I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on July 19, 2011, 08:10:38 AM
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Jenna has just told me she's having pain in her native kidneys. She had pain in her transplanted kidney about 4 weeks ago and the doctors had her take a round of antibiotics which seemed to relieve the symptoms. A couple of days ago Jenna thought the back pain was related to her menses, which is not unusual for her, but it's typically gone after the first day, and this has not stopped. She has never had discomfort in her native kidneys, even when they first failed 10 years ago, and through 3 years of dialysis and 4 1/2 years of her current transplant. This is the first time. We are trying to reach her nephrologist.
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Sorry to hear about this latest complication, Karol. My native kidneys were taken out at transplant, so I have no helpful experiences to share. I do periodically get pains in my transplanted kidney (the first one) and have done for as long as I can remember. I hope the antibiotics are the answer, but smart of both of you to call in to the nephrologist.
Good luck.
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I've always had some pain in my kidneys (well, at least since I was a teenager) and it's something now I just have to live with. I've had every test imaginable over the last 40 years and they have always been negative. Even though in my case no specific cause was found (it's probably a symptom of my IgA Nephropathy), it could be the result of narrowing of the artery leading into the kidney. Combine that with elevated BP and it's going to cause pain. I had ultrasound on both kidneys last year just to check for that specific possibility and again the test showed the blood flow was adequate. I'm pretty ignorant on the detailed medical stuff so I'm just relating what I remember the best I can.
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I'm sorry this has to even happen to Jenna. At least she told you. Sometimes you just pretend it is not happening. I hope it is nothing. Keep us posted and hugs.
:grouphug;
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okarol I hope you are worrying about nothing, but you are right to get it checked out. Lots of love.
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Whenever mine hurt, it is because my hemoglobin is low.
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I'm sorry this has to even happen to Jenna. At least she told you. Sometimes you just pretend it is not happening. I hope it is nothing. Keep us posted and hugs.
:grouphug;
She waited 3 days, which is short for her so it must really hurt. I gave her arthritis strength Tylenol so she is a little better.
Still waiting to hear from doctor.
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I have pain in my kidneys a lot, but if its a sharp pain I always talk to my neph because it could be an infected cyst. I think I remember that your daughter has PKD. If it's an infected cyst, it can cause sharp pains. Keep us updated.
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Please do let us know what you find out. I'm sure this is very worrying for all of you. :cuddle;
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Yes, hopefully he calls soon.
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I have pain in my kidneys a lot, but if its a sharp pain I always talk to my neph because it could be an infected cyst. I think I remember that your daughter has PKD. If it's an infected cyst, it can cause sharp pains. Keep us updated.
Actually Jenna has kidney disease due to a bad bladder (although others in my family have PKD.)
The doctor emailed me from Indonesia! He will be back on Thurs and wants to talk more about the symptoms.
She's been taking tylenol and seems ok for now.
:thx;
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I have pain in my kidneys a lot, but if its a sharp pain I always talk to my neph because it could be an infected cyst. I think I remember that your daughter has PKD. If it's an infected cyst, it can cause sharp pains. Keep us updated.
Actually Jenna has kidney disease due to a bad bladder (although others in my family have PKD.)
The doctor emailed me from Indonesia! He will be back on Thurs and wants to talk more about the symptoms.
She's been taking tylenol and seems ok for now.
:thx;
Sorry! That's what I get for not doing my homework before posting. I remembered reading about your family having PKD and jumped to conclusions. Glad the tylenol is helping.
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Now the pain seems to be more on the right side. Can you get a kidney stone in a native kidney even thought you've got a transplanted kidney too?
My husband made a good point. I was relieved that Jenna doesn't have a fever, but he said the immunos keep a fever from rising and doing what it would normally do to fight an infection, so it could be a misleading clue.
Her labs from last week are fine. Her creatinine is 3.1.
Her local neph returns tomorrow and she has a routine visit with her neph in San Diego on Monday. I am not sure what to do...
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I wouldn't know what to do either except I think I'd try to see both nephs just to cover all bases. I've never had pain in my native kidneys and they've been so useless for so long. My understanding is that the native kidneys can atrophy quite a bit but since blood still goes to them that leads me to wonder if a small blockage or stone or whatever could cause pain. If the pain is shifting sides, could it be an issue with referred pain, like a pulled muscle or something in the lower back.
Hope it can get sorted soon...you both have enough on your plates. :grouphug;
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can she lay on a heating pad to help ease the pain until she gets to the doc? sometimes I use icy hot too. I try not to take pain pills if I can help it. I really hope this gets figured out. Praying for you Jenna girl!!!
xo,
R
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The pain seems to come and go. We spoke to both hospitals and after looking at the labs from last week the doc said to start her on tetracycline as this bug is resistant to the other meds she took before. Last night the pain moved from her back to her transplanted kidney. Jenna is never in pain, she can tolerate a lot, so having her hurting is especially disturbing. She started the meds yesterday afternoon, but isn't any better. She was so uncomfortable her dad gave her a vicodyn this afternoon, the pain being in her back again. She has a fever of 99, which could be a lot for an immunosuppressed patient. Her BP is up a bit. She doesn't seem to have an swelling.
ARRRGHHHHHHH! I don't know what to do. It's Friday night and I am afraid she may need to go to emergency if it doesn't improve. Our local hospital does not do transplants, and we are NOT willing to let her go to the hospital where they've been working up her evaluation (more about that here http://ihatedialysis.com/forum/index.php?topic=20615.0) - we have lost confidence in them. So the closest place is about 40 minutes drive (with no traffic.) I am prepared to go. We don't know any doctors there, but they have a good rep for transplants. But it's the weekend - which is bad news for emergency visits. Her transplant hospital that prescribed the meds is 2 hours drive away. She's got an appt. there on Monday. I pray she hangs in there til then. :pray;
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I keep my fingers crossed,
best wishes from Kristina. :grouphug;
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This all sounds awful for poor Jenna. I will be keeping her in my thoughts, please keep us updated so we can be there for you both.
*big hug*
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Dear Karol and Jenna,
I am not sure whether this might help,
I just mention these ideas because I feel they have helped me a little.
I still have my own kidneys, but I have long suffered from severe kidney-pain,
which made me shiver, having temperature and I also felt a terrible draft on my kidneys
I have never received any diagnosis for the pain
and have been told by doctors years ago, it is “just in my imagination”.
For many years I have tried desperately to find some way of easing the severity of the kidney-pain
without the intervention of conventional pain-killers which, I have been told,
would damage my poor kidney-function even further and this I must avoid at all costs.
For the past few years I have been using small “angora”-kidney-warmers
which you step into and pull-up to cover the whole kidney area.
I wear this garment constantly and it keeps my kidneys cosy and warm
at a constant temperature, day and night.
Since using this, my kidney-pain has almost gone completely
and so has the shivering, the temperature and the feeling of a draft on the kidneys.
One can never say definitely that this garment has had an effect
but it is a coincidence that the pain eased after using the garment and therefore I keep on using it.
I have several of these angora-kidney-warmers and use them in rotation
because I wash them regularly and always use a different one at night.
I also have a freshly squeezed lime in a glass of water each day
and, I think this has helped me also.
Best wishes and good luck from Kristina. :grouphug;
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Are things any better? Prayers for you, Jenna and the family. :grouphug; :grouphug; :grouphug;
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She is still in pain and her dad gave her a vicodyn last night. Her back hurts a lot but she's taken arthritis strength Tylenol so hopefully that will help. She called the local neph here and he said perhaps she needs another ultrasound. But since she'll be at Scripps on Monday I think he feels they will handle it there. We are waiting to hear back from the Scripps neph. I am trying not to freak out but I have this deep dark feeling of impending doom. :(
The good thing is she seems to be able to eat ok. That always makes a mom feel better.
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Gosh, I really hope everything is going to be OK. I'll be praying really hard for all of you.
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The neph called back. He doesn't really have a solution. Not sure if she should we do labs tomorrow? She says she hurts too much to sit through the drive to La Jolla. Going to the ER seems crazy tonight. She may need a pik line and vancomycin. Her temp. is normal, her BP is ok, her urine in ok, her weight is the same, no swelling anywhere. Just pain in native kidneys and occasionally in transplant. Dr. told us to call the neph on call if Jenna needs to be admitted. It's left up to us to decide. :stressed;
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A friend said this sounds just like her husband's kidney stone pain.
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Kidney stones are super painful from what I've heard and it can move around too....OK. now let's get it gone! :grouphug;
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I'm sorry to hear she is having the pain and I hope it gets cleared up soon. I've heard the stones are bad pain as well.
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My brother had 2 kidney stones and was in a hell of a lot of pain. I think Jenna would have demanded something be done way sooner if it was kidney stones, unless she's got the pain threshold of a... a... umm.. stone?
In a situation like this I would ALWAYS err on the side of caution. I'd rather go to ER and feel like a fool if it's nothing much than NOT go and have something going bad that culd potentially be treated better the sooner it is caught.
If you're worried, even for peace of mine surely it makes more sense to get her checked out?
Just my 2 cents.
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She's been in bed for 2 days, pain for 7 days. I may have mentioned that she's got a very high pain tolerance, so this must really hurt. She is still eating ok, urine output good, temp and bp stable. Called the local neph and he said "Let's get an ultrasound and labs first thing in the morning." He knew we wanted to avoid going to the ER or admitting her because the hospital is not a good place to be on weekends. Maybe it's just bad luck, but our experience is that contract nurses and very few doctors are around on weekends, and nothing happens until Monday morning. I hope Jenna can get a good night's sleep and we will go to the hospital tomorrow.
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There is not much longer to wait, and i hope you find answers very soon. Do keep us informed as we will spend most of tomorrow awaiting news.
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Hope you go on OK. You are right about week-ends, it is the same here i n the UK do not get ill over the week-end.
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Caution - long rant :rant;
Jenna had labs and ultrasound. Her pain is unrelenting. Did not see a doctor and we are home now waiting for results.
I almost starting yelling at people and started crying twice. Am I expecting too much??
The neph was doing us a favor by ordering these tests (I guess they're called "add ons" because they aren't scheduled appts.) He said go in and the nurse will arrange everything. We signed in and they said "You're not on the schedule." Jenna explained. They said maybe we were supposed to go to the hospital (adjacent to internal medicine.) No, Jenna explained, again.
They finally called the nurse and she brought a lab order with blood & urine labs and a renal ultrasound for native and transplant kidney. She sent us to the hospital (why? I asked, you have a lab and image lab here.) "It's faster over there." said she. Yeah, right.
We go to hospital across the parking lot, to admitting. "You're not scheduled for anything." Yes, Jenna explained. Blank stare. "Oh well let's see if we can add you on." Calls radiology. "No I am sorry, they are backed up all day. Have you tried across the street?" Ummm that's where we started. So turns out their lab can take her as an add on, but not the ultrasound.
OK lab is slow but gets it done. While waiting I looked at the sheet of those little stickers with barcodes that they use of every paper they handle and saw a name under Jenna's that I did recognize. When we got over to radiology I asked at the desk about it. The guy said, that's the name of the doc that ordered the tests. No, I said, that's not him. As it turned out, the name belongs to the transplant teams psychiatrist - not her nephrologist! Ooopsie. Hope she doesn't get the results instead of the neph!
After a long wait, while Jenna is in pain and barely able to sit, she gets called in. The tech begins the ultrasound and I occasionally ask him a question. I know they aren't supposed to give a diagnosis, but I am interested in what he's looking at. Jenna cannot see the screen so I asked if he would be able to see a kidney stone if there was one. Yes. I am sitting 5 feet from him but he speaks so quietly - I say "Either I am going deaf or you have the quietest voice I have ever heard." No response. After awhile I asked if he could see all 3 uretors. He said it depends on what they did in the surgery. Huh? They didn't touch her native kidneys. All they did was add a kidney, hooked it into the renal artery and the uretor was hooked up to the bladder. His response, "Well, then, you know more that me." Ugh! He spent a good 45 minutes on her. I finally asked if he saw any blockage or obstruction and he whispers "You'll get a report from your doctor." Uh huh. "Her doc is not here, but do you see ANYTHING LIFE THREATENING??" He did not answer. Grrrr Get me out of here. He did say he'd make a copy of the scans on a CD. We got that after about 15 mins. I asked Jenna if she could hear the tech speak, and she said it felt like she needed to claen our her ears, she couldn't hear him either.
I have to say I am grateful that her neph was able to arrange this. It only took 4 1/2 hours, as opposed to an emergency room, where we might still be waiting.
We came home and gave Jenna 2 vicodyn. She had one a few days ago and said it didn't really help, but 2 made her feel the best she has all week.
---LATER ---
Sooo... 4 hours later and the doctor just called. He told Jenna thats the ultrasound of her native kidneys, and her transplanted kidney, all are fine. And her blood and urine labs look good too, no elevated numbers or abnormalities (besides her low GFR, but same as it's been.) So there's no explanation for her last 8 days of pain. He said to take pain meds and hopefully it will go away in the next few days. I don't know if we should be relieved or cry. I feel like it's a weird dream that I can't wake up from.
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Well, like you, I don't know whether to be relieved or not. ???
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Hopefully she'll be free of pain soon, I've always gotten techs to tell me what they saw, but they also will say the doctor will know more.
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I reckon after over a week of pain and no obvious explanation from THIS doc that perhaps a second opinion should be considered? i mean clearly SOMETHING is wrong and poor Jenna needs some relief. Just putting a band-aid on it (pain meds) and hoping it will go away of its own seems a bit lax to me. Yes, I understand that if the labs and U/S show nothing obvious then that seems good, but something must be causing the pain and I'm not so surw I could rest easy just on those results (and of course poor Jenna can't rest easy from the pain).
Having written that I certainly hope it does go away sooner than later!!!!
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I'm not even there and I'm frustrated as hell. Poor Jenna, and this is no picnic for you either. :grouphug;
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I'm not there either, but say the word Karol and I will fly in, evacuate the area, burn the place to the ground, and salt the earth as I depart. (Salt prevents a new renal hospital from sprouting up, right? :laugh:)
This is unadulterated crazy. And Jenna is only marginally better off than before the appointment, which is the sure mark of a time wasting exercise. I have been having symptoms of a UTI and intermittent pain near my original transplant and in my back (phantom native kidney pain?) so I read up on monrein's story because I wanted to compare symptoms and see if I had to revisit the idea of a nephrectomy. Correct me if I'm wrong, monrein, but it seems that they were not able to find anything wrong with your original transplant, but took it out anyway because they still suspected that that was where the problem lay? No one wants to see Jenna have to undergo surgery, and I am not a doctor nor medical professional of any kind, but I would say give it as much time as Jenna can stand, and then take them out if she is not on the improve. Something is terribly wrong, so I would go get the second opinion that Richard suggested and find that doctor with enough sense to say "I don't know what is going on here, but I am going to find out".
Gentle hugs for you and Jenna. :grouphug;
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Last night my I was talking to my hubby about what to do next. Apparently the doctor told Ed that it still could be a kidney stone, possibly in one of her native kidneys. That's pretty funny, since I asked the ultrasound tech if he'd be able to see a possible stone and he said yes. But others have told me that xrays or ct scans are what are best for diagnosing them. Jenna's taking vicodin every 4 hours (and stool softeners too.) She's drinking lots of water. I hope it clears up, whatever is wrong. I'll give it a few days, and we will keep looking for answers in the meantime.
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okarol, Some times I wonder if the Docs know what they are doing. Clearly some thing is not right. Getting second opinions is not always easy. Stick this out, hope Jenna is feeling a little more comfortable.
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I would go for the scan, but that would also mean she'd have to inject dye...
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request the scan without the dye
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I haven't posted because each day I hope the pain will be gone, but it's not. Jenna has been taking vicodin and resting. It's the weekend AGAIN and she's basically the same - with perhaps a tiny bit less pain. It's wearing on her spirit, she says it feels like it will never improve. Eleven days and we have no idea what's wrong. I emailed the transplant surgeon and he said it seems unlikely that an ultrasound would miss a kidney stone. The neph down there is impossible to reach, and frankly I am not all that impressed with his skills. The local neph is semi-retired and hasn't answered my email from Thursday. He is not in the office everyday and does not seem to have an on-call doc.
Part of me is saying WTF - what could be wrong with her?? :(
Another part is screaming -- we NEED to take a GOOD look her care - it all seems to go to hell now that there's a challenge.
She's got a little fever 99.6 - her BP is 145/95 and she's lost a little weight. What good are all these numbers? No one has examined her.
I think I need a vicodyn. :urcrazy;
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This is a long shot, but I thought worth mentioning. What if it's not her kidneys? Because of her medical history, it's natural to go straight to the neph, but what if it's her gall bladder? I've had several friends who have had gall bladder attacks. The pain manifested somewhere different for each of them. One of them had chest pains, 2 had pain in their lower back, and one had pain in their side. Anyway, just a thought. Hope she feels better soon!
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I am stunned that more isn't being done for Jenna by her medical team. I am so, so sorry that she is suffering so much. She can't stay on Vicodin forever!
I've had gall bladder attacks that could blow up the Death Star, and what Jenna is experiencing doesn't sound like the same thing. Gall bladder attacks classically last for 3 hours, not 3 weeks. But I could be wrong and brandi1leigh's theory could be worth mentioning.
Please let us know the instant you find out anything because we are very curious as to what this could possibly be.
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:grouphug;
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This evening her BP is better, no fever, weight stable and just having occasional pangs of pain - no vicodin since last night!
MM - we need to reassess her medical care. She's in limbo because the transplant team is far away and since the US and labs were ok, they sort of backed off. Local doc must be on another European sojurn and not able to respond.
:waiting;
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This evening her BP is better, no fever, weight stable and just having occasional pangs of pain - no vicodin since last night!
MM - we need to reassess her medical care. She's in limbo because the transplant team is far away and since the US and labs were ok, they sort of backed off. Local doc must be on another European sojurn and not able to respond.
:waiting;
Well, that's a bit of good news! I'm glad to hear that.
Yes, it does seem like y'all may need to reassess. I can understand you all not feeling particularly secure with the present situation; her medical team just seem so far away, both physically and psychologically! Do you have a plan in mind? What does Jenna say about "reassessing"?
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This evening her BP is better, no fever, weight stable and just having occasional pangs of pain - no vicodin since last night!
MM - we need to reassess her medical care. She's in limbo because the transplant team is far away and since the US and labs were ok, they sort of backed off. Local doc must be on another European sojurn and not able to respond.
:waiting;
Well, that's a bit of good news! I'm glad to hear that.
Yes, it does seem like y'all may need to reassess. I can understand you all not feeling particularly secure with the present situation; her medical team just seem so far away, both physically and psychologically! Do you have a plan in mind? What does Jenna say about "reassessing"?
Jenna scheduled a meeting for us with the transplant coordinator and psychiatrist this week. She wants to have a serious discussion, and then move on I think. Since her PRA is likely to remain high, she may explore desensitization, which is not available through either of her current hospitals.
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Good for her! I'll be really eager to hear what she learns.
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I am stunned that more isn't being done for Jenna by her medical team. I am so, so sorry that she is suffering so much. She can't stay on Vicodin forever!
I've had gall bladder attacks that could blow up the Death Star, and what Jenna is experiencing doesn't sound like the same thing. Gall bladder attacks classically last for 3 hours, not 3 weeks. But I could be wrong and brandi1leigh's theory could be worth mentioning.
Please let us know the instant you find out anything because we are very curious as to what this could possibly be.
Sorry you've had to deal with that MooseMom. Sounds like you know more about it than me. I was just trying to think outside the box. There has to be a cause for the pain! I knew the gall bladder was a long shot. Here's another one (and this one I have first hand knowledge of). 7 years ago, long before I was diagnosed with kidney disease, I had an attack of pancreatitis. I hesitate to even mention it, because it's pretty rare in someone as young as Jenna. I had it at 28 and thought the doctors' heads were going to explode. But I had some similar symptoms to Jenna. Low grade fever that came and went. Constant pain, although it did come in waves. It was always there but sometimes it was more bearable than others. And I was violently nauseous. Pancreatitis can be caused by a gall stone that lands in just wrong spot, high triglycerides or an infection. (at the time of my attack, the cause of mine was unknown...fast forward several years later and my doctors now think that a cyst on my kidney might have burst too close to my pancreas and made it shut down...at the time I didn't know I had PKD and no one thought to mention it to me, despite numerous ultrasounds etc at the time.)
Anyway, like most of the other posters I second getting more opinions. No one should be in pain, and no doctor should be satisfied until they figure out why a patient is suffering. Especially someone who isn't a chronic complainer. Fingers crossed that you guys get some help and relief soon!
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Hmmm....pancreatitis. That's a workable theory. Sometimes the smart thing to do is think outside the box! I wish more docs would do just that!
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Hmmm....pancreatitis. That's a workable theory. Sometimes the smart thing to do is think outside the box! I wish more docs would do just that!
Agreed! My doctors either attribute every problem I have to my PKD, or they refuse to believe the obvious symptoms are related to my kidneys. For example, I have chronically low hemoglobins. Despite, my hematologist telling my neph repeatedly that I am epo resistant, they keep making go back to the hematologist. The neph tells her it can't possibly be just my kidneys. This led to 3 bone marrow biopsies in 6 months.
Regardless, there has to be a reason that Jenna is feeling so terrible. If the docs won't brainstorm, then I guess that's what IHD is for. Do I really think it's pancreatitis or gall bladder issues or appendicitis? Probably not. But it kills me that when it isn't what they thought it might be, the doctors stop trying to find an answer. If there's no obvious sign of a kidney stone, then why don't they try something else? I'm not suggesting they subject Jenna to a lot of unnecessary tests, but at least consult with another specialist. Try to find some answer. I hate going to the doctor and being made to feel like I'm going crazy because they can't figure out what my symptoms mean. So frustrating.
I'm very glad Jenna seems to be feeling a little better. Hopefully, it only gets better from here.
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Jenna scheduled a meeting for us with the transplant coordinator and psychiatrist this week. She wants to have a serious discussion, and then move on I think. Since her PRA is likely to remain high, she may explore desensitization, which is not available through either of her current hospitals.
Just wondering how Jenna is feeling. :-*
Have you had the meeting? I was surprised to read both hospitals do not have a deseisitization program. It is more common here, but generally only with a live donor transplant. I am not sure of the protocol for the cadaveric wait list. Jenna should be getting better care. :cuddle; Wish I was there to support you Mama Bear, my claws would be flying. xo
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The meeting with the psych and coordinator is tomorrow. Yeah, only one or two hospitals here do desensitization. And it is usually for a living donor transplant - although Vandie was treated and got a match with a deceased donor - so it can happen. Nevertheless, all patients must first be accepted to the UNOS list which governs deceased donors, before they can have any living donors evaluated.
Yesterday Jenna saw an internist who gave her a thorough exam. Of course Jenna was feeling better when we arrived.. isn't that always the way it goes? But the doc poked and prodded and her opinion is that the scar tissue from rejection in the transplanted kidney can cause pain, in combination with pressure in her abdomen (and against the kidney) from her slow moving intestines that may be irritated and the pain is referring to Jenna's lower back. She did actually feel pain at her transplant site, but since the ultrasound shows no kink, narrowing, blockage, fluid collection or stones, it may just be the scarring. So the plan is to take stuff to really clear her bowels and see if it doesn't relieve some of the discomfort. I hope that's all it is. Her creatinine is still nice and steady at 3.1 - so that's a blessing. :)
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Her creatinine is still nice and steady at 3.1 - so that's a blessing. :)
:2thumbsup; Loving those numbers Brave little Bean!
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That sounds a lot more hopeful, those pesky bowels, lets hope it does the trick.
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Just as mysteriously as the pain came, it is now gone.
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I hope this hasn't already been touched upon during this thread because if so I must have missed it.
I was told by my Nephrologist that the kidneys have no nerve endings and what I was feeling must be near them but couldn't be the kidneys themselves. I am a little confused by this since I always have a pain there once or more a day.
Any thoughts on this?
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I hope this hasn't already been touched upon during this thread because if so I must have missed it.
I was told by my Nephrologist that the kidneys have no nerve endings and what I was feeling must be near them but couldn't be the kidneys themselves. I am a little confused by this since I always have a pain there once or more a day.
Any thoughts on this?
The doctor surmised that it wasn't the kidney hurting (after they checked via ultrasound that there was no blockage or fluid build up) but it was possibly the scar tisse, and the bowels, that were hurting, adjacent to her kidney. And radiating to the area of her native kidneys too. But we'll never know for sure.
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I'm so relieved the pain is gone because I know how worried y'all were. What wonderful news!
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stress is over, good news :clap;
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Just as mysteriously as the pain came, it is now gone.
When it comes to the well-being of our loved ones, mysteries suck!
Thank God for both you and Jenna that the pain is finally gone
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Glad to hear that. yay!