I had been fastingsince 10pm the night before. It was the best bagel I had ever eaten!
After the lab work we headed upstairs for a chest Xray, which wasshort & sweet. Because everything had run so ahead of schedule, wethen had a 2 hour wait until my bone density scan. That department wasrunning a bit behind (it seemed like they were short-staffed today),and I fell asleep in the little holding tank room. The bone densityscan was pretty cool, I got to see my hop bones and spine and such.The purpose of this scan is to see what my current density is, becausethe anti- rejection drugs have a tendency to leech calcium from yourbones and they need to have something to compare to later on.
Since we ran late in radiology, we had only 8 minutes to RUN to thenext appointment, which was allergy/ infections disease skin test.They made 3 tiny marks on the underside of my forearm with marker, andthen injected substances under my skin. I have to go back in 2 daysand have them see if I reacted to anything. One of the things theytested for was tuburculosis- they said they will be able to tell if Ihave ever been exposed to TB, even if I have never gotten sick, whichI thought was interesting. The first two injections did not hurt muchat all. The last one, which was the TB test, was in the middle of theunderside of my forearm, about 3 inches down fro my wrist. I found outthat THIS IS A VERY TENDER SPOT!!! That one really hurt.
Our final appointment of the day was for an electrocardiogram, whichwas quick and easy. We headed home around 3:30pm. Long day!
Tomorrow we have to be back at 7am, and will begin the day with anabdominal ultrasound. Also on the slate for tomorrow: living donorinstruction class, post-op & pharamceutical instruction classes,meeting with the financial advisor, echocardiogram, another allergy/skin test, and finally a transplant center surgical consult- mycaregiver is required to attend this one with me.Another long day, but it looks like we will be getting LOTS ofinformation and answers to questions.
Thanks for taking the time to read all of this! We continue to betouched by the outpouring of love from our friends and family. Each ofyou has helped us!!! I will have another update tomorrow.
My story
Welcome to Renal Retentive, my blog about my journey through kidney transplant. I will take a moment to bring you up to speed.
I have had high blood pressure for a few years now, but because I responded so well to the meds my primary care doctor prescribed for me (Divoan), I never really thought anything of it. He also sent me for some bloodwork which unfortunately I never got done. I used to have a terrible fear of needles. I wish now that I had done what he asked, but hindsight is 20/20.
My husband & I found out we were pregnant just before Thanksgiving '07. It was a 'sort-of' planned pregnancy, but we were beyond excited! My doctor of course switched my meds right away to something for blood pressure that was pregnancy-approved. I started on Aldomet in a low dosage. In the following 2 months, they increased my dosage a few times and it seemed to be working OK.
The first week of Jan. '08, I started feeling badly, and my blood pressures at home were really starting to elevate. By the end of that week I was consistently getting readings of around 180/120. We were pretty scared so of course we called our OB. Over the next 2 weeks, they added a couple meds to my regimen. But after those 2 weeks and I didn't really respond, my OB was very concerned. I was also spilling large amounts of protein in my urine, but seeing as I was way too early in my pregnancy for preeclampsia, she had a feeling something else was going on.
I was admitted to the hospital on Jan. 8 '08 for testing and observation. They also started me on some IV meds to try and get my BP under control. I met with a nephrologist (kidney specialist) who suspected that I either had lupus, or FSGS (focal segmental glomerulosclerosis). In order to be sure, a kidney biopsy was ordered. For the record, it was no fun!!!
The biopsy results showed no lupus, but positive on FSGS. FSGS is, simply put, kidney disease.
http://en.wikipedia.org/wiki/Focal_segmental_glomerulosclerosis
http://www.nephcure.org/Info_aboutfsgs.html
They're not really sure what causes it, it can either be genetic, or it just happens randomly. FSGS basically scars the kidneys and leaves permanant damage. My biopsy showed that my kidney function was hovering just above 20%. Turns out that my reduced kidney function is what had been causing my high blood pressures fot the last 2-3 years.
We were also told that after the baby was born, I would need a kidney transplant. Pretty scary news... Husband and I were completely overwhelmed; our whole world got turned upside-down in a matter of a few days. Everything that we had planned for our futures was now uncertain.
I left the hospital after 10 days, and was sent home on total bed rest for the rest of my pregnancy. When I was discharged, I was 13 weeks pregnant. The high risk OB told me that getting our baby here safely would depend on keeping my BP under control, but even that was not a guarantee. We found out shortly after this that we were having a girl, and we named her Amelia Grace.
When I was almost 21 weeks pregnant, I woke in the night to terrible contractions that were almost immediately back to back. Within 5 minutes my water broke; we rushed to the hospital but deeo down we both knew that Amelia was just too tiny and there would be nothing they would be able to do. Amelia Grace was stillborn on 3/11/08 at around 2 a.m.. She was very tiny- around 12 oz. & 11 inches long, but she was perfect & beautiful. The doctors told me after Amelia was born that I had had a placental abruption, which is a result of high blood pressures during pregnancy.
The last 3 months have tested us beyond anything Husband and I could have imagined. We have cried and yelled, sometimes we have taken it out on each other, we have questioned every belief we thought was unshakeable. And we have loved each other more that we ever thought we could.
The greatest desire in our hearts that we have always been sure of is our desire to have a family. The doctors told us that it would be gravely dangerous for me to get pregnant again before I get a kidney transplant. And for the last 3 months, we have had very little information and sometimes very little hope. We didn't know anything about the transplant process and how long it might be- we didn't know if I would be sitting on a transplant list for years, or if we would ever be able to have the family we have dreamed about.
But we have finally gotten things in motion with the Mayo Clinic here in Jacksonville, and I am now on my way to getting on the national transplant list! We began all the testing and consultations yesterday, 6/24/08. I have decided to start this blog so I can keep family & friends informed while we take this journey together.
I must say that i have the BEST family and the BEST friends anyone could ever hope for. One positive thing about this whole experience is that we have come to see how much love and support we have. We have been just amazed by the kindness and selflessness of the people we know and love. I cannot say this enough- I don't know how we could have gotten through any of this without all of you.
So, our journey is really just now beginning. Please continue to keep us in your thoughts and prayers. There are still many obstacles along the way.
All our love,
Erin & Rick
I have had high blood pressure for a few years now, but because I responded so well to the meds my primary care doctor prescribed for me (Divoan), I never really thought anything of it. He also sent me for some bloodwork which unfortunately I never got done. I used to have a terrible fear of needles. I wish now that I had done what he asked, but hindsight is 20/20.
My husband & I found out we were pregnant just before Thanksgiving '07. It was a 'sort-of' planned pregnancy, but we were beyond excited! My doctor of course switched my meds right away to something for blood pressure that was pregnancy-approved. I started on Aldomet in a low dosage. In the following 2 months, they increased my dosage a few times and it seemed to be working OK.
The first week of Jan. '08, I started feeling badly, and my blood pressures at home were really starting to elevate. By the end of that week I was consistently getting readings of around 180/120. We were pretty scared so of course we called our OB. Over the next 2 weeks, they added a couple meds to my regimen. But after those 2 weeks and I didn't really respond, my OB was very concerned. I was also spilling large amounts of protein in my urine, but seeing as I was way too early in my pregnancy for preeclampsia, she had a feeling something else was going on.
I was admitted to the hospital on Jan. 8 '08 for testing and observation. They also started me on some IV meds to try and get my BP under control. I met with a nephrologist (kidney specialist) who suspected that I either had lupus, or FSGS (focal segmental glomerulosclerosis). In order to be sure, a kidney biopsy was ordered. For the record, it was no fun!!!
The biopsy results showed no lupus, but positive on FSGS. FSGS is, simply put, kidney disease.
http://en.wikipedia.org/wiki/Focal_segmental_glomerulosclerosis
http://www.nephcure.org/Info_aboutfsgs.html
They're not really sure what causes it, it can either be genetic, or it just happens randomly. FSGS basically scars the kidneys and leaves permanant damage. My biopsy showed that my kidney function was hovering just above 20%. Turns out that my reduced kidney function is what had been causing my high blood pressures fot the last 2-3 years.
We were also told that after the baby was born, I would need a kidney transplant. Pretty scary news... Husband and I were completely overwhelmed; our whole world got turned upside-down in a matter of a few days. Everything that we had planned for our futures was now uncertain.
I left the hospital after 10 days, and was sent home on total bed rest for the rest of my pregnancy. When I was discharged, I was 13 weeks pregnant. The high risk OB told me that getting our baby here safely would depend on keeping my BP under control, but even that was not a guarantee. We found out shortly after this that we were having a girl, and we named her Amelia Grace.
When I was almost 21 weeks pregnant, I woke in the night to terrible contractions that were almost immediately back to back. Within 5 minutes my water broke; we rushed to the hospital but deeo down we both knew that Amelia was just too tiny and there would be nothing they would be able to do. Amelia Grace was stillborn on 3/11/08 at around 2 a.m.. She was very tiny- around 12 oz. & 11 inches long, but she was perfect & beautiful. The doctors told me after Amelia was born that I had had a placental abruption, which is a result of high blood pressures during pregnancy.
The last 3 months have tested us beyond anything Husband and I could have imagined. We have cried and yelled, sometimes we have taken it out on each other, we have questioned every belief we thought was unshakeable. And we have loved each other more that we ever thought we could.
The greatest desire in our hearts that we have always been sure of is our desire to have a family. The doctors told us that it would be gravely dangerous for me to get pregnant again before I get a kidney transplant. And for the last 3 months, we have had very little information and sometimes very little hope. We didn't know anything about the transplant process and how long it might be- we didn't know if I would be sitting on a transplant list for years, or if we would ever be able to have the family we have dreamed about.
But we have finally gotten things in motion with the Mayo Clinic here in Jacksonville, and I am now on my way to getting on the national transplant list! We began all the testing and consultations yesterday, 6/24/08. I have decided to start this blog so I can keep family & friends informed while we take this journey together.
I must say that i have the BEST family and the BEST friends anyone could ever hope for. One positive thing about this whole experience is that we have come to see how much love and support we have. We have been just amazed by the kindness and selflessness of the people we know and love. I cannot say this enough- I don't know how we could have gotten through any of this without all of you.
So, our journey is really just now beginning. Please continue to keep us in your thoughts and prayers. There are still many obstacles along the way.
All our love,
Erin & Rick
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Rick & Erin at the Biltmore House, Christmas '09