[Missumom]

Kidney biopsy gone wrong

by Missumom on Thu Oct 01, 2015 9:46 am

It all started as my mother had some abdominal pain and was starting to feel weak. My mother and I assumed it was from the side effects of her new medicine she was taking. This medicine was apo-risedronate after she was diagnosed with osteoporosis from her physical back in January. Asides from her osteoporosis, she had no other health issues as all her lab work came back fine according to her family doctor.

So since she was feeling weak and had some abdominal pain, I figure I would take her to the hospital to get looked at. A couple of hours pass by as they performed a ct scan to rule out any stroke and they also did some blood tests. The blood test results came back and the two things the doctor said right away were low hemoglobin and high creatinine. As a result the doctor said my mother had to stay behind in the hospital for further testing and hoping for the best, I assumed my mother had some minor anemia which would be easily fixed. So in the next few days the doctor did some more blood tests and told us that he thinks it could be multiple myeloma. At that point I was just in complete shock with some tears in my eyes but then again I was optimistic as the doctor said could. As for my mother, she never heard of myeloma before as English is not her first language but I did not explain to her what it was exactly. Instead I told her she had some condition in her blood which was treatable as I figured she would be really devastated but I was planning to tell her later with the rest of my family.

So the next day comes and the doctor said he would perform a bone marrow biopsy and the results did indeed find that she had multiple myeloma. Again I was in a state of shock and after I realized what she had, tears were starting to form. The doctor did try to reassure me that at least it was treatable and from that point on I accepted reality and was starting to calm down. The oncologist was already starting to discuss as to what type of treatments would be suitable for her. He had mentioned cybor-d as well as maybe a stem cell transplant.

In the mean time the nephrologist had seen my mother and said she could potentially have amyloidosis as well due to her myeloma. So the nephrologist recommended a kidney biopsy in order to see if there was any amyloid. The doctor explained to us the exact procedure to the biopsy stating that it is a routine common procedure with little risk. So after hearing the doctor's explanation, my mom agreed to do it. I was with her the morning she did it and when it was done, they said the ultrasound showed the procedure went well. As a result, they put her back in her hospital room and gave her some Tylenol for the pain she was experiencing. An hour passes and she is still in tremendous pain and I ask the nurse if there is anything she could do. Her answer was wait a little longer and maybe the pain will subside. So I'm at my mother's bedside and she is still in agonizing pain so I figure I ask the nurse again and this time the doctor had prescribed hydromorphone. So my mom takes the medication and within a couple of minutes she falls peacefully asleep. I was finally relieved as my mother was not in pain anymore and decided to leave her bedside to take a break. I come back two hours later to wish her good night with my sister and she is still peacefully sleeping. So I tell my sister lets go as we did not want to disrupt her peaceful sleep after all the pain she has been through that day. Just when my sister and I were about to leave, we noticed her breathing pattern was slightly off. Then all of a sudden her breathing got so worse as if she was choking. Trying not to panic, I rush out to the hallway and grab the first nurse I saw. After seeing what the nurse saw, she immediately notified the ICU within the hospital and in the mean time other nurses were working on her along with a respiratory therapist. Until they got her breathing somewhat stable in about 5 minutes or so, they admitted her in the ICU. While my mother was in the ICU, the nurses asked that we wait outside in the waiting room. Two hours pass by and then the nurse called my sister and I to see our mom. It was painful to look as she had a breathing tube along with a feeding tube and all sorts of medicine being fed intravenously. But, at least I was rest assured that she was at least stable nonetheless still very critical.

The doctor said that my mother had suffered massive internal bleeding from the renal biopsy after performing a ct-scan. The doctor also said the bleeding should stop on its own with the help of some coagulants. However it was determined that the bleeding would not stop and that surgery would be further required. So after the surgery the bleeding did indeed stop but her kidneys also stopped working and as a result, my mother needed continuous dialysis.

Week one goes by in the ICU and my mom is slowly recovering as she is now more alert as her fentanyl has been slowly weaned down. Nonetheless, it was still frustrating as a communication barrier was present, that being her breathing tube. However, we would still communicate through her nodding her head with whatever question I had to ask. Week two goes by and the the doctors are telling me they are happy with her numbers and recovery. I as well am happy too as I figure the sooner she gets out of the ICU, the sooner her chemo could begin. Was that ever false hope as week three begins and she has an episode where her heart beat went up to 250 and had to be shocked six times in order to put her heart back into rhythm. I was terrified once again but optimism kicked in again as she was stable once again. Stable yes, but even with more medication being introduced such as levophed and vasopressin. Week four begins and it just hit me that my mother does not look the same as I just realized at much weight she had lost. I felt so sorry just looking at her and could only imagine what it's like to sit in a bed for a month. To help her immobilized state, my sister and I did what we could as we moved her joints from time to time giving her the illusion that she was somewhat in motion.

Just when things couldn't get worse, she eventually developed pneumonia by the end of week four. To my surprise, she put up a fight with the help of antibiotics and her pneumonia had gone away but she was still very weak. Again, I am being optimistic thinking she will get out of the ICU at a baby step rate. But another infection got to her by week six, this time in one of her pic lines. So again she was put on antibiotics but this time she put up an even bigger fight and to my surprise she even surpassed this hurdle. Week 7 starts and my mother looks much more weak. In fact, she is so week she doesn't even respond to me with the nodding of the head anymore. Not to mention, her eyes were always closed as if she was always sleeping. The doctors said her not responding is possibly due to having zero reserves left as she depleted all her reserves from battling the typical ICU infections. I was not giving up as I wanted see her beautiful eyes open up once again. So for a couple of days, I would try and get her to respond by touching her and speaking gently in her ear.

The end of week seven approaches and she is still unresponsive. Her unlucky streak continued as she had another episode with her heart gong out of rhythm. Her blood pressure was just dropping and the docters decided to give her levophed and vasopressin to the max. Bad news was nowhere to be stopped as the doctors told my sister and I that this could be her last night. So my sister and I decided to spend the whole night assuring our mom would have company to the very end. I was holding my mother's right hand and my sister was holding the other just talking to her peacefully as hearing they say is the last sense to go. As we we were talking to her, I couldn't help but look at her numbers on the screen. They were not good as her blood pressure was slowly dropping even with her meds maxed out. Slowly and lingering, her numbers kept dropping until I looked at the screen to see a flat line. I was still holding her hand as she passed away peacefully realizing that her body had accepted defeat from all of her myeloma complications. It was this past September the fourth when she passed away, only 55 days after her diagnosis. She had put up such a fight but in the end lost to a so called simple routine kidney biopsy. You might be gone mother but you will never be forgotten and may your soul rest in peace.

I must say that I am very frustrated as she was never given a true chance to battle her myeloma. My question is do all people diagnosed with multiple myeloma undergo a kidney biopsy to check for amyloidosis? Asides from a biopsy isn't there another method of checking for amyloid? Also, is it true that one has to be closely monitored after a renal biopsy? Because if so she was not closely monitored other than a nurse coming every hour just to check her blood pressure. My sister and I were the ones watching her and caught her breathing abnormally in her sleep. If we weren't there, who knows if she would have made it to the ICU. Once again, I can not express how frustrated I am. I feel like my mother was cheated. Why couldn't they just give her some chemo first instard of the biopsy. I then asked the doctor for the results of her biopsy and he said she had no amyloid. I was devastated to hear that as they just took her life away needlessly over a biopsy to only reveal she had no amyloid to begin with. I feel cheated as well as I was never given a chance to research anything about myeloma. My goal was to research everything I could about myeloma in order to help my mother battle it. Instead I lost the battle as well over a so called simple kidney biopsy. To think they had intentions of doing a heart biopsy, who knows what would have gone wrong.

[reece93]

Re: Kidney biopsy gone wrong

by reece93 on Thu Oct 01, 2015 11:14 am

I am so sad reading this truly heart breaking story. I don't know if kidney biopsies are used routinely to check for amyloid as I've only had experience with my husband's situation. They tested him with a fat pad biopsy from his abdomen.
My prayers are with you in dealing with the loss of your mom.

[3334]

Re: Kidney biopsy gone wrong

by 3334 on Thu Oct 01, 2015 12:38 pm

Your mother's experience sounds devastating and sad.

My kidney biopsy was ordered because of a 24 hour urine protein greater than 2000 mg along with other symptoms of AL amyloidosis.

Much peace, comfort, and loving memories of your Mom.

[sharon67]

Re: Kidney biopsy gone wrong

by sharon67 on Thu Oct 01, 2015 2:20 pm

This is heartbreaking, I am so sorry. I have recently been diagnosed with myeloma and was also told that before they started chemo they wanted me to have a kidney biopsy.

I had this 2 weeks ago today. I just wanted to say that afterwards I had to lay flat on my back for 6 hours and wasn't allowed to move. Was your mum moved afterwards? I'm in the U.K. I haven't had my results yet.

From Sharon

[Missumom]

Re: Kidney biopsy gone wrong

by Missumom on Thu Oct 01, 2015 6:05 pm

Hello Sharon,

I am so sorry to hear about your diagnosis. I am so happy that your biopsy went well. As for my mother, they just put her back in her regular hospital room and let her lie down in any position she was comfortable in. However, I do recall her tossing and turning trying to find the right position.

Did they suspect you have amyloidosis before the biopsy? Or did they perform the biopsy simply because of your myeloma thinking that you had amyloidosis? Also, were you monitored after your biopsy?

Anyways, hope your results go well and all the best to you.

Gus

[JPC]

Re: Kidney biopsy gone wrong

by JPC on Thu Oct 01, 2015 8:54 pm

Hello Gus:

Thank you for sharing this very, very difficult situation. As you described, the breaks did not fall your way. Your story, however, is an inspiration to us all as to conducting yourself in such a difficult situation. Your mom, your sister, and yourself are all heroes. God Bless you all.

[sharon67]

Re: Kidney biopsy gone wrong

by sharon67 on Fri Oct 02, 2015 5:13 am

This is the first time I have heard of amyloidosis. I had no problem's with my kidneys until early this year, when they deteriorated very fast to stage 4 CKD. My specialist requested the biopsy and said she wouldn't start any treatment until the results were through.

I do worry that your mum was allowed to move around as they were very adamant that I lay still and flat on my back. I had ops every 15 minutes for the first hour, then every half an hour.

[ricapr]

Re: Kidney biopsy gone wrong

by ricapr on Sun Nov 29, 2015 1:48 pm

Hi. Sorry for your loss. This story made me feel worry about it.

My fiancé and I living together almost 13 years. His doctor tell him that he need to have done a kidney biopsy to determine what kind of inflammation he have. The doctor think that he have nephritis because he have too much protein in his urine and is necessary to have the biopsy done as soon as he can. He is very afraid to do it because always he is nervous to do any kind of procedure at the hospital because he don't like to go because he feel that he not need too.

He is only 32 year old, very healthy, productive man. He wants works all the time because he love paint and remodeling houses a lot. He don't want to do it because the doctor told him that he need to stay at home resting at least 3 weeks and he don't want to stay too long at home without working.

Now I read this story and I afraid to continue motivating him to do it to find out what it is, so the doctor can put him in the right medication to continue with his life. The doctor explain to us the risk after biopsy he need to stay at least one night to monitor him all night. Before I read this, I already decide to stay with him that night so he feel more relax so he can stay comfortable to see me there. I love him too much I don't want him to go over too much stress when he decide to do it at the hospital.

The doctor told us that is the only procedure to find out. What can i do? I don't want him to go negative to the procedure. I am confident with Lord Jesus that everything going be ok with him, Please pray for us. I am really appreciated . Thank you for your support and take the time to read this.

Afraid in Florida!

[MMFeb16,15]

Re: Kidney biopsy gone wrong

by MMFeb16,15 on Tue Dec 01, 2015 8:09 am

Dear Missumom,

I am extremely sorry to hear about your mom. It appears to me that the physician and hospital did not take it seriously. Are you in the USA?

I am 67. Got diagnosed in February with Stage IIA myeloma.

May God bless her soul. RIP.

[Little Monkey]

Re: Kidney biopsy gone wrong

by Little Monkey on Tue Dec 01, 2015 8:43 am

I believe she is in my neck of the woods – Southern Ontario, Canada